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chronically-online-anime-enjoyer · 17 days

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Now I’ve been looking up fibromyalgia cuz I do also have some of the other symptoms (brain fog, insomnia, chronic headaches, mood disorders, pain in other parts of my body). I just don’t know. Fibromyalgia has no cure or treatment other than just pain management. I don’t want for that to be it. I’m going to speak to my doctor soon and figure out what to do next. I’m just stressed.

Just found out the RA isn’t as bad as it feels like it is, and there’s like very little inflammation or joint degradation in my feet despite being in moderate-severe pain when I walk so now I’m lost. No idea how to move forward cuz obviously something else is causing my pain.

#vent #autoimmine disease #chronic illness #chronically ill #mobility aid #babe with a mobility aid #chronic pain

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chronically-online-anime-enjoyer · 17 days

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Just found out the RA isn’t as bad as it feels like it is, and there’s like very little inflammation or joint degradation in my feet despite being in moderate-severe pain when I walk so now I’m lost. No idea how to move forward cuz obviously something else is causing my pain.

#chronic pain #rheumatoid arthritis #arthritis #health #autistic #actually autistic #disabled #disability #babe with a mobility aid #mobility aid user

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chronically-online-anime-enjoyer · 6 months

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No more feeling sad time to be happy

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chronically-online-anime-enjoyer · 6 months

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I wrote this in response to someone asking for advice, but I think it might be useful as it's own post.

Choosing a budget manual wheelchair

I've been using a wheelchair most of my adult life, and I know a lot of you do get an off-the-shelf manual wheelchair and wanted to lend my experience to help get the most out of it.

Important to know is most off-the-shelf chairs aren't actually made for self propulsion (even though they're labelled self-propelled) so here are good features to look for.

You want one with the axle directly beneath the back end of the seat, this will bring the wheel several inches forward of most off-the-shelf chairs, make self propulsion much much easier and allow you to tip more easily for a wheely (fun, and takes pressure off your spine which is more important than you might think).

If possible you want a low or folding back rest, not an absolute must but this allows you more back flex for more powerful propulsion, this is more desirable as your back and core muscles are strong for extended work and only using your arms can lead to long term shoulder injury.

You want to make sure nothing is in the way of your arms for the most natural movement (we don't want rotation injuries), so if needed ask if the arm rest is removable and how.

I would hope any chair has adjustable length foot rests, but that is really important.

You want at minimum a foam, ideally a gel cushion for pressure care... No cushion means no good, it's worth the extra money to avoid sores and pain from something you're spending all day in. I fully endorse e-begging to help afford a chair that isn't damaging your health.

This is just self care, if you can walk get up every couple of hours and take a few steps, it's good for you.

This is an example of what to look for. Anti-tip wheels will help while learning, arm rests fold away, back rest folds down for more powerful propulsion, looks like a decent cushion, adjustable foot rests. This one is the "Drive Spirit lightweight aluminium wheelchair" but I've seen it advertised under other names too and I'd say it's in the budget wheelchair range ($300-$500) but punching well above its price point in features.

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chronically-online-anime-enjoyer · 6 months

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i’d like to exit

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chronically-online-anime-enjoyer · 6 months

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Just ranting a little bit :)

Im seeing a new rheumatologist soon and hopefully starting treatment for my RA. Last time I tried immunosuppressants it didn’t help it just made me feel worse, so if the new treatment also doesn’t help I might get a wheelchair.

I feel bad about using a wheelchair because I can walk. I can usually handle walking for about 30 minutes before it becomes too painful, and I can technically walk for like 2 hours although at that point I’m in excruciating pain in all my lower joints, and I could injure myself if I walk for that long. I’d only need the wheelchair on rare occasions like going to anime conventions or the zoo or the amusement park. My cane and rollator arent enough for those kinds of outings.

Another aspect of my illness is the constant fatigue. I do literally anything and I am so so so tired. It’s so hard to function like this.

I hate feeling like a fraud because my disease fluctuates and is progressive. I often have to take precautionary measures like using a wheelchair to prevent pain, even if I’m not currently in pain. It’s stupid.

If I got a wheelchair I’d probably get a manual chair with a power assist bc I like the maneuverability of the manual chair but I don’t have the arm strength to push myself.

#arthritis #rheumatoid arthritis #inflammatory arthritis #inflammation #chronic pain #chronic illness #chronically ill #wheelchair #ambulatory wheelchair user #babe with a mobility aid #mobility aid #mobility aid user #autoimmine disease #disabled #disability #autistic #actually autistic

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chronically-online-anime-enjoyer · 6 months

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Just did the bare minimum of cleaning I needed to do today and I’m so fatigued my arms feel like noodles after holding a vacuum like what the heck. I wanna be useful. But every time I try to be I just end up in so much pain.

Anyways here’s a playlist I made for Reki from the anime Haibane Renmei

#chronic pain #arthritis #rheumatoid arthritis #autoimmine disease #health #autistic #actually autistic #autism #chronic illness #chronically ill #disabled #disability #Spotify

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chronically-online-anime-enjoyer · 11 months

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I love how people with chronic pain can be at extreme levels of pain and just be like “My body is ouchie”

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chronically-online-anime-enjoyer · 11 months

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In severe muscle and joint pain from the zoo trip yesterday. I’m probably gonna be just sleeping for the next few days. It hurts to move.

I used my rollator and it helped a lot with the leg pain but now my arms really hurt. I should’ve just rented a wheelchair but I was being stubborn.

#arthritis #chronic pain #rheumatoid arthritis #autistic #autoimmine disease #disability #health #chronic illness #spoonie #low spoons #disabled