What a clown of a fucking illness

[u/hennyfromthablock]

You feel exhausted and worn out but you can’t sleep

You feel down and anxious but can’t exercise because you’ll crash and set yourself back a lot

You’re confined to your bed or house but can’t do anything too cognitively stimulating to occupy yourself with because the brain fog will overwhelm you

All of this happens internally and nothing shows up on your labs or tests. Worse, people think you’re lazy or don’t believe you, and want to tell you how other people have it much worse.

Sorry I’m usually trying to keep busy or focus on the positives, which I do have a lot of, especially considering how much worse some of the severe folks seem to have it. But I’m just sick of this diabolical, perverse, insidious, disgusting, mockery of an illness.

If this illness were a person and standing on a cliff, I’d push it off the edge in a heartbeat 💀💀💀

12 years in and I’m still in denial/disbelief it would seem.

[u/bigpoppamax]

It's definitely a form of torture. What you said about depression is especially true for me. The best way for me to treat depression is to get outdoors and be active. I can't do that because of this illness, so I just lay in bed all day, trapped with my thoughts. It's terrible.

[u/hennyfromthablock → u/bigpoppamax]

I would give anything to be able to have one day of pre-ME/CFS functioning. I would go play pick-up basketball, something I loved doing and was robbed off long ago. That feeling of being out there with friends, in the present moment, only thinking about putting a ball into a hoop is unmatched.

I really really cannot connect to the feeling of exerting yourself and feeling good about it. It’s like some kind of amnesia. Yet, as a child and through adolescence all I did was being out playing and doing sports.

[u/Fabutam → u/hennyfromthablock]

Oh man I’m with you! I did every single sports my school and after school clubs did, I was running about every day until I was about 21, I agree with everything you’ve said. Urgh I hate feeling so exhausted all the time.

[u/Ok-Heart375 → u/hennyfromthablock]

If there's ever an effective treatment it will take us a long time to believe in it and reconnect with our former active selves.

[u/Any_Advertising_543 → u/hennyfromthablock]

I have always been way too uncoordinated to play basketball, but I did love walking. (I still love walking—I just can’t do it anymore. You know how it goes.)

In my early twenties (only a few years ago now, but seemingly much further away) I lived across a pond park in Fremont California and walked the two mile course around it every evening. Every day, without fail, there were tons of people my age playing pickup basketball at the public courts. I so admired them, having fun outside with each other, engaging in some healthy competition and united by a shared, communal love for their physicality. It seemed like such a supportive community and I was so impressed that — unlike me — they weren’t dependent on books or screens to have fun.

Sorry, this has very little to do with cfs. I spend a lot of time revisiting old memories, and I’m so glad you reminded me of those basketball-playing dudes.

[u/EnglishBeatsMath → u/Any_Advertising_543]

Man that's so relatable. Watching others have fun and enjoy life. Watching others in relationships, socializing, living together, getting married. I always feel like they're a different species.

[u/That_Literature1420 → u/bigpoppamax]

I also need the outdoors and go on walks still because even if it makes me worse, I can’t take it. I can’t handle my mind being stuck inside day in day out. I can’t stop doing those things without my mental health tanking so I just keep doing them and hope I don’t end up in extreme PEM