A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Monday 28 March 2022

The boy in the bubble

Jeepers.

Just had my bloods back after my second week, second year of Cladribine.

Appears the toxic tablets are doing what they're meant to do - and possibly doing it too effectively.

My lymphocyte count is on the floor and I'm awaiting advice on the best way to stay as healthy as possible.

It's that spot between a rock and a hard place - when the drugs that are meant to help are in themselves something of a threat.

Plus things are a little different this time round. In autumn/winter 2020 when I completed my first year and had a drop, we were at varying stages of Covid lockdown.

No one was venturing out for long (unless required by circumstances), schools were closing again and masks were everywhere.

This time, all bets (and masks) are off and I'm nervy. Not just for Covid-related reasons, but for all the other nasties in circulation.

Low lymphs mean I will be very prone to infections - with potential threats being both external and internal.

I've already had three bouts of shingles, I have a daughter in a classroom of rising coronavirus cases (had it once, but could get it again) and we don't live in a sterile environment.

Bar wrapping myself in a bubble of cling film and avoiding everyone and everything, I'm not sure of the best way forward.

And this is the situation for many, many people who are at way more risk.

We're watching life go by from inside our bubbles and marvelling at the thought of being able to take good health for granted.

At not having to weigh up the pros and cons of seeing family and friends, the constant checking of cleaning and food preparation, the guilty negotiations with work colleagues and the endless ruddy admin of medical monitoring.

But dwelling on these thoughts for too long becomes stressful and distressing - and that's certainly not going to send my lymphocytes back in the right direction.

So I'm simply going to have to await advice from my MS team and try to enjoy my leisure time in the most enclosed way I can.

:: The boy in the bubble by Paul Simon





Thursday 17 March 2022

Good fortune

I'm suspicious.

And also superstitious.

Things have been quiet health-wise for a bit.

Well, I say quiet, there's been Covid and three bouts of shingles and general pain and exhaustion.

But there hasn't been massive MS hits.

Why? Why is this? Is it Cladribine, is it a naturally quiet period, is it that I'm ending distinct relapses and just slowly tipping into secondary progression?

It's unnerving.

You'd think it would be a good thing, wouldn't you? An appreciate the moment and be grateful thing.

And I am trying - trying really hard to appreciate and I am desperately grateful. But I can't shake the suspicion.

And I can't shake the superstition that writing about being reasonably ok will cause a massive backlash.

Not logical, not healthy and not really a sustainable way of looking at things.

I'm sure there's a psychological term for this and it's bound to be tied up with anxiety on some level, because many things are.

The only thing to help, it would seem, is remembering that I'm having my bloods taken next week to see just how much damage Cladribine has done to my immune system.

Fully anticipating negative news.

And oddly, that feels so reassuringly familiar it's almost positive.


:: Good fortune by PJ Harvey




Thursday 10 March 2022

Gimme shelter

There feels little we can do but watch in horror as events in Europe unfold.

But here are some small ways to help

:: Gimme shelter by The Rolling Stones