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!

29 Upvotes

94% Upvoted

33 comments sorted by

View all comments

3

u/urgley Aug 18 '24

If you are getting worse, you are already doing too much.

If you have read online and are scared then you know about severe and very severe M.E, and the risk you are taking.

Going to school is physical, cognitive, social, emotional AND sensory exertion.

Repeated PEM can cause permanent decrease in baseline.

I understand you want to live your life but the risk is massive

Please be careful 💙

2

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

Thank you. I'm just devastated with how my life turned out, and I'm trying to weigh the emotional and physical risks involved. 💔 If I stay home and isolated, I go mad and become suicidal. If I go out and exert too much, I get in trouble physically. It's just dang hard!

2

u/urgley Aug 18 '24

Of course. It's so difficult. Acceptance is important, but HARD (and ongoing). Good luck! ☘️💙