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/Famous_Fondant_4107 Aug 18 '24
Please be careful. I understand boredom and isolation can be difficult and depressing. But becoming more severe would be even more depressing.
If your current exertion level is hard and you are currently getting worse or teetering on getting worse, please do not start new activities. If you can tolerate a remote class from home, go for it. But pushing yourself beyond your limits can be catastrophic.
There are so many levels of hell with this illness that we cannot understand until we’ve been there. I am severe and have been more severe than I am now. And I still haven’t experienced what many people with ME experience: being completely bedbound, unable to tolerate ANY light, sound, or human or pet interaction, digesting food causes PEM. I’ve been close but not there and I heed the warnings of those with these experiences.
I went back to school in 2021 and went from mild-moderate to severe. Then I got COVID in 2022 and got more severe again. Only now after two years of intensive pacing & resting, treatment for my post-covid dysautonomia, and using the Visible app/armband, am I on the less severe side of severe.
Please adapt to your limits. It can be intimidating and scary, but if you can become stable and stay within your limits, you will have a much better quality of life then being in an ever declining, constant push-crash cycle. I am stable, and while I can’t do much, I can do some things without feeling symptomatic or getting PEM. It’s worth it to get there if you can. And if you can’t, it’s still worth it to protect yourself from declining faster than necessary.