27. Daily punctuation.

There are some conditions that make themselves known on a day to day basis. Their symptoms are never far away, their effects always hanging around in the background, like a lingering smell that no amount of fabreze can shift.

Well MS isn’t really like that, or at least it isn’t really like that in my case. I work full time as normal. I exercise, socialise and do all the things I did before with very little adjustment. Ok, as I’ve already explained, I have to be careful to manage my tiredness and can’t quite burn the candle from both ends and the middle anymore. I get pins and needles and numbness, mainly in my hands and feet, but again this is hardly something to be complained about in the grand scheme of things and certainly doesn’t stop me doing my thing in court, the gym or the nearest gin palace…

So, in fact, I could quite easily forget I had it. Quite easily forget the shenanigans going on in my head after all, it’s been pretty quiet recently in the kung-fu-kick-ass world in which my Charlie’s Angels immune system operates. It seems Lucy Lui and her pals have hung up their cat suits and taken a break from attacking my nervous system in favour of a nice cup of Earl Grey and a twin set and pearls (less chaffing than the Lycra and a little more forgiving I find …)

But of course whilst things are all quiet on the MS front, everyday is still punctuated with a reminder that this may not continue to be the case. Everyday when I stick a needle into my wobbly bits and do my Copaxone injection. Because that’s not what ‘normal’ people do is it? It’s a sign that there is something wrong. People don’t inject themselves for any other reason. Even those who inject themselves to get high do so not because they are happy and just want to be insanely happier but because of a need to mask and distort something that is very wrong or upsetting and, from what I have seen, ends in very little else than misery, pain, and numerous court appearances.

I write this from the (dis)comfort of a Ryanair flight, travelling home from a week in the sun…. A week where the worries of work, life and even the autumnal weather were left firmly behind in Manchester, albeit only for 7 days until I return and collect them all again.
But my MS worries were not left behind in Manchester, under the stairs along with all the other gubbins. No, because my MS worries have to travel with me. That daily punctuation I described happens wherever I am. It is an adventurous globetrotter, fearless and relentless in my pursuit. It is of course … The bingo dabber.

As I explained earlier this year the bingo dabber does not travel alone. She likes to bring some friends along for the ride, like bingo dabber groupies. This time there were 7 of them. 7 pre-filled Copaxone ‘shots’ as my twitter friends in the States like to call them. And if that were not bad enough the groupies are of a rather delicate disposition and so are very particular about how they travel, demanding a cool bag and ice packs and necessitate a VIP pass onto the plane signed by my MS nurse (although for the second time now no one at Manchester International Airport batted so much as an eyelid as I passed through security with an arsenal of sharps and were more concerned as to whether my lipgloss was in a sandwich bag for which they charged me £1).

So whilst most people go on holiday to escape their biggest worry and get a bit of rest bite, I have to take mine with me.

To be perfectly honest I’ve seriously considered giving up the jabs. Unlike the consideration I gave to giving up gin and shopping in Ted Baker, the jabs are one thing I think I could give up and actually stick to.

When I was diagnosed in December 2011 I was given two options by my Consultant … To start the medication now in the hope of obtaining maximum benefit and protection (because that’s what the drugs are – prevention rather than cure) or waiting and doing nothing and basically seeing what happens.

I remember, at the time, he told me that some people find that the injections serve as a daily reminder of something that they didn’t want to be reminded of and so they took the decision not to bother. I remember, at the time, thinking ‘Why, they must be crazy! How could I possibly forget that I have an incurable neurological condition?! I don’t need to stick a needle in my thigh everyday to remember, like a note on a cork memo board where the board bit is my leg and the cork bit is my flesh! These people must be mad!’ I thought, at the time. And so opted for the injections almost without question.

But now, almost a year on, I completely understand what he meant.

The problem now it that I am on the roundabout and don’t think I can jump off….

I could, perhaps, forget I have MS altogether and be a whole lot cheerier because basically there is very little wrong with me. (And in fact, as I have also already mentioned this could be as bad as things get for me. Or they could get a whole lot worse such is the unpredictability of it all) Only I cannot forget because every morning I have to inject myself. But I inject myself because it seemingly ‘protects’ me from having anything wrong with me. The problem is I don’t know whether it’s the injections that are keeping me well or whether I would be well anyway…. Which is where the roundabout comes in.

Going round and round is making me pretty dizzy. But I’m not brave, or perhaps stupid, enough to jump off.


26. Tired of fatigue.

The words ‘I’m really tired’ are often met with the response ‘Me too, I couldn’t sleep last night’ or ‘Me too, I had a really busy weekend.’

Saying how tired I am sounds really pathetic, like I just need an early night and to pull myself together. But the tiredness I have experienced with MS is like no tiredness I have ever experienced, ever before.

You know when you have flu and your arms and legs ache and feel so heavy that it’s like you’re dragging around lead weights with you … well MS tiredness is a lot like that. Like trudging through mud or walking through the water in a swimming pool. Everything requires so much more effort than it ought to.

It isn’t a sleepy head tiredness but a physical one that seeps up my limbs like water into a sponge.

The problem is, I don’t really have time to be tired. My job isn’t the sort of job that makes allowances when you’re not on top form – it carries on regardless, like a tank over rough ground, crushing everything in it’s path. And if you can’t keep one step ahead of the tank then you get squished.

Plus, there’s a lot more to me than my job. I’m always out and about doing something. I’m a bit of a party girl to be honest, after all it would be such a shame to let all those shoes go to waste … I’m lucky and have lots of lovely friends that I spend time with. I like to frequent many of Manchester’s finest restaurants and bars 😉 – in fact one of my friends refers to me as a ‘Manchester tour guide’. I enjoy fundraising and working with the Birdhouse Fund – a Manchester women’s charity. I go to the gym. I’ve just started circuit training. I go running. I like doing courses and learning new (non law!) things. Occasionally I even try to fit in a bit of time with Tom!

I can easily fill every evening and weekend …. but then again I love it that way. I can’t sit still.

And so I seem to have a constant battle with myself when it is suggested that I ‘rest’ or ‘take it easy’. That seems like a sign of weakness to me … an admission of defeat. I like to make the most of things and the uncertain, unpredictable nature of MS has made me try to do this even more. And if I am one thing, it’s stubbon. I don’t give up easily. And I certainly won’t be giving in to MS easily.

Problem is, I am tired of being tired.

That said, I’m not adverse to a little ‘tweak’ here and there. After all the odd early night and pampering session never hurt anyone.

And this is where the acupuncture comes in … I don’t know how, I don’t know why. But I am sure it’s working. Working at giving me more energy and making me feel less tired. I have now had four sessions over four weeks and I feel better than I have done in quite some time which can only be a good thing.

And we know what more energy means … fitting more in 🙂