A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday 27 December 2017

Christmas wrapping

Crikey, that's another Christmas wrapped up and now we're enjoying the inbetweeny bit.


Time to spend important hours with family and friends.
Time to be thankful for what I have and to stop dwelling on what I don’t.
Time for me to wish you and yours a very peaceful and healthy new year.

Wednesday 13 December 2017

Cold hands (Warm heart)

So, let's talk snow.
There's been four days of relentless sky-swelling deluges where we live and as a result even the most unloved streets look like Christmas cards.

So white, so pretty, so perfectly pristine.

So effing, effing cold.

Good lord, I hate the cold.
And, by logical extension, the snow.

Yes, I know that makes me sound like some sort of selfish weather Grinch who isn't thinking of excited children's hopes* for fun days of gambolling in the park with sledges! And snowballs! And cheery snowmen with wonky carrot noses and scarves stolen from indulgent grandparents.

But there's a good few MS-ey reasons why I have come to hate the white stuff that spread far wider than the travel disruption, the school closure palava or our cats whining incessantly that they don't want to go outside and relieve their distended bladders and glaring at me as if the whole sorry mess is ENTIRELY MY FAULT.

And these reasons are:
* legs seize up leading to painfully slow progress
* brain seizes up leading to, er, painfully slow progress
* speech slows down leading to garbled pleas for help, immense frustration and flapping of increasingly stiff arms like some sort of deranged penguin

The reasons why the cold causes such difficulties have been outlined in this interesting and helpful article from the MS Trust.

For the moment, at least, it looks like the cold snap is here to stay. So while it is, I'm bundled up in layers, working from home (typing in fingerless gloves like some sort of modern day Bob Cratchit) trying to regulate my temperature with a constant supply of tea.

I might have a hot bath too - although as the heat triggers Uhthoff's phenomenon and quite often causes temporary loss of vision in my damaged eye, perhaps I won't.

Argh, the impossible balancing act of multiple sclerosis.

On reflection, perhaps I'll just wait it out wrapped in hay lying prone in a cardboard box like a Blue Peter tortoise.
But with rather more gin and mince pies than our scaly televisual friends may have been allowed.



:: Cold hands (Warm heart) by Brendan Benson 

*I am actually hoping those children are having a lovely time in the snow. I did brave the garden with my daughter to build a small snowman. Then had to lie down under many blankets for a couple of hours, but it was snowtally (sorry) worth it.

Wednesday 6 December 2017

I'm still standing

This week's blog has been written by my brilliant daughter. 
She's nine and is the most thoughtful and caring person I know – I learn something from her every day:


When I'm at home I forget that mummy has MS, I always do baking with her and we have made some amazing cakes.

This year has been good and bad - mummy had a eye patch for the start of the year but now she is on tablets to try and stop her having relapses.

She can play with me a lot more and she doesn't get as many headaches.
We can go the park and also decorate the Christmas tree together.

Last Friday, mummy was helping set up at the Christmas fair at my school and I was at guitar, when I came out of guitar she came and gave me a hug and a kiss.

The reason why I chose this song is because I have always known mummy when she has had MS. She has had a few relapses and I have been with her.

So it means that I am still standing even though she has had relapses.
I know we will be ok even though it is sad to see her ill.


:: I'm still standing by Elton John