How are you? The Long Covid version

Old friends ask how I am, and I often answer: “Overall, my soul is good, but my life is very small now.”

It's a strange thing having long COVID.  It feels a lot like I'm in my own personal lockdown and the rest of the world moved on.

Two months into crawling my way out of my 11th infection of COVID, to me it feels a little dystopian that everyone else seems to wilfully pretend that this is all over.

And I know they feel the same about me.

Why won’t I stop going on about it?

“Long covid is so rare!” I hear.

“Back in the pandemic…” I hear. Past tense smoke screening out the very real ongoing infection rates.

It does not kill as many people these days, so it must be done.

These conversions spoon away what little energy I have left.

I managed to make it to Glastonbury this summer, A ridiculous overstretch of my scant energy bank. But I'm old enough to know sometimes you need to nourish with joy, not just crumble to the pain.

I have left the house a total of eight times since I returned.

Two of these trips were to go to hospital.

But it was all so worth it.

And a good job, because the payoff is devastating.

I live a content life.

I'm a little marvelled at how well I cope with a life which often feels like a series of interruptions.

I sleep for a few hours. I look out of my window at the world. I work until the pain or the dizziness takes me. The bills stack up.  I lay down for a few hours.  Repeat.

Days and nights are blurred these days. Insomnia allows me around 3 to 4 hours of rest per tonight, if I'm lucky.

The view out the window is nice.

I have a new love of making random recipes from Instagram.

Sometimes I manage to have enough energy to get out of the house and I walk into the sea. I stand there in the cold, cold water being pushed around by waves like gentle physio and I think:

“This is my life.

This is my body.

This is how it is now.”

Like my little mantra.

I am here.

I am here.

I am here.

Mostly I am happy.

Occasionally the pain breaks me into despair.

On these days I'm often crawling.

Aren’t I lucky to have carpets? I often think. My knees are grateful for the rare softness on hard, hard days.

The view out the window is nice.

COVID damages your immune system. With each reinfection you stand a fresh chance of ending up like me. It's not dependent on how bad the infection is, it's just chance.

“Are you still going on about that?” I hear.

“It's no worse than a cold.” I hear.

“I had it once and it didn't affect me too badly.” I hear.

“Flu kills more people.” I hear.  (This is bullshit, by the way.  But who has the energy? Not I.  Not I.)

“I just had the worst cold I've ever had.” I hear.

“My allergies have been really bad this year.” I hear.

“Did you have the vaccine?” I hear.

“I don't like the way the government handled it.” I hear.

“It's just allergies.”

And I: “Have you tested?”

“It's not covid”

And I: “Have you tested?”

“It's just a cold:

And I: “Have you tested?”

“It's just a sore throat.”

And I: “Have you tested?”

It’s just

It’s just

It’s just

For sure.

Who would want to believe you could end up in a lone lockdown?

In a world which often idolises health as a moral achievement rather than something we will all lose, if we're lucky enough to live that long, I can understand why people want to brush off my scientifically and medically based and lived experience based version of events.

It's all in the past, after all.

I think a lot of people's active denial comes from a general incorrect presumption that with each infection, a virus gets weaker. But that's not true. With each infection, a virus has a chance to mutate, and that could go in any direction.

“But we can't stay inside forever!” I hear professed like a battle cry.

Only it's not “we” at all, is it?

It's “I”. As in you.

As in, “I'm not willing to stay home forever.”

Which, honestly, no one has ever asked you to do. Not once forever.

We were asked to stay at home to protect other people.  But people recall it only like their personal freedoms were stripped to the bones.

If staying at home, sometimes (often when you feel like shit ) could save someone else’s life, would you?

I think most people think they would.

But they don't.

“But we can't stay inside forever!” is a misnomer.

I won't.

I don’t.

So you have to.

d/Disabled people have to.

Immunocompromised people have to.

“Did they have co-morbidities?” I hear – as if it has become ok to rank people’s disposability according to their medical records.

Yes, we need free tests

and free masks

and decent sick pay.

Believe me, I know you think things are bad when you're sick? But try paying your bills after five years of this thing massacring your body daily. Believe me, I know.

And yes, the government closing every long covid clinic in the country except one should have been a national outrage. But / And. Most of us could probably still stay home even if we think “it's just a cold”.

Because even if it is “just a cold” (mate, I don't want that either) you could still wear a mask. Even if it feels a bit weird these days. (I'm d/Disabled. I get it, it feels weird these days. Aaaaand…).

Most of us could actively ask events we go to or organise to ask people who are sick to stay home.

Most of us could speak up for the importance of continuing hybrid events, even if you personally prefer in-person ones.

But we don't.

Because it's inconvenient.

Because we like to believe it's all in the past.

Because people wanted to rush back to their too busy lives, where everyone feels a bit on the edge and a bit overwhelmed all the time (how is “back to normal” working out for you, by the way?).

And sometimes I wonder if it is because no one really wants to be reminded of their own mortality or fallibility.

I get it.

I'm less blaming these days.

I don't have the spare energy to keep asking for people for absolute basics to be put in place so that people like me can stay alive.

Mostly I'm housebound these days.

Mostly I'm happy.

The view out my window is nice.