Sympathy for the devil

Way back when I was first diagnosed - almost 16 years ago now - I read a lot about MS research and break-throughs and promising new treatments.

For a newbie, it was all a bit overwhelming and I'd struggle to tell you now which of the things I read about have come to pass, which ran out of funding and which have been consigned to the MS dustbin.

But today being the day it is (Halloween, not potentially-but-actually-not-really-Brexit-Day) I have been thinking about one of those early bits of reading that has stuck in my mind.

This was the strangely charming 2006 study which identified a pair of "angel and devil" genes which fight to make an MS patient healthy or ill.

The research explained that one of the genes thought to be responsible for MS is one called DR2b.
And in a plot twist worthy of the best Hammer horrors (or American soap operas), scientists discovered that this gene is the "evil twin" in a pair of DR2 genes.

Evil, moustache-twirling DR2b exacerbates MS symptoms, but its partner gene - DR2a - heroically tries to dampen them down and counteract DR2b's effects.

At the time, the scientists leading the research stated: "The DR2b gene clearly tells the immune system to go hard into battle against the body's own tissue, so it starts to work in a way that actually damages the person.

"For this reason, natural selection has eliminated the gene on its own, but allowed it to be inherited only when it is accompanied by another gene (DR2a) which tempers its effect."

I have no idea whether research into the angel and devil genes is still going on. The MS Society is funding research into the HLA-DR gene and Vitamin D, but I'm unsure if this is the same gene, or simply a similarly named one.

But I think the study has stuck with me for all this time because of the image it creates. The endless epic battles between a malevolent horned devil and its benevolent haloed companion represent the to-ing and fro-ing of life with MS so well.

And while it's obviously not pleasant to know that I may have a devil lurking within, it's also rather lovely to believe there's an angel looking after me too.

:: Sympathy for the devil by the Rolling Stones

Unbearable

My pie chart of things about MS that without MS have said to me.
Proportioned by irritation levels.

:: Unbearable by The Wonder Stuff

Send in the clowns

((Just been to see Joker - an inventive origin story that references PBA. Made me think of this post.))

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 experience more art? Wait for your next bout of optic neuritis and see the world like a Monet painting.

But one of the lesser known entertaining* features is that of the pseudobulbar affect or PBA.

This impressively-monikered symptom is also charmingly known as emotional incontinence and can take the form of involuntary crying, wild episodes of laughing or other highly emotional displays.

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

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.

This particularly messy symptom of MS is caused by lesions occurring in the areas of the brain that govern emotional pathways.

It can be upsetting, frustrating and embarrassing and at present is treated through the use of off-label antidepressants.

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 blubbing 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.

:: Send in the clowns by Judy Collins

* by which I mean distressing

Sit down

I am currently self-employed and am working for two different organisations - a local authority and a national charity.

The fact that I am lucky enough to still able to work more than 15 years after my MS diagnosis is not lost on me - many of us can't.

I can't pretend it's easy and I can't pretend it doesn't wear me out, but at the moment it is do-able.

I am also lucky in that - to some extent - I am able to pick and choose my own hours and can swap between working in the office and working from home.

But every now and again I need to travel to London for meetings or events for the charity I work for. I've been quite a few times this year and mostly I find it an enjoyable experience.

I live in a small town and the London train leaves us at 7.30am. I generally get back home at 6.30pm. Sometimes I have to change trains between stations (I did last week, engines failed), sometimes not.

The charity I work for is situated three tube lines from the station I arrive at. It takes me a good half hour to get across London.

Last week my meeting took me a total of nine trains to get to London, across London and back from London.

It took endless up and downs of escalators, speed walking to make the meeting on time and a bit of ungainly running to get my pre-booked train back.

Not to mention concentrating and contributing in a meeting with a large number of people I'd not met before. Cognitive panic, obviously.

I find the whole experience of going to London both utterly exhausting and strangely exhilarating.

It makes me proud that I can still do it - but saddened by that fact that I have to then spend the next few days struggling with the impact.

This recent trip has also made me seriously consider getting a Transport for London 'please offer me a seat' badge for the tube because it's very rare that you get a situation like this:

:: Sit down by James

My brave face

Up at a hideous time this morning for a large work meeting in London. Lots of expectations, website data, project milestones and presentations to a number of new people.
This is all a bit unfortunate as I am feeling particularly rough.

Clearly a situation that calls for the careful application of camouflage make-up.
(And maybe a slice of pie.)

:: My brave face by Paul McCartney