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.

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2 thoughts on “27. Daily punctuation.

  1. Nicoletta, I can completely relate to your thoughts regarding your daily ‘chore’ because that is exactly how I feel about my drug – but what you have to remember and this was told to me by my rheumatology nurse, is that you forget how it was before ! An example is last year when I did not take my drug Methotexate ( under medical advice I must add ! ) for three weeks to enable my wounds to heal ( my drug is also a disease modifying drug and affects my immune system – hence the wounds not healing in the first place ! ) the wounds did heal but my ‘old’ arthritis came back with a vengance ! meaning that I hobbled around in pain rather than just hobbling around ! and the unbearable stiffness of the joints.
    Then I remembered ! My drug is working – like yours – without you really noticing – it’s only when you stop taking it – you notice ! And then once you start ‘using’ again it is like starting all over again ! and in my case, the hair loss etc the usual side effects of Methotexate. Then after about 3 weeks began to feel my normal self again – you see it’s working but without us realising it !
    Hope this helps xx Mum xx

  2. Oh Nicoletta,
    As a fellow MSer I feel like I’ve been there. As amazingly positive you are, you’re going to be questioning if what your doing is right. As we are all different in this, it’s difficult to say what the right to do is.
    I was diagnosed 8 years ago and have been on Copaxone, Rebif and have now just started Tysabri.
    I was taken off Rebif last Christmas because my body was rejecting it (how ironic, my body doesn’t work and seemingly doesn’t like the medication to help it work!!).
    The options I was given by my neurologist didn’t seem like options so I decided to go down ‘the natural route’. Oh dear, that wasn’t one of my better moves!! I’ve had 3 relapses from January to July this year hence, I’ve been put on Tysabri which I’m very happy about.
    I feel like youve dealt with a lot in a very short space of time as you’ve not been diagnosed very long at all.
    Thank you so much for writing this blog, I get so excited when you’ve posted a new post that I do a little dance in my seat!!!
    Take care and keep up with the shopping and the frequenting of gin palaces xxxx

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