A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday 23 December 2020

Relax

Broken up from work for Christmas.

Grateful to have a job.

But very grateful to be able to put on jingly festive slippers and stop for a bit.

Merry Christmas to you in what has been the strangest of years. 

Very best wishes for a new year significantly better than this one.


:: Relax by Frankie Goes to Hollywood


Thursday 10 December 2020

The fear

Yikes!

Yikes, yikes, yikes, yikes, yikes.

I've had my first bloods back after my first course of Cladribine. Lymphocytes are on the pretty blinkin low side.

I've just about avoided having to have any anti-viral drugs and have simply got to hope they start climbing again.

I knew they would put me at increased risk of infections but knowing how low the numbers are is pretty worrying.

So, to avoid spiralling into unhelpful panic despite what the results may say, I am trying to be both practical about what I can do to help now and positive about what this might mean for the future.

Because MS is all about the long game - and a hefty amount of hope.



:: The fear by Pulp


Wednesday 2 December 2020

Quicksand

The past few weeks have been a bit of a challenge.

Work has been overwhelming, friends and family have needed support and the general gloomy weather and unnerving news cycle has seemed relentless.

Then running alongside all this is the knowledge that my body is starting to fail me in new and unsettling ways.

The constant MS hug is second nature now, but nonetheless exhausting for the familiarity.

My slower thinking and reduced ability to make decisions as the day progresses and fatigue hits is more noticeable this year compared to last.

My walking, balance and dexterity have been affected. My stamina is not what it was.

And the general lack of confidence in my abilities that I've always had, is translating into exhausting emotions.

I'm pretty much running on empty all the time, but with the knowledge that the tough days are more frequent than they used to be. 

And, worryingly, the fact is that this may still be the best that things can get.

While I'm not completely drowning yet, I am starting to sink. And although I've pulled myself up on quite a few occasions in the past, it's getting harder to know how to do it again.


:: Quicksand by Tom Chaplin