6. Gin, jabs and jelly-legs …

As I’ve already mentioned there isn’t a cure for MS. No magic pill or potion that will set my immune system back on the straight and narrow and remind it who the targets of it’s aggressions should be …

… Instead, there are drugs that can help reduce the number and severity of relapses and these are called Disease Modifying Drugs.

You remember we talked about the protective coating around the nerves – the myelin – that comes under attack from my misguided immune system which mistakes it for the bad guys … (See post 3 ‘The Science bit’) ….  Well Disease Modifying Drugs work by mimicking the myelin and building up the layers. In other words body armour for my nerves offering added protection for when my immune systems launches a kung fu style attack.

Whilst this all sounds very positive there is actually no clear research as to the long term benefits. Clinical trials show a reduction in relapses of around 33% compared to what would have been expected where there was no treatment.

Weighing it all up it seems to me that a 33% reduction is better than a 0% reduction and so I have decided to give the drugs a go. Given my MS is at an early stage, it seems like a good idea to start layering up my myelin with body armour whilst I have the chance, after all if I start now I might build up some light artillery and if I’m really lucky some weapons of mass destruction too.

This was all explained to me by my consultant and MS nurse at my last appointment. They were also of the view that it was a good idea. I agreed, expecting them to write me a prescription for a pill that I could collect at Boots on the way home. But there wasn’t a prescription, a pill or even a potion.

My MS nurse, who is lovely by the way, took me into another room to show me the requisite kit. A months supply of 30 syringes, ready filled with a drug called Copaxone.

Blimey. Injections. Everyday. Done by me. Yikes.

It was hot in the room. It was really hot and claustrophobic and the walls were closing in. I could see stars. I was sweaty. I was going to feint. My legs went like jelly. I had to hastily go outside where I gulped the fresh air and sipped a glass of water. I’d only just been shown the needles. Good start eh?!

It turned out that whilst I will have to do the injections everyday, by myself, I will be assisted by a plastic pen thing that I will load with the syringe, place onto my skin and ‘click’ the button whilst the pen does the actual injecting bit.

This freaked me out somewhat. In my job the people I meet who inject everyday do so for very different reasons, have track marks up their arms, ulcers from repeated use of injection sites and in extreme cases flesh-eating infections (that last one wasn’t a joke).

Apparently I can avoid all of the above by following the instructions on good injection procedure and technique and by rotating injection sites every day between a choice if eight.

It still feels me with dread. ‘I’m going to end up like a colander’ I told one friend. ‘That’s no good, the gin will leak out as soon as you have drunk it’ he replied.

I have since spoken about this with friends, and in fact a couple who have had to do something similar albeit for limited periods of time (and without the assistance of a pen thing I hasten to add) and they managed it.

I hope that once I get going it won’t be too bad, that I will get used to it, that it will become part of my daily routine like putting my face on and brushing my teeth.

At the moment I am waiting. Waiting for the call to be told that my jab-kit is on it’s way. Waiting to receive delivery of it at my flat. And waiting to make the call to my MS nurse to arrange a time for her to come round and teach me what to do …

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6 thoughts on “6. Gin, jabs and jelly-legs …

  1. I know that it is daunting but you I know that you will be well supported by your MS nurse.
    As one who injects weekly ( without the aid of a ‘pen’ – I must add ! ) it soon becomes just part of your routine. ‘ Pinch an inch ‘ my support nurse told me – ‘ What do I do with the other 6 ‘( inches ) I replied !
    Nicoletta,you haven’t got any spare inches to worry about! If the treatment can help at all in the long term – then it will be all worth it. Mum x

  2. Nicoletta I have a friend who has diabetes and has to inject himself before every meal this is in a pen, no-one ever sees him perform this act, we only know he has done it when he is returning the pen back to his wife to put in her hand bag! He says you just get use to it, and knows it is much better than the alternative and it is making his life bearable. You are very brave, when reading your blog I was feeling the hot sweats with you and bringing lots of tears to my eyes. All the best Audrey x x

  3. Hey we’ve spoke about this before…. it’ll become a routine as much as flicking your mascara out at the edges or gargling with bombay sapphire after brushing your teeth Xx

  4. Must be awful to have to face doing this, Nic – but hopefully worth it! You will cope with this, I’m sure – bet you a tea and nice cakes outing that you are a dab hand at this injecting lark within 3 months…..xx

  5. As I told you Nicoletta, I too have had to do injections, no not every day forever but every day for a while- and I didn’t have a pen. Rotating is good, I found the leg or tummy the easiest and really, no where near as terrifying as I imagined!! The odd bruise and a bit of a sting but really, nothing more, and something that becomes as routine as the teeth cleaning or the gin pouring!! You will be fine! I chuckled at the ‘pinch an inch’ comment, that’s what I was told- and good advice it was too! Do they do blinged up glamourous girl pens?!?!

  6. Some DMDs work by building up myelin, some by inhibiting your immune system so it doesn’t attack the nerves. Different drugs work in different people, but Copaxone is meant to be v good, and lacks the flu-like side effects that many others can cause.

    MS nurses are great, real experts in what it’s like living with MS and they give good advice on injection techniques etc. Have you been referred to a physio? If not might be worth asking your GP as they’ll be able to suggest exercises for helping to improve your mobility and balance. I saw an occupational therapist too but my symptoms were mostly loss of sensation/coordination in hands

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