At the beginning of the year.

I have discovered that our kitten Harry, is a Harriet. She’s a ginger tabby girl. ¡que sorprisa!

I have been on a bit of an emotional rollercoaster this week. I restarted my routine, which involves, moaning about having to exercise, doing some aerobics, cooling down and then some vocal exercises.
It’s very important to be able to moan about ‘having to exercise’. It puts a person on an equal footing with the rest of the able-bodied world. I moan and whinge about ‘having to do these bloody exercises’ and secretly relish the luxury of being able to do this.
It came to a bit of a painful end when I turned over in bed on Thursday night and my left knee ligaments decided to jump around. Yes, it’s stupid knee time again.

I’m resting it, trying not panic and to keep a brave face on things. Something strange happens to the nerve endings on the left lateral joint. It seems to have an emotional effect –immediately triggering panic when massaged.
So, I’m not nuts. No, that cluster of nerves on the outer side of my left knee is. It is experiencing a nervous breakdown and I’d like it to stop.

I have been thinking about the invisibility of illness. This is a sad fact of life for anyone who becomes ill with a progressive and incurable disease. We disappear from society and sit, quietly at home, trying not to think about what we’ve lost.
Multiple Sclerosis is a robber and a thief. It’s a vampire. It sucks your energy and mental focus.
Many people and organisations are kind. They don’t mind if you miss odd rehearsals, or stop a little earlier than others – but the problems start when a musician (or any other person doing a physical activity) moves house.
How does a person explain cognitive and physical fatigue to strangers?
Most choirs do rehearsals that last for two hours. This can be just too much effort, too late at night and MS robs us of the strength to manage this well.
If I had the energy, I’d form an orchestra and choir and maybe even an opera group for people with MS. The only rule would be that the conductor and music director would have to have MS as well. They’d understand what happens when musicians become fatigued.

So, here’s an attempt to describe the fatigues (physical and cognitive) that people with MS experience.

One minute the musical notes are clearly in focus and you are sight-reading and enjoying the challenge and emotional rush of the moment. Imagine that great emotional moment in Handel’s ‘Messiah’ when the choir sings ‘He was bruised for our iniquities’.
A minute later, the legs are starting to ache and the knees wobble.
Those printed notes in the score, become blurred and you start to feel slightly nauseous and all of a sudden, you feel as though all your energy has run out through your hands and feet, rather like the plug being pulled from a bath.
The energy disappears with the same speed and force as the bathwater and you can’t explain what’s happened.
Your face is tingling and your voice is suddenly weak and childlike. Your hands can’t hold the musical score and you struggle to find the motor control to turn to the next page.
No, cognitive and physical fatigue is not kind. It is a merciless thief.

The energy returns – it may take two or three days to do so. This is fine, just so long as there isn’t a concert the next night.
So. I and my lottery millions (it’s as likely as my dreams of musical activity and participation) would start a Musical Foundation for the Promotion and Encouragement for People with Multiple Sclerosis. Go on. Get out there and knock ‘em dead.
We’re cool, we’re talented and we’re somewhere out there. Hiding in plain sight.
You know? I feel much better now that I’ve got that off my chest.

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