Thread by @UnwantedGuest3

It’s been 600 days since I went down with a mild case of #covid. In this time I have experienced the most terrifying and relentless illness in #longcovid. Thankfully I do feel better these days but in some ways I’m a shadow of the man I used to be. Some highlights from 600 days:

1. Lungs that burnt and felt full of flour making it impossible to get a full breathe or to “feel” a full breathe. For six months. I will NEVER forget that suffocating feeling. Every day and night. It has left me traumatised.

2. Chest pain and compression for 12 months that made it feel like I was trapped under the wheel of a car. The pain was agonising and radiated down the left arm. I should have called 999 every day for a year. I did once, and all tests were clear.

3. Relentless stomach pain, cramps, nausea, reflux. For 14 months. Nothing bought any relief. Every item of food I consumed just aggravated it. I’ve lost 7KG and I was in good shape before. None of my clothes fit any more.

4. Both types of nausea - waking and falling asleep - for 9mos. I’ve got 2 kids and know what sleep deprivation feels like. This was next level. I was SO tired but if I was lucky enough to fall asleep I would wake within minutes as if injected with a litre of coffee. Exhausting.

5. Fatigue: this is a shit description of the existential exhaustion I felt every day for at least 1yr. A flat battery that sleep barely touched. Like the most severe jet lag and hangover I’ve ever had. Together. Every single day and night.

6. Pain. Everywhere. In joints, in muscles, in tendons, in my head. Everywhere. And nothing helped it. It’s like all the deepest tissues had been stretched out on a rack and whacked with a hammer. The pain in my back and chest was insane and still troubles me today.

7. Tinnitus: howling screeching whining tinnitus in both ears every day for 20 months. Like a personal dial up modem. When I wake up and when I fall asleep. I try to ignore it but some days it drives me mad. I don’t want to think about the cause either…

8. Cognitive impairment: I refuse to use brain fog because that sounds cartoony. There is nothing cartoony about this symptom. Gaping black holes in my memory. Missing words, names, faces. No recall. A mental vacuum. Fucking terrifying.

There were and still are (many other symptoms). I fucking hate that I now have PEM and cannot exercise or drink alcohol. My grip is weak now. My eyesight is failing. I look like shit most days (maybe I did before?!) and feel like I’ve aged 30 years.

And all of this is compounded by the fact that there are no answers. No one knows what to do with us. There are lots of theories and some things work for some people. The best we have, after two years, was given to us by our friends in the ME/CFS community. Stop, rest and pace.

#longcovid is a terrifying and lonely journey. Ive never felt so vulnerable in my life. I’ve sat on the end of my bed and cried more than I’ve cried in my life. Horrendous symptoms, a maiming, life limiting illness with no answers or cure. It’s a bastard dementor in virus form.

BUT. And its a big but. I am getting better. It’s slow but I am getting better. There are silver linings. I know my body better. I’ve slowed my life down. I’m grateful for everything. I’ve met many warriors and survivors and inspiring people. Here and IRL. And I’m getting better.

This is not for sympathy. Most people I know with #longcovid don’t want sympathy. They want to get better. They want people to be informed. They want research. They want to be listened to. They don’t want other people to go through this bollocks.

Please don’t go through this bollocks. You know what you need to do to not go through this bollocks.

ENDS

(Insomnia, not nausea FFS! 😆)