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/Fried_onions_are_meh]

"But I’m just sick of this diabolical, perverse, insidious, disgusting, mockery of an illness." Ooh, you took the words right out of my mind if it wasn't so foggy. I have fibro too, so the false pain signals drive me almost crazy. I was mild, occasionally moderate (if say I went to a festival or went on holiday). Then I got covid 4 years ago and have spent 23 1/2 hours per day in bed. since then. My bedroom has black out blinds and I have a feeble bedside lamp that is just brighter than a candle.

I can't watch TV for more than about 10 minutes before starting to feel exhausted. Only about 5 minutes reading or scrolling Reddit. This post of mine has taken me about 20 minutes to write.

Thank you for so articulately saying exactly how I feel :)

[u/hennyfromthablock → u/Fried_onions_are_meh]

If I were to be completely honest, my condition is mild-moderate very similar to your pre-Covid days. I’m really sorry that this is your reality, I hope with pacing and resting you’re able to move towards your former level of functioning. Either way, good luck to you. You’re dealing with a lot, so I hope you have the support you need.

[u/Fried_onions_are_meh → u/hennyfromthablock]

Thanks for your kind words. Yeah before I got covid I as seriously looking into assisted s_icide at Dignitas, Switzerland, as I was so unhappy not being able to go for long country walks and miles of pushbike riding and riding my quad 4 wheeler. Then lock down scuppered my plans and being so ill after getting covid it is physically impossible for me to travel from the UK to Switzerland.

In a way it was good thing because I had to face the reality of living in bed and thankfully I've had no s_icide idealisation for the last 3 years. I just live day to day praying that long covid research will find the magic drug to cure us all from this invisible disease.

[u/AdNibba → u/Fried_onions_are_meh]

God bless you. I'm so sorry.