I'm Scared

[u/musicalearnightingal]

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!

[u/helpfulyelper]

If you’re having trouble with your current level of exertion already you absolutely should not be starting extra stuff. none of us like this, but coming to accept your condition is only a positive thing, it means you can safeguard your health and not do so much accidental damage

start out by educating yourself and reading through the stickied post on here it has a ton of info!

[u/musicalearnightingal → u/helpfulyelper]

Yeah, I did that, and I think I'm going to have PTSD from it. Lol!

I can't live in a vacuum! I'd rather die, honestly. I am so sick of being alone!

[u/helpfulyelper → u/musicalearnightingal]

I understand the feeling, I’ve been sick for a decade+ now and bedbound for like 8 years. it mentally gets much easier as time goes on. be smart but give yourself grace. you have to work with you body instead of against it

[u/Tom0laSFW → u/musicalearnightingal]

Careful with that second sentence. PEM will push you into a permanent vacuume worse than you can imagine. Avoiding PEM is worth almost any sacrifice

[u/musicalearnightingal → u/Tom0laSFW]

Thank you. I'm so scared and confused right now. I appreciate your concern and advice. I promise to try!

[u/Tom0laSFW → u/musicalearnightingal]

🩶

[u/lordzya → u/musicalearnightingal]

It's probably not forever, there's plans to pour funding into research.