It’s getting bad again – I mean,
this is technically the worst it’s ever been,
at this time of year – I mean,
there are still unexplored depths that this could reach –
I mean, I am scared of what I know is coming,
and the knowing makes it worse.
It used to only steal my summers, a statement
I recognise is a bit odd, but, you see,
three months out of twelve isn’t bad odds,
good enough to put up with, anyway.
Then it encroached on more of them,
loomed over my springtime, cast long shadows
over the budding daffodils,
and now? It is written into my everything.
Every step that wobbles or trembles or lurches,
all the emergency Lucozades and crisps for breakfast,
the luminously bright compression socks, and,
the water bottle I carry everywhere like
a talisman, or an offering, or a lucky charm,
my best attempt at controlling any of this.
So I’m checking the post every morning
less compulsion than routine, waiting and waiting
for the NHS-franked letter that could change it all
that could halt this downwards spiral
because it’s getting bad again.
Last summer’s suffering was buoyed by the hope
that this year would be different, and yet
the bloom of spring has again signalled new life
and the same reasons to fear my body.
I suppose this is an improvement, this
headlong, headstrong fight
I used to stubbornly call this heat intolerance,
iron deficiency anaemia, dehydration, subclinical,
anything to shrink the problem
down to a manageable size.
These days, I call it by its name: Postural Orthostatic Tachycardia Syndrome
an unwieldy shorthand for biological processes that
remain mysteriously under-researched.
(Although, with up to 85% of POTS patients assigned female at birth,
I think that’s a mystery quickly solved)
I could speak of the lax connective tissue in my blood vessels,
of blood pooling, and of autonomic nervous systems –
the house of cards that crashes down when they fail
but the science boils down to this: I do everything I can
electrolytes and fluids and compression and counter-manoeuvres
hiding in the shade, showering sat down, over-salting everything
gulping down water alongside my fear of fainting
and it is never going to be enough.
So here I am again, it’s getting bad again, I mean –
last year, it almost had a head on collision
with exams and internships and holidays,
I mean – it took everything in me to make that okay.
And I know I can do that again,
can cobble together a joyous life in the
moments in between, but I just –
more than anything, I wish I didn’t have to.
With the suffocating fear comes the dread.
Because I will do everything right – eat the salt,
drown in the bitter aftertaste of the electrolytes,
accept my knee-high bright sock fate,
I know it won’t be enough, I am doing it anyway,
fighting this house fire with a watering can and a prayer.
It’s getting bad again – I mean,
this is the most equipped I have ever been,
in more ways than one – I mean,
I used to dance around it and now I dance with it –
I mean, maybe I can befriend the pounding heart,
the dizzying rush of blood, the bone-crushing
exhaustion of it all.
I mean, maybe I can forgive myself,
every once in a while,
for not being able to outsmart my DNA,
for always trying to do it anyway.
