Waiting

If you grab a fistful of sand, no matter how tight you clench your fist, the sand will still slip away leaving your hand covered in nothing more than grit and residue, a reminder that something happened but with little to show for it. That's how my life has felt for the past two and a half years.

I don't know what is wrong with me. I have been back and forth to doctors, appointment after appointment, prescription after prescription, test after test. The biggest anomaly in those tests of note was a low white blood cell count but that only showed up in one test, it didn't recur.

For the better part of two and a half years I have vomited multiple times a week, had diarrhoea, headaches, chest pains, joint pains, muscle pains, fatigue, and a whole host of symptoms. I've had blood tests, stool samples, X-Rays, and been on prescriptions for Omeprazole, Lansoprazole, Pantoprazole, Esomeprazole, Sennosides, Paracetamol, CoCodamol, Metoclopramide, and Domperidone - of those I can recall.

I'm waiting on referrals to Ophthalmology, Radiology, Neurology, and Gastroenterology. My life has been nothing but waiting, testing, waiting, testing, waiting, ad nauseam with nothing to show for it. I don't know what is wrong with me and doctors can't seem to figure it out either. It does feel like things are getting more urgent though, my weight remained more or less constant for the first 2 years but in the last 6 months I have lost almost 36 lbs.

I have Nystagmus, a condition that causes my eyes to move constantly. I've had it since birth, my vision as a child was so low I was legally registered as blind until I was around 8 years old when I was "upgraded" to being registered as partially sighted as my vision slowly improved. That improvement peaked in my teenage years around 18 or 19 and remained steady save for some minor fluctuations. Just over a month ago I had an eye test to check my vision and my Nystagmus has gotten markedly worse, and my overall vision has declined, my right eye has deteriorated the most. The coincidence of this deterioration alongside my other health problems is being investigated.

I've had headaches for as long as I can remember, I have had Nystagmus since birth and I have always assumed the headaches were caused by eye strain, caused by my Nystagmus but that might not be the case. Up until recently I was under the impression that a migraine was simply an intense headache but then I learned that migraines are a neurological condition that might have headaches as a symptom but are separate. There are two types of migraine of note, Abdominal Migraines and Vestibular Migraines which both need to be investigated. The symptoms of both include nausea, vomiting, and diarrhoea. The abdominal migraines can cause pains in joints, muscles, and the GI tract. Vestibular migraines can cause headaches, ear aches, dizziness, and they can present or worsen Nystagmus.

When my white blood cell count came back low, at the suggestion of the haematologist given my other symptoms they recommended tests to check the function of my pancreas, and recommended an ultrasound of the abdomen which I am due to have in a few days time.

There are days where I have woken up deaf in my right ear, it has taken a half an hour or so before my hearing returns. I've woken up with no feeling in my left arm at all, again it takes time for the feeling to return. I've been in so much pain I cannot physically move. My hair is falling out, I know losing a few hairs is normal but this is a lot and it's noticeable.

Back in July my lower right wisdom tooth cracked, and had to be removed by an Emergency Dentist, it took almost 2 months for the gum to heal, I still feel the occasional pain in the jawbone where the tooth was. I had to see a private dentist to get it checked after healing, with another X-Ray I was told I needed multiple fillings which I am getting done in stages, the enamel in my teeth has been eroded by the vomit some of that may recover but most won't.

I feel drained. Mentally, emotionally, physically, and spiritually too. I feel tired in my very soul. My life is misery right now and has been for some time. Other people have their own problems to deal with, which makes me feel less alone at times but sometimes makes me feel isolated even more because they can't help.

A very close friend of mine had a brain tumour removed several years ago, then earlier this year was told he had another. They used a form of radiation therapy called GammaKnife surgery to target the tumour, the treatment was a success and the tumour went away. As part of the aftercare for the first tumour that was surgically removed, they schedule bi-annual MRI scans for monitoring purposes. Despite the success of the GammaKnife on the second tumour, he was told by the Oncologist the results of the MRI had shown a microscopic third tumour. He may need surgery again like the first, or more likely another GammaKnife treatment like the second which he has said he would prefer as its non-invasive.

This year started with 5 deaths in 5 months in my family, an aunt, a cousin, another cousin, a month later his wife, another month later his daughter. As you can imagine with so much happening in my family there hasn't been much room for the emotional support I usually rely on them for. I can't blame them, grief consumes your whole mind.

Another close friend recently found out he has a form of Parkinson's Disease after a protracted journey of his own through the healthcare system, on the one hand it is a victory to finally get a diagnosis on the other it wasn't exactly good news.

Time slips away but so too do my thoughts. This post has been hard to write because I find myself staring off into space, unable to form a thought. I try to put into words how I feel and everything slips away. Forming a coherent narrative, a string of words that form a sentence that makes any sense is difficult.

I haven't written anything of value in months, I have tried but each draft is nothing more than a few paragraphs of nonsense and incoherence. I've been sporadic on social media, posting less than I normally would, and I haven't been replying to people in private messages. I've been feeling myself give up. Friends have noticed and reached out, but they understand how I shut down when I am overwhelmed; random memes back and forth and insignificant remarks about the banality of life are implicitly understood as a question and answer, "Still alive?", "Yea"; the sad thing is that I've come to the realisation that I don't actually know anyone who is living a life right now they are enjoying.

I've seen others lose loved ones this year, relationships fall apart - some that were dating and others that were married and got divorced; a few people I know had pets pass away, and two people I know - one online, one offline - were both told they need transplants, one will need a kidney, the other might need a heart although that might not be inevitable.

All this, set against... *gestures at the state of the world*, it's not hard to see how anyone would conclude "this is the bad place" like Eleanor in that meme from The Good Place because this year more than ever that's how it has felt. What's worse is that 2026 offers little hope that anything will change. "Abandon all hope, ye who enter here" feels like a description of life itself never mind an inscription above the gates of Hell.

I wish I had a nice way to wrap up this post and give you a glimmer of hope or something of substance but I don't. I know nothing more about my health than I did at the start of this year. I don't have anything I am looking forward to right now, and more than a few things I am dreading which aren't worth writing about right now. I feel overcome by depression and I can't see anyone else who is genuinely happy right now. At some point something has to break, something has to give, if there's one thing in life that is constant, ironically it is change, nothing has changed for quite some time now and that's not normal, everything is going in one direction, downhill.

I just want something to smile about.

I want to feel happy again.

I want to feel healthy again, it has been so long I can't remember what that feels like.