Day 196-352 (Part 9): I Think I’ve Been Grieving… I Just Didn't Realise It Until Now

8 hours ago
4 min read

Something changed in me over the last few months.

Not physically.

Mentally.

And I don’t think I admitted it to myself until very recently.

I’ve always been the person who gets on with things.

Problem?

Fix it.

Feeling rubbish?

Push through.

Someone tells me I can’t do something?

Watch me.

I’ve always been stubborn.

Probably too stubborn.

It’s one of my best qualities.

It’s also one of my worst.

Because you can’t out-stubborn your own nervous system.

Believe me…

I’ve tried.

For months I kept thinking…

“Next week.”

“Next month.”

“By summer.”

“I’ll be back to normal.”

Every time I thought I was getting there…

PoTS would remind me who was in charge.

I’d have one good day and think…

“YES! This is it!”

The next day I’d be lying on the sofa wondering why walking upstairs felt like I’d just climbed Ben Nevis carrying half of the house on my shoulders.

It became exhausting.

Not just physically.

Mentally.

Because every little bit of progress came with another setback.

I don’t think people realise how much invisible illnesses mess with your confidence.

Not because you lose confidence in yourself.

Because you lose confidence in your own body.

I don’t trust mine anymore.

That’s probably the hardest thing to admit.

I used to just…

Live.

Fancy going shopping?

Let’s go.

Fancy a festival?

Absolutely.

Fancy dancing until two in the morning?

See you on the dancefloor.

Now?

Everything starts with…

“It depends…”

It depends how hot it is.

It depends how I’ve slept.

It depends what my heart decides to do today.

It depends what my blood pressure’s up to.

It depends whether I’ve drunk enough.

It depends whether my shoulder’s behaving.

It depends…

Honestly, I’m fed up with depending on things.

I miss being spontaneous.

I miss saying yes.

Now my first instinct is…

“I’m not sure.”

And I hate that.

Absolutely hate it.

People keep saying…

“You’ll learn to manage it.”

I know they mean well.

They really do.

But sometimes…

I don’t want to learn to manage it.

I want it to bugger off.

I want my old life back.

I want to go to a beach without mentally calculating where the shade is.

I want to go to a rave and dance until my feet hurt…

Not because my circulation’s packed up.

I want to go for a long walk because I fancy it.

Not because I’m testing whether today’s a “good PoTS day.”

I want to stop thinking about my body every five minutes.

Honestly…

I’m bored of myself.

There.

I said it.

I’m bored of talking about symptoms.

I’m bored of blood pressure.

I’m bored of hydration.

I’m bored of explaining PoTS to people.

I’m bored of saying…

“No, it’s not my heart.”

“No, I’m not just anxious.”

“No, I haven’t fainted today.”

“No, my feet aren’t always blue.”

Actually…

Scrap that.

They usually are.

And my poor boyfriend.

Honestly…

I don’t know how he’s still here.

I genuinely don’t.

Because let’s be honest…

I’ve become hard work.

Not emotionally…

Practically.

“Babe…”

“What colour are my feet?”

“Babe…”

“Can you pass me my Hydrava?”

"Babe…”

“Do you think I’ll be alright if we go out for an hour?”

“Babe…”

“It’s too hot.”

The man deserves some sort of government recognition.

Forget an OBE.

Give him a medal shaped like a compression sock.

At one point I actually apologised to him.

I said…

“I’m really sorry you’ve ended up with this version of me.”

Do you know what he said?

“You are still you and I love you very very much!"

I cried.

Obviously.

Because apparently I now cry at absolutely everything.

Dog advert?

Crying.

Somebody wins Bake Off?

Crying.

A nice sunset?

Definitely crying.

Honestly…

I blame hormones.

Or PoTS.

Or both.

But what he said stayed with me.

Because I realised I’d spent months grieving the old Jabatha

The Jabatha who travelled without worrying.

The Jabatha who loved the sunshine.

The Jabatha who danced all night.

The Jabatha who didn’t think standing up required a strategy meeting.

The truth is…

She isn’t coming back.

Not exactly.

And maybe that’s the bit I’ve been struggling to accept.

Because this isn’t something you recover from in a fortnight.

This is something you learn to live alongside.

I’m still figuring that out.

Some days I do really well.

Other days…

Not so much.

Some days I laugh about my Smurf feet.

Other days I sit on the sofa and think…

“Is this my life now?”

I’m not ashamed to admit that.

Because I think pretending you’re positive all the time is exhausting.

Some days are rubbish.

Some days are brilliant.

Most days are somewhere in the middle.

And that’s okay.

One thing I have promised myself though…

I’m not letting this become my entire personality.

PoTS is part of my life.

It is not my life.

I refuse.

Because I’m still the same woman who loves music.

Still the same woman who laughs at absolutely inappropriate moments.

Still the same woman who buys too many clothes.

Still the same woman who swears at fitted sheets.

Still the same woman who’ll spend twenty minutes talking to the cats as if they’re paying the mortgage.

I’ve just got a few extra accessories now.

Compression socks.

Electrolytes.

A smartwatch that’s become more controlling than my mother.

And a boyfriend who’s accidentally qualified as my full-time Chief Foot Inspection Officer.