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The original was posted on /r/cfs by /u/bunzoi on 2024-11-09 01:34:58+00:00.

I’m feeling particularly alone and sad about my situation and would love to hear from others in similar positions especially about some positive things that you get up to.

But I’m moderate-severe(?), I’m bedbound but at least I have my night bed (regular bed) and day bed (sofa chair) both of which are in my room which has a bathroom. I usually end up waiting until I really need to go before I get up to use the bathroom. It’s been well over a month (longest I’ve gone) since I properly showered, my mama washes my hair while I lay on my day bed and I wash myself with washcloths. I can’t even make instant noodles in my room because it takes so much energy and I recently developed what’s most likely POTS and it’s so exhausting living like this.

I’ve been using a powerchair for the better part of this year because walking anywhere completely exhausts me. I have issues with pain all over my body but I’m on meds for that so I’m not in pain most days but the fatigue is so lonely. I’ve noticed my issues with light and sound becoming worse and I’m scared I’ll lose the ability to have my two outings a week (1-1.5 hrs each). My insomnia has been terrible and no meds touch it, I’m afraid this is lowering my baseline and it’s like I’m watching my life slip from between my hands.

I’m only 19 and it hurts seeing others be able to live their life when I’m having to choose which side effects I’ll let slide because the pros outweigh the cons. I wanna hear from others like me, what do you do all day? Are you content with life even if your condition limits you so much? Do you eventually learn to adapt and live like this?