Thread by @UnwantedGuest3

Why I can’t just treat this “like a cold” and why I won’t “get a fucking grip”

A thread 🧵

Exactly 3yrs ago today I caught CV19 for the 1st time.
Initially it was like a bad cold. It did put me in bed for a day or so but within a week I was back up and about again. So far so good. On narrative.

However things didn’t feel right. I hadn’t quite reassembled properly.

There was a niggling irritation in my throat, a mild pain in my stomach, a tightness in my chest, a mild headache that wouldn’t go, whining tinnitus and an odd fatigue that would just come on unannounced.

I didn’t think much to it. I’ll be fine in two weeks, right?

Wrong.

Unfortunately over the subsequent weeks my health started to slowly deteriorate, like an old car battery being slowly discharged, my mitochondria being bled dry with no way to recharge.

Niggles turned to issues turned to severe turned to critical.

One night I woke up unable to breathe, pains shooting up my left arm and the horrifying feeling of my chest being slowly caved in.

The subsequent months and years have been a living nightmare as bodily system after bodily system collapsed.

There was cognitive function collapse:

Where there were names, places, words and faces before, there was now nothing.

Big yawning black holes of nothing.

No recall.

No memory.

No context.

I cannot describe how utterly petrifying this was.

There was physical function collapse: every day I was in a concussed state. An upside-down with perpetual jet lag, altitude sickness and horrendous hangovers.

Any form of movement made it exponentially worse. I was learning what #pwME #pwcfs have known for decades - PEM is hell.

Sleep centre collapse: I suffered insomnia. It was hard to sleep and to stay asleep. I would jolt awake as if injected with adrenaline, and then spend the rest of the night with skin crawling as if it was on fire. The sleep I did get was useless too. Unrefreshing, unquenching.

Digestive system collapse: Covid destroyed my microbiome.

There are no words to describe the misery of years of consistent stomach cramps, stomach pain, acid reflux and dizzying nausea. I couldn’t eat anything without severe repercussions.

Utter misery.

Connective tissue and muscle collapse: persistent and crushing chest / rib pain, agonising back and shoulder pain, rheumatic joint pain, crunching and crackling tissue in the neck.

People living with chronic pain will tell you that life can be indescribably painful.

Nervous and neurological system collapse: my fight or flight went haywire; adrenaline dumps at 3am, sudden onset panic during everyday conversations, histamine overloads, night sweats, day time chills, whining tinnitus. Oh my god, the whining fucking tinnitus…

And there’s more. A whole lot more.

There’s no space to write about the horrible impact this has on personal / professional relationships.

The terrible financial impact that chronic illness has.

The abuse I’ve received.

The gaslighting from (some of) the medical community.

So this is why, when this second red line popped up on my LFT on Tuesday morning, I can’t just think of this as a cold. I don’t have that privilege.

My eyes have been opened to the devastation that a virus can do to a previously healthy, super fit, relatively young body / mind.

And as for “get a grip” I say a big fuck you. I already have a tighter grip than you will ever understand.

This is a grip that has got tighter and tighter, over 3 years, on the learning that Covid causes unimaginable pain, petrifying symptoms and life-limiting disability.

This is why I now look at that thin red line, and my heart sinks.

That red line represents yrs of loss, grief, trauma, pain and disability.

Am I to go through all this again?

I don’t know if I can.

And just because it hasn’t happened to you yet doesn’t mean it won’t.

END