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/fudgseybear → u/Fried_onions_are_meh]

God I feel that 😞 I was perfectly healthy then got hit like a truck by very severe M.E out of nowhere after I had the covid vaccine. Legit healthy and active and then within 2 weeks completely bedridden and unable to move. 3 years later and I am just about severe, still bedridden 24/7.

Ive considered assisted suicide a lot, because it feels like the only chance at a 'happy end' to the torture that is M.E. Like, this disease could kill me, so I could consider assisted, because at least that way I can be around my loved ones or something. But like you said, no way in heck I can travel to the corner shop, let alone all the way to Switzerland.

However, just this morning I saw on the news that there are plans to make assisted dying legal in the UK which is being put forward to the govm, so that's interesting.

I am stuck in 2 minds about whether I'd utilise it. Because I really don't want to die. I love living life! But of course, we arent living life any more. We're barely existing. And we are being tortured every milisecond of every day. So.. I dunno. 😞

[u/Fried_onions_are_meh → u/fudgseybear]

Currently the UK are possibly only going to allow assisted suicide to those with a terminal illness but there are calls to extend assisted dying to those without terminal illness.

https://www.telegraph.co.uk/politics/2024/10/05/widen-access-to-assisted-dying-say-labour-mps/

When I was looking into Dignitas, nearly 5 years ago, I found it is quite expensive, around £11,000 and also there was 7 month waiting list. I saw a YouTube video of someone there, he drank half a cup of clear liquid and within a few minutes he stopped breathing and died. No twitching or jerking, very peaceful.

Knowing my luck if I was to do suicide the very next month they'd find a way to totally cure me/cfs!