Tsunami

I attend - intermittently - a couple of local support groups for people with MS.

They can be informative, helpful and reassuring. But they are not for everyone because they can also be rather overwhelming. 

An intense melting pot of different people, views and opinions from vaying points along the MS timeline - from the fear and optimism of the newly diagnosed to the varied experiences of the five-years-in to the cynical battle-scarred veteran.

Walking into a group soon after diagnosis can be very difficult: while coming to terms with your own news you are faced with people you don't know at various stages of disability.

Of course, as times goes on, you learn that their disability will not necessarily be your disability and their experience is unlikely to exactly mirror yours, but that first meeting can have a massive impact.

Fifteen years into this palava, I think I sometimes forget how I felt at diagnosis. The symptoms are so familiar now, drug names trip surprisingly easily off the tongue and the fear has dulled to a constant low level rather than the insurmountable mountain it was at the start.

So it was a wake-up call on Monday night when a relatively newly diagnosed person joined our group. They were undoubtedly still reeling from the news.

There were welcoming chats and commiserations from around the table and there was plenty of sharing of diagnosis stories, meds experience, MS tips and promises of helpful support. And it was all massively well-intended. 

But when I spoke later to our newbie, it was to hear that any medical appointments they'd been to had left them feeling that they were at the mercy of an information tsunami, overpowered by leaflets and facts and figures.

And, after a bit of reflection, it struck me that it was entirely possible that they might have left the support group feeling exactly the same.

As members of the club that no one wants to join, we're so desperate to support and help anyone who has had the misfortune of swelling our ranks that it can sometimes feel as immense and suffocating as the diagnosis itself.

Maybe some people don't want to hear of yet another helpful leaflet or super-dooper gadget or harrowing lumbar puncture experience. Maybe they're at a point where they've had to process too much.

Support groups can be wonderful - but perhaps they need to come with a warning flag system.

Some people may feel ready to wade into the waves of support. Others might just need to know they're not going to drown.

:: Tsunami by Manic Street Preachers

You really got me

People deal with a diagnosis of MS in very different ways.

None of those ways are right or wrong, they are simply the way you choose (or are able) to deal with this breezeblock that's been dumped unceremoniously in your life.

Personally, I am an information junkie and I read as much as was available and asked as many questions as I could think of. This is possibly due to a) my previous life as a journalist and/or b) my inbuilt overwhelming nosiness.

During my reading and questioning, I came across a phrase which was repeated over and over again on forums, inspirational quote websites or in interviews. It seemed the unofficial slogan of the community.

If you have MS, I'm pretty sure you've seen it too, it's the catchy: “I have MS but MS doesn't have me!”

And yes! I thought, when I first saw it, that sounds like an ideal mantra to have, maybe I'll even have it on a t-shirt! 

It seemed positive and hopeful and a little bit fighty and I liked that. And while I was still fortunate enough to be pretty quiet on the MS front five years after diagnosis, it remained a slightly smug motto.

But then, as the relapses became more severe, took longer to recover from and left more damage, I had weeks when I was certainly more in this camp:

Sometimes, there is no point in denying that MS does have me. It had me when it took my sight, it had me when it stopped my speech and it has me when it forces me to review and adjust any number of my personal spheres.

But to live with MS means to find your own balance between the two extremes: the optimism and the despair, the denial and the knowledge, the fight and the fear.

Fifteen years since I found the first MS mantra, I still try to retain the positivity of it - but am now far more likely to temper it with the reality of the lived experience. 

:: You really got me by The Kinks

My silver lining

Bit of a bold statement, but here we go: until I had MS, I don't think I knew how to be truly grateful.

I didn't know how to appreciate that I was feeling well.
I didn't know how to really notice what was around me.
I didn't know how to stop. And be happy just to be.

And while all of that sounds insufferably navel-gazey, it is true.

MS is generally a monumental shitshow, but if I search hard enough, there are some silver linings. And those silver lining tell me that sometimes:

• I'm allowed to stop ricocheting from pillar to post
• I'm allowed to lower my guard
• I'm allowed to sit and watch the world pass me by

I haven't let go of all the fear, I haven't stopped worrying, I won't escape an irrational sense of guilt. But I don't have to feel like that all the time.

And when I don't, I am allowed to appreciate it.

:: My silver lining by First Aid Kit

'74-'75

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 ten-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 more than 230 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.

Researchers have then calculated that genes contribute just over half (54%) of the risk factors. The remainder would probably be due to other environmental factors such as where you live, Vitamin D levels, infections or smoking. 

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 siblings - 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 230 genes which in turn was dependent on two different percentages of two different types of risk factors. 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.

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

:: Song '74-'75 by The Connells