A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday 20 September 2017

North country boy

We’re having our kitchen ripped out and refitted at the moment.

It is long overdue and both exciting and somewhat testing.

We’re trying our very hardest not to live on takeaways and are spending quite a lot of evenings trying to reassure our two cats that the bangy, smashy men won’t be here forever.

Their furry brains are refusing to accept this and every day starts with them bolting through the cat flap at speeds I never thought cats could hit (particularly the larger one whose main activity is to eat until his cheeks resemble spacehoppers and then sleep it off until the next meal.)

But it’s getting done and, thanks to our kitchen fitting duo, getting done with a combination of amusement and 90s indie.

As evidenced the other day when I wandered past the gaping hole that is currently our kitchen to find one balancing precariously up a ladder and the other with his head in a cupboard both singing along loudly and happily to the radio.

Brilliant.

:: North Country Boy by The Charlatans

Wednesday 13 September 2017

Don't you worry 'bout a thing


My daughter said a lovely thing the other day.
Not a grand proclamation of love, not a universal message of kindness and friendship and not even an announcement that she was doing her homework unprompted. (Although to be fair to her, she does do two thirds of these things; we’re working on the homework.)
No, it was: “Mummy, sometimes I forget you have MS.”
It was such a simple sentence, but such a great thing to hear.
Not because I want her to live in denial, not because she thinks I’ve got better, not because I hide it from her, but because I want her to be able to forget. If not all of the time, then certainly sometimes.
I want her to know that although MS is there, it won’t take her over. That my illness has never been her world, her responsibility or her fault.
It’s not easy. She’s a thoughtful and sensitive child who is very conscious of other peoples’ emotions. Who knows if she always would have been this way or if growing up with MS has made her more empathetic.
It is incredibly difficult for a child to grow up with a parent affected by any sort of ill health. A parent who cannot always be consistent, a parent whose future is uncertain, a parent who might appear to be leaving you bit by bit, day by day.
That’s a pretty hard mix to get to grips with as an adult – almost impossible to imagine how it must be for a child.
What we’ve found helps as a family are these simple things:
* honesty – our daughter knows that mummy’s body doesn’t always work properly, that she might need to take sudden rests, that she takes medicine, that sometimes she has to miss things. Age-appropriate honesty and open conversations can help stop or lessen some of the imaginary fears.
* attitude – having limits is nothing to be ashamed of, we all have them in varying ways. But recognising and readjusting your limits then carrying on with pride and confidence is a really good message.
* planning – children need to feel there is always someone there for them. If I can’t do a school pick up or party drop-off then we ensure a family member or friend can. It may not stop the worry that I’m not able to do it, but it eases the uncertainty a bit.
* appreciation – being able to live in the moment is something kids can do really well. I’ve learned a lot from her on this and we often talk about all the things we are grateful for. A friend has a daily positives blog which does this fantastically well and it really makes a difference to your mindset.
* love – she will never be short on this.
I know my daughter worries about me, I know she probably always will. But just for the moment, I’m glad she’s able to forget.

Wednesday 6 September 2017

Vanity kills

Right.

That's it.

I'm having a hair cut.

My crowning glory - which has absolutely never been glorious - has been reducing in volume for the last few months and although we have had some stresses, I think there may be another culprit...

The official side effects of Tecfidera don't list hair loss, but there's far too many anecdotes on Tec forums of hair breaking, thinning and full-on shedding for me to not believe there is a link.

So Friday will be haircut day and I fear with the amount lost, I'm going to have to go short.

The last time I had a crop I was a sensitive teenager at secondary school and was emotionally scarred by a dinnerlady who, on seeing me line up with my friends, asked "Oh, are you sitting with the girls as well?"

Not a great confidence boost to a 13-year-old with spots, a sizeable nose and now, apparently, a masculine aura.

But there's no getting round it, my hair is falling out so the scissors are going to have to get a workout.

And I shall be wearing everything feminine I can lay my hands on for the foreseeable future.

:: Vanity kills by Codeine Velvet Club