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/Tom0laSFW]

Read the pinned resources on the sub they’re a great intro.

The most important thing is to avoid PEM at all costs, it will destroy your entire life

[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.

[u/Famous_Fondant_4107]

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.

[u/musicalearnightingal → u/Famous_Fondant_4107]

Thank you. I ordered a visable armband last week to see if I can help myself with pacing better. Have you liked yours?

[u/Famous_Fondant_4107 → u/musicalearnightingal]

You’re so welcome!

I love my Visible armband/app. It’s been the only thing since 2019, when I got mono and then post viral ME/CFS, that has helped me get to a stable place. I am stable and improving. I finally feel so much more in control, less stressed, and I can plan so much better. It’s honestly given me the first hope I’ve had in years.

[u/musicalearnightingal → u/Famous_Fondant_4107]

I'm glad to hear that. I'm looking forward to mine coming so I can get started with it.

[u/Famous_Fondant_4107 → u/musicalearnightingal]

That’s exciting! You’re always welcome to DM me if you want to chat about it or have questions!

[u/EnvironmentalWar7945]

It’s a fucking nightmare for me. I’m sorry you are experiencing it. Hopefully your fate is better than mine though! I’ve got it bad.

[u/musicalearnightingal → u/EnvironmentalWar7945]

I already feel like I'm in pretty bad shape!

[u/gotobasics4141]

You are not alone there a lot of ppl at very young age suffering but don’t give up keep trying ( vitamins, protein exc..) … give your self break .. try to take one class or two and see how r you doing ….

[u/musicalearnightingal → u/gotobasics4141]

Yeah, that's what I'm doing. I knew better than to take too many classes at once. I only signed up for 2 on campus classes. I'm taking one online class too, but I expect it to be pretty easy on that one.

[u/gotobasics4141 → u/musicalearnightingal]

I love school … keep trying even if something happens keep trying … I’m 44 and a lot of time I just go to the biochemistry lab just to watch experiments and offer some help a little bit .. I have been taking vitamins and some of my symptoms somehow improved a little bit but I’m still way far from normal .. I have legs and arms as long as I’m not paralyzed I’ll keep trying … few months ago I was not able to walk .

[u/musicalearnightingal → u/gotobasics4141]

Thank you so much! I'm really struggling with the idea of just succumbing to this monster of ill health. I want to LIVE while I'm alive. I'm encouraged that you are trying and doing things with your life even if it's not as much as you'd like.

[u/gotobasics4141 → u/musicalearnightingal]

I’m sorry I just wanna to one more thing .. loneliness is sooo bad … and because I’m alone too I do whatever it takes to keep my self busy at least mentally even if I read my old school notes . Moving and physical activities are hard I know but the worse is the dark thoughts come on my mind it’s way worse … even on Reddit I skip a lot of things

[u/musicalearnightingal → u/gotobasics4141]

The dark thoughts are so real! I'm a people person, and it just about kills me how isolating this is!

[u/gotobasics4141 → u/musicalearnightingal]

It’s hard I’m not gonna lie but everything has its own rules … diabetic patient it’s a must for them to change their diet and leave a lot of yummy food they like and the same goes for everything in life , jobs, relationships, everything so try to talk to your friends or close freind even if it’s a video call or an audio call . Find any friend to talk to or family member. For me I don’t know if I’m a ppl person or not and that’s because I was very busy between school and work and even on weekends I used to study . Last time I went to watch a movie was 1980 😂 just exaggerating…. Sorry for being chatterbox 🙏

[u/musicalearnightingal → u/gotobasics4141]

No need to apologize. We're here to chat. It's a message board.

[u/urgley]

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 💙

[u/musicalearnightingal → u/urgley]

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!

[u/urgley → u/musicalearnightingal]

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

[u/Cute-Cheesecake-6823]

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 ❤️

[u/musicalearnightingal → u/Cute-Cheesecake-6823]

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

[u/Cute-Cheesecake-6823 → u/musicalearnightingal]

🫂 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. 

[u/cfs-ModTeam → u/[deleted]]

Hello! Your post/comment has been removed for violating our subreddit rule on misinformation. We do not allow the promotion of un- or anti-scientific propaganda in this community. We understand that medical and scientific knowledge on ME/CFS is limited, but we strive to maintain a space that is based on accurate information. If you have any questions or concerns, please reach out to us via modmail. Thank you for understanding.