5-4-3-2-1

Numbers and me – we're not friends.

I wasn't a fan of maths at school and am now reliving my fear of fractions through my eight-year-old daughter's increasingly complicated maths homework which seems to my rusty brain to be pitched somewhere between Stephen Hawking and Albert Einstein.

And yes, I know we use maths every day and yes, there are numbers everywhere but as I picnic in our local park I don't generally calculate the height of trees from the length of shadow cast. (I'm trying for the life of me to dredge up what this process is called. Gah, can't remember. *Googles* Ah, proportional reasoning. Another fact to instantly forget.)

But you can't avoid the numbers game with MS – which for the purposes of this post I am renaming the Maths Shit.

For a start, there's the odds of developing it – research highlighted by the MS Trust tells me that in the general UK population about 1 in 600 people has MS.

To have developed it, you need to deal with more maths - there are currently 110 genes that have each been found to increase the risk of someone developing MS to a small degree. None of them directly causes the condition itself and someone with MS will have a combination of many of these genes.

The researchers have then calculated that genes contribute just over half (54%) of the risk factors. The remainder would probably be due to environmental factors. (I don't think these environmental factors have anything to do with knowing how to calculate the height of an actual environmental tree.)

Then there's the maths of other people – or the chance of developing MS by relationship to someone with MS:

• Identical twin - 1 in 5
• Non-identical twin - 1 in 22
• Other brothers or sisters - 1 in 37
• Parent - 1 in 67

So I had a 1 in 600 chance of developing a disease which was itself dependent on a combination of 110 genes which in turn was dependent on two different percentages of two different types of risk.

And this convoluted calculation has led to the very frightening prospect of having saddled my daughter with a 1 in 67 chance of developing the same disease.

Although that risk is still dependant on her own combination of genes and personal environmental risk factors, it remains a horrible, horrible mathematical inheritance. And proof, if any was needed, that numbers and me are never going to be friends.

:: Song 5-4-3-2-1 by Manfred Mann

Ps A big thank you for my cuppa on Monday night at group. You are a very kind couple and the next time the drinks are on me.

Enjoy the silence

Things it might be wise not to say to a person with MS.*
Think of it as a handy cut-out-and-keep guide.

Haven't you seen the news? There’s a cure!
No, no there isn’t. There are disease-modifying therapies that we can inject, swallow or be infused with that MAY reduce the likelihood of relapses but they are not a cure because a) they don’t stop all relapses and b) they do not repair old damage. There is, however, positive new research and new breakthroughs which may lead to new treatments – but these take a long time to become available to patients as they have to get through in-depth medical trials and licencing approval.

How come your new drugs aren’t making you better?
Because sadly that’s not how they work. They don't repair previous damage, they don't stop all relapses, they are disease modifiers that MAY cut relapse rates but they bring with them a whole range of really quite significant side effects which can actually make us feel more poorly.

So why don’t you just try a different medication, one that doesn’t cause side effects?

Erm, because there aren’t any.

Maybe you should try cutting out *random foodstuff*?

Obviously good diet and exercise is important, I’m not denying this; it’s more the disdainful/evangelical/judgemental proclamations over my choices based on reading one headline - and the assumption that I can’t research and find this stuff out myself as, you know, the actual person with the actual disease.

Maybe you should try adding in *random foodstuff*?

See above

Should you be drinking?

Please leave now. And order me a double on your way out.

Are they only keeping you in your job because you’re disabled?

While I can’t deny this hasn’t crossed my mind I would just like you to have a little think about what effect that question might have on someone.

I knew someone who had MS and they died from it.

Now why would anyone want to hear about that?

Oh yes, I’m tired too

Gaaaaaaaaaaaaaaaaaaaaaaahh.

:: Song – Enjoy the silence by Depeche Mode

*All of these have been said to me.

Mykonos

Like many, many people I am struggling with the news at the moment.

As a former reporter it's somehow ingrained in me to keep watching it - and part of me feels it's disrespectful to the victims of these atrocities to turn it off.

But I am also aware it's not healthy to obsessively check it. 

Perhaps it would be helpful and sensible to take a small break and heed the advice of poet Wendell Berry:

The peace of wild things

When despair grows in me
and I wake in the night at the least sound
in fear of what my life and my children's lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting for their light. For a time
I rest in the grace of the world, and am free.

:: Mykonos by Fleet Foxes