#progressive illness

Progression is a sad and scary thing, especially when it's in the form of issues becoming more widespread. I've been having more and more trouble with my shoulders, thumbs, and wrists to the point where I've been losing function (having trouble pushing my manual chair, failing to open things without tools, needing help to push, pull, tighten, loosen, lift, move things I used to be able to do by myself) and it makes me worry about what will happen when I'm no longer able to use my lower or upper body sufficiently

I know the answer is that i will just adapt the same way i did when I lost the ability to walk, but change like this is not any less upsetting. It's still hard to continue losing independence and abilities, even if you continue to find tools and help and adapt your life around it all.

I started having increasingly frequent headaches and then constant burning in my eyes in high school, which we might have payed more attention to if, in my senior year, we hadn't discovered a congenital malformation in my brain that would end up either killing me or permanently damaging my brain if not removed. Before going off to college, I had a craniotomy (surgical procedure where they cut open your skull; I have a big scar under my hair) to remove it that went well.

In college the headaches became one singular headache that just didn't ever end, and the pain started expanding down my body. We started paying attention at this point, but were still kind of distracted as my anxiety and depressive disorders were discovered and diagnosed and I started treatment for them that went well.

I took a medical leave of absence as the headache grew worse, I struggled in school for a mystery reason that I now know was ADHD, and I developed gallstones (I ended up having my gallbladder removed). Over the next couple years, the headache increased to a migraine with the extra symptoms migraines involve and the pain expanded to encompass my entire body. In 2016, I then started experiencing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, which I was lucky enough to be diagnosed with 6 months into my fatigue symptoms. As my fatigue increased, my cognitive function was impaired and it became increasingly rare that I was able to think clearly enough to draw, hence why I posted very little art for a few years.

If you've kept up on the Long Covid epidemic, you've probably heard about ME/CFS, and so you may already know that ME/CFS has no existing treatment or cure. All you can do is desperately try to treat your symptoms, struggling through the barrier of doctors completely unfamiliar with the illness, who are also often unwilling to educate themselves and persistent that you must actually have something they're already familiar with instead.

I've had very little success treating the pain despite trying everything the various neurologists I've seen over the years have thought to try. (if it's something with real medical evidence behind it, I can guarantee I've tried it and I've also been tested for like...every immune disorder.) I currently get 9 take-as-needed doses of a medication that lasts about 2 hours and ever so slightly decreases my pain most of the time (sometimes it doesn't work at all). And that's all I have to go on for 25 days. Again, my pain is unending. I never don't have a migraine. I'm just using my migraine meds to take the edge off when it gets particularly bad. I do have meds I take for symptoms like nausea and digestive issues that don't get rid of them, but do lessen them.