#progressive illness

[tryfondlin]

had a level 20 autism event at the doctors office today

[celsius451]

This is about physical disability not mental, please do not derail or i will smite ‼️ ⚠️

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.

Between the increasing upper body pain and instability and the fact that my doctor prescribed a powerchair without me even asking for it, I've started thinking about it a lot more and becoming sad and scared about being more sick and also getting sad when I realized that most of the very normal, very light stuff I do every day causes at least a small amount of pain. Even holding up a phone. Even typing to post online. Even holding up my head to watch videos on the couch. it's sad that that's my experience, that there's not much in life that I can do painlessly and that it'll only get worse the more my joints deteriorate.

[theatrekidenergy]

My chronic pain is so bad I genuinely caught myself thinking “I would saw this mother fucker (right leg below the knee) off of given the chance” like FUCK. Not even a chance that’s happening, but I’ve been in debilitating pain for so many years with no treatments helping + knowing the way my condition has progressed (and will progress) I know that this fucked up limb will be useless by the time I’m 22 anyway. I’m going to be stuck with a legitimately useless limb in agonizing pain for the rest of my life, and I guess there’s just nothing I can do about it. Fuck me. Fuck this. I won’t even be able to put weight on it, I already barely can. It’s just going to be a lump of flesh that’s stuck to me and causes nothing for me but pain. It’s already half way there!!!! I hate this so much. Fuck. I want it gone. I want it to off.

[whumpygifs]

The imperial doctor has been in there for such a long time...

[disabled-culture-is]

Disabled culture is getting told that your progressive illness will magically get better over time because that totally makes sense.

-+-

[lightasthesun]

the real horror is when you have a progressive illness and with every new symptom you're like??? is it the flu??? is it COVID?? have I reached the point of no return???

[quinbi]

Over the last couple years, my left side has been slowly weakening. It's been painful and emotionally draining not know how functional I will be in 1, 5, or 10 years time. Most people never realize I'm disabled because I don't look any different and can compensate by switching most of my functionality to my right.

Today I woke up and it's painful to the point of tears to grip anything with my right hand.

[teasetmonster]

So, I hadn't realized this, but it looks like I haven't really said much about my progressive illness, ME/CFS, on tumblr post-2017. And I imagine that as I post here more again, I'll encounter people who are unfamiliar with me, so I'll try to give a synopsis:

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.

But the biggest thing was I started Low Dose Abilify for the cognitive fatigue in 2021. It actually worked and helped a little bit with physical fatigue as well. The difference was quickly outwardly apparent even at a very low dosage, not to mention inwardly apparent to myself. I've slowly titrated up, in between trying other medications for my symptoms, over the past couple years, and in January 2023 realized that my cognitive function had improved enough that I could regularly draw again and physically could sit up long enough to do so, even though I'm still forced to do so from my bed, which is why I now draw on an ipad. As far as I can tell, this is due to the combination of Abilify and the iron infusions I now get. I'm currently navigating what I am now capable of, and that means experimenting with making art regularly again. -Teaset