disability exists in relation
written a week ago
I’m at a point in my recovery (or rather, remission) where I feel fairly normal while in the house. It’s how I’ve felt before all my symptoms flared up in 2024; still not completely normal like others, but at least the really bad episode seems to be over. Because I saw how bad it can really get and I gradually got used to things over 2 decades, my view of what’s normal is skewed, though. And unfortunately, as long as I stay in my comfort zone, I get a wrong idea about my limits and how well I am.
Today I had to go to the office for some events, and one of them involved a lot of standing. I thought, oh I feel so well at home now, it will be fine! I’m in remission! But really, being outside of my home so much proved to me again that I am more disabled than I think.
Now for context, I cannot remember a time in my life when I could comfortably stand for 20 minutes. My back would always hurt a ton, and I had to bend and stretch and walk to make it work, and then give up and sit. But at this event, I fought a whole hour trying to stand like everyone else and then had to go get a chair. It’s my personal best, even, but the people next to me 3 years from retirement had absolutely no issue standing for 3.5h, no sitting at all, and I am merely 29 years old. Humbling. Then later, I went home.
I’m writing this into my notes app at 00:47 after that day - since I got home, I managed to sleep, snack a bit in bed, take pain killers, sleep again, do crosswords on the laptop in bed, sleep again, take more pain killers, and I will probably sleep again in a few minutes. I felt nauseous, I struggled with an intense headache and I couldn’t even make it to my desk in the living room because I was just in bed, exhausted and in pain (back, hips). Since I got home from work at roughly 4pm, I mostly slept!! Even though my job is objectively not physically demanding to the average human. I didn’t expect it to be this bad.
What I mean with the title is: People aren’t necessarily disabled equally at all times, and needs or limits can really change dynamically with the situation. Your own estimate might also change based on how much support and comfort is present, how much you are challenged by your environment. The WHO writes about disability: “A person’s environment has a huge effect on the experience and extent of disability.” and reading that, people probably think about constant and physical aspects like ramps and elevators first; you need those everywhere you go in the same capacity, therefore always experiencing this disability everywhere. But it gets more complicated when your disability is not about physical access, but energy, pain, movement etc. - that can vary wildly between days, times, and locations. It’s deeply related to the current moment, more than a permanent need, unlike the constant need for a wheelchair-appropriate toilet for a wheelchair user, for example, which doesn’t just disappear.
Before this office day, I was thinking “wow, the progress is great, maybe I don’t need to apply for disability status” but uhhh…. I do.
Fittingly my fiancée came across this Tumblr post as I was in bed:
So true. I don’t think I am mentally ready for a cane, I’m more a situational (wheel)chair person, but yeah.
I’m writing this following bit a week later. I feel like my back is acting up again and I am very photosensitive, causing me migraines from simple screen use. That’s a thing that can happen with my medication. I’m tired, it’s hard to focus and I am nauseous because of the migraine.
Disease activity is another thing, I guess. You’re more disabled when it acts up. Some phases are good and in some, shit sucks a little again until it magically gets better. It’s hard to go outside. I make all these commitments and plans when I feel good - I have to, after all, I can’t just plan for illness all the time and pause my entire life forever - and then when I’m feeling worse I wonder how I will be able to do it all. I have to trust it gets better again, like it usually does.
I’m going to a hotel in a few days and I looked forward to it so much, and kinda still do, but I am also terrified I’ll get worse and just stay in bed a lot and not take advantage of it all. I was hoping I would feel well enough to do some of their fitness stuff, but I don’t think I’ve been well enough to build up my fitness to pre-diagnosis levels. So no 1h Vinyasa Yoga for me. No 1h Pilates.
This is another thing… now I have to consider my messed up body’s limitations in commercial offers, and I don’t wanna be humiliated in a class when I can’t bend as much or last as long. It’s easy to ignore stuff without a diagnosis - that’s just muscle tension, doing a lot of sports will ease it! But no lying any longer. Yesterday I felt my back acting up and I did some yoga in hopes to relieve it, but it just made it worse. You can’t stretch away inflammation in the spine, unfortunately. It keeps the mobility longterm but it’s not a pain relief.
I also think about work. I planned to come in to the office once a week in January, for my own good in getting out more and move more, but right now I’m in bed in a dim room with a very dimmed phone in hand and I also remember how much I slept after that work day recently, and I don’t know, man. I don’t know. I cannot let illness dictate my life, but I also cannot continually push past it all the time. It needs a delicate balance.
Also received a letter of all the recent medical findings listed up and I’m not thrilled. Killed the Christmas mood a bit. We didn’t decorate or have a tree this time. January will require a lot of talking to doctors again, I assume. I’ve also been intensely struggling with anorexia and orthorexia again. It’s hard to allow myself more than tea and soup each day and to get dinner down.
Going to post this in the midst of all my scheduled posts as a lil update. Last scheduled post is on the second of January. I’ll respond to the emails in the next few days. :)
Published 25 Dec, 2024