Dear Prudence

So I thought I’d write a little bit about fear this week.

I know, cheering.

It’s been sparked by last week’s bike purchase and the things I was thinking as I finally went out on said cycle. TWENTY FIVE years after I’d last sat on one.

We are lucky enough to live within easy reach of the countryside and there’s a handy track behind our little estate, just waiting for nervy cyclists wearing their brother’s old bike helmet.*

So filled with both trepidation and excitement – but mainly trepidation – I clambered aboard and pushed off.

And do you know what, it WAS wobbly and it WAS scary and I DID fall off (distracted by a passing cat) but it was a complete and absolute utter joy.

I was reminded of being a teenager and biking to school, skirt hoiked up, whizzing happily in the traffic. I was suddenly younger and free-er and far more smiley than I thought I would be.

It wasn’t without worry – my steering was questionable and the brakes took me by surprise a few times. Also the seat really, really needs more padding, but I was so proud of myself.

It made me realise that I can, for the time being at least, do the thing I wanted to do – not despite the fear, but alongside it.

And I think this is quite a key part of living with MS.

There will always be fear – fear of diagnosis, fear of the damage, fear of medication: the side effects and the efficacy rates, fear of what others think, fear of relapses, fear of progression, fear of the unknown and fear for the future.

And while I don’t advocate not talking about your fears or refusing to acknowledge that they are there, it cannot help to dwell too much upon them. 

What can help is to find a way to live with this ever present companion and somehow accept it into your life.

Yes fear has a voice, but it isn't the only voice. There are other far more interesting, positive and wise speakers out there that I would like to ride with.

:: Dear Prudence by Siouxsie and the Banshees 

*The helmet might be kindly described as vintage, although my daughter collapsed in fits of giggles when she saw it, so perhaps laughable is a more accurate term. It belonged to my younger brother who last wore it over his questionable mullet at the age of 14. When I mentioned to my dad that I’d bought a bike but failed to buy a helmet, he went immediately went to his magic hoarding shed and pulled the original box out with helmet intact like some kind of head protecting wizard.

New mistake

My balance is dismal. I have just bought a bike.
Pretty intrigued by how this is going to go.

:: New mistake by Jellyfish

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.

:: Mr E’s beautiful blues by Eels

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

.

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:

:: Take a chance by The Magic Numbers