My treatment for Sarcoidosis has been progressing, for the most part it has been positive but the side affects of the tablets I have been taking have been a bit much at times. As far as the corticosteroids are concerned, I don't think they themselves have caused any of these, and I don't believe I have had any complications in regards to the immune suppression. The other tablets that are meant to mitigate the effects however, I think have been causing quite a bit.
The most pressing side affect was being caused by Lansoprazole. Taking Prednisolone by itself can cause stomach ulcers, so you need to take an ulcer suppressing drug alongside it to prevent that. Lansoprazole and its related '-prazole' tablets are intended to do this. Unfortunately one of the side affects is that it can cause diarrhoea and I was one of the people that reacted in that way. It wasn't an everyday occurance, instead happening every 3 to 4 days. I'm switching to an alternative called Pantoprazole to see if that is more tolerable. Apparently there is little difference in effectiveness between the -prazole tablets, just that some people tolerate one more than the others. If Pantoprazole doesn't make a difference I think the next one on the list is Omeprazole.
Due to the way corticosteroids work, I have also been told I need to take Bisphosphonate tablets, which prevent osteoporosis - thinning of the bones. I was reluctant to do this because you have to see a dentist before they can be prescribed and I really hate dentists, I had very bad experiences with them as a child and ever since then I have been reluctant to visit them. It had been over 10 years since I last saw one. In that time, never had a toothache, never had teeth sensitive to temperature, and never had a filling. Nevertheless with much despondence I give in and went for a checkup. Thankfully there's nothing pressing as expected, and there's no dentalwork that needs to be done any time soon so I can start the Bisphosphonate tablets.
The Bisphosphonate tablets I have been prescribed are called Alendronic Acid and they are perhaps the most peculiar medication I've ever been given. There are quite a few grim warnings with them on possible side affects, the most pressing being that it disrupts the recovery of bone tissue so any dental problems can be greatly worsened by the tablets if you need dental work done - hence the checkup needed beforehand - and a warning about a condition called Osteonecrosis, which basically means your bone dies and starts rotting inside your body which I googled - I really shouldn't have done that, the pictures that came up were stomach turning.
The most peculiar aspects however are the way you have to take the tablets. For a start you have to take them once a week, on the same day, at the same time, first thing in the morning, with a glass of water, standing up. Yea, that last one raised an eyebrow for me. You have to be standing up when you take the tablets, and you have to remain upright for 30 minutes after, during which time you can't eat or drink or do much at all actually. It does seem a bit like something out of a slapstick comedy routine, half expecting them to say "stand on one leg, hold your nose, count to 10 and swallow"
My Doctor did stress the directions may sound odd but I do have to follow them, so I will do as I am told. First dose of those I will take tomorrow morning.
Running on empty
I've never felt so drained in all my life. That may sound like hyperbole but I honestly believe it is true. Little under 2 weeks ago I started my course of Prednisolone corticosteroids. They started at 30mg and since then I have slept on average 2 to 3 hours per night. The dosage stepped down to 20mg after a week and will stay there for 2 weeks. For one glorious night after the change I slept for 4 hours and thought for a moment my sleep pattern might actually improve, then the next night I slept for an hour.
Sleep was always the one thing you could count on, that no matter how bad everything else got, at the end of the day you would climb into bed and fall asleep and forget everything, and when you wake up, bed would be so enticing in its embrace you'd easily drift off again and sleep longer if you needed. I miss that. Right now I am awake until I can't move, then I fall asleep, and when I wake up it's like I never slept at all. There is no element of rest anymore. I feel constantly drained.
The sensation of being constantly exhausted whilst simultaneously having insomnia is incredibly alien. I've tried to be more active, what little I can, but that's difficult as my breathing problems still persist and the slightest physical activity leaves me breathless so I've tried to fill my time with mental activity that would hopefully expend some of the "spare?" energy I have built up. I add a question there because I am not entirely sure how I am managing not to collapse.
I am eating though, and my appetite is in overdrive. I haven't gained any weight though which is a relief as many people I have seen talking about Prednisolone online seem to complain of that as their main side affect. I honestly don't know if I would swap. Would I take a few extra stone to be able to have a somewhat normal sleep pattern? I don't know, my sleep pattern wasn't exactly completely normal as it was before this all started, and I know if I gain weight I'll regret that in the long run.
As for the actual food, I haven't had takeout since before the course of steroids began; I wasn't explicitly told I couldn't but I think combining fast food, questionable hygiene ratings of restaurants and a weakened immune system would be asking for trouble.
Sleep was always the one thing you could count on, that no matter how bad everything else got, at the end of the day you would climb into bed and fall asleep and forget everything, and when you wake up, bed would be so enticing in its embrace you'd easily drift off again and sleep longer if you needed. I miss that. Right now I am awake until I can't move, then I fall asleep, and when I wake up it's like I never slept at all. There is no element of rest anymore. I feel constantly drained.
The sensation of being constantly exhausted whilst simultaneously having insomnia is incredibly alien. I've tried to be more active, what little I can, but that's difficult as my breathing problems still persist and the slightest physical activity leaves me breathless so I've tried to fill my time with mental activity that would hopefully expend some of the "spare?" energy I have built up. I add a question there because I am not entirely sure how I am managing not to collapse.
I am eating though, and my appetite is in overdrive. I haven't gained any weight though which is a relief as many people I have seen talking about Prednisolone online seem to complain of that as their main side affect. I honestly don't know if I would swap. Would I take a few extra stone to be able to have a somewhat normal sleep pattern? I don't know, my sleep pattern wasn't exactly completely normal as it was before this all started, and I know if I gain weight I'll regret that in the long run.
As for the actual food, I haven't had takeout since before the course of steroids began; I wasn't explicitly told I couldn't but I think combining fast food, questionable hygiene ratings of restaurants and a weakened immune system would be asking for trouble.
Getting Somewhere
My treatment began a few days ago. After my Bronchoscopy I was prescribed a course of steroids, accompanied by a stomach tablet to try and mitigate some of the effects. As I had expected, I was prescribed Prednisolone starting at 30mg which is close to the maximum safe dose of 40mg, after which I will be stepping down to 20mg then 15mg over the first 4 weeks, where it will remain until review. The stomach tablet is Lansoprazole at 15mg, which is where it will stay until Prednisolone ends.
I've never taken steroids before, the experience has been unusual to say the least. I don't understand much about the type of medication and what it does, all I know is that it is a corticosteroid and works by weakening the immune system since Sarcoidosis is an autoimmune disease which causes the body to attack itself and the best way to combat that is to weaken the body's response. I have been advised if I were to take the steroids alone I would likely develop a stomach ulcer hence the need for Lansoprazole.
In terms of side affects, I did have quite bad diarrhoea and stomach cramps for the first two days which are side affects of Lansoprazole, this subsided however. As for recovery from the Bronchoscopy, I was coughing up quite a bit of blood on the day of the Bronchoscopy and the day after, that then turned to a yellowish brown mucus on the third day and has now turned to small amounts of clear liquid much like saliva but with the odd trace of mucus.
The most pressing side affect at the moment however is my sleep pattern, which is well and truly fucked. The Prednisolone advice says that it can interfere with sleep and it is best to take it in the morning time with food, which I have been doing. Despite this, in the last 48 hours I have slept about 3 hours - 2 last night and 1 the night before. The tablets themselves are awkward, they come in doses of 1mg and 5mg nothing else, and since I need 30mg a day initially that means taking 6 tablets at once in the morning with food. I don't normally eat breakfast, I have to be awake for a while before I can eat something without feeling sick, I have always been like that, so that puts a spanner in the works for a start, but the fact I have to take those 6 tablets, and the Lansoprazole at the same time, makes the whole thing awkward, and the cherry on top of the cake is that Prednisolone tastes like shit. It's like the taste of ear wax if you've ever had the misfortune of tasting that.
At least I can be sure they are actually doing something if I am having side affects, they're not just passing straight through me. In terms of practicality and day to day life, I have to avoid anyone that is sick, avoid anything that may cause infection, be careful about what I eat, and I have to carry a card in my wallet that says I am currently being treated with steroids in the event of any injury etc that a doctor must know to continue the dosage as stopping abruptly can cause serious health problems apparently.
I've never taken steroids before, the experience has been unusual to say the least. I don't understand much about the type of medication and what it does, all I know is that it is a corticosteroid and works by weakening the immune system since Sarcoidosis is an autoimmune disease which causes the body to attack itself and the best way to combat that is to weaken the body's response. I have been advised if I were to take the steroids alone I would likely develop a stomach ulcer hence the need for Lansoprazole.
In terms of side affects, I did have quite bad diarrhoea and stomach cramps for the first two days which are side affects of Lansoprazole, this subsided however. As for recovery from the Bronchoscopy, I was coughing up quite a bit of blood on the day of the Bronchoscopy and the day after, that then turned to a yellowish brown mucus on the third day and has now turned to small amounts of clear liquid much like saliva but with the odd trace of mucus.
The most pressing side affect at the moment however is my sleep pattern, which is well and truly fucked. The Prednisolone advice says that it can interfere with sleep and it is best to take it in the morning time with food, which I have been doing. Despite this, in the last 48 hours I have slept about 3 hours - 2 last night and 1 the night before. The tablets themselves are awkward, they come in doses of 1mg and 5mg nothing else, and since I need 30mg a day initially that means taking 6 tablets at once in the morning with food. I don't normally eat breakfast, I have to be awake for a while before I can eat something without feeling sick, I have always been like that, so that puts a spanner in the works for a start, but the fact I have to take those 6 tablets, and the Lansoprazole at the same time, makes the whole thing awkward, and the cherry on top of the cake is that Prednisolone tastes like shit. It's like the taste of ear wax if you've ever had the misfortune of tasting that.
At least I can be sure they are actually doing something if I am having side affects, they're not just passing straight through me. In terms of practicality and day to day life, I have to avoid anyone that is sick, avoid anything that may cause infection, be careful about what I eat, and I have to carry a card in my wallet that says I am currently being treated with steroids in the event of any injury etc that a doctor must know to continue the dosage as stopping abruptly can cause serious health problems apparently.
The best and worst yet
Today was, far and away, the worst so far. If it weren't for the nurses today I don't think I could have got through it. I had my Bronchoscopy this morning, my biopsies, and my lung washing. I was most apprehensive about any needles as that is my biggest fear but that was actually the least unpleasant thing. I had a delightful nurse who knew exactly what she was doing and found a vein with ease, I hardly felt it. I had a cannula fitted to the back of my hand for venus access and for the sedative they would give me.
The most unpleasant thing about the whole experience was the anaesthetic that they spray your throat with; I coughed, I spluttered, and felt like I was choking. The anaesthetic makes your throat feel like it is on fire, and the taste was rancid, I was advised patients say it tastes like rotten bananas, and once it hit, I felt that immediately. As you lose the sensation in your throat.
As for the sedative, that didn't work. It made no difference to me at all. I was fully awake, but got through it in the end with the help of the nurses. My actual procedure lasted about 25 minutes in theatre. There were 6 people present, 2 senior nurses, 2 junior nurses, the consultant, and a second doctor. The Fibre Optic Bronchoscope went through the nose. I had to inhale some liquid through it before the scope was inserted - that was a very odd sensation. My right nostril is still rather numb and feels blocked hours later. My head feels like I have a cold and I really want to blow my nose but I am not allowed for 24 hours.
The scope passing over the ridge of my nose and going down was the most uncomfortable part involving the scope, once it was down it went along a lot easier. What surprised me most was how easy it was to breathe whilst the scope was down inside, it didn't feel obstructive at all but I imagine the anaesthetic had a big part to play in that. Once inside the lungs the consultant had a look around, I heard a lot of medical terms I didn't understand. Once they had looked around they took 6 biopsies from various positions, collected a sputum sample [not entirely sure what that is, a type of mucus I gather], and then I had a saline wash. The wash was an odd sensation, rather like the feeling when water goes down the wrong way.
From the moment the anaesthetic was sprayed into my mouth I started to drool uncontrollably. One of the nurses had a suction tube like the dentist would have, they kept the mouth clear for me. I had to cough at several points, each time more spit mixed with pinkish gunk came up. After the wash the scope was removed, that felt very relieving when it came out. I returned to the ward for observation. I had a private room which I was grateful for. Feeling in my tongue and in my throat returned rather quickly, I was able to speak within about 10 minutes. After 45 they tried me with drinking some water, that went down okay. I had some squash and some shortbread after to see how I handled food.
Ever since the procedure I have been coughing up blood in varying amounts, as the locations of the biopsies heal they will bleed somewhat. I've had large globules come up and phlegm. Some of it has been bright red and others have been deep dark red. During my TB test on Tuesday the blood that came out was very dark, almost black, so I am guessing the darker it is the less I need to worry. The coughing up blood has become less frequent now. I have managed to sleep, my mum kept an eye on me. I'm not allowed to be alone for the next 24 hours in case anything happens, so a responsible adult has to stay with me.
This procedure has been the most unpleasant one yet. If it weren't for the nurses I don't think I would have got through it. The CT scan seems like a walk in the park now in comparison.
As for diagnosis, the consultant is confident there is no TB given what she saw today so is happy to progress to treatment. They will still get TB test results in 2 weeks time, along with the biopsies in 1 week, but from all she has seen she is confident the granulomas are benign and have not formed tumours. Only the biopsy results can confirm that diagnosis though, so I am not in the clear yet. Nevertheless they are happy for me to start a course of steroids, which will be Prednisolone. Which is the best outcome I could have hoped for. I have to see my GP to get the actual prescription and to discuss additional medication to mitigate the side effects of the steroids.
I feel relieved, but there is a lingering worry about the results. Until I am told I am all clear, I won't take it for granted.
The most unpleasant thing about the whole experience was the anaesthetic that they spray your throat with; I coughed, I spluttered, and felt like I was choking. The anaesthetic makes your throat feel like it is on fire, and the taste was rancid, I was advised patients say it tastes like rotten bananas, and once it hit, I felt that immediately. As you lose the sensation in your throat.
As for the sedative, that didn't work. It made no difference to me at all. I was fully awake, but got through it in the end with the help of the nurses. My actual procedure lasted about 25 minutes in theatre. There were 6 people present, 2 senior nurses, 2 junior nurses, the consultant, and a second doctor. The Fibre Optic Bronchoscope went through the nose. I had to inhale some liquid through it before the scope was inserted - that was a very odd sensation. My right nostril is still rather numb and feels blocked hours later. My head feels like I have a cold and I really want to blow my nose but I am not allowed for 24 hours.
The scope passing over the ridge of my nose and going down was the most uncomfortable part involving the scope, once it was down it went along a lot easier. What surprised me most was how easy it was to breathe whilst the scope was down inside, it didn't feel obstructive at all but I imagine the anaesthetic had a big part to play in that. Once inside the lungs the consultant had a look around, I heard a lot of medical terms I didn't understand. Once they had looked around they took 6 biopsies from various positions, collected a sputum sample [not entirely sure what that is, a type of mucus I gather], and then I had a saline wash. The wash was an odd sensation, rather like the feeling when water goes down the wrong way.
From the moment the anaesthetic was sprayed into my mouth I started to drool uncontrollably. One of the nurses had a suction tube like the dentist would have, they kept the mouth clear for me. I had to cough at several points, each time more spit mixed with pinkish gunk came up. After the wash the scope was removed, that felt very relieving when it came out. I returned to the ward for observation. I had a private room which I was grateful for. Feeling in my tongue and in my throat returned rather quickly, I was able to speak within about 10 minutes. After 45 they tried me with drinking some water, that went down okay. I had some squash and some shortbread after to see how I handled food.
Ever since the procedure I have been coughing up blood in varying amounts, as the locations of the biopsies heal they will bleed somewhat. I've had large globules come up and phlegm. Some of it has been bright red and others have been deep dark red. During my TB test on Tuesday the blood that came out was very dark, almost black, so I am guessing the darker it is the less I need to worry. The coughing up blood has become less frequent now. I have managed to sleep, my mum kept an eye on me. I'm not allowed to be alone for the next 24 hours in case anything happens, so a responsible adult has to stay with me.
This procedure has been the most unpleasant one yet. If it weren't for the nurses I don't think I would have got through it. The CT scan seems like a walk in the park now in comparison.
As for diagnosis, the consultant is confident there is no TB given what she saw today so is happy to progress to treatment. They will still get TB test results in 2 weeks time, along with the biopsies in 1 week, but from all she has seen she is confident the granulomas are benign and have not formed tumours. Only the biopsy results can confirm that diagnosis though, so I am not in the clear yet. Nevertheless they are happy for me to start a course of steroids, which will be Prednisolone. Which is the best outcome I could have hoped for. I have to see my GP to get the actual prescription and to discuss additional medication to mitigate the side effects of the steroids.
I feel relieved, but there is a lingering worry about the results. Until I am told I am all clear, I won't take it for granted.
More waiting
In my last post I mentioned that I am waiting for a Fibre Optic Bronchoscopy in September; as well as that appointment I have also been told I will be having a TB Blood Test a few days before it. I'm a little confused as to why they have asked for it considering I have had a chest X-Ray and a CT scan and the NHS articles about TB indicate those are the main method of diagnosing the condition. In my mind that means they should know whether I have that or not, so that leaves me wondering why they need to do the test.
When I found out I was having a CT scan, the articles discussing their use said that they are not used for screening, that they were only used to confirm a diagnosis not to help make one. That has led me to wonder whether the blood test for TB will be in the same vein [no pun intended] of being a test that is done to confirm a diagnosis rather than screening. I have no idea whether that is the case and I have had no communication with the consultant or the doctors to be able to discuss that. Really one of the worst parts of this whole experience has been the lack of communication and the waiting. The longer I wait the more my mind wanders, and yes, the more I Google things.
I know many people say you shouldn't Google anything or that you shouldn't read anything - I disagree with that. Uncertainty is hard to deal with, and anxiety peaks and troughs in an inverted correlation with the amount of detail you know. The less you know the more you worry, and the more you know and understand, the less worry the whole process evokes.
My mind will automatically go to the worst case scenario and dream up horrible visions of what you will endure; knowing more about something can eradicate much of this by providing reassurance. There seems to be an attitude that the less a patient is told the easier it will be for them to handle the whole experience, I don't know how that works for other people but for me that's one of the worst things you can do. If you leave me to my imagination, thinking it will be reassuring, then bitch you severely underestimate the depth and darkness my imagination can dream up.
As a general update to my condition however, there have been new symptoms that have developed which in themselves are causing me worry. I've noticed changes to my vision which I want to discuss with my Ophthalmologist, I also want them to be aware of my diagnosis since as far as I am aware no-one has told them and Sarcoidosis can affect the eyes so I want them to keep an eye on it - again no pun intended.
It's rather disheartening to be sent for test after test, and to receive more referrals for more tests, it's making me wonder what else they will find. I've read a bit about TB and from what I gather there's two main types of it, latent and active, the former can be treated with antibiotics, the latter however can be difficult to treat. It also doesn't help that the latter has a 50% survival rate if it isn't treated. The sense of urgency is creeping into my mind now and that's making me evermore anxious about how long I am waiting. Time can't move quick enough. I'm counting down the days, half in anxiety over what is to come, and half in anxiety over how long it has already been.
When I found out I was having a CT scan, the articles discussing their use said that they are not used for screening, that they were only used to confirm a diagnosis not to help make one. That has led me to wonder whether the blood test for TB will be in the same vein [no pun intended] of being a test that is done to confirm a diagnosis rather than screening. I have no idea whether that is the case and I have had no communication with the consultant or the doctors to be able to discuss that. Really one of the worst parts of this whole experience has been the lack of communication and the waiting. The longer I wait the more my mind wanders, and yes, the more I Google things.
I know many people say you shouldn't Google anything or that you shouldn't read anything - I disagree with that. Uncertainty is hard to deal with, and anxiety peaks and troughs in an inverted correlation with the amount of detail you know. The less you know the more you worry, and the more you know and understand, the less worry the whole process evokes.
My mind will automatically go to the worst case scenario and dream up horrible visions of what you will endure; knowing more about something can eradicate much of this by providing reassurance. There seems to be an attitude that the less a patient is told the easier it will be for them to handle the whole experience, I don't know how that works for other people but for me that's one of the worst things you can do. If you leave me to my imagination, thinking it will be reassuring, then bitch you severely underestimate the depth and darkness my imagination can dream up.
As a general update to my condition however, there have been new symptoms that have developed which in themselves are causing me worry. I've noticed changes to my vision which I want to discuss with my Ophthalmologist, I also want them to be aware of my diagnosis since as far as I am aware no-one has told them and Sarcoidosis can affect the eyes so I want them to keep an eye on it - again no pun intended.
It's rather disheartening to be sent for test after test, and to receive more referrals for more tests, it's making me wonder what else they will find. I've read a bit about TB and from what I gather there's two main types of it, latent and active, the former can be treated with antibiotics, the latter however can be difficult to treat. It also doesn't help that the latter has a 50% survival rate if it isn't treated. The sense of urgency is creeping into my mind now and that's making me evermore anxious about how long I am waiting. Time can't move quick enough. I'm counting down the days, half in anxiety over what is to come, and half in anxiety over how long it has already been.
Last But Not Least
In my last post I wrote at length about the CT scan I went through. That feels like so long ago now, it's hard to believe tomorrow it will only be two weeks. A few days after the scan I got a phone call from the hospital telling me I had been booked in for a Lung Function Test. I went for that on Friday past, little over a week after the CT scan.
The tests carried out on my lungs were tiring but not to the same extent as the day I had the CT scans. I was expecting a treadmill and a breathing tube, as that's the vision I always had in my head as to what this sort of thing involved but it was nothing of the sort. It was quite relaxed actually. The Doctor that took me through the tests was a very nice woman who put me at ease with mutual disdain for needles and assured me the procedure was non invasive which helped me relax.
The tests themselves were a little awkward. They all involved a mouthpiece attached to a robotic arm with a computer controlling the airflow. The first step was to measure normal breathing so I had to breathe through the mouthpiece for a while just to get a reading. The second test was a spirometry test which measures how quickly air can get in and out of the lungs and also gives an idea of the size of the lungs. That involved a very deep breath quickly, and pushed out quickly. My results for the test indicated there was some restriction in breathing; on the screen you can see a loop which charts the intake and outflow of air, my loop wasn't fully formed and was a little flat on the outflow. The test was repeated a few times to establish an average of the results.
After the spirometry test I had to do a similar test this time involving a tracer gas. You breathe in deeply through the mouthpiece and hold your breath for about 8 seconds and then breathe out again; whilst breathing in, a certain amount of the tracer gas is added, and then measured when you exhale to determine how efficient the lungs are at filtering.
The next test was similar to the tracer gas test, this time an aerosol was released when breathing in, I felt some of this powder in my throat when breathing in, but it wasn't unpleasant. After both of these tests you had to sit for several minutes to return to normal breathing. Another test like the first was carried out, this time checking to see how long it took you to return to normal breathing after being exerted.
All in all, these were the least unpleasant tests I've had to do so far, the CT was by far the most unpleasant, with the blood tests being around the middle.
It's only been 4 days since the lung function test but I have spoken to my GP and my consultant has reviewed the results and they have settled on their diagnosis, I do have Sarcoidosis.
There's just one more thing to do and that's causing me some anxiety. Due to the nature of Sarcoidosis, small growths occur called granulomas, these are a lot like tumours but they do not grow in size. They form when the immune system tries to "quarantine" an infection by covering it in cells. The key distinction is that tumours are abnormal growths in tissue, whereas granulomas are an overactive response by the immune system to an infection.
The two look very similar and it's important to differentiate, so I have one last test to do before they can safely rule out everything else. In September I will have a Fibre Optic Bronchoscopy which involves a camera on a thin tube being inserted through the nose, down into the lungs. During the procedure I will be sedated [thank fuck] and a biopsy of the tissue will be taken to verify they are granulomas not tumours. The operation itself only takes around half an hour and will be done first thing in the morning [8:30am] but I will have to stay in the hospital for several hours afterwards until everything wears off. Not gonna lie, really anxious about this one. It's the last test, and the last chance for anything to go wrong. I've been advised that everything in my results right now points to Sarcoidosis and it's very unlikely at this stage that it would be anything else, but the biopsy is still needed to make that definite.
There is some relief in knowing the diagnosis, of course this now paves the way to research everything about the disease in the knowledge that, this is what I have. Google can be your best friend and your worst enemy at a time like this, and the sites I have read through so far have similar descriptions, but vary wildly in their prognoses. The statistics aren't consistent either in terms of the percentages of people that have acute versus chronic [short term and long term] cases of the disease. Some have said the acute version lasts 12 months, others 24, while the information on chronic varies from insistence that you have chronic since birth, to others saying it can be onset in the early 20s through to late 30s. Sifting through all of the information is rather overwhelming.
I haven't actually seen or spoke to my consultant yet. My GP has advised I may see the consultant after the operation in September, or I may have a follow up appointment made soon after. In any case, going forward, the most likely treatment will be a course of steroids due to how far along my Sarcoidosis has progressed. For most people who get it, the condition remedies itself eventually and doesn't need treating [as in the acute diagnosis] for some it does remain acute but does need treated due to the severity of the symptoms - so I may have severe acute Sarcoidosis - for others the condition become chronic, and treatment turns to condition management rather than an attempt at expediting recovery. It's important to note here there is no "cure" there's no drug you can take to stop it or make it go away, the steroids I may be prescribed are to counteract the symptoms, not to remove the cause as the cause is unknown.
From what I have read the steroids that may be prescribed are called Prednisolone, although in some cases if the condition has progressed further then Methotrexate is prescribed - which isn't a steroid, it's an antimetabolite, which I gather is basically an immune suppressor, the intent being to weaken the immune system so it's reaction isn't as severe. They both carry certain risks though and I may be prescribed other medications to counter some of the side affects which means more tablets. I'm sick taking cocodamol as it is, I'm not sure how it's going to feel taking so many tablets everyday. The one reassurance is that the steroids are the lesser of the two in that they are prescribed in 3-month blocks, and long term usage is discouraged as they can cause thinning of your bones so it would likely be the shorter course if they were prescribed.
I don't know what to expect going forward. Right now the Bronchoscopy is occupying my mind the most, I have been told it shouldn't be painful though so that's one saving grace, although the information pack the hospital provided mentions local anesthetic via an oral spray, and a sedative via an IV which will mean another cannula, oh joy. Also I'd avoid reading WebMD, the article on there about Bronchoscopy mentions possible complications and very nonchalant in adding "very small chance of death" to the list - that's totally not terrifying at all for someone who's just looking for information to feel less anxious about the whole thing, thanks WebMD.
The tests carried out on my lungs were tiring but not to the same extent as the day I had the CT scans. I was expecting a treadmill and a breathing tube, as that's the vision I always had in my head as to what this sort of thing involved but it was nothing of the sort. It was quite relaxed actually. The Doctor that took me through the tests was a very nice woman who put me at ease with mutual disdain for needles and assured me the procedure was non invasive which helped me relax.
The tests themselves were a little awkward. They all involved a mouthpiece attached to a robotic arm with a computer controlling the airflow. The first step was to measure normal breathing so I had to breathe through the mouthpiece for a while just to get a reading. The second test was a spirometry test which measures how quickly air can get in and out of the lungs and also gives an idea of the size of the lungs. That involved a very deep breath quickly, and pushed out quickly. My results for the test indicated there was some restriction in breathing; on the screen you can see a loop which charts the intake and outflow of air, my loop wasn't fully formed and was a little flat on the outflow. The test was repeated a few times to establish an average of the results.
After the spirometry test I had to do a similar test this time involving a tracer gas. You breathe in deeply through the mouthpiece and hold your breath for about 8 seconds and then breathe out again; whilst breathing in, a certain amount of the tracer gas is added, and then measured when you exhale to determine how efficient the lungs are at filtering.
The next test was similar to the tracer gas test, this time an aerosol was released when breathing in, I felt some of this powder in my throat when breathing in, but it wasn't unpleasant. After both of these tests you had to sit for several minutes to return to normal breathing. Another test like the first was carried out, this time checking to see how long it took you to return to normal breathing after being exerted.
All in all, these were the least unpleasant tests I've had to do so far, the CT was by far the most unpleasant, with the blood tests being around the middle.
It's only been 4 days since the lung function test but I have spoken to my GP and my consultant has reviewed the results and they have settled on their diagnosis, I do have Sarcoidosis.
There's just one more thing to do and that's causing me some anxiety. Due to the nature of Sarcoidosis, small growths occur called granulomas, these are a lot like tumours but they do not grow in size. They form when the immune system tries to "quarantine" an infection by covering it in cells. The key distinction is that tumours are abnormal growths in tissue, whereas granulomas are an overactive response by the immune system to an infection.
The two look very similar and it's important to differentiate, so I have one last test to do before they can safely rule out everything else. In September I will have a Fibre Optic Bronchoscopy which involves a camera on a thin tube being inserted through the nose, down into the lungs. During the procedure I will be sedated [thank fuck] and a biopsy of the tissue will be taken to verify they are granulomas not tumours. The operation itself only takes around half an hour and will be done first thing in the morning [8:30am] but I will have to stay in the hospital for several hours afterwards until everything wears off. Not gonna lie, really anxious about this one. It's the last test, and the last chance for anything to go wrong. I've been advised that everything in my results right now points to Sarcoidosis and it's very unlikely at this stage that it would be anything else, but the biopsy is still needed to make that definite.
There is some relief in knowing the diagnosis, of course this now paves the way to research everything about the disease in the knowledge that, this is what I have. Google can be your best friend and your worst enemy at a time like this, and the sites I have read through so far have similar descriptions, but vary wildly in their prognoses. The statistics aren't consistent either in terms of the percentages of people that have acute versus chronic [short term and long term] cases of the disease. Some have said the acute version lasts 12 months, others 24, while the information on chronic varies from insistence that you have chronic since birth, to others saying it can be onset in the early 20s through to late 30s. Sifting through all of the information is rather overwhelming.
I haven't actually seen or spoke to my consultant yet. My GP has advised I may see the consultant after the operation in September, or I may have a follow up appointment made soon after. In any case, going forward, the most likely treatment will be a course of steroids due to how far along my Sarcoidosis has progressed. For most people who get it, the condition remedies itself eventually and doesn't need treating [as in the acute diagnosis] for some it does remain acute but does need treated due to the severity of the symptoms - so I may have severe acute Sarcoidosis - for others the condition become chronic, and treatment turns to condition management rather than an attempt at expediting recovery. It's important to note here there is no "cure" there's no drug you can take to stop it or make it go away, the steroids I may be prescribed are to counteract the symptoms, not to remove the cause as the cause is unknown.
From what I have read the steroids that may be prescribed are called Prednisolone, although in some cases if the condition has progressed further then Methotrexate is prescribed - which isn't a steroid, it's an antimetabolite, which I gather is basically an immune suppressor, the intent being to weaken the immune system so it's reaction isn't as severe. They both carry certain risks though and I may be prescribed other medications to counter some of the side affects which means more tablets. I'm sick taking cocodamol as it is, I'm not sure how it's going to feel taking so many tablets everyday. The one reassurance is that the steroids are the lesser of the two in that they are prescribed in 3-month blocks, and long term usage is discouraged as they can cause thinning of your bones so it would likely be the shorter course if they were prescribed.
I don't know what to expect going forward. Right now the Bronchoscopy is occupying my mind the most, I have been told it shouldn't be painful though so that's one saving grace, although the information pack the hospital provided mentions local anesthetic via an oral spray, and a sedative via an IV which will mean another cannula, oh joy. Also I'd avoid reading WebMD, the article on there about Bronchoscopy mentions possible complications and very nonchalant in adding "very small chance of death" to the list - that's totally not terrifying at all for someone who's just looking for information to feel less anxious about the whole thing, thanks WebMD.
Answers and Questions
Yesterday was an unexpected day for me, eventful by all accounts, and in some ways a relief but not so in others, as is so often the case I ended up with more questions than I had answers.
I had been waiting for an appointment with a consultant about my ongoing health problems as detailed in previous posts. To my surprise I got a phone call from the hospital yesterday morning saying my consultant who I haven't seen yet, had requested a CT scan and they were to arrange a booking. Trying to work out a date I ended up asking if there were any sooner than those offered as they weren't convenient and I was offered a cancellation for the same day which I accepted. Without time to think and worry about what was happening, the practicalities overtook the focus of my mind. I went about preparing for the scans and traveled to the hospital. I booked in when I arrived and sat down with my Mum who went with me.
Sitting waiting to be seen was, for the first time, a moment of anxiety. I started to overthink things and the one question that repeated in my head was, why had the consultant sent me straight for a scan without seeing me, what had he read in my notes that made him send me for one straight away, what did he suspect? I still haven't got an answer to this question and what's more is something else that happened later added to this worry.
After waiting for about 15 minutes I was called in and met the assistant radiographer. They explained the process and read my notes that a chest scan was needed. As I lay down on the scanner the lead radiographer came in and asked us to stop. The consultant had changed the particulars of my scan, I was to have multiple scans rather than just one, and a contrast was required. So I had to return to the waiting area where I was given about a litre of water with the contrast solution in it, which I had to drink over the space of an hour so that my colon would show up on the scan.
As I sat with Mum for an hour drinking the contrast my mind started racing. Why did the consultant want to see my colon? Why was I having a full body scan not just the lungs? My mind is still mulling over these things but a lot of angst stems from the fact that CT scans in general are heavily associated with Cancer. On the NHS website where you see the list of things CT scans are used to diagnose, the majority are Cancer related, the scanner itself is in the Cancer wing of the hospital, and everywhere on walls in the hospital are posters about coping with Cancer diagnoses. No-one has said to me that it is even a possibility at this stage but seeing it everywhere is very disconcerting.
That contrast solution I was told is odorless and tasteless - it's not. It tasted like chalk to me, it looked just like water but as I was drinking it, about 20 minutes in I felt my body react, it became harder to drink it, by the end I was forcing myself to drink it. It felt like my body had realised "this isn't just water" - to the point I thought I might throw up but I was able to keep it down. The contrast solution is used to allow the scan to see inside joints and to highlight organs better on the scan.
After an hour I was called in again and this time had a form to sign and I was asked a few questions about medication and conditions, did I have diabetes or asthma etc. I was then told I'd be getting an injection at which point I think my heart stopped, I am so afraid of needles, injections are a nightmare for me and all the blood tests I have had in the past few months have been for the most part unpleasant, the nurses being the only thing helping me through it, they've all been delightful. I lay down on the scanner bed and the radiographer looked for a vein to use. My veins run very deep, getting one is hard. She spent a few minutes looking for one to use which I appreciated because I've had blood tests that felt rushed that left me literally black and blue before. She found one that was suitable and then inserted a cannula into my arm. That was a thoroughly unpleasant experience for me, it's one thing having an injection when scared of needles, it's another to have a needle that STAYS in your arm. I was more worried about that at this point than the actual scans.
The lead radiographer was explaining everything to the assistant as she went along, so I gather this test is rare. The cannula was connected to an injection pump machine which they would control from the next room. Nothing had been injected yet. They positioned me with arms above my head through the polo shaped hole. They left the room and the machine whirred into motion. I had two scans of my abdomen and lower body. The first was done without the injection. I went through the ring twice and then came to rest. That was an odd sensation as the machine itself has a voice that speaks to you telling you when to breathe and when to hold your breath.
The radiographer then spoke through an intercom and told me the injection would come now. I lay there waiting a few seconds then I felt my entire body flush with heat, every inch of it felt like it was on fire. This is a radioactive dye test, and as I gather, it is used to see inside the heart and to diagnose circulatory and coronary diseases. I felt so hot, like I was sweating out of every pore. The second scan started and I concentrated on it, breathing and holding when instructed.
After these two scans the radiographers returned to adjust my position for the next two scans. I saw the injection tubing connected to the cannula and I saw the vacuum canister attached to the tube as it passed through the machine when they changed my position. The canister was about the thickness of a can of coke, was made from glass I think, and had a large silver metal inside it and had what looked like a black liquid. They left the room again and I lay flat with arms at my side and no head support this time. Again I had the first scan normally, and then before the second scan I was advised the injection was coming, and again I felt it wash over me and the heat intensified again. The second scan was completed and then the radiographers returned.
I sat up at this point and as I did the whole room moved and I thought I might pass out. The radiographer told me to sit for a few moments, they got me some water to drink. I sat for a few minutes then moved to a small isolated seating area where they asked me to stay for a while so I did. I drank some more water and sat for a while until the lightheadedness passed.
For the rest of the day I had hot and cold flushes, and at one point I felt like literally everything below my diaphragm moved. I had to steady myself, luckily we weren't far from home when that happened. When I got home I had to rush to the toilet. For the next few hours I had diarrhoea and peed a lot. I was advised for the next 48 hours I would have to drink a lot of water, and was told if any rashes appeared to call a doctor immediately.
This is about 18 hours later for me now, the diarrhoea has stopped thankfully. Nausea has come and gone and for a while I lost my appetite but that has returned. I'm still peeing a lot more than normal but that's to be expected I guess. The results will go to the consultant, and the consultant will send a report to the doctor that referred me, which was my GP, so I will find out within 3 to 4 weeks what the results are. Questions still race and more keep occurring to me. I have known other people get these scans and the only ones I know who have had the dye injected as well as the contrast are those that were diagnosed with Cancer which is fueling my paranoia.
I know I may be adding 2 and 2 and getting 5. I know it will probably be something trivial, or something mild that they can treat. Still the thought remains in my mind, what if it isn't? People tell me not to think about it, but that's easier said than done, and it's not who I am. I expect the worst in most scenarios, I want the best, but I expect the worst cause then if it happens you were prepared and if it doesn't then literally everything is a positive. It also doesn't help that the NHS website clearly says they avoid using CT scans for screening as the benefits do not outweigh the risks - meaning they don't send you for one unless you have symptoms of something that needs one, which brings you back to that list of things they are used for. As I said in previous posts my GP has suspected Sarcoidosis in my lungs, that brings me back to the consultant changing the particulars of my scan, what does he want to see in my colon, if the problem is in my lungs?
I'm relieved that things are progressing and it feels like something is being done but I'm left with even more questions than I had before. I'm still having the odd hot flush but those are much more spaced out now, as in once every few hours rather than every few minutes as they had been yesterday. I've also been able to remove the bandage that was covering the insertion point where the cannula was, that thing felt like it was stuck on with super glue.
I don't know what to expect next. I want answers more than anything, and despite all the anxiety, the desire to know exactly what's wrong is overpowering it. I know there is something wrong and I know it's not normal for me, this is week 18 now since the symptoms started, week 14 since first seeing a doctor about everything, and I waited 9 weeks to see a consultant, which I probably won't see at all now since he sent me straight for the CT scan and that goes back to my GP.
I feel like a voodoo doll, I've had needles in me, left and right, I've been tested for so many things, the list of possibilities is getting shorter. The panicked reactions of what it could be, as a gay man the obvious one is HIV and other STI type things, they were all pursued months ago and everything came back negative, I don't have a thyroid, I don't have asthma, I don't have diabetes, it's not rheumatoid arthritis, at this point the only things left are conditions like Cancer where I always thought "that wouldn't happen to me" - I don't smoke, I very rarely drink [only Christmas time mainly], I've never done drugs, the only prescription I've ever been on before was Pen-V for tonsillitis. Apart from my Nystagmus I've never had any medical conditions before.
One of the worrying things about this whole thing though has been the surprising amount of people in the family that have had Cancer which I did not know about. My family tree is complicated to say the least so there's an excuse for some ignorance, but not only Cancer, I have discovered there's a whole slew of medical conditions people have which I had no idea about until I started asking questions. Relatives I thought were perfectly healthy, and even some who are dead who I thought died of natural causes I have now learned had everything under the sun.
I find it surprising how little people actually talk about their health until you start opening up about your own. I always thought that was just something that happened with mental health but it turns out the same is true for physical health too, why is it we are so ashamed to talk about it? I wrote this post as I established a precedent months ago that I wanted to share what was happening, both for anyone that is interested and for myself to look back on in years to come and see what I went through and what I thought and felt at the time. I hope it helps someone, I hope it sheds some light or answers some questions for anyone out there - even if only to know things aren't straight forward and that it takes time to find answers, if you find them at all.
I had been waiting for an appointment with a consultant about my ongoing health problems as detailed in previous posts. To my surprise I got a phone call from the hospital yesterday morning saying my consultant who I haven't seen yet, had requested a CT scan and they were to arrange a booking. Trying to work out a date I ended up asking if there were any sooner than those offered as they weren't convenient and I was offered a cancellation for the same day which I accepted. Without time to think and worry about what was happening, the practicalities overtook the focus of my mind. I went about preparing for the scans and traveled to the hospital. I booked in when I arrived and sat down with my Mum who went with me.
Sitting waiting to be seen was, for the first time, a moment of anxiety. I started to overthink things and the one question that repeated in my head was, why had the consultant sent me straight for a scan without seeing me, what had he read in my notes that made him send me for one straight away, what did he suspect? I still haven't got an answer to this question and what's more is something else that happened later added to this worry.
After waiting for about 15 minutes I was called in and met the assistant radiographer. They explained the process and read my notes that a chest scan was needed. As I lay down on the scanner the lead radiographer came in and asked us to stop. The consultant had changed the particulars of my scan, I was to have multiple scans rather than just one, and a contrast was required. So I had to return to the waiting area where I was given about a litre of water with the contrast solution in it, which I had to drink over the space of an hour so that my colon would show up on the scan.
As I sat with Mum for an hour drinking the contrast my mind started racing. Why did the consultant want to see my colon? Why was I having a full body scan not just the lungs? My mind is still mulling over these things but a lot of angst stems from the fact that CT scans in general are heavily associated with Cancer. On the NHS website where you see the list of things CT scans are used to diagnose, the majority are Cancer related, the scanner itself is in the Cancer wing of the hospital, and everywhere on walls in the hospital are posters about coping with Cancer diagnoses. No-one has said to me that it is even a possibility at this stage but seeing it everywhere is very disconcerting.
That contrast solution I was told is odorless and tasteless - it's not. It tasted like chalk to me, it looked just like water but as I was drinking it, about 20 minutes in I felt my body react, it became harder to drink it, by the end I was forcing myself to drink it. It felt like my body had realised "this isn't just water" - to the point I thought I might throw up but I was able to keep it down. The contrast solution is used to allow the scan to see inside joints and to highlight organs better on the scan.
After an hour I was called in again and this time had a form to sign and I was asked a few questions about medication and conditions, did I have diabetes or asthma etc. I was then told I'd be getting an injection at which point I think my heart stopped, I am so afraid of needles, injections are a nightmare for me and all the blood tests I have had in the past few months have been for the most part unpleasant, the nurses being the only thing helping me through it, they've all been delightful. I lay down on the scanner bed and the radiographer looked for a vein to use. My veins run very deep, getting one is hard. She spent a few minutes looking for one to use which I appreciated because I've had blood tests that felt rushed that left me literally black and blue before. She found one that was suitable and then inserted a cannula into my arm. That was a thoroughly unpleasant experience for me, it's one thing having an injection when scared of needles, it's another to have a needle that STAYS in your arm. I was more worried about that at this point than the actual scans.
The lead radiographer was explaining everything to the assistant as she went along, so I gather this test is rare. The cannula was connected to an injection pump machine which they would control from the next room. Nothing had been injected yet. They positioned me with arms above my head through the polo shaped hole. They left the room and the machine whirred into motion. I had two scans of my abdomen and lower body. The first was done without the injection. I went through the ring twice and then came to rest. That was an odd sensation as the machine itself has a voice that speaks to you telling you when to breathe and when to hold your breath.
The radiographer then spoke through an intercom and told me the injection would come now. I lay there waiting a few seconds then I felt my entire body flush with heat, every inch of it felt like it was on fire. This is a radioactive dye test, and as I gather, it is used to see inside the heart and to diagnose circulatory and coronary diseases. I felt so hot, like I was sweating out of every pore. The second scan started and I concentrated on it, breathing and holding when instructed.
After these two scans the radiographers returned to adjust my position for the next two scans. I saw the injection tubing connected to the cannula and I saw the vacuum canister attached to the tube as it passed through the machine when they changed my position. The canister was about the thickness of a can of coke, was made from glass I think, and had a large silver metal inside it and had what looked like a black liquid. They left the room again and I lay flat with arms at my side and no head support this time. Again I had the first scan normally, and then before the second scan I was advised the injection was coming, and again I felt it wash over me and the heat intensified again. The second scan was completed and then the radiographers returned.
I sat up at this point and as I did the whole room moved and I thought I might pass out. The radiographer told me to sit for a few moments, they got me some water to drink. I sat for a few minutes then moved to a small isolated seating area where they asked me to stay for a while so I did. I drank some more water and sat for a while until the lightheadedness passed.
For the rest of the day I had hot and cold flushes, and at one point I felt like literally everything below my diaphragm moved. I had to steady myself, luckily we weren't far from home when that happened. When I got home I had to rush to the toilet. For the next few hours I had diarrhoea and peed a lot. I was advised for the next 48 hours I would have to drink a lot of water, and was told if any rashes appeared to call a doctor immediately.
This is about 18 hours later for me now, the diarrhoea has stopped thankfully. Nausea has come and gone and for a while I lost my appetite but that has returned. I'm still peeing a lot more than normal but that's to be expected I guess. The results will go to the consultant, and the consultant will send a report to the doctor that referred me, which was my GP, so I will find out within 3 to 4 weeks what the results are. Questions still race and more keep occurring to me. I have known other people get these scans and the only ones I know who have had the dye injected as well as the contrast are those that were diagnosed with Cancer which is fueling my paranoia.
I know I may be adding 2 and 2 and getting 5. I know it will probably be something trivial, or something mild that they can treat. Still the thought remains in my mind, what if it isn't? People tell me not to think about it, but that's easier said than done, and it's not who I am. I expect the worst in most scenarios, I want the best, but I expect the worst cause then if it happens you were prepared and if it doesn't then literally everything is a positive. It also doesn't help that the NHS website clearly says they avoid using CT scans for screening as the benefits do not outweigh the risks - meaning they don't send you for one unless you have symptoms of something that needs one, which brings you back to that list of things they are used for. As I said in previous posts my GP has suspected Sarcoidosis in my lungs, that brings me back to the consultant changing the particulars of my scan, what does he want to see in my colon, if the problem is in my lungs?
I'm relieved that things are progressing and it feels like something is being done but I'm left with even more questions than I had before. I'm still having the odd hot flush but those are much more spaced out now, as in once every few hours rather than every few minutes as they had been yesterday. I've also been able to remove the bandage that was covering the insertion point where the cannula was, that thing felt like it was stuck on with super glue.
I don't know what to expect next. I want answers more than anything, and despite all the anxiety, the desire to know exactly what's wrong is overpowering it. I know there is something wrong and I know it's not normal for me, this is week 18 now since the symptoms started, week 14 since first seeing a doctor about everything, and I waited 9 weeks to see a consultant, which I probably won't see at all now since he sent me straight for the CT scan and that goes back to my GP.
I feel like a voodoo doll, I've had needles in me, left and right, I've been tested for so many things, the list of possibilities is getting shorter. The panicked reactions of what it could be, as a gay man the obvious one is HIV and other STI type things, they were all pursued months ago and everything came back negative, I don't have a thyroid, I don't have asthma, I don't have diabetes, it's not rheumatoid arthritis, at this point the only things left are conditions like Cancer where I always thought "that wouldn't happen to me" - I don't smoke, I very rarely drink [only Christmas time mainly], I've never done drugs, the only prescription I've ever been on before was Pen-V for tonsillitis. Apart from my Nystagmus I've never had any medical conditions before.
One of the worrying things about this whole thing though has been the surprising amount of people in the family that have had Cancer which I did not know about. My family tree is complicated to say the least so there's an excuse for some ignorance, but not only Cancer, I have discovered there's a whole slew of medical conditions people have which I had no idea about until I started asking questions. Relatives I thought were perfectly healthy, and even some who are dead who I thought died of natural causes I have now learned had everything under the sun.
I find it surprising how little people actually talk about their health until you start opening up about your own. I always thought that was just something that happened with mental health but it turns out the same is true for physical health too, why is it we are so ashamed to talk about it? I wrote this post as I established a precedent months ago that I wanted to share what was happening, both for anyone that is interested and for myself to look back on in years to come and see what I went through and what I thought and felt at the time. I hope it helps someone, I hope it sheds some light or answers some questions for anyone out there - even if only to know things aren't straight forward and that it takes time to find answers, if you find them at all.
Waiting
I'm finding it hard to cope with life at the moment. To be blunt, I don't have the energy to do very much and that's really getting to me. In my previous post I spoke about my health problems that I am going through. As an update to that post, I am still waiting to see a consultant. My aches and pains have varied in waves; at the moment I'm going through a resurgence, they had weakened for a time and they are now increasing again.
The pains alone would be manageable as I am taking medication which for the moment is still effective. The trouble is I have no energy and feel tired all the time. In the last five days I have slept between 12 and 14 hours asleep each day. The longest has been 16, and the shortest has been 10. I'm starting to spend more time asleep than I am awake and that's really making life difficult.
Sleeping so much leaves me little time to do much when I am awake, before we even get to the persistent breathing problems that are making even the simplest physical activity strenuous.
I'm tired. Not just physically but mentally too. While all of this is happening to me, I am aware of other people going through health troubles, those range from trivial issues right through to Cancer. The latter of which took me by surprise when I found out their diagnosis.
I'm struggling to hold onto the positives in life right now and I'm finding less and less places to turn to try and find them. That's making life depressing, and I don't mean in the melodramatic exaggerations of sadness, I mean genuine depression. I've been through it years ago and I recognize much of what is happening to me but that hasn't helped me to stop it or overcome it. If anything it is fueling anxiety that it is inevitable. I feel myself being enveloped in darkness, like the dark clouds that had covered the sky have started to descend and shroud my view to the point where I can see nothing before me.
I wish I could end this post on a happy note but there's really nothing I can offer. My life at the moment revolves around waiting. Waiting for Doctors, waiting for results, waiting for medications to kick in, and sleep. No matter how much I sleep I don't feel rested, I don't feel refreshed.
The pains alone would be manageable as I am taking medication which for the moment is still effective. The trouble is I have no energy and feel tired all the time. In the last five days I have slept between 12 and 14 hours asleep each day. The longest has been 16, and the shortest has been 10. I'm starting to spend more time asleep than I am awake and that's really making life difficult.
Sleeping so much leaves me little time to do much when I am awake, before we even get to the persistent breathing problems that are making even the simplest physical activity strenuous.
I'm tired. Not just physically but mentally too. While all of this is happening to me, I am aware of other people going through health troubles, those range from trivial issues right through to Cancer. The latter of which took me by surprise when I found out their diagnosis.
I'm struggling to hold onto the positives in life right now and I'm finding less and less places to turn to try and find them. That's making life depressing, and I don't mean in the melodramatic exaggerations of sadness, I mean genuine depression. I've been through it years ago and I recognize much of what is happening to me but that hasn't helped me to stop it or overcome it. If anything it is fueling anxiety that it is inevitable. I feel myself being enveloped in darkness, like the dark clouds that had covered the sky have started to descend and shroud my view to the point where I can see nothing before me.
I wish I could end this post on a happy note but there's really nothing I can offer. My life at the moment revolves around waiting. Waiting for Doctors, waiting for results, waiting for medications to kick in, and sleep. No matter how much I sleep I don't feel rested, I don't feel refreshed.
Echoes
Before the Internet, when people died, there were very few opportunities to explore a person's life after they were gone. Home movies let you see glimpses of their life, a diary if they kept one was a source of their thoughts. Save for these few relics however you were left very much in the dark. Then the Internet came along. Or to be more precise it was the advent of social media that spurred on the act of documenting our lives in digital form.
I was scrolling through twitter and happened upon a profile of someone I know to be dead and when I clicked on it something hit me. There was no indication at all that they were gone from their profile. They hadn't tweeted in a while but that doesn't usually make people think someone is dead, they would probably just think they left twitter or grew bored of it. None of their tweets gave any indication of what happened, although again it's not often that people know in advance when or where they will die, and with passwords etc being what they are - known only to you - that makes it very hard for someone else to leave a tweet to let people know.
It struck me that what I was looking at, in the form of the twitter profile of a dead man, is an echo. Everything he tweeted, there for others to read including myself, upon viewing is an echo of what he said and what he did, to be heard again and seen again each time you view it. It also struck me that his tweets give no sign of what was to come, which isn't surprising because no-one could have predicted what would happen, and if they could they likely would have prevented it. No, what struck me was the oblivious nature of it, right up until the moment it happened they lived their life with no idea what was coming.
Reading through their tweets, seeing their videos, and everything they shared from other sites, I realized that we don't share that much about our actual lives. Even when we post an endless stream of content it's hard to find anything specific about our actual lives when you strip everything away and leave only that of substance. I know a lot has been said about data harvesting and data mining, and the profiles advertising companies create around us but really all that can tell you is a set of characteristics the person is likely to identify with, and their possible interests. It doesn't tell you anything about the actual person behind it all.
You'll never ask a question they weren't already asked and get an answer. You'll only find the information they chose to share, unless you get to know the people that actually knew them. That poses another problem, the depth of connections on social media are often quite shallow and superficial. We can have thousands of friends or followers on these platforms, but how many of those people actually know us, rather than knowing of us? There is a distinction to be made there, knowing someone exists, and actually knowing that person, are two very different things. How much do you actually know about the people you interact with?
I was scrolling through twitter and happened upon a profile of someone I know to be dead and when I clicked on it something hit me. There was no indication at all that they were gone from their profile. They hadn't tweeted in a while but that doesn't usually make people think someone is dead, they would probably just think they left twitter or grew bored of it. None of their tweets gave any indication of what happened, although again it's not often that people know in advance when or where they will die, and with passwords etc being what they are - known only to you - that makes it very hard for someone else to leave a tweet to let people know.
It struck me that what I was looking at, in the form of the twitter profile of a dead man, is an echo. Everything he tweeted, there for others to read including myself, upon viewing is an echo of what he said and what he did, to be heard again and seen again each time you view it. It also struck me that his tweets give no sign of what was to come, which isn't surprising because no-one could have predicted what would happen, and if they could they likely would have prevented it. No, what struck me was the oblivious nature of it, right up until the moment it happened they lived their life with no idea what was coming.
Reading through their tweets, seeing their videos, and everything they shared from other sites, I realized that we don't share that much about our actual lives. Even when we post an endless stream of content it's hard to find anything specific about our actual lives when you strip everything away and leave only that of substance. I know a lot has been said about data harvesting and data mining, and the profiles advertising companies create around us but really all that can tell you is a set of characteristics the person is likely to identify with, and their possible interests. It doesn't tell you anything about the actual person behind it all.
You'll never ask a question they weren't already asked and get an answer. You'll only find the information they chose to share, unless you get to know the people that actually knew them. That poses another problem, the depth of connections on social media are often quite shallow and superficial. We can have thousands of friends or followers on these platforms, but how many of those people actually know us, rather than knowing of us? There is a distinction to be made there, knowing someone exists, and actually knowing that person, are two very different things. How much do you actually know about the people you interact with?
I'm taking a break
I would usually write several posts for this blog at a time, save each one, read it again at a later date and if I like it then schedule it to be posted. I tend to do this in bursts where I write about 6 or 7 posts at a time. Over time this amounts to a buffer of content that will be published, which frees up my time so I don't have to come back at a set time to write posts. It also means that I can harness my creativity when it flows and write what comes to mind, allowing me to create content that doesn't feel like it was rushed through just to be ready for a set date or that I wrote about anything at all just to have something to post.
That is how this usually goes but lately a few things have made this complicated. First and foremost is my personal health. For the past 9 weeks I have been sick. You wouldn't think it to look at the posting schedule here, but some people may have noticed I have been a little quieter than usual on twitter and whatsapp. The truth is I have been exhausted. I had hoped it would pass and I would get back to full speed but the opposite has happened and I've been slowing down even more. My buffered content is all published now and I've had to make a decision about what to do next.
I won't be updating this blog for a while. I can't say for how long because I honestly don't know. I toyed with writing a post that would go through everything I have been through the past 9 weeks in detail but it reveals more about my personal life than I want to at this point so this is the abridged version.
I first felt sick 9 weeks ago, which I thought would pass. It didn't, and after 3 weeks I made an appointment to see Dr #1. He didn't know what it was but did a few tests and an examination. A week later I got the results of those tests with Dr #2, and still no wiser. I was advised to rest and still not prescribed anything for the pains I was having and the difficulty breathing that had developed. 5 weeks in and I see Dr #3, who decides to do more tests, and another examination. Another week later I get results and still none the wiser.
Week 7 and I see Dr #4. At this point I've been tested for about 12 different things, I've had an ECG, blood tests, urine samples, oxygen tests, and I've had every orifice prodded and poked and still nothing. I'm told my liver is fine, my heart is fine, my lungs are fine, I dont have diabetes, I don't have a thyroid, I don't have rheumatoid arthritis, my blood tests are unusual but nothig beyond flu-like, and still no prescriptions and no treatments. After insisting there's definitely something wrong with my lungs I get sent for an X-Ray of my chest. Week 8 and I see Dr #4 for the results of my chest X-Ray and indeed they have found something. After 8 weeks they finally think they have an idea of what it is, and it's a condition called Sarcoidosis.
Basically there's no known cause of Sarcoidosis but it is suspected to be caused by trigger infections, which would match up with the initial symptoms I had that were similar to food poisoning. I was infected with something, no idea what that was, no idea if it's still in my body - but from the inflamation markers in my blood tests it would appear it's still there but weakening. Whatever it is comes back in waves so there's been a few times it's as if it's gone, and then came back.
Either way that's not the main concern. The main concern is what followed. When the body detected that infection it began fighting it off, except it never stopped. The immune response persists, to the point where the immune system begins to attack the body itself, in my case it's affecting my lungs and my joints primarily.
It's been 9 weeks now, and during that time a wide range of symptoms have come and gone, some returned in waves and left again. Those include, headache, cough, fever, sweats, nausea, diarrhoea, neuralgia, constipation, dizziness, shortness of breath, exhaustion, insomnia, fatigue, black vomit, difficulty moving, joint pains, muscle aches, and rapid weight loss.
The symptoms that have persisted the most throughout this whole experience are the joint pains, muscle aches, difficulty moving, and shortness of breath.
After 9 weeks I finally have a prescription to take care of the aches and pains at the very least but the other symptoms come and go and the shortness of breath is the most irritating, but I have no treatment options for that rght now. My brain is fried, from the lack of sleep, the fatigue, the tablets, and the point of outright exhaustion which I reach before being able to achieve something that even remotely resembles sleep. I don't feel like myself at the moment for many reasons, and I certainly don't feel creative. I can't do much at the moment and that's frustrating. I get out of breath whenever I attempt even simple physical activities and I get out of breath at random times sitting doing nothing. I get moments I feel like I'm being choked and I have to cough but nothing moves when I do. At its worst it can be hard to have a simple conversation with someone without getting breathless which just feels incredulous.
At the same time I do recognise I need rest. I've had to give up a lot of commitments and I've reached a point now where I feel drained pretty much all the time.
In terms of how long this is going to last, I have no idea. I'm waiting to see a consultant for more scans and tests. I believe the next one is a PET scan to see if there are granulomas in my lungs or if my breathing problems are related to swollen glands. I also need more tests before a diagnosis of Sarcoidosis can actually be given, there's still a chance it's not that, at which point I'll be left clueless as to what it could be yet again.
I'm tired. Mentally, physically, and emotionally, I am so tired.
That is how this usually goes but lately a few things have made this complicated. First and foremost is my personal health. For the past 9 weeks I have been sick. You wouldn't think it to look at the posting schedule here, but some people may have noticed I have been a little quieter than usual on twitter and whatsapp. The truth is I have been exhausted. I had hoped it would pass and I would get back to full speed but the opposite has happened and I've been slowing down even more. My buffered content is all published now and I've had to make a decision about what to do next.
I won't be updating this blog for a while. I can't say for how long because I honestly don't know. I toyed with writing a post that would go through everything I have been through the past 9 weeks in detail but it reveals more about my personal life than I want to at this point so this is the abridged version.
I first felt sick 9 weeks ago, which I thought would pass. It didn't, and after 3 weeks I made an appointment to see Dr #1. He didn't know what it was but did a few tests and an examination. A week later I got the results of those tests with Dr #2, and still no wiser. I was advised to rest and still not prescribed anything for the pains I was having and the difficulty breathing that had developed. 5 weeks in and I see Dr #3, who decides to do more tests, and another examination. Another week later I get results and still none the wiser.
Week 7 and I see Dr #4. At this point I've been tested for about 12 different things, I've had an ECG, blood tests, urine samples, oxygen tests, and I've had every orifice prodded and poked and still nothing. I'm told my liver is fine, my heart is fine, my lungs are fine, I dont have diabetes, I don't have a thyroid, I don't have rheumatoid arthritis, my blood tests are unusual but nothig beyond flu-like, and still no prescriptions and no treatments. After insisting there's definitely something wrong with my lungs I get sent for an X-Ray of my chest. Week 8 and I see Dr #4 for the results of my chest X-Ray and indeed they have found something. After 8 weeks they finally think they have an idea of what it is, and it's a condition called Sarcoidosis.
Basically there's no known cause of Sarcoidosis but it is suspected to be caused by trigger infections, which would match up with the initial symptoms I had that were similar to food poisoning. I was infected with something, no idea what that was, no idea if it's still in my body - but from the inflamation markers in my blood tests it would appear it's still there but weakening. Whatever it is comes back in waves so there's been a few times it's as if it's gone, and then came back.
Either way that's not the main concern. The main concern is what followed. When the body detected that infection it began fighting it off, except it never stopped. The immune response persists, to the point where the immune system begins to attack the body itself, in my case it's affecting my lungs and my joints primarily.
It's been 9 weeks now, and during that time a wide range of symptoms have come and gone, some returned in waves and left again. Those include, headache, cough, fever, sweats, nausea, diarrhoea, neuralgia, constipation, dizziness, shortness of breath, exhaustion, insomnia, fatigue, black vomit, difficulty moving, joint pains, muscle aches, and rapid weight loss.
The symptoms that have persisted the most throughout this whole experience are the joint pains, muscle aches, difficulty moving, and shortness of breath.
After 9 weeks I finally have a prescription to take care of the aches and pains at the very least but the other symptoms come and go and the shortness of breath is the most irritating, but I have no treatment options for that rght now. My brain is fried, from the lack of sleep, the fatigue, the tablets, and the point of outright exhaustion which I reach before being able to achieve something that even remotely resembles sleep. I don't feel like myself at the moment for many reasons, and I certainly don't feel creative. I can't do much at the moment and that's frustrating. I get out of breath whenever I attempt even simple physical activities and I get out of breath at random times sitting doing nothing. I get moments I feel like I'm being choked and I have to cough but nothing moves when I do. At its worst it can be hard to have a simple conversation with someone without getting breathless which just feels incredulous.
At the same time I do recognise I need rest. I've had to give up a lot of commitments and I've reached a point now where I feel drained pretty much all the time.
In terms of how long this is going to last, I have no idea. I'm waiting to see a consultant for more scans and tests. I believe the next one is a PET scan to see if there are granulomas in my lungs or if my breathing problems are related to swollen glands. I also need more tests before a diagnosis of Sarcoidosis can actually be given, there's still a chance it's not that, at which point I'll be left clueless as to what it could be yet again.
I'm tired. Mentally, physically, and emotionally, I am so tired.
Expectations
In life there are many expectations of us that we encounter. Perhaps the first place we encounter these expectations when younger is through our friends and family. Our friends have expectations of what we should do and say and we call that peer pressure. Our families have expectations of us that we experience as we grow and we tend to refer to that as they way in which people were raised. As we grow older our exposure to the establishment and to various institutions increases and we become more aware of the expectations that society as a whole place upon us.
If you are an LGBT person I would argue that your exposure to society's expectations happens at a much younger age than that of our straight friends. Whilst straight people for instance will grow up in a society where their sexuality is considered the default, it is much more likely that the majority of straight people will have their first kiss, first crush, first boyfriend or girlfriend etc long before their family and society expects it of them. For LGBT people in contrast you are much more likely to be exposed to the reality that other people will react negatively to your first experiences of these events, again primarily through peer pressure at first and then through society's expectations as a whole later in life. There are two main paths this can take unless you find a supportive atmosphere where there is no issue with your sexuality. Those two paths are either to be led into experiencing these events under a veil of secrecy which inherently breeds a feeling of shame which arguably may cause problems later in life in terms of mental health and well being. The other path is to experience these events in the open in an act of rebellion and defiance which in itself can also cause negative effects when you are entrenched in the idea that love is an act of rebellion.
Through it all one question underpins everything we experience and it is quite simply "Why?" - three little letters that throw open a debate that spans generations, borders, culture, race, religion, politics... the list goes on. Ultimately you can boil this down to one simple answer to that question however and that is "Because we believe we should." - whatever the answer that you would pose to the question of why, it is a distraction. It is not an answer in and of itself to the question. Any other answer than this is simply to explain who, what, where, and when, we came to believe that we should. The answer ultimately is simply that we believe we should. Whatever answer you gave is the answer you gave because it is what you believe that answer is, when in reality, the answer you give is your perception of society and what you believe it expects of you.
I know you may argue with me on this but allow me to defend my reasoning for saying this. The main reason I say this is the reason above all else is one simple fact. Society does not exist. Now I know many will argue with me on that and point to various things but I would ask in return to show me society itself. Not something that came about as a result of the perception of society, like religion or politics or government etc, but society itself. "Society" is an abstract concept. It is in reality a term we use to refer to a collection of ideas and what we choose to include in that collection comes down to our collective psyche and what we perceive together - and politics and religion in particular highlight the fact that we don't have to agree on those for them to be included. I would even go so far as to say we are much more likely to include the things we don't agree with in the definition of society than the things we do agree with. Therein lies the problem with using society as a means for progress - it is heavily skewed towards controversy and contempt.
Think about the word society and what you associate with it. Of all the things that come to mind, how many are positive and how many are negative. Do you believe society is fluid or is it something that is fixed? Is it the way the world is in reality, or is it the way the world is expected to be? Ultimately the question you should dwell on most is that of the expectations of others, just as we have discussed the expectations of society, the same question of the expectations others have for us and all that it entails applies - "Why?"
If you are an LGBT person I would argue that your exposure to society's expectations happens at a much younger age than that of our straight friends. Whilst straight people for instance will grow up in a society where their sexuality is considered the default, it is much more likely that the majority of straight people will have their first kiss, first crush, first boyfriend or girlfriend etc long before their family and society expects it of them. For LGBT people in contrast you are much more likely to be exposed to the reality that other people will react negatively to your first experiences of these events, again primarily through peer pressure at first and then through society's expectations as a whole later in life. There are two main paths this can take unless you find a supportive atmosphere where there is no issue with your sexuality. Those two paths are either to be led into experiencing these events under a veil of secrecy which inherently breeds a feeling of shame which arguably may cause problems later in life in terms of mental health and well being. The other path is to experience these events in the open in an act of rebellion and defiance which in itself can also cause negative effects when you are entrenched in the idea that love is an act of rebellion.
Through it all one question underpins everything we experience and it is quite simply "Why?" - three little letters that throw open a debate that spans generations, borders, culture, race, religion, politics... the list goes on. Ultimately you can boil this down to one simple answer to that question however and that is "Because we believe we should." - whatever the answer that you would pose to the question of why, it is a distraction. It is not an answer in and of itself to the question. Any other answer than this is simply to explain who, what, where, and when, we came to believe that we should. The answer ultimately is simply that we believe we should. Whatever answer you gave is the answer you gave because it is what you believe that answer is, when in reality, the answer you give is your perception of society and what you believe it expects of you.
I know you may argue with me on this but allow me to defend my reasoning for saying this. The main reason I say this is the reason above all else is one simple fact. Society does not exist. Now I know many will argue with me on that and point to various things but I would ask in return to show me society itself. Not something that came about as a result of the perception of society, like religion or politics or government etc, but society itself. "Society" is an abstract concept. It is in reality a term we use to refer to a collection of ideas and what we choose to include in that collection comes down to our collective psyche and what we perceive together - and politics and religion in particular highlight the fact that we don't have to agree on those for them to be included. I would even go so far as to say we are much more likely to include the things we don't agree with in the definition of society than the things we do agree with. Therein lies the problem with using society as a means for progress - it is heavily skewed towards controversy and contempt.
Think about the word society and what you associate with it. Of all the things that come to mind, how many are positive and how many are negative. Do you believe society is fluid or is it something that is fixed? Is it the way the world is in reality, or is it the way the world is expected to be? Ultimately the question you should dwell on most is that of the expectations of others, just as we have discussed the expectations of society, the same question of the expectations others have for us and all that it entails applies - "Why?"
Patience
When we think of patience we tend to think of people that are calm, cool, collected, and can handle quite a bit of frustration before they get wound up or even stressed. Stress in itself is an issue that I could write a book on so we will side step that for now. When it comes to patience however, one of the things I find fascinating is that patience is not constant. People who possess it do not do so universally. By this I mean, they do not have the same level of patience for every issue, and the deviation in the range can vary quite significant from issue to issue.
I first learned to program when I was 6 years old, and I had my first computer when I was 5 which was a command line interface. From such a young age with such limited technology, I have grown up with an exposure to technology that at times isn't helpful when things go wrong, isn't descriptive, and above all else, can be incredibly frustrating. That exposure however has led me to have quite a long tolerance when it comes to technology trying my patience. I'll endure much more than the average user, and again this is something most programmers share, because programming by its very nature is trial and error. The amount of repetition that is involved in programming is immense, while many languages and libraries exist to try and reduce this overhead, it can't be avoided entirely.
I recently helped out a friend who got a new computer and one of the things I noticed quite quickly was how short his tolerance was for technology that tries his patience. Eventually we got things sorted but he was for giving up at many points in the process. The reason I find this fascinating is because there's no easy way to determine who will and won't show patience before the fact. He is tech-minded, and does work with computers, even has a degree in computer science, but his remit is decidedly limited to software - when it comes to hardware it seems the patience and tolerance is the inverse of that for software.
I find this correlation interesting, but I don't think it is causation as my own personal experience would contradict that theory as I am comfortable with both hardware and software elements - although there is a definite preference for software. It does make me wonder why this is the case though. Why can we show resounding patience for some things but for others our patience can be non-existent?
I first learned to program when I was 6 years old, and I had my first computer when I was 5 which was a command line interface. From such a young age with such limited technology, I have grown up with an exposure to technology that at times isn't helpful when things go wrong, isn't descriptive, and above all else, can be incredibly frustrating. That exposure however has led me to have quite a long tolerance when it comes to technology trying my patience. I'll endure much more than the average user, and again this is something most programmers share, because programming by its very nature is trial and error. The amount of repetition that is involved in programming is immense, while many languages and libraries exist to try and reduce this overhead, it can't be avoided entirely.
I recently helped out a friend who got a new computer and one of the things I noticed quite quickly was how short his tolerance was for technology that tries his patience. Eventually we got things sorted but he was for giving up at many points in the process. The reason I find this fascinating is because there's no easy way to determine who will and won't show patience before the fact. He is tech-minded, and does work with computers, even has a degree in computer science, but his remit is decidedly limited to software - when it comes to hardware it seems the patience and tolerance is the inverse of that for software.
I find this correlation interesting, but I don't think it is causation as my own personal experience would contradict that theory as I am comfortable with both hardware and software elements - although there is a definite preference for software. It does make me wonder why this is the case though. Why can we show resounding patience for some things but for others our patience can be non-existent?
Worlds Divided By Work And Wealth
I've met people that do all sorts of jobs, from menial and manual labour, through to executives and directors of companies who never leave their offices save for meetings where they sit in board rooms and listen to the same thing over and over again to the point of insanity. One thing that strikes me about this wide range of careers that I've gained insights into through them, is that for many of these people, what they do as a job and where their skills are strongest, are often the things which socially they are either unwilling or unable to do. To put it bluntly they seem only capable of doing what they can do when they are getting paid.
I've met people that have worked in call centres who can spend 10 hours taking or making calls back to back, talking with complete strangers without any problem in doing so, but outside of work they have social anxiety and have that fear of using a telephone for anything beyond work. I've met people who professionally are the most organised people I have ever met, but outside of work their lives, figuratively, and literally, are often a complete mess. I find it fascinating that it doesn't seem to matter what the job is, the same holds true for people through every career I've had the opportunity to discuss with people. Now this doesn't apply to everyone, and there are of course exceptions driven by necessity or out of requests made by friends and family. Still of all, from chefs who work all day preparing food who flat out don't want to cook, they want it handed to them, through to Doctors who never take drugs for any ailment - the vast majority of which also don't take the winter flu vaccine despite being offered it, something which I found curious.
The question I ponder is what is the motivation or rather what drives the lack of motivation to do these things for themselves outside of work? Is it actually laziness, or a tiredness? Exhausted from working all day, they don't have the energy to devote to these tasks? I find that one hard to justify as the reason. Beyond that there is the simple question of repetition and boredom - is it really the monotony of doing something all day and as soon as you don't have to do it you choose not to, and avoid it as much as you can? Or is it something else? Perhaps it's the knowledge that we are paid to do these things and once we find ourselves in a position where we have no financial gain in doing it we are reluctant.
None of these possible explanations address the scenario where completing these tasks would actually be beneficial to the individuals. Take a city trader for example who spends all day working with equities and futures, someone who could further their own personal wealth if they applied the same skill-set they use every day in their jobs to their own finances. Now I know some will argue that it's easier to do when it's someone else's money and you don't personally lose the money when you make a loss, and I can accept that in part, I can also accept that some will have the drive to be self-made and pursue their own independent careers and form their own companies when they gain the experience to do so, but I would argue those people are in a minority, just as those in the above examples who put the effort in outside of work as chefs etc are also a minority. Like a solicitor establishing their own practice, many prefer the security of working with an existing firm, it's only a minority that go it alone.
So whilst there are always exceptions, they are not the focus of my attention. My attention is focused on those that choose not to use the skills they gain in employment in their personal lives. I'm guilty of this myself as there are many things I have done through employment which I could pursue as careers on my own through self employment, but my reason for not doing so is a lack of motivation, but the reason for the lack of motivation is something that eludes me. I know I could, I know the barriers that prevent me could be overcome, and I know that I could handle it as I have proven through employment I can do that work professionally, still of all I have no real reason why I don't I just simply don't, which leaves me asking the same question I ask of others - why?
I know many will read this and think this is very much a first-world-problem, and I will admit that it is, this entire post is self-indulgent, but I would argue this isn't limited to those that live in the first world, and it certainly isn't limited to the boundaries established by it. There are many people in the first world who could use what they know within second and third world countries and produce results that would far outstretch anything they would ever do in the first world. I was once told be a friend of mine from University whose family several generations back came from India, if he ever made enough money he would move to India and live like a King. That's a bizarre concept at first to wrap your head around but that is mainly because of first world guilt at the suggestion of exploiting those in the other worlds. Yet what he suggested highlights the truth, the further "down" the chain you go the more spending power your money gains, and ultimately the more your relative wealth increases, even if the principle sum remains constant. Whilst many dwell on those in poorer countries wanting to come to richer countries for better opportunities, the idea of moving in the other direction seems to be forgotten.
If you can't increase your wealth where you live, is the answer to gaining a better standard of living perhaps that you should move to somewhere where your wealth has significantly increased spending power? If the possibility of answering yes is dancing around in your mind then you find yourself in the same position with your career whether you realise it or not, the work you do in employment benefits someone other than yourself, whereas what you do in your own life benefits yourself. You may not increase your wealth as a result of it but you would be taking a step towards "passing down" the wealth of information from the "first world" of your employment, to the second or third world of your personal life, depending on how abject the two are. We live in an age where information is a commodity, and to possess it is to hold a form of wealth, like all wealth, the further down the chain you go the more powerful it becomes.
That brings us to the final question - is the reason we keep wealth within the first world and do not pass it on to the others the exact same reason why we put the effort into our jobs but not the same effort in our personal lives?
I've met people that have worked in call centres who can spend 10 hours taking or making calls back to back, talking with complete strangers without any problem in doing so, but outside of work they have social anxiety and have that fear of using a telephone for anything beyond work. I've met people who professionally are the most organised people I have ever met, but outside of work their lives, figuratively, and literally, are often a complete mess. I find it fascinating that it doesn't seem to matter what the job is, the same holds true for people through every career I've had the opportunity to discuss with people. Now this doesn't apply to everyone, and there are of course exceptions driven by necessity or out of requests made by friends and family. Still of all, from chefs who work all day preparing food who flat out don't want to cook, they want it handed to them, through to Doctors who never take drugs for any ailment - the vast majority of which also don't take the winter flu vaccine despite being offered it, something which I found curious.
The question I ponder is what is the motivation or rather what drives the lack of motivation to do these things for themselves outside of work? Is it actually laziness, or a tiredness? Exhausted from working all day, they don't have the energy to devote to these tasks? I find that one hard to justify as the reason. Beyond that there is the simple question of repetition and boredom - is it really the monotony of doing something all day and as soon as you don't have to do it you choose not to, and avoid it as much as you can? Or is it something else? Perhaps it's the knowledge that we are paid to do these things and once we find ourselves in a position where we have no financial gain in doing it we are reluctant.
None of these possible explanations address the scenario where completing these tasks would actually be beneficial to the individuals. Take a city trader for example who spends all day working with equities and futures, someone who could further their own personal wealth if they applied the same skill-set they use every day in their jobs to their own finances. Now I know some will argue that it's easier to do when it's someone else's money and you don't personally lose the money when you make a loss, and I can accept that in part, I can also accept that some will have the drive to be self-made and pursue their own independent careers and form their own companies when they gain the experience to do so, but I would argue those people are in a minority, just as those in the above examples who put the effort in outside of work as chefs etc are also a minority. Like a solicitor establishing their own practice, many prefer the security of working with an existing firm, it's only a minority that go it alone.
So whilst there are always exceptions, they are not the focus of my attention. My attention is focused on those that choose not to use the skills they gain in employment in their personal lives. I'm guilty of this myself as there are many things I have done through employment which I could pursue as careers on my own through self employment, but my reason for not doing so is a lack of motivation, but the reason for the lack of motivation is something that eludes me. I know I could, I know the barriers that prevent me could be overcome, and I know that I could handle it as I have proven through employment I can do that work professionally, still of all I have no real reason why I don't I just simply don't, which leaves me asking the same question I ask of others - why?
I know many will read this and think this is very much a first-world-problem, and I will admit that it is, this entire post is self-indulgent, but I would argue this isn't limited to those that live in the first world, and it certainly isn't limited to the boundaries established by it. There are many people in the first world who could use what they know within second and third world countries and produce results that would far outstretch anything they would ever do in the first world. I was once told be a friend of mine from University whose family several generations back came from India, if he ever made enough money he would move to India and live like a King. That's a bizarre concept at first to wrap your head around but that is mainly because of first world guilt at the suggestion of exploiting those in the other worlds. Yet what he suggested highlights the truth, the further "down" the chain you go the more spending power your money gains, and ultimately the more your relative wealth increases, even if the principle sum remains constant. Whilst many dwell on those in poorer countries wanting to come to richer countries for better opportunities, the idea of moving in the other direction seems to be forgotten.
If you can't increase your wealth where you live, is the answer to gaining a better standard of living perhaps that you should move to somewhere where your wealth has significantly increased spending power? If the possibility of answering yes is dancing around in your mind then you find yourself in the same position with your career whether you realise it or not, the work you do in employment benefits someone other than yourself, whereas what you do in your own life benefits yourself. You may not increase your wealth as a result of it but you would be taking a step towards "passing down" the wealth of information from the "first world" of your employment, to the second or third world of your personal life, depending on how abject the two are. We live in an age where information is a commodity, and to possess it is to hold a form of wealth, like all wealth, the further down the chain you go the more powerful it becomes.
That brings us to the final question - is the reason we keep wealth within the first world and do not pass it on to the others the exact same reason why we put the effort into our jobs but not the same effort in our personal lives?
The Good Bit
How high do you believe is your tolerance of mediocrity? In an increasingly digital world where more and more of what we do is on-demand, the element of control when it comes to the content we consume is shifting more to the individual, to the consumer, rather than the distributor. Take television as an example. There was a time when it was broadcast, with a set schedule, which you had to adhere to if you wanted to consume the content it offered. Then came video recorders which allowed people to record TV shows to watch at a time they wanted, and thus the transference of control began.
Recording a TV show required a lot more effort than it does today. You needed a VHS, a recorder, you had to either record it at the time it was being aired manually - which defeats the point - or you had to set it to record, which required knowing the time and date and channel and manually entering this information. When PVRs and DVRs came along, [Personal/Digital Video Recorders] the process was simplified. The likes of Sky+ and TiVo made it easier for people to record things at the touch of a button. Yet again, more power shifted.
Fast forward to the present and we have on-demand services where we can select the programmes we want to watch and play them, there's no need to have recorded it in the first place because the content streams to you from the provider when you want to. For advertisers that presented a problem because they lost the ability to target advertisements to wider audiences based on viewing figures, and as was the problem when VHS was around, people simply skip the ads.
While advertisers may not get much sympathy from people, there are a group of people involved in this whole process which are overlooked - the content creators. When television had a set schedule that had to be adhered to for fear of missing out, those creators had a lot more leniency when it came to holding the viewer's attention. When you control the content yourself however, there is no requirement to consume the entirety of the content. When you control the content you consume you can skip the crap and get to the good bit.
There are two arguments you can make given this deference of control. One is to say that this is good for content consumers in that it forces the creators to make higher quality content which is more consistent in its entertainment value so as to make the entire thing "the good bit" without anything you would want to skip. The other argument is to say that having content comprised 100% of "good bits" is unrealistic and can never be achieved. I don't think the issue is as black and white as this, but to entertain these two points of view it leaves a question. Have we progressed beyond order, and entered into chaos? The more you give people control, the harder it becomes to predict what they will do with it. Which makes you question how a content creator is meant to achieve a narrative without being linear.
There are few mediums that work with non-linear consumption. Games are perhaps the best example as many games allow you to explore a world in your own way. Music would be another example as most people who buy albums will inevitably have favourite tracks they listen to more than others and for most I would say the ritual of listening to an album in order of track number is something that has all but been forgotten, saved only for the first time they play an album to see what each track is like - but even at that I would not be surprised if the majority skipped through each track to find which ones they liked most first.
From all I have said there remains to be only two mediums of entertainment that are resistant to disorder, they would be the Theatre, and Books. I would argue these two are perhaps the only two that can't be broken down by this change in control. With Theatre the audience must sit and watch and consume at a pace controlled by the performance itself - be that live action through plays or be it through cinema. As for Books and reading there are very few books where you will be able to follow the story if you were to read the chapters out of order, and fewer still where one would return and only read one chapter from that book.
As a final note, I would like to return to the argument that deference of control will force content creators to produce higher quality content. The trend of deferring control of consumption to the consumer is one that has been growing long-term. It's not something new, and it has been influencing the content we consumer for many years now. As far as the argument of motivation to create increased quality content is concerned I would like to invite you to explore this thought on your own, consider the evidence, and the way content has evolved over the past decade or two, and decide for yourself whether the quality of that content has increased or decreased, and ponder what the cause of that change has been.
Recording a TV show required a lot more effort than it does today. You needed a VHS, a recorder, you had to either record it at the time it was being aired manually - which defeats the point - or you had to set it to record, which required knowing the time and date and channel and manually entering this information. When PVRs and DVRs came along, [Personal/Digital Video Recorders] the process was simplified. The likes of Sky+ and TiVo made it easier for people to record things at the touch of a button. Yet again, more power shifted.
Fast forward to the present and we have on-demand services where we can select the programmes we want to watch and play them, there's no need to have recorded it in the first place because the content streams to you from the provider when you want to. For advertisers that presented a problem because they lost the ability to target advertisements to wider audiences based on viewing figures, and as was the problem when VHS was around, people simply skip the ads.
While advertisers may not get much sympathy from people, there are a group of people involved in this whole process which are overlooked - the content creators. When television had a set schedule that had to be adhered to for fear of missing out, those creators had a lot more leniency when it came to holding the viewer's attention. When you control the content yourself however, there is no requirement to consume the entirety of the content. When you control the content you consume you can skip the crap and get to the good bit.
There are two arguments you can make given this deference of control. One is to say that this is good for content consumers in that it forces the creators to make higher quality content which is more consistent in its entertainment value so as to make the entire thing "the good bit" without anything you would want to skip. The other argument is to say that having content comprised 100% of "good bits" is unrealistic and can never be achieved. I don't think the issue is as black and white as this, but to entertain these two points of view it leaves a question. Have we progressed beyond order, and entered into chaos? The more you give people control, the harder it becomes to predict what they will do with it. Which makes you question how a content creator is meant to achieve a narrative without being linear.
There are few mediums that work with non-linear consumption. Games are perhaps the best example as many games allow you to explore a world in your own way. Music would be another example as most people who buy albums will inevitably have favourite tracks they listen to more than others and for most I would say the ritual of listening to an album in order of track number is something that has all but been forgotten, saved only for the first time they play an album to see what each track is like - but even at that I would not be surprised if the majority skipped through each track to find which ones they liked most first.
From all I have said there remains to be only two mediums of entertainment that are resistant to disorder, they would be the Theatre, and Books. I would argue these two are perhaps the only two that can't be broken down by this change in control. With Theatre the audience must sit and watch and consume at a pace controlled by the performance itself - be that live action through plays or be it through cinema. As for Books and reading there are very few books where you will be able to follow the story if you were to read the chapters out of order, and fewer still where one would return and only read one chapter from that book.
As a final note, I would like to return to the argument that deference of control will force content creators to produce higher quality content. The trend of deferring control of consumption to the consumer is one that has been growing long-term. It's not something new, and it has been influencing the content we consumer for many years now. As far as the argument of motivation to create increased quality content is concerned I would like to invite you to explore this thought on your own, consider the evidence, and the way content has evolved over the past decade or two, and decide for yourself whether the quality of that content has increased or decreased, and ponder what the cause of that change has been.
A few words about stress
Serenity is sitting on the crest of hill with a clear blue sky above rarely graced by cloud, with the sun shining down, a cool breeze gently flowing over you. The grass on the hillside bristling lightly, buttercups dancing in the wind, their yellow petals shining brilliantly. There is no-one around for miles, no structures stand in sight. All you can see are green fields sprawling out reaching the horizon, with rows of trees in misshapen grids. In the distance birds sing, and as you sit you breathe in deep and slow and exhale with a soft sigh.
Finding a point of reflection, where you can sit and bring yourself to peace and serenity just for a while, this is something I try to do. I wouldn't call it meditation, as I don't sit in any particular position such as lotus, and I don't engage in breathing exercises to try and bring about a relaxed state. I've explored meditation before and it never really did anything for me. What I try to do with visualisation is to find a moment where I can rest and "reset" in an effort to find new energy within myself to begin again.
This is what works for me, but the concept remains the same. Try to find something that allows you to distract yourself for a moment each day. Something that allows you to think of nothing of consequence. Be it through music, movie, visualisation, or even through physical activity.
When stress rises and the things that burden us grow heavy, the most important thing to remember is to stop and breathe every now and then. It's easy to see a mountain of work, throw yourself into it, and work until you find yourself exhausted and simply want to sleep. Doing this won't make you more productive. When we study in school, and we learn about revision techniques for exams it's a common piece of advice to take regular breaks, yet this advice which we hear when we are in school is something which we don't carry over into our personal and professional lives as we grow older. The way we treated exam times which were the most stressful times for students, is the way we should treat our lives when we feel stressed. Never underestimate the power of structure, organisation, routine, and most importantly rest.
Finding a point of reflection, where you can sit and bring yourself to peace and serenity just for a while, this is something I try to do. I wouldn't call it meditation, as I don't sit in any particular position such as lotus, and I don't engage in breathing exercises to try and bring about a relaxed state. I've explored meditation before and it never really did anything for me. What I try to do with visualisation is to find a moment where I can rest and "reset" in an effort to find new energy within myself to begin again.
This is what works for me, but the concept remains the same. Try to find something that allows you to distract yourself for a moment each day. Something that allows you to think of nothing of consequence. Be it through music, movie, visualisation, or even through physical activity.
When stress rises and the things that burden us grow heavy, the most important thing to remember is to stop and breathe every now and then. It's easy to see a mountain of work, throw yourself into it, and work until you find yourself exhausted and simply want to sleep. Doing this won't make you more productive. When we study in school, and we learn about revision techniques for exams it's a common piece of advice to take regular breaks, yet this advice which we hear when we are in school is something which we don't carry over into our personal and professional lives as we grow older. The way we treated exam times which were the most stressful times for students, is the way we should treat our lives when we feel stressed. Never underestimate the power of structure, organisation, routine, and most importantly rest.
The Question Of Who
I haven't been able to sit down and write for some time now. It's not because I don't have the time, it's not because I don't have the motivation either. I also wouldn't be so quick to label it writers' block for the simple reason that I have had a myriad of ideas running through my head which I'd like to write about and I have had topics I want to research and explore. The reason I haven't done any of this is because I'm in a mindset at the moment where I am finding it hard to judge what others want. When it comes to this blog, most of my posts are simply the articulation of my thoughts which I push out into the ether with no real thought of who might read it or what they think. This blog is very much a creative outlet. I do write more than what I post here however. I write novels which I publish through Amazon via Kindle Direct Publishing, and I write other pieces for publishing elsewhere. It is my writing beyond this blog that I haven't been able to progress through.
When you write a novel or a work of fiction, you have to consider a target audience, you have to consider a genre and themes etc which help you market what you write. You can abandon all of that and write free-form but what you will produce is something which will prove very hard to promote. Google and the nature of the internet as it is today has pushed people into a corner where the only information that they can find online is the information they actively seek - in other words to "find" anything online you must already know what you are looking for. This is perhaps one of the reasons viral marketing has become so popular, in many ways it can be considered a metaphorical cactus of creativity, which travels across the internet popping the bubbles we trap ourselves inside. Viral marketing transcends what you search for, and creates content that actively finds you instead. Which is all fascinating I am sure but the basic point is novels don't go viral.
Virality online centres around things that are short and to the point, usually funny, or disturbingly graphic, neither of which fall under the range of subjects I write about. I guess what I am saying is when you create content you do it for consumption and when you have no-one in mind to consume it you find yourself with a barrier to the creation process.
I guess this all comes down to myself asking a simple question, "Who am I doing this for?"
When you write a novel or a work of fiction, you have to consider a target audience, you have to consider a genre and themes etc which help you market what you write. You can abandon all of that and write free-form but what you will produce is something which will prove very hard to promote. Google and the nature of the internet as it is today has pushed people into a corner where the only information that they can find online is the information they actively seek - in other words to "find" anything online you must already know what you are looking for. This is perhaps one of the reasons viral marketing has become so popular, in many ways it can be considered a metaphorical cactus of creativity, which travels across the internet popping the bubbles we trap ourselves inside. Viral marketing transcends what you search for, and creates content that actively finds you instead. Which is all fascinating I am sure but the basic point is novels don't go viral.
Virality online centres around things that are short and to the point, usually funny, or disturbingly graphic, neither of which fall under the range of subjects I write about. I guess what I am saying is when you create content you do it for consumption and when you have no-one in mind to consume it you find yourself with a barrier to the creation process.
I guess this all comes down to myself asking a simple question, "Who am I doing this for?"
Same Old Story
I'm getting old. Next week I will turn 29, and while I don't consider that to be "old" as such, I can't deny that I am growing older. As much as I like to think of myself as still being young, there are many things that serve as reminders that I am not. I have spoken before about the fact that this is 2017 and there are 17 year olds alive now who weren't even born in the same millennium as me, and the coming year when 2018 finally arrives there will be 18 year olds too. However despite that being in the back of my mind, there was something else that made me come face to face with my youth, or lack of it.
From time to time I like to watch videos on youtube of people playing games. Playthroughs and "Let's Play" series as some youtubers call them let you live vicariously through others, they let you see other people experience something for the first time and see how they react and in the case of puzzle and strategy games that interest me the most, it lets me see how other people think. Every now and then however I like to revisit games from my youth, and there is one game in particular that I was quite fond of and which most people still regard in high esteem - Super Mario World for the SNES.
I was about 5 when I first played it as I was born in 1988 and it wasn't until around 1993 that I actually got an SNES. Super Mario World itself was released in 1990 which makes it 27 years old this year. What served as a reminder of my age however was an off the cuff comment this youtuber made about the game - "I wasn't even born when this was released" which they said in passing as reason why they had never played it and that stayed with me longer than it should. It stayed with me because it served as a reminder that there are people who are adults, in their 20s, who have lived their entire lives without experiencing things which formed such a big part of my life when I was younger. That serves to remind you that despite the fact there may only be 5 or 6 years between you and them, you're part of a different generation.
That word is hard to define, "generation" - in the 90s it was used quite a bit with the term "Generation X" and later to a lesser extent "Generation Y" which would imply Millennials would be Generation Z, the last generation, which says a lot about the world and the way it is today. The question is which do you fit into? The definition I see most widely used for Millennials is anyone who turned 18 on or after the year 2000, which includes everyone born in this millennium, but as this millennium approaches its 18th year next year there does seem to be need for a new term, or to revise what counts as being part of it.
I was born in the 80s which would make me an 80s kid, yet being born in 88 means I didn't experience anything in relation to pop culture from the 80s as a child, it was the 90s that formed the bulk of my chilhood from age 2 to 12. I realise this is putting a lot of emphasis into labelling your childhood which is not the intention, rather the intention is to get a better understanding of who I would be most likely to have things in common with. I'm from that middle generation that experienced both dialup internet and broadband when growing up, that experienced analogue satellite and digital satellite and the jump between the two. Going from 56kbps internet to 2mbps at the time, and going from 30 something channels on Sky Analogue to 300+ on Sky Digital back when it was actually called Sky Digital.
I still remember the first mobile phone I had, a black Phillips BT Cellnet phone that was like a brick and had a screen with a 2 line LCD screen like a calculator. I remember each handset I had over the years up until today having a smartphone that has more power than the first computer I ever owned. Even with computers I've gone from an Amstrad CPC-464 with a green monochromatic display with a command line operating system, through the many computers I've had over the years up until my current desktop.
I do feel anyone around my age may suffer from an identity crisis of sorts as technology and society and culture moved so fast in such a short period of time there haven't been many things that have remained constant that you can anchor yourself down to. I guess this could also be fuelled by the fact the world right now seems to be going through an upheaval and there is a lot of change happening, and throughout my life everything has been about progress and moving forward and for the first time there seems to be an actual desire being expressed sincerely by others to go back and to regress. I don't want to do that.
As much as I look back on things with nostalgia, I value the advances that I have experienced. I value fast internet, I value having a world of choice which admittedly can be overwhelming but I would rather be overwhelmed than be left unsatisfied. I'd rather be given so much choice that I don't know what to pick, because it means I can pick anything, than be put in a position where I have no choice at all, because that's no way to live a life, if anything you're actively removing the spirit of life itself and forcing someone into monotony by doing that.
What is life worth if all you do is sleep, wake, wash, eat, work, eat, wash, sleep, and repeat? What is the difference between you and a robot on an assembly line if you can't use the one thing that makes you different - the freedom to make choices - why would you want to give that up?
From time to time I like to watch videos on youtube of people playing games. Playthroughs and "Let's Play" series as some youtubers call them let you live vicariously through others, they let you see other people experience something for the first time and see how they react and in the case of puzzle and strategy games that interest me the most, it lets me see how other people think. Every now and then however I like to revisit games from my youth, and there is one game in particular that I was quite fond of and which most people still regard in high esteem - Super Mario World for the SNES.
I was about 5 when I first played it as I was born in 1988 and it wasn't until around 1993 that I actually got an SNES. Super Mario World itself was released in 1990 which makes it 27 years old this year. What served as a reminder of my age however was an off the cuff comment this youtuber made about the game - "I wasn't even born when this was released" which they said in passing as reason why they had never played it and that stayed with me longer than it should. It stayed with me because it served as a reminder that there are people who are adults, in their 20s, who have lived their entire lives without experiencing things which formed such a big part of my life when I was younger. That serves to remind you that despite the fact there may only be 5 or 6 years between you and them, you're part of a different generation.
That word is hard to define, "generation" - in the 90s it was used quite a bit with the term "Generation X" and later to a lesser extent "Generation Y" which would imply Millennials would be Generation Z, the last generation, which says a lot about the world and the way it is today. The question is which do you fit into? The definition I see most widely used for Millennials is anyone who turned 18 on or after the year 2000, which includes everyone born in this millennium, but as this millennium approaches its 18th year next year there does seem to be need for a new term, or to revise what counts as being part of it.
I was born in the 80s which would make me an 80s kid, yet being born in 88 means I didn't experience anything in relation to pop culture from the 80s as a child, it was the 90s that formed the bulk of my chilhood from age 2 to 12. I realise this is putting a lot of emphasis into labelling your childhood which is not the intention, rather the intention is to get a better understanding of who I would be most likely to have things in common with. I'm from that middle generation that experienced both dialup internet and broadband when growing up, that experienced analogue satellite and digital satellite and the jump between the two. Going from 56kbps internet to 2mbps at the time, and going from 30 something channels on Sky Analogue to 300+ on Sky Digital back when it was actually called Sky Digital.
I still remember the first mobile phone I had, a black Phillips BT Cellnet phone that was like a brick and had a screen with a 2 line LCD screen like a calculator. I remember each handset I had over the years up until today having a smartphone that has more power than the first computer I ever owned. Even with computers I've gone from an Amstrad CPC-464 with a green monochromatic display with a command line operating system, through the many computers I've had over the years up until my current desktop.
I do feel anyone around my age may suffer from an identity crisis of sorts as technology and society and culture moved so fast in such a short period of time there haven't been many things that have remained constant that you can anchor yourself down to. I guess this could also be fuelled by the fact the world right now seems to be going through an upheaval and there is a lot of change happening, and throughout my life everything has been about progress and moving forward and for the first time there seems to be an actual desire being expressed sincerely by others to go back and to regress. I don't want to do that.
As much as I look back on things with nostalgia, I value the advances that I have experienced. I value fast internet, I value having a world of choice which admittedly can be overwhelming but I would rather be overwhelmed than be left unsatisfied. I'd rather be given so much choice that I don't know what to pick, because it means I can pick anything, than be put in a position where I have no choice at all, because that's no way to live a life, if anything you're actively removing the spirit of life itself and forcing someone into monotony by doing that.
What is life worth if all you do is sleep, wake, wash, eat, work, eat, wash, sleep, and repeat? What is the difference between you and a robot on an assembly line if you can't use the one thing that makes you different - the freedom to make choices - why would you want to give that up?
Pointedly to thee...
Pointedly to thee I put the question that dawns on me, for why art thou here in this play? This play in which thou acts, with its never-ending scene of a dream? A dream of thine own making, whether it be fair or foul is of no concern to me, for mine own play has a story of which it tells. Yet be here in this scene a moment where two paths meet and strangers as we do, dance through airs and graces beneath our masks that hide our faces. We share the ritual and fall in line, playing our parts in perfect time, a story we tell for others to read, as we deny ourselves what we truly need. Truly in truth for all to see there in lies true honesty, a virtue long lost by many it seems, banished only to our thoughts and dreams, in those corners of our darkened mind, we find the people we think so kind.
A vision of thee is for what I search, and why I walk this dreaded Earth. This world was once a dream so bright, and in that dream there was hope and light, yet here in this day and this hour I find, nothing but darkness that shrouds my mind. Still of all you sit there and read, what you see in search of some great need, in hope that my words will seep into you, and in those words you'll find something true. If truth in truth is what you seek, a quest that is bestowed on the meek, if that be true and that's why you are here, then perhaps your truth may indeed be near.
For me alone this is still unknown, for what I seek I can not say, for I do not know in this hour or day, for what I search eludes even my mind, and thus hope dwindles that it I may find. If truth in truth is what I too seek, then perhaps I can say that I am also meek, it is said the Earth is ours to inherit, but of that charge I question the merit, no-one said where, when, or how this is met, and better still in what state it is beget. If truth in truth will let itself be known, perhaps in wisdom the path is unshown, an end to be met by a journey so rough, that the thought alone is enough, what is to come can not be shared, perhaps because we would be scared. If fear is rational in times of woe, and this is a time of this we know, then fear in this moment can be justified, if we fend it off with hope inside. A path unfurls even now at our feet, the strength to walk is what we need, as mountains rise high above land and sea, our paths cross again between you and me.
We stand together in this moment in time, and play our parts line after line, but soon the curtain will fall to the ground, and in that moment there will be no sound, only a vision of the last path we have left, and in that moment we must be deft, the decision we will make in the blink of an eye, whether to stop or whether to try, in that moment the masks shall fall and our faces we shall bare to one and all, truth in truth is what we shall confront at last, we shall look to the future and forget the past.
A vision of thee is for what I search, and why I walk this dreaded Earth. This world was once a dream so bright, and in that dream there was hope and light, yet here in this day and this hour I find, nothing but darkness that shrouds my mind. Still of all you sit there and read, what you see in search of some great need, in hope that my words will seep into you, and in those words you'll find something true. If truth in truth is what you seek, a quest that is bestowed on the meek, if that be true and that's why you are here, then perhaps your truth may indeed be near.
For me alone this is still unknown, for what I seek I can not say, for I do not know in this hour or day, for what I search eludes even my mind, and thus hope dwindles that it I may find. If truth in truth is what I too seek, then perhaps I can say that I am also meek, it is said the Earth is ours to inherit, but of that charge I question the merit, no-one said where, when, or how this is met, and better still in what state it is beget. If truth in truth will let itself be known, perhaps in wisdom the path is unshown, an end to be met by a journey so rough, that the thought alone is enough, what is to come can not be shared, perhaps because we would be scared. If fear is rational in times of woe, and this is a time of this we know, then fear in this moment can be justified, if we fend it off with hope inside. A path unfurls even now at our feet, the strength to walk is what we need, as mountains rise high above land and sea, our paths cross again between you and me.
We stand together in this moment in time, and play our parts line after line, but soon the curtain will fall to the ground, and in that moment there will be no sound, only a vision of the last path we have left, and in that moment we must be deft, the decision we will make in the blink of an eye, whether to stop or whether to try, in that moment the masks shall fall and our faces we shall bare to one and all, truth in truth is what we shall confront at last, we shall look to the future and forget the past.
The Lark
Sweet song of a Lark you break the day
Filling the air as verdant branches sway
So sweet and innocent your voice does chime
With peak and trough in perfect time
A song unknown to human ears
Void of sorrow, angst, and fears
Pure and joyous to be so carefree
Amicable is your sweet serenade to me
I close my eyes and listen to your song
And for a moment forget what is wrong
For all we have done, life still persists
So long as it does, hope still exists
Filling the air as verdant branches sway
So sweet and innocent your voice does chime
With peak and trough in perfect time
A song unknown to human ears
Void of sorrow, angst, and fears
Pure and joyous to be so carefree
Amicable is your sweet serenade to me
I close my eyes and listen to your song
And for a moment forget what is wrong
For all we have done, life still persists
So long as it does, hope still exists
Could a machine take your job?
When we speak about the possibility of robots taking our jobs, and the idea of machines working more efficiently than us, historically we focused on manual labour. That is to say we spoke about factory jobs, production lines, things where we as people carried out repetitive tasks with little variation. These roles were relatively easy to replace with machines. We have now lived with an automotive industry that for decades has used automated assembly lines.
There was an argument at the time that these steps forward would mean the loss of jobs for people, and that was true. There was also an argument that said the machines would still need to be maintained and while jobs would be lost there would also be jobs created to maintain the automated assembly lines, and again this was true. Ever since that time however there have been competing views, those who hold on to the first, and those who hold on to the second. In my view I have considered both points of view and I see the first as valid, the second as not. The reason I see it this way is because I have studied Artificial Intelligence, and developed Agents, and one thing remains true throughout everything I studied - if you can teach it, they can learn it. Almost everything you do as a human being you were taught how to do.
The barrier to machines taking the majority of people's jobs remains the same as it did back then - teaching. Or to be more specific, machine learning. It wasn't possible at the time for a machine to maintain itself and to accurately diagnose the wealth of problems that could go wrong many of which would be unforseen, and in that vein they could not be programmed to respond to the unforeseen. Today however this isn't true. Advances in machine learning and the way we program have allowed us to create Agents which can adapt over time. This barrier is however crumbling, and as it crumbles it is being replaced by other more traditional barriers, such as cost, resources, and politics.
In London the Docklands Light Railway [DLR] has been operating since 1987. The DLR is a driverless train system. While some staff are still required primarily for security and in the event of failure, the trains for the most part run on their own. In more recent times we have seen driverless cars enter into the mainstream. The question of job security is once again coming to the forefront, and the question of whether a machine could one day take your job is something many people now ask themselves. You still get people who defend the viewpoint that their jobs could never be replaced. You get people who think that their job requires a human touch, and that a machine could never learn the intricacies of their work. You still get people that work in places like call centres and think that people won't talk to machines they want to talk to people.
People won't want to talk to machines - are you sure about that? I would argue the only reason that was ever the case was the lack of engagement machines provided in the past. I would argue it had nothing to do with the fact it was a machine and would go so far as to say the fact that people so openly embrace Siri, Cortana, Alexa, and OK Google so freely and are perfectly comfortable talking to their machines that this really is not the case. The question then turns to whether a machine can learn how to do your job. Well as far as call centres are concerned the answer to that is yes as far as I am concerned and the reason why is one basic fact:
Basic Fact #1 about call centres: All calls are recorded.
You're used to being told "Your call may be recorded for training and monitoring purposes" but what you probably don't know unless you have worked in a call centre is long before you hear that message, your call is already being recorded. I have worked in a call centre and I can tell you quite simply, every single call is recorded, and we can hear you before you can hear us.
Every call is recorded for quality assurance, for legal disputes, and yes for training and monitoring purposes. The call centre I worked in dealt with financial services and there were around 200 people on the floor. Each one handles about 50 calls per hour, we can say 40 for lenience sake and imagine the majority never met their KPI targets. On the floor there would be around 200 staff at any given time, working on rotation some would leave and others would replace them at the end of their shifts. The centre handled calls from 8am to 8pm. They handled calls 52 weeks of the year with reduced service on 28 days of holiday which included bank holidays.
With 52 weeks in the year, each 5 days long Monday to Friday, that is 260 days, minus 28 for holidays makes it 232 days worked per person on average per year. Let's drop it to say 220 to allow for sickness and absence. So we have 220 days worth of calls per call handler, that's for one year. For 12 hours per day, 40 calls per hour, 200 staff on the floor, 220 days of the year, that makes 21.1 million calls. The centre keeps all calls for 6 years in accordance with the financial regulations so they have about 126.7 million calls on file. If you say each call lasts about 1 minute, then divide by 60, they have 2.1 million hours of phone calls on file.
With 2.1 million hours of recording, a machine learning algorithm could digest the lot and learn very quickly how to do your job. There is no practical barrier to this technologically today, the only barrier to this is now cost.
Could a machine take your job? Yes quite easily.
There was an argument at the time that these steps forward would mean the loss of jobs for people, and that was true. There was also an argument that said the machines would still need to be maintained and while jobs would be lost there would also be jobs created to maintain the automated assembly lines, and again this was true. Ever since that time however there have been competing views, those who hold on to the first, and those who hold on to the second. In my view I have considered both points of view and I see the first as valid, the second as not. The reason I see it this way is because I have studied Artificial Intelligence, and developed Agents, and one thing remains true throughout everything I studied - if you can teach it, they can learn it. Almost everything you do as a human being you were taught how to do.
The barrier to machines taking the majority of people's jobs remains the same as it did back then - teaching. Or to be more specific, machine learning. It wasn't possible at the time for a machine to maintain itself and to accurately diagnose the wealth of problems that could go wrong many of which would be unforseen, and in that vein they could not be programmed to respond to the unforeseen. Today however this isn't true. Advances in machine learning and the way we program have allowed us to create Agents which can adapt over time. This barrier is however crumbling, and as it crumbles it is being replaced by other more traditional barriers, such as cost, resources, and politics.
In London the Docklands Light Railway [DLR] has been operating since 1987. The DLR is a driverless train system. While some staff are still required primarily for security and in the event of failure, the trains for the most part run on their own. In more recent times we have seen driverless cars enter into the mainstream. The question of job security is once again coming to the forefront, and the question of whether a machine could one day take your job is something many people now ask themselves. You still get people who defend the viewpoint that their jobs could never be replaced. You get people who think that their job requires a human touch, and that a machine could never learn the intricacies of their work. You still get people that work in places like call centres and think that people won't talk to machines they want to talk to people.
People won't want to talk to machines - are you sure about that? I would argue the only reason that was ever the case was the lack of engagement machines provided in the past. I would argue it had nothing to do with the fact it was a machine and would go so far as to say the fact that people so openly embrace Siri, Cortana, Alexa, and OK Google so freely and are perfectly comfortable talking to their machines that this really is not the case. The question then turns to whether a machine can learn how to do your job. Well as far as call centres are concerned the answer to that is yes as far as I am concerned and the reason why is one basic fact:
Basic Fact #1 about call centres: All calls are recorded.
You're used to being told "Your call may be recorded for training and monitoring purposes" but what you probably don't know unless you have worked in a call centre is long before you hear that message, your call is already being recorded. I have worked in a call centre and I can tell you quite simply, every single call is recorded, and we can hear you before you can hear us.
Every call is recorded for quality assurance, for legal disputes, and yes for training and monitoring purposes. The call centre I worked in dealt with financial services and there were around 200 people on the floor. Each one handles about 50 calls per hour, we can say 40 for lenience sake and imagine the majority never met their KPI targets. On the floor there would be around 200 staff at any given time, working on rotation some would leave and others would replace them at the end of their shifts. The centre handled calls from 8am to 8pm. They handled calls 52 weeks of the year with reduced service on 28 days of holiday which included bank holidays.
With 52 weeks in the year, each 5 days long Monday to Friday, that is 260 days, minus 28 for holidays makes it 232 days worked per person on average per year. Let's drop it to say 220 to allow for sickness and absence. So we have 220 days worth of calls per call handler, that's for one year. For 12 hours per day, 40 calls per hour, 200 staff on the floor, 220 days of the year, that makes 21.1 million calls. The centre keeps all calls for 6 years in accordance with the financial regulations so they have about 126.7 million calls on file. If you say each call lasts about 1 minute, then divide by 60, they have 2.1 million hours of phone calls on file.
With 2.1 million hours of recording, a machine learning algorithm could digest the lot and learn very quickly how to do your job. There is no practical barrier to this technologically today, the only barrier to this is now cost.
Could a machine take your job? Yes quite easily.
Poignancy
Some people watch movies to see happiness, others watch them to see moments of sheer terror or horror in a way that is safe to experience. There are many different genres of film that grace our screens, none more than at any point in history for the simple fact that cinema is a cumulative industry. That which came before does not cease to exist as the industry advances, much like that of the music industry. One industry I find intriguing however is the gaming industry.
I have a degree in Computer Science with Games Technology, which I spent 3 years at University to achieve. For the most part I have not ventured very far into the games industry as a whole mainly because of a disillusionment that gripped me when I studied it at University. I've written about this before, of how the fourth wall was broken when I studied the mechanics of game design, and how the magic of the games themselves was lost. It's taken some time for me to move beyond that and find myself in a position where I can once again enjoy games without thinking about the technology and the technicalities of their design to a level that destroys the experience. One way that I have been able to recover this love of gaming is to go beyond the traditional nature of gaming and explore the innovative side, where intrigue and mystery still exists, where "I wonder how that is done" isn't a question that is easily answered.
To go beyond tradition is to go beyond the usual and the repetitive and search for the things you would not expect to be gripping. The greatest example I have of achieving this is to go beyond the obviously evocative emotions of happiness and terror or horror, and venture into the emotions that are harder to trigger. It's harder to make people feel sad, in a constructive way. It's easy to do in a destructive way, but there's no enjoyment to be found there. Sadness for the sake of being sad often ends up producing contrived content. This is where poignancy comes into play. Poignancy is essentially constructive sadness; a sadness that evokes an empathic response. Games like The Beginner's Guide do this very well. The Beginner's Guide was developed by Davey Wreden, who also developed The Stanley Parable another game which employs similar themes of evoking an empathy within the player for the person they play in the game. Worthy of note here is the fact that in both cases you "play" as a character within the games but no character actually exists, instead you take on a role and engage in the story as the main character. Also worthy of note is that both games are driven by a narrator, and employ storytelling as their main mechanic.
I have a love of writing, which I have made no secret of here on this blog. I have also written quite a few stories and a few books that I have self-published and one that is in print. What I would like to achieve at some point is to take a story I create and make a game out of it, but not in the traditional sense. What I would seek to do is to capture poignancy through the art form rather than get bogged down in the technicality. This isn't something I devote a lot of my time to however as I feel it's one of those things that would be nice to do but probably won't happen in reality. That in and of itself is rather sad.
I have a degree in Computer Science with Games Technology, which I spent 3 years at University to achieve. For the most part I have not ventured very far into the games industry as a whole mainly because of a disillusionment that gripped me when I studied it at University. I've written about this before, of how the fourth wall was broken when I studied the mechanics of game design, and how the magic of the games themselves was lost. It's taken some time for me to move beyond that and find myself in a position where I can once again enjoy games without thinking about the technology and the technicalities of their design to a level that destroys the experience. One way that I have been able to recover this love of gaming is to go beyond the traditional nature of gaming and explore the innovative side, where intrigue and mystery still exists, where "I wonder how that is done" isn't a question that is easily answered.
To go beyond tradition is to go beyond the usual and the repetitive and search for the things you would not expect to be gripping. The greatest example I have of achieving this is to go beyond the obviously evocative emotions of happiness and terror or horror, and venture into the emotions that are harder to trigger. It's harder to make people feel sad, in a constructive way. It's easy to do in a destructive way, but there's no enjoyment to be found there. Sadness for the sake of being sad often ends up producing contrived content. This is where poignancy comes into play. Poignancy is essentially constructive sadness; a sadness that evokes an empathic response. Games like The Beginner's Guide do this very well. The Beginner's Guide was developed by Davey Wreden, who also developed The Stanley Parable another game which employs similar themes of evoking an empathy within the player for the person they play in the game. Worthy of note here is the fact that in both cases you "play" as a character within the games but no character actually exists, instead you take on a role and engage in the story as the main character. Also worthy of note is that both games are driven by a narrator, and employ storytelling as their main mechanic.
I have a love of writing, which I have made no secret of here on this blog. I have also written quite a few stories and a few books that I have self-published and one that is in print. What I would like to achieve at some point is to take a story I create and make a game out of it, but not in the traditional sense. What I would seek to do is to capture poignancy through the art form rather than get bogged down in the technicality. This isn't something I devote a lot of my time to however as I feel it's one of those things that would be nice to do but probably won't happen in reality. That in and of itself is rather sad.
In this place I used to live
You can spend every day of your life for several years in one place, seeing and doing everything there, then move on from that place. For most people they will never return to that place. I find this fascinating to think about, and also rather strange; in particular, the fact that for all the time you spent there, you will never return - spending more or less time there doesn't change that fact.
From houses you used to live in, places you worked, schools you once attended, the list grows more and more. This isn't a case of these places no longer existing - that in itself is something to think about as well, but what I am focusing on here is the "entitlement" to essentially "reside" in these places for a set time. When that entitlement ends you can't recover it in most cases. The amount of time you spent there does not mean anything once you leave.
With houses we once lived in, this is perhaps the most self-evident. The fact you no longer live there means you can't come and go as if you do. With the exception of places owned by those close to us such as our parents, or friends who we visit who now live in those houses, there are few other instances where it even becomes possible for you to put your foot through the door. The first house I ever lived in is now owned by strangers to me, and is quite a distance away. To even be physically close to it, would take considerable time and conscious effort.
I don't live in the town where I grew up, the places I spent the first 18 years of my life are all places I have not even seen in over 10 years. From my Primary School, High School, and College, to my first, second, and third houses, and the two I lived in for a while temporarily - one due to renovation, one due to being made homeless. These are all places I spent a lot of time, but I will likely never enter again for the circumstances under which that would even be possible are convoluted to the point where it's unrealistic for me to suggest it would. [Not impossible, just so highly improbable]
There are other places which, after you have been there, the circumstances which brought you there are unlikely to ever occur again. My schools above would fall into that category, along with my University, my room in Halls of Residence, the places I rented as a student in my second and third years of my degree - both of which I believe have been sold off now. As well as the companies I have worked for over the years, most of which do not allow the general public to enter freely. Really the only places I have worked that did were retail outlets 2 of which have now changed hands.
The houses I mentioned are perhaps the most poignant of the list however, as the others arose from incidents and circumstance, those houses were for a time the places I called home. They were the places I lived, and I don't simply mean the places where I ate, drank, slept, and played, but the places where I lived my life, the love, the happiness, the loss, the sadness, the success, the failure, all of it. While I may never enter any of those places ever again, they remain a part of me, in my memory and always will. I find it quite moving at times when I have dreams about certain things and I am in those places in my dreams because they are where I was when they happened, they are the places I associate with certain emotions. There is that cliché that is often uttered when you feel anxious or scared, or just feel down, people say "go to your happy place" - what I find interesting about that concept is that, although there are places I associate with sadness, angst, money, education, love, sex, etc, there's no one place I would associate most with happiness. Maybe happiness isn't a place for me, maybe it's just a state of mind.
From houses you used to live in, places you worked, schools you once attended, the list grows more and more. This isn't a case of these places no longer existing - that in itself is something to think about as well, but what I am focusing on here is the "entitlement" to essentially "reside" in these places for a set time. When that entitlement ends you can't recover it in most cases. The amount of time you spent there does not mean anything once you leave.
With houses we once lived in, this is perhaps the most self-evident. The fact you no longer live there means you can't come and go as if you do. With the exception of places owned by those close to us such as our parents, or friends who we visit who now live in those houses, there are few other instances where it even becomes possible for you to put your foot through the door. The first house I ever lived in is now owned by strangers to me, and is quite a distance away. To even be physically close to it, would take considerable time and conscious effort.
I don't live in the town where I grew up, the places I spent the first 18 years of my life are all places I have not even seen in over 10 years. From my Primary School, High School, and College, to my first, second, and third houses, and the two I lived in for a while temporarily - one due to renovation, one due to being made homeless. These are all places I spent a lot of time, but I will likely never enter again for the circumstances under which that would even be possible are convoluted to the point where it's unrealistic for me to suggest it would. [Not impossible, just so highly improbable]
There are other places which, after you have been there, the circumstances which brought you there are unlikely to ever occur again. My schools above would fall into that category, along with my University, my room in Halls of Residence, the places I rented as a student in my second and third years of my degree - both of which I believe have been sold off now. As well as the companies I have worked for over the years, most of which do not allow the general public to enter freely. Really the only places I have worked that did were retail outlets 2 of which have now changed hands.
The houses I mentioned are perhaps the most poignant of the list however, as the others arose from incidents and circumstance, those houses were for a time the places I called home. They were the places I lived, and I don't simply mean the places where I ate, drank, slept, and played, but the places where I lived my life, the love, the happiness, the loss, the sadness, the success, the failure, all of it. While I may never enter any of those places ever again, they remain a part of me, in my memory and always will. I find it quite moving at times when I have dreams about certain things and I am in those places in my dreams because they are where I was when they happened, they are the places I associate with certain emotions. There is that cliché that is often uttered when you feel anxious or scared, or just feel down, people say "go to your happy place" - what I find interesting about that concept is that, although there are places I associate with sadness, angst, money, education, love, sex, etc, there's no one place I would associate most with happiness. Maybe happiness isn't a place for me, maybe it's just a state of mind.
I feel...
I feel... I feel. I don't know if there's a word for what I feel right now, if there is it escapes me. Today I saw someone I haven't spoken to in over 3 years and while she shared some very happy news with me she also shared something that completely caught me off guard. I wasn't expecting it at all. Someone I used to work with has been dead for over a year and I had no idea at all. The circumstances I won't go into out of respect for him but suffice to say he was in his early 30s and that saying is true you never know what people are going through.
I don't know what I feel right now. I have a lot of questions in my mind many of which I will never know the answer to, neither will anyone else. I find myself at a loss for words and yet at the same time my mind is racing with a million thoughts that I can't string together into anything coherent. I feel like I have been hit on the head, dazed and confused, trying to process something which I don't even know it's even possible to process.
So much of what I thought I once knew is being rewritten, things are changing not just the present and the future as the last year has been tumultuous, but now my past is even being rewritten and it feels like I'm a character in a science fiction novel where someone went back in time and fucked something up that's caused an alternate future, where only I remember the way it used to be. I guess on the flip-side you could argue that my perception of reality has been wrong all along and that the things which I perceive as changing are in fact the way they always were I was just blind to it. I would find that easier to accept as an explanation if it weren't for the fact that I know I am not alone in looking back and seeing things change. Whilst I have only learned about what happened today, my fried found out months ago and since we weren't in contact we never had a chance to talk - it was only a chance encounter that actually saw us meet today. Nevertheless she too expressed her shock and disbelief at what had happened.
The world around us is something we like to think of as constant, but really the only constancy is the existence of a world to perceive. Our perceptions of it, more and more, are proving to be unexpectedly fluid. What we know is only what we know now, it is not what we knew and will forever know, it is only what we know now. That revelation has led me to a very uncomfortable position where I'm questioning the very nature of "truth" - the thought of "alternative facts" is something that turned my stomach when I first heard it but, in moments like this, where your entire perception of people, places, and experiences, fundamentally shifts and what you believed to be true and what all evidence pointed towards being true, suddenly becomes false, and an alternate explanation is presented that is retrospectively reinforced with evidence that could never have been known at the time... - that whole thought process and where it leads is deeply disturbing.
What is truth?
I don't know what I feel right now. I have a lot of questions in my mind many of which I will never know the answer to, neither will anyone else. I find myself at a loss for words and yet at the same time my mind is racing with a million thoughts that I can't string together into anything coherent. I feel like I have been hit on the head, dazed and confused, trying to process something which I don't even know it's even possible to process.
So much of what I thought I once knew is being rewritten, things are changing not just the present and the future as the last year has been tumultuous, but now my past is even being rewritten and it feels like I'm a character in a science fiction novel where someone went back in time and fucked something up that's caused an alternate future, where only I remember the way it used to be. I guess on the flip-side you could argue that my perception of reality has been wrong all along and that the things which I perceive as changing are in fact the way they always were I was just blind to it. I would find that easier to accept as an explanation if it weren't for the fact that I know I am not alone in looking back and seeing things change. Whilst I have only learned about what happened today, my fried found out months ago and since we weren't in contact we never had a chance to talk - it was only a chance encounter that actually saw us meet today. Nevertheless she too expressed her shock and disbelief at what had happened.
The world around us is something we like to think of as constant, but really the only constancy is the existence of a world to perceive. Our perceptions of it, more and more, are proving to be unexpectedly fluid. What we know is only what we know now, it is not what we knew and will forever know, it is only what we know now. That revelation has led me to a very uncomfortable position where I'm questioning the very nature of "truth" - the thought of "alternative facts" is something that turned my stomach when I first heard it but, in moments like this, where your entire perception of people, places, and experiences, fundamentally shifts and what you believed to be true and what all evidence pointed towards being true, suddenly becomes false, and an alternate explanation is presented that is retrospectively reinforced with evidence that could never have been known at the time... - that whole thought process and where it leads is deeply disturbing.
What is truth?
Sweet?
There is a cliché that says Eskimos have a vast number of words for snow, the exact figure used varies greatly with some people putting it at over 1,000 and others putting it in the high hundreds. Truth be told the real figure isn't one you can pin down as there is no definitive "Eskimo" dictionary - even if there was it would only include words as part of the formal language and omit words used in slang. Inspired by this cliché however, and in an attempt to refute it, there have been several academic studies that have sought to analyse how many words can be considered part of Eskimo culture and can be considered as relating to snow.
The idea that language requires such vast collections of words to describe things that seem rather simple to us is something that at first seems almost inconsiderate. As if it implies language is incompetent when it comes to descriptive terms. On the other hand you could argue that it is not the language itself that is limited but rather the person employing it. That perhaps the creation of new words that mean the same thing is not born out of a need to have an accurate word but rather the speaker's limited lexicon, that it is their restricted vocabulary that prevents the articulation of existing ideas.
To give an example of this we can take a fairly basic idea, a simple word we often use which is common parlance - "sweet" - and analyse the concept it represents. Most people know what you mean when you say a food is sweet but do we actually agree on what constitutes sweetness? Would you and I both consider the same foods as sweet? Would you consider an Orange to be a sweet tasting fruit? Personally I would not, but I know many people who would. Likewise I know many would consider Honey to be sweet, yet again I would not consider it sweet. Both of these things I do not consider bitter which is the antonym but rather I would simply consider them as something more "middle-ground" that is not sweet enough to be considered sweet to me.
This throws open analysis of all five senses. Sight, Hearing, Taste, Touch, and Smell. These five senses are the fundamental percepts we use to experience the world yet for each and every one there will be wide ranging disagreement as to what constitutes what. It is often the middle that is the easiest to define. We speak of colours as being within the seven colour spectrum of Red, Orange, Yellow, Green, Blue, Indigo, and Violet, all of which we can identify the most prominent of each but the spectrum itself is not clearly divided and the discussions and debates emerge when you begin to look at those gradient colours in between and you find arguments over what is considered to be what. The easiest example to give is to ask where "orange" starts and ends on the colour spectrum. You will begin to see people have very different opinions on what they would consider each colour range to be.
What I find fascinating about all of this is quite simply the fact that while we have collective terms that everyone uses and thinks very little of their definitions, we base our interactions and communications with others on the assumption they have the same definition as us. This can be cumbersome or complementary depending on how integral the distinction is; so that beggars the question, even though someone may say the same thing as you, do they actually agree with your internal conceptualisation of that belief?
The idea that language requires such vast collections of words to describe things that seem rather simple to us is something that at first seems almost inconsiderate. As if it implies language is incompetent when it comes to descriptive terms. On the other hand you could argue that it is not the language itself that is limited but rather the person employing it. That perhaps the creation of new words that mean the same thing is not born out of a need to have an accurate word but rather the speaker's limited lexicon, that it is their restricted vocabulary that prevents the articulation of existing ideas.
To give an example of this we can take a fairly basic idea, a simple word we often use which is common parlance - "sweet" - and analyse the concept it represents. Most people know what you mean when you say a food is sweet but do we actually agree on what constitutes sweetness? Would you and I both consider the same foods as sweet? Would you consider an Orange to be a sweet tasting fruit? Personally I would not, but I know many people who would. Likewise I know many would consider Honey to be sweet, yet again I would not consider it sweet. Both of these things I do not consider bitter which is the antonym but rather I would simply consider them as something more "middle-ground" that is not sweet enough to be considered sweet to me.
This throws open analysis of all five senses. Sight, Hearing, Taste, Touch, and Smell. These five senses are the fundamental percepts we use to experience the world yet for each and every one there will be wide ranging disagreement as to what constitutes what. It is often the middle that is the easiest to define. We speak of colours as being within the seven colour spectrum of Red, Orange, Yellow, Green, Blue, Indigo, and Violet, all of which we can identify the most prominent of each but the spectrum itself is not clearly divided and the discussions and debates emerge when you begin to look at those gradient colours in between and you find arguments over what is considered to be what. The easiest example to give is to ask where "orange" starts and ends on the colour spectrum. You will begin to see people have very different opinions on what they would consider each colour range to be.
What I find fascinating about all of this is quite simply the fact that while we have collective terms that everyone uses and thinks very little of their definitions, we base our interactions and communications with others on the assumption they have the same definition as us. This can be cumbersome or complementary depending on how integral the distinction is; so that beggars the question, even though someone may say the same thing as you, do they actually agree with your internal conceptualisation of that belief?
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