A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday, 19 July 2017

Wednesday, 12 July 2017

Mr E's beautiful blues


A friend of mine has recently had to make a difficult decision.
We seem to be at the age now where our lives are full of them. Or maybe our lives have always been full of them – after all, who’s to say that the choice between the swings or the slide wasn’t just as difficult as the choice between renting or buying, children or career, staying or going – it’s just different frames of reference.
But during their decision-making process I received a text saying they’d felt resigned to the situation they had chosen - and it made me wonder (over-think) about the word they’d used.
People quite often say they’re resigned to something – fate, situations, having to take part in an office away day - I’m pretty sure I’ve said it myself. But exactly how resigned am I to having MS? And if I’m not resigned, what else might I be?
Resignation, based on my very limited pop-psychology reading, implies giving up because you've decided that there is nothing you can do about your situation.
It’s seen as a passive state of being with underlying sadness, disappointment and fear of the future.
A horrible way to feel. But not wholly unfamiliar.
Further reading tells me that the flipside of resignation is acceptance – not that you’re happy with what’s happened, not that you wanted it to happen, not that you don’t wish it hadn’t happened, but simply that you're able to acknowledge that it has happened. It is what it is.
Acceptance isn't easy. It asks you to let go of how you think things should be or how you wish they were, and to work wisely and effectively with your reality, especially when you don't like it.
The suggestion being that once you give up the resistance and denial, you can take the energy you were spending on struggling and use it to decide how to respond or what to do next. In other words, acceptance opens up choice.
Now I didn’t have a choice in developing MS, it careered rudely into my life and there was nothing I could do about it.
The only choice I had – and it’s turned out to be a huge one – was the way in which I chose and keep choosing to deal with it within the realistic parameters of what this disease does to you.
So I chose to tell people – my friends, my work, random strangers, I chose to have a child knowing it wouldn’t be easy, I chose not to - and then to - take medication, I chose to laugh at myself, be honest, write this blog and I constantly choose to push my luck.
But despite consciously making these choices, I’m still not sure how much of my MS I am resigned to and how much of it I accept.
I’m not even sure if I’m accepting of my resignation to it, or if I’m resigned to my acceptance of it.
Or, on the evidence of that last sentence, if I’ve suddenly turned into Tweedledum and Tweedledee.
I'm not sure I know what I think. Perhaps it’s time for a bit of honest reflection in the looking glass.


*For what it’s worth, I think my friend has made the right decision and I really hope they find acceptance. They deserve it.








































































































































































































































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Wednesday, 5 July 2017

Take a chance

I’m starting with an apology and picture of a cute kitten to make things better:

If you’re still here, then I’m still sorry because for those of you who read last week’s maths-based effort and were hoping for something less numbery this week, I’m afraid this one’s back to the figures.

I know, it’s like checking your school timetable and discovering that yes, it is in fact double maths. And not just double maths, but double maths in the insanely hot temporary classrooms being taught by that supply teacher with the breath.

Oh, and there's a bit of science here too.

But it’s had to be this way because I’ve just got the results of a raft of blood tests and I need to get them down in words so I can start to deal with the numbers.

Blood tests tend to be part and parcel of MS and depending on the disease modifying drug you’re on, you may be required to undergo regular monitoring.

This will indicate whether you are at risk of: infections, thyroid damage, liver, kidney and blood problems, heart irregularities, eye damage or this nasty little bastard.

I’m six months into Tecfidera now and aside from a few flushes and a constant runny nose (support forums tell me this is Tec drip) appear to have been okay.

But this is just surface monitoring, the real test is in the thing you can’t see – the numbers found in the red stuff swooshing its way around my veins.

The key thing to look out for with Tec is lymphocyte levels. These are *science alert* a subtype of white blood cell which contain T cells and B cells. In MS, the activation of some of these cells can cause an abnormal immune response against the central nervous system resulting in demyelination - this is the destruction of myelin (the fatty sheath which surrounds and insulates nerve fibres) which causes the symptoms of MS.

Tecfidera is thought to work by dampening down the actions of the T and B cells, therefore inhibiting the immune system and reducing the possibility of relapses.

But the difficulty is, dampen down lymphocytes and the immune system too much and you leave yourself open to the risk of developing the aforementioned nasty little bastard.

Lymphocytes should be anywhere between 1 and 3. Mine started low, at 1.2, and since being on Tec they have gradually dropped. My latest results show them at 0.74, if they drop to 0.5 I will have to stop because 0.5 heralds the start of the danger zone and the gateway to the risk of developing the NLB.

On the other hand, as a disease modifier, Tecfidera’s efficacy is currently rated as good – with relapses dropping by an average of 53% and disability progression slowed down by 38%  
(Note the ‘on average’ – my experience on Tec could be far better, or far worse, then these numbers.)

So what I need to work out is how to reconcile the risk of my dropping lymphocyte levels versus the risk of relapse – while being aware that the average efficacy may not apply to me anyway. Arrrggh.

It really just feels like I’m making quite a leap of faith into a swirling vortex of numbers.

A thought which can be best summed up by this:


Wednesday, 28 June 2017

'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 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.


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.

Wednesday, 21 June 2017

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.


*All of these have been said to me.



Wednesday, 14 June 2017

The joker

Multiple sclerosis brings with it a whole host of entertaining* features.

Not enough danger in your life? Go out in your highest heels with your worst balance.

Want to feel like you’re studying Latin? Read Pot Noodle preparation instructions when you’re fatigued.

Need to impress by speaking a foreign language? Wait until you’ve concentrated hard then engage someone in a chat.

But one of the most entertaining* features is that of the pseudobulbar affect (PBA.)

This impressively-monikered symptom is also charmingly known as emotional incontinence.

In MS, it’s caused by lesions occurring in the areas of the brain that govern emotional pathways.

And what that messy incontinence means in practice is involuntary crying, wild episodes of laughing or other emotional displays.

We might find ourselves crying at something only moderately sad, laughing uncontrollably at something only vaguely amusing and in both cases being unable to stop ourselves for several minutes.

Episodes may also be mood-incongruent: we might laugh uncontrollably when angry or frustrated, for example.

And most entertainingly*, sometimes the episodes may switch between emotional states, resulting in us crying uncontrollably when having sex.

Particularly tricky to explain away the first time you sleep with a new partner.

I don’t think I’ve experienced PBA yet. But to be honest, it’s hard to tell.

I’ve always been a bit emotional, so weeping buckets at any number of those ‘help the children/animals/earthworms’ adverts is pretty much par-for-the-course for me.

Equally, laughing inappropriately when trying to be stern with my daughter or explain a serious situation is fairly standard behaviour and one that was there before my diagnosis.

Added to which, MS can be a pretty depressing and/or desperately hysterical condition on its own, never mind any sneaky lesions butting in, so how do I know?

It’s a difficult one.

I guess the only way I’m going to be able to tell for sure is if I suddenly start bursting into gales of uncontrollable mirth watching Mrs Brown's Boys.

Then I’ll know it’s definitely time for another MRI.




*by which I mean distressing

Wednesday, 7 June 2017

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.