Someone asked me what I wanted to write about - and honestly I think its just long covid. The world's moved on and I am still here because this is my life

I was never a jealous type - but you know the thing that makes me most envious each time I see other people? How they walk - with ease, fast..maybe up a flight of steps without feeling that they would crash..when they don't need that public bench or perch to stabilise..when they can just be

Some days there is a mirage of happiness that I created - and then in moments the illusion shatters. Is it painful? No, its just a game of survival and calculations to saving energy. I cannot remember what it was like to not calculate every step I took. There is no space for feelings here.

Before you tell a disabled person it’s their family’s responsibility to care for them… remember that not everyone has family.

What’s more, disabled people are far more likely to be trapped in abusive relationships.

Better social supports would help them break free.

It’s hard to grieve what hasn’t died.
Friendships. Trust. Normalcy.
They’re still there—just not the same.
That’s called ambiguous loss.
And it’s everywhere now.

A quick thread 🧵

..that longing for climbing stairs without feeling like I would crumble, walking in forests without wanting to collapse, calculating every second while forgetting it all?

Do you think this grief will ever go away? This grief that now runs through my veins and my soul? That voice that says this is all you could ever be..

There is such a loss of identity with chronic illnesses like long covid. They say you are what you do. But what if you are only doing something to survive? Who I am is surely more than this? It's more than the need for me to lie down after every shower, more than me saying no to outings with friends

When I was diagnosed with chronic fatigue, another doctor explained how that in itself was a lack of diagnosis. Its like long covid is back void and I am left floating in these dark holes with gaps in my memory, my muscles and dreams.

I remember that mini panic when I stared at a co-worker I has been talking to everyday and couldn't recall his name. It;s hard to accept this reality.

How do I explain to every person I meet now that I don't remember words anymore. While I am still working, I struggle to read, write and explain myself.

If you’re dealing with Long Covid - there’s a chance you’re also dealing with MCAS and/or POTS/Dysautonomia.

They’re two of the most common comorbids - and can have a devastating impact on quality of life.

New allergies? Alcohol intolerance? Dizziness? Fatigue? Fainting?

A mega 🧵 of resources

It's been 3.5 years? some days it feels like this is not my real life, other days a deep sadness that this is all I will ever have. Some days the memories feel unreal, other days it feels like its all I have.

Today I typed out my own phone number and tried calling it on my phone thinking it was the hospital number. I've had this number for over 10 years. Are we still calling this brain fog?

Brilliant report on UK #LongCovid healthcare. It’s horrific so many are not getting appropriate care for such a life-altering illness. I’ve had LC since 2020. Discharged from LC clinic last year - never had appt with their Doctor & still have disabling symptoms.
#ClosingClinics