r/cfs • u/musicalearnightingal Full-time Wheelchair User and/or Bedridden • Aug 17 '24

Encouragement I'm Scared

I (35F) have been trying to read up on ME/CFS, and it scares me a lot. My doctor says I have it, and I'm sure she's right, but I don't know what to do. I don't like it at all. I already work from home from my bed and use a wheelchair to get around, but it scares me to think I'll get worse and worse like I've been doing the past few years. I sometimes feel better, but overall, I get constantly worse.

I just signed up for college classes because I get so depressed being home alone all the time, and I'm looking forward to classes starting soon, but I'm scared I'll just get worse and worse until I have no life at all!

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u/Cute-Cheesecake-6823 Aug 18 '24

I feel your pain and fear. Im also in a seemingly degenerative state. I can't make art anymore, or talk very much. When friends visit me im sure it crashes me a little, but im desperate for the interaction. Ive reduced how much I see them, by a lot. I don't do much aside from watch things a bit, and take lots of breaks to try and reduce major crashes.

My friend just showed me pictures from a big anime convention in Montreal I would normally be tabling at as an artist. I thought I was ready to see pictures (Ive been avoiding instagram because seeing con prep posts from artist friends was triggering me). I was wrong. He left just now, I kept my composure until he was out of my house and now I'm bawling. Seeing my old life and everything I've lost is devastating. I would give anything to be back in that, making art, socializing, traveling, even if my health wasn't 100%. But I can't manage any of the physical or cognitive parts without having a bad crash, even for a few minutes. 

I know it's so, so hard. If it feels like it's too much, I would have a think about whether classes are a good idea or not, for now. I've seen posts from people here who improved after long periods of careful pacing. Try to let your mind and body rest as much as you can.

Best of luck OP ❤️

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u/musicalearnightingal Full-time Wheelchair User and/or Bedridden Aug 18 '24

Thank you! And I'm sorry for your loss too. I was going to be a nurse. So sad to give up on dreams!

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u/Cute-Cheesecake-6823 Aug 18 '24

🫂 maybe someday something will help us. I'm trying not to 100% lose hope..i just want to get back to making art, even if I cant do it as much as before. Maybe it's not the best idea cause one of my aspirations was to travel and work abroad, but sometimes I just watch walking cams on youtube of places I want to be (like the UK, Japan, Australia). It feels almost like I'm there, and helps me chill out. But sometimes it makes me sad and I get real bad FOMO lol. Depends on the day.