You & Me Song

It was my birthday at the weekend, my 15th with MS.

I don't normally tend to acknowledge my MS alongside celebrations for my advancing years, but this year I did think about it.

Things have changed since my last birthday - the result of two relapses within seven months - and the difference between my 43rd birthday and 44th were clear to me.

I went out for dinner with friends the night before my big day. This proved more of an issue than it would have previously - I needed help fastening jewellery, I couldn't wear the higher heels, I struggled with the cutlery and I was limited to only ONE celebratory gin.

Given the evening out before, there was no huge party on my big day itself. I knew I'd have to spend the day itself quietly. So I did.

The day after my birthday my husband and I booked a day off work and went on a day trip to Stratford-upon-Avon, one of our favourite places.
Stratford was as delightful as ever; the cafes, the shops, the RSC and the swans.

But it's clear that I'm struggling now to do the walking along the river like I used to, to consider booking a play without worrying I'll be unwell or even manage to be much of a conversationalist by the end of the trip. Poor hubby.

I realise that progression is inevitable in MS - just as I'm brutally aware that comparison is the thief of joy.

It's very, very difficult with a progressive disease to not think back to how things were - before diagnosis, five years ago, last birthday. But it's not useful, not healthy and certainly not helpful.

So while I'm not sure how my 45th birthday will be, I can only keep the words of the bard himself in mind: "With mirth and laughter let old wrinkles come."

:: You & Me Song by The Wannadies

Mirrorball

When I was at university I worked behind a bar during the holidays to earn some extra funds.

One stint I did was in a working men's club which had a 'male only' room - so as you may imagine it was quite full of eyebrow-raising comments and exaggerated machismo.

And while I never actually had anyone say to me that old cliched classic 'My wife doesn't understand me' there were certainly variations on the theme.

Of course the vast majority were just trying to get away with chatting up a young barmaid - and therefore it was likely to be the case that their wives understood them all too well.

But that doesn't take away from the fact that maybe everyone does want someone to understand.
And this is very often the case with MS and all it's confusing, frustrating, frightening and invisible symptoms.

It's nigh-on impossible to explain some of the symptoms we experience and even harder to describe the impact they can have on almost every aspect of our lives.

So I was really touched by this film made for Shift MS, a social network for MSers, which so accurately captures the day-to-day life of many of us with a diagnosis.

Everything in it is overwhelmingly familiar to me - the visual colour loss checking, the finger-to-thumb testing, the full-body weakness, the struggles with concentration and the "I'm fine" lie.

It's a really wonderful depiction of a really horrible disease and reflects what we deal with astonishingly well. Have a look.

:: Mirrorball by Elbow

History repeating

I relapsed again just before Christmas. It's been a merry festive season.

This relapse is an almost carbon copy of the one I had earlier this year. It's mainly sensory, so: MS ruddy hug, scrambled sensation from neck down, tingly hands, numb bum, tiredness. So far, so familiar.

But while my feet escaped in May, they haven't this time and instead I genuinely feel like I'm walking on broken glass.

This relapse also appears to have taken the damp clothes sensation of earlier this year and upped it to a sandpaper scraping legs sensation.

It's all completely rubbish, obvs, and makes wearing clothes hugely unpleasant. But as I need to leave the house for work/school run purposes and have no desire to affront the general public, horrible feeling clothes it is.

As a slight plus though - my legs might feel they are being attacked by sandpaper, but they also can't feel the cold. A bonus for those non-work days when I am wearing shorts in the winter. Have learned to ignore the stares.

However, this two relapses in six months tally does only mean one thing - and that is a review of my current meds. As my neurologist depressingly puts it 'the DMT is not holding things at bay'.

So it's a case of gearing myself up to face the new meds choice. I am both immensely grateful that I have some options and hugely bewildered by what those options are.

I never feel qualified to decide what is the best thing to do. I really, really need some help, support, guidance and a me from the future telling me the most effective option.

As a minor aside, I also need to stop eating all the leftover Christmas chocolates.

Things I hate about MS relapses. A grumpy pie chart:

:: History repeating by Propellerheads feat: Miss Shirley Bassey

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