Finally saw the neurologist today, got diagnosed.
Posted Oct 21, 2024
Last week I had a neurology appointment I’ve been waiting a year for. But to understand the outcome and what it means, I feel like I need to give context.
(And remember, I have ADHD, so cannot help myself but yap away on endless tangents. I have tried to stop myself and I cannot.)
So buckle in buckaroos and prepare for a lovely little storytime all about a fag name Danny, who had things happen to him. There will be diagrams.
So, from the top:
In 2021 my eyes went all fucked up. And by fucked up, I mean that over the course of a couple months, it started to get harder and harder to focus my eyes on things. Until it got to the point where I had constant double vision.
Long story short, I was given an mri, the results showed everything was normal, apart from slightly enlarged extraocular muscles. But no cause was found.
Ultimately, they corrected my vision by giving me a special pair of glasses with prisms built into them. The prisms work by bending the light to help my brain fuse the two images into one. But to this day, I still have permanent double vision when I take my glasses off.
That, and the fact that I get terrible eye-strain related migraines without them, mean that I don’t really have a choice to ever just chill without them on - unless I’m sleeping at night.
To make matters worse, I was and am still already extremely short sighted! Which has always been a huge pain in the ass since I was a kid, but honestly has just been getting worse year on year as I get older.
At this point, I’m extremely visually impaired without my glasses. Not only with the sheer amount of blur going on (blobs on colour level impaired), but also the fact that the double vision confuses things further to the point where I can’t even begin to guess at what I’m looking at without them!
So unfortunately they’re an absolute full time ‘must’ for me.
Starting back in 2021, it was no more contact lenses for me! (And up until then, I’d been wearing contacts daily for over a decade!)
It was an adjustment to go back to glasses after so long, I’m not going to lie.
For a while, things settled and life went on… until the start of 2023 when it all went to shit again.
… Starting when my long term relationship of five years came to an end in a really shitty way at the end of December 2022. Honestly that whole period of my life left me kinda fucked up. I’ll vent about it in a blog post about it at some point because jesus christ. But basically all you need to know right now is that he was an abusive POS.
Naturally it was a hard start to the year. I lost the flat we’d shared, what had been my home and safe place, I couldn’t afford to live there alone.
He’d fucked off without saying anything or giving any warning, so I didn’t have the time to find somewhere new I could afford. I had to move back in with my parents. (Which as you might imagine, was triggering almost constantly.) But what choice did I have? That or homelessness. And trust me when I say I was close to choosing a shelter a few times, over being there any longer.
Mentally, I was a mess. Recovering from an upheaval on that scale is hard, losing your home, the future you’d worked for all your adult life, and I was 25. I’d been with him since I was 20 and at that point he’d gotten his hooks in good.
I fully believed I was worthless. He’d cemented everything my childhood has already taught me about myself.
My worsening chronic pain crept up on me. Like some guy on his way back from the pub falling sideways into your green wheelie bin at 4:23am and setting off your doorbell camera, it wasn’t exactly subtle.
I’d lived with chronic pain for a long time at that point, but it had always been subtle enough where I could safely ignore it, and pretend it wasn’t there. After all, everyone’s skin hurt like it was bruised at a firm touch, right? Everyone has muscle soreness after taking a 5 minute walk. Soreness so severe that it sometimes lasted for days, a burning so uncomfortable it disrupted sleep, made standing hard. Pain that never really went away.
Only in spring 2023, I was working as a nanny in my hometown. They were a sweet family, and they had a very sweet son, no older than two. And I fell down their stairs.
I was holding the boy at the time. Who knew how slippery socks could be on new carpet? I held him tight and slid down hard on my backside, coming to a rest at the bottom. Thank god the little boy wasn’t hurt. In fact, he was laughing by the time we came to a stop. But the pain was awful.
I’m a visual learner, so here’s a diagram because it’s easier than having to explain the extent of it.
My ass cheek was purple with a hematoma, which is basically like a giant buffed up bruise. It’s what happens when you have an impact severe enough that you get a lot of popped vessels and a lot of pooling blood. Sorry for the gross description.
I landed right on the edge of the bottom stair when I fell, which left a permanent dent that I still have to this day. From what I understand, the impact damaged the fat cells on my butt cheek, which caused the dent. RIP booty cells.
Immediately afterwards, I was horrified. Beyond the immediate agony I was in, (and it was fucking painful), I was terrified I’d hurt their little boy. When you work with small children like I had all my adult life, you are trusted completely with the most precious thing a person has, their child, (reminder: children are generally very small, and very easily injured)
Someone has trusted you with their baby, and you’ve failed them. And you feel fucking awful. Embarrassed, ashamed. But above all, I felt terrified I may have done harm.
Maybe that was why I chose to get back up so fast. Despite the fact I could barely put any weight on my leg. I had to make sure he was okay. His mother had already come running and taken him out of my arms.
But honestly? He was totally fine. Not a scratch or a bump on him. The fact I had slid down most of the stairs meant it was a relatively smooth ride for him. No wonder he was laughing.
And would you believe it, despite the fact I could barely walk, I didn’t go to the doctor. I think I was too ashamed.
You blame yourself. You’ve been taught all your life that there are no accidents, just carelessness, so you internalise every mistake until you yourself just become one big mistake.
I’ve spent my whole life trying to undo those beliefs I have about myself.
It just sucks that I’m dyspraxic and autistic. I have ADHD that went unmedicated for 24 years. I was the kind of kid that couldn’t help but misunderstand, or make mistakes. I’m so so hard on myself so much of the time. Perfectionism is a poison taught to children by caregivers that expect more than is fair.
It was a couple months after that that I met my partner system, Quinn. I didn’t know it then, but he was everything I needed and more.
During the period between the breakup months before, and the day I’d met Quinn in May (so… around 5 months?) I’d slowly been building my confidence back up. The injury from the fall was a bump in the road, but mentally I was doing well enough all things considered.
It was during those five months that my egg cracked. At the age of 25, I realised that I’m actually transmasculine… and not anywhere near as straight as I’d assumed I was all that time. I am very very bi haha.
In hindsight, I should’ve seen it coming sooner. But well… hindsight is 20/20.
By the time I met Quinn, I’d changed my name and pronouns, and came out to my family. I was Danny now, used he/him pronouns, and I’d never felt fucking better in my gender. In my health however…
I started having more and more neurological symptoms crop up. They started slowly around February time when the fall happened, and just worsened with time. Along with chronic hip and leg pain that never left me afterward, I started having neurological symptoms. I made a neuro appointment, and the waiting began. I don’t know if you’re aware, but the wait for a neurology appointment can be up to a year in the UK. So… fuck me I guess.
