#i didn't 'prepare for the worst' with the wheelchair eval and got suprised by the complex rehab chair and i regret it

[briarpatch-kids]

I'm sorry if this is dumb but how do you know when to get help? Like I've been noticing my physical health getting worse, at least it seems like it, and it's really painful and exhausting but I don't feel like it warrants an ER visit or anything (maybe a doctor's visit but I can't afford that) and tbf I've ridden out a lot of pain and shitty stuff to avoid going to the ER (it freaks me out and again I never feel like my pain warrants it no matter how bad I think it might feel) but I'm just so tired and work is so difficult and I'm not rly sure what to do. I just wanna figure out when to finally give in and try to get some help somehow bc it's so hard to tell where my breaking point should be

I'm SO sorry for not answering this right away, I think I was sick and meant to write something longer and didn't get to it in time. It's not dumb, it's a good question ESPECIALLY when you're poor and can't afford to go to the doctor for every little ache and pain.

Basically, if you've tried the usual lifestyle adjustments doctors recommend (trying to get a little exercise, changing how you eat, cutting back on activities to leave time for resting, etc) and things aren't helping or you're still exhausted, go into the doctor. It's best to call and ask for a primary care doctor and not to go to urgent care, for the reason of the appointment let them know you have fatigue and pain that lifestyle changes and over the counter medicines aren't doing enough for, that you're at your limit, and you need to figure out what's going on. I've heard anecdotally that "sliding scale" clinics are better at understanding that you already tried to handle this at home and won't tell you to do some lifestyle changes and see them in three weeks.

Try and notice what makes the pain and fatigue better or worse. If there's patterns like "exercise makes it worse" or "every time I try and get my shit together I have a massive health crash after a couple months" let them know. Telling the physical therapist that while he could see my muscles doing their thing in real time was what got doctors to FINALLY take me seriously. Tell them what lifestyle adjustments you've made and how they affected you so they don't just send you away with "change your lifestyle." (I keep saying this because I got that runaround for 3 years 🙃)

And finally, ask them what you can do to manage things while you wait to figure out what's going wrong. I got a lot of the bare bones medical care I managed to claw out of doctors while in diagnostic purgatory because I asked what we can do to make things more bearable in the mean time. (physical therapy, occupational therapy, mobility aids, mental health therapy because it's fucking stressful to be undiagnosed, that sort of thing.)

If you're lucky, it's something common and easily tested, a lot of people have stuff that's treatable or at least manageable like diabetes or anemia. If you're unlucky, you could end up diagnostic purgatory for years and doing things in the meantime will keep you going. There's also conditions that just don't go away and don't have many treatments other than symptom relief, like chronic fatigue, EDS, or the more unusual stuff like mitochondrial disease and myasthenia gravis. I highly recommend "hoping for the best and preparing for the worst" meaning it's totally fine to hope it's something like anemia and treated with regular medicine, but also don't be totally blindsided and shocked if you end up like me and take 7 years to get answers that are "you're really sick, here's how, but there's not much we can do! ¯\_(ツ)_/¯ at least you're probably not dying in the near future!"

#i didn't 'prepare for the worst' with the wheelchair eval and got suprised by the complex rehab chair and i regret it #im getting better about my internalized ableism towards needing one and starting to get excited though!