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 

Big yellow taxi

It's the end of May! (Just to be clear, that's a calendar reference, not a premonition of the upcoming election. Although who knows.)

Unbelievable that five months have gone by so quickly – and in our case, so medically busily.

In the past five months, four members of our family have needed to call on the NHS a total of 63 times.

Sixty three. That's an average of 12 times a month accessing an aspect of the service.

Even with the inclusion of me as a resource-draining individual, that's a pretty hefty demand from a small group of people.

The appointments have covered brain, eyes, teeth, heart, breasts, digestive system, liver, knees, emotional well-being and countless blood tests.

They've required six different consultants in six different specialities, four different hospitals, 10 specialist nurses, seven general practitioners, 19 nurses, three radiographers, four dentists and four pharmacists.

Treatment has included cardioversion, endoscopy, scans, fine needle aspiration, eye examinations, x-rays, root canal and a variety of medications.

At every appointment we've been treated with care, courtesy and professionalism. Yes, very occasionally we've had to wait a bit but there's always been an apology.

And every time there have been an army of other people waiting to be seen and treated by the same doctors or nurses or dentists in the same thoughtful and professional manner.

All that use and we're not even halfway through the year yet.

I've written previously about my admiration for the NHS and while I acknowledge parts of it aren't perfect, the thought of being without it doesn't bear thinking about.

But an organisation which was formed on three core principals:

• that it meet the needs of everyone
• that it be free at the point of delivery
• that it be based on clinical need, not ability to pay

looks to be increasingly under threat and that absolutely terrifies me.

I want to support the NHS and I want to thank it and everyone who works in it.

I know what I've got and I don't want it to be gone.

:: Big yellow taxi by Joni Mitchell 

Be strong now

I've been invited by an online MS community to write a letter to my newly diagnosed self that they can share with their members.
I enjoyed doing it, so thought I'd share it here too:

Dear 2004 me,

You are stunned and worried and trying to be brave.

I am older and wiser and have a few things to share:

• You are hugely stubborn, we know this. You are pig-headed, independent and bloody-minded and sometimes this will help you. But your family and friends will want to look after you. Let them. They are scared too and need to stop feeling helpless.
• Start looking after your body more, it may not feel like it at the moment, but it's on your side and will try and repair itself in more ways than you can imagine. It will lace up its gloves and step into the ring for you time after time - the least you can do is be kind to it.
• You are still working, but you do change jobs. Twice. Perspectives change and your professional outlook has shifted too.
• I know it's on your mind; yes, you do have a child. She is beautiful.
• NEVER lose your sense of humour. It will be tested, it may get darker, but it remains a remarkably effective lifejacket.

In time you will wake up and those two letters will not be the first thing you think about.

Life will continue; you will stubbornly wear your best high heels and laugh and cry and learn along with it.

You are far, far stronger than you think and I am very proud of you.

Love 2017 me.

Ps that man you're with? The one who didn't run when you found out the news? You're right - he is the one. Marry him.

:: Be strong now by James Iha

Green eyes

Of the seven deadly sins, I reckon I’ve made my way through a fair few. Sometimes all in one go.*

It’s tricky to know which of the seven – lust, gluttony, greed, sloth, wrath, envy or pride – is the most commonly experienced. 

Although in a world full of a) humans and b) human nature, I’m pretty sure you could make a case for each of them.

But the one I’ve been aware of most during my MS life is envy.

It's certainly not there all the time, it absolutely doesn't stop me being happy for other people; but it is a part of my MS experience and that’s not a pretty thing to admit.

It’s not the simple envy of that woman in the office’s fabulous new sky-scraper heels. Or her photographs of an exotic and sunkissed holiday.

And it’s not even about her tales of her spontaneous fun while wearing the fabulous shoes in the exotically sunkissed location.

No, it’s not the things themselves - it's more what those things represent. 
It’s the fact that she can wear and do and enjoy all these things without even having to think about it. Or at least, not as much as I would have to think about it.

To the outside observer, there are a lot of glaringly obvious difficulties with having a disability. But there are also small things that can bring on the green mist. The endless niggly little things that I never even had to consider in my life pre-MS.

So if I applied these niggly little things to the imaginary sunkissed - or in our case typically British-weathered - holiday, they would include:

Do any of my seemingly endless medical appointments clash with the holiday dates? Where is the nearest doctor/dentist/hospital/chemist? Where are the regular and emergency toilet stops on the journey? Will I be able to organise my drug pick up times to ensure my meds co-ordinate with my break? If I go for a paddle with my daughter in the morning will that wipe me out the rest of the day? How do we co-ordinate relaxed family eating out around my tablets? Exactly what insane volume of clothing will I have to pack to cover all my temperature issues? (Although to be fair, this last one is well known to anyone holidaying in the UK.)

Do I own anything vaguely decent that I can wear in public that won’t touch my skin in a hugely painful manner? What outfit best accessorises with a stick? Am I going to play it safe in the flats or risk toppling in the heels? Why does my already fine hair have to be at the mercy of a hair thinning but (hopefully) disease modifying drug? Exactly how polite are people actually being when I can’t see well enough to apply my eyeliner but they don’t want to point out the wonky?

So, imaginary office colleague - you are the woman I used to be - and I am jealous of you.

I’m jealous of a life free from the big MS challenges and the small MS annoyances. I’m jealous of your spur-of-the-moment, no planning, boundless freedom.

Yes, I know you'll have your own problems that I know nothing about and I'm also very aware that comparison is the thief of joy.
So I try my very, very best not to be jealous - I don’t want to be, but sometimes I just am.

Admitting it seems utterly churlish. You are welcome to share your pictures and your holiday stories. You are unaware of my experience and that is not your fault.

So I'm glad you had a good holiday, I really am.
But just today I don’t think I can face looking at your photos. 
Especially if you’re wearing those shoes.

:: Green eyes by Coldplay 

*It was a messy night.

Cosmic dancer

Finding little ways to lift your spirits is essential to everyone’s well-being, not just those of us with an annoying illness.

My little lifter this week comes courtesy of my favourite poet Dylan Thomas – very timely as it is his day on Sunday. 

Since I was a teenager I have loved his astonishingly creative command of language, and while I have many, many favourites among his poems, I’m going with this one today.

Thank you Dylan.

And Death Shall Have No Dominion

And death shall have no dominion.

Dead men naked they shall be one

With the man in the wind and the west moon;

When their bones are picked clean and the clean bones gone,

They shall have stars at elbow and foot;

Though they go mad they shall be sane,

Though they sink through the sea they shall rise again;

Though lovers be lost love shall not;

And death shall have no dominion.

And death shall have no dominion.

Under the windings of the sea

They lying long shall not die windily;

Twisting on racks when sinews give way,

Strapped to a wheel, yet they shall not break;

Faith in their hands shall snap in two,

And the unicorn evils run them through;

Split all ends up they shan't crack;

And death shall have no dominion.

And death shall have no dominion.

No more may gulls cry at their ears

Or waves break loud on the seashores;

Where blew a flower may a flower no more

Lift its head to the blows of the rain;

Though they be mad and dead as nails,

Heads of the characters hammer through daisies;

Break in the sun till the sun breaks down

And death shall have no dominion.

:: Cosmic dancer by T-Rex