Information About My Disability

Last thing before we get underway, this is a trigger warning for medical negligence. If you’re not in a place where it’d be good to hear about those things, now’s the time to click away; please take care of yourself and your bandwidth first and foremost! Okay, let’s get into it.

Making things accessible for me means considering four main things: 

1: Fatigue and pain in my lower arms and hands due to Peripheral Spondyloarthritis, a form of inflammatory arthritis where my immune system attacks inflammation. For me, this is primarily in my lower arms, specifically my elbows and hands. This is why I play games partially using my feet, as it reduces the strain/fatigue in my hands.
2: Pain/weakness/weird sensations in my right leg, caused by nerve damage in my lower back. This makes weight bearing on my right leg painful and is why I use a wheelchair and other mobility aids, like a forearm crutch.
3: Hypermobile joints. I don’t have a diagnosis of EDS, but I do have hyper mobile joints, which means I am more prone to injury and dislocation.
4: Taking into account cognitive accessibility due to ADHD, which I was diagnosed with in 2022.

The rest of this post will focus on my physical health. At some point I will write separate posts about A) my experiences with ADHD and B) details of my physical accessibility aids, but the rest of this post will focus on my explaining my physical health.

If you’ve seen older videos of mine, you may have heard me talk about being diagnosed with “Ankylosing Spondylitis” (aka “Axial Spondyloarthritis”) which I was diagnosed with in the winter of 2020. In 2024 this was found to be a misdiagnosis.

The nerve damage in my back, and the resulting loss of mobility is as a result of complications from a herniated disc that was missed due to medical negligence. It’s likely that hypermobile joints contributed to the original disc injury, and we think the original injury happened after I tripped over during the Christmas period in 2023. The disc is visibly herniated on a scan from early 2023, at a time when I was experiencing excruciating back pain and was unable to walk more than a few steps. The scan’s purpose was to determine the progression of AS, and the subsequent report of the scan did not include any mention or acknowledgement of the herniated disc, leading it to be missed for over 18 months. At the time I was told my pain was due to a flare up of AS, and not to worry about it. I was denied proper pain relief and in 2024 I gained access to my medical notes from the time, where I was described as exhibiting “drug seeking behavior”.

In 2023, I started using a powered wheelchair for the first time, which gave me the ability to engage with the world again! In 2023 I also moved over 200 miles to move in with my partner. As a result, I had to change medical teams. When I met the new specialist, he couldn’t make sense of my presentation with my existing diagnosis. He requested the original scans (not just the written reports which he already had access to) from my previous specialists, and ordered new scans. It was discovered that I had had a herniated disc that was visible in a scan from early 2023, that had not been mentioned in the written report of the scan. A new scan in 2024 showed that my back had managed to put the disc back into place (something I was not aware backs could do until that moment!), and a nerve conduction study on my right leg in 2024 showed that the nerves were not able to correctly communicate. At this point, I was told I have nerve damage in my back, in the same place the disc was herniated, due to the nerve being compressed by the disc for such a long time. This is what affects my right leg and associated mobility, pain and weakness. Now we know what it is, there’s a treatment plan that involves trialing different medication options and a lot of physio/rehab. There’s a chance I may regain some mobility, but there’s also a chance that I won’t. My current understanding is it’s a “try each thing and see how it goes”. For now, I’m making my life as accessible as possible, and working with what mobility I have in present day. That way, if the treatment works… fantastic! And if it doesn’t, that’s okay because I have a life that is accessible to me.

My pre- 2022 back pain has now been chalked up to issues surrounding hypermobility, and my present day back pain due to the nerve damage. I was told it’s unlikely I have Ankylosing Spondylitis, and my “hand issues” were instead given the diagnosis of Peripheral Spondyloarthritis, a form of inflammatory arthritis caused by my immune system attacking inflammation in my hands and elbows.

I had been prescribed an immunosuppressant for several years which did have a positive effect on my hands, but didn’t solve the problem entirely, so I was still very much struggling to do many everyday tasks that needed my hands. I was unable to increase the dosage of this medication due to some pretty intolerable side effects, including vertigo, sickness and digestive issues. In Spring 2024, the new specialist switched me to an injectable form of the same drug, which I was able to tolerate a higher dose of; yay! This dose increase has had a huge positive impact on my hand functionality, and while we’re still figuring out the correct dosage, this has led to me being able to do more with my hands than I have been in years.

In fact, the hands have improved so much with this drug, that I’ve been able to start using a manual wheelchair, in which I’m able to self propel myself for short distances. My hands aren’t reliable enough to do more than short journeys, but it’s an incredible step as it means I’m able to exercise more as well as being able to independently deconstruct it and get it in and out of the car on my own; something I was never able to do with the powerchair. I’ve had a car that’s adapted for my hand related needs since 2022, but the addition of the manual wheelchair means I’m able to independently get myself places… which has brought me an incredible amount of independence! The next step here is to save for a “power assist” function that would be an add on for my manual chair, to allow me to independently do longer distances. If you’ve not encountered “power assist” for manual wheelchairs before, the best comparison here is to imagine a component that you could add on to a bicycle to turn it into an electric bike. I’d still be self propelling, I’d still have a lightweight chair I can independently lift in and out of the car, I’d just also have a little extra assist and be able to go a little further independently.

This medication increase has also led me to discover that there are now some games that I’m able to play without using my feet! Between late 2020 and 2024, I have used my feet, or a combination of my hands and feet, to play games. Today, this setup includes using the Xbox Adaptive Controller or the PlayStation Access Controller, and LogitechG Adaptive Gaming Kit velcroed to a guitar pedal board, alongside a traditional Xbox controller resting in my lap (so I don’t have to grip it), on which I use the thumbsticks and XYBA. I use a “copilot” feature that enables me to get my PC/Xbox/PS5 to read both controllers as one input, so I use both to control the game at the same time.

I still use this hand/foot setup for games that require shoulder button usage, or games with complex control schemes, but there are now some games (ones with VERY simple control schemes that never require shoulder buttons) that I’m able to play with just my hands, using a traditional XBox controller resting in my lap. I’m in the process of exploring other options that require only my hands to use, and there will be future content covering this journey!

If you got this far, thanks?! Haha. This is quite a vulnerable share, but having all of it in one place will hopefully make it easier for folks to find the information they need without me constantly rehashing and reliving what’s been a very tricky few years.

I do want to end with a huge thank you. The effect of all of this on my mental health as well as my physical health has been pretty huge, but online communities can be immensely powerful, and the support shown to me, especially that from my community on Twitch, has been … well, I don’t have the words. To those of you that are a part of our Twitch community; endless thank yous. For making me laugh on the hardest days, to escaping to beautiful game worlds together, to helping me fund my wheelchairs, to giving me a job that’s been accessible amidst all this chaos, I am forever grateful to be sharing this corner of the internet with you, it’s an absolute privilege, thank you for being the best community I could ever ask for.