Wednesday 23 July 2014

au suivant, au suivant....

I've been doing my injections now for a little over five years.  That's more than 250 times that I have gone through the weekly ritual of mixing the Avonex in its little vial with the distilled water in the syringe, screwed on the huge scary needle and shoved the whole thing into the thigh muscle of one of my legs.

I've never missed a week.  Occasionally, I will forget one evening, but I have so far always remembered the next day.  Mostly. I inject myself on a Tuesday night.  I'm not supposed to vary that day by more than a day or so either side, so unless I'm travelling or something like that, I'll just try to stick to a Tuesday because it just seems easier not to keep shifting it about.  There's no real logic behind picking that day, only that it's the day I had my appointment at the hospital where the MS nurse showed me how to do it and off I went.

It's not that difficult and I've injected myself across the world, the most memorable time probably being sat outside a tent in Etosha National Park in Namibia, the same day that we had been almost supernaturally lucky and seen an astonishing array of animals up-close, including a leopard from about 2m.

I think it's fair to say that I've got used to the whole process.  I'm supposed to alternate legs every week, and in the beginning I used to take each box of four syringes and write "1 - L", "2 - R", "3 - L", "4 - R" on the packs so I would always remember.  I don't bother any more.  Now I just try and work out which leg I used last week by the bruising the injection often leaves.  I suppose I have to plan a bit more now too: I have to remember to carry my doctor's letter if I'm taking syringes onto a plane (cabin baggage only as the water in the syringe might freeze in the hold), I have to arrange to take delivery of the drugs (which are quite valuable and get couriered to me), and I have to make sure I have enough.  The NHS has been amazing.  Each jab is worth several hundred quid, and they usually give them to me in boxes of four, but when we were away in 2010, they actually gave me about four months supply in advance to take to the southern hemisphere.... a little bag that was probably worth more than everything else we had between us in our campervan.

By all accounts, I'm one of the lucky ones and I tolerate the injection well.  Lots of people experience side-effects that are so bad that they stop taking the drug altogether as they would rather face the possible consequences of their MS.  For me, I take some paracetamol, some ibuprofen and inject myself at night so I can sleep through the worst.  Occasionally I get a headache, and the next day I often wake up feeling as though someone is pushing me back down into the mattress, but apart from that, I just get on with things.  It's a part of my normal routine.  It's no big deal.

Except that, really it is.

I start thinking about my next injection at some point around Sunday evening.  I don't really like injecting myself very much, and the thought of doing it starts to creep into my thoughts several days before the actual injection.  I don't like to have too much planned on the night of an injection, and I often find exercise a bit of a struggle the day after because I simply don't have the energy.  In fact, I can  often feel the damage where the needle has been, deep in my thigh muscle, with every step I take as I go out running over the next week, and the following week the pain is in the other leg.  From start to finish, the injection process only takes me a couple of minutes, but there's always a slight hesitation as I hold the needle, poised, above my leg.  I know from experience that it's best to give it a bit of a run-up so that it goes into your muscle before you've really had a chance to think about it, but my brain always applies the brakes and I end up pushing it in slowly.  Sometimes, I hit a nerve and jerk straight out, having to start the whole process again; sometimes I'll scratch a vein and start to bleed; sometimes it's weirdly hard to push the plunger down, as if something is blocking the end of the needle.

Then it's done.  I mop up, put the syringe into a sharps bin and move on with my life.  In my head, the countdown to the next one has already begun.

Actually, is this just a middle class problem?  I have MS, but I'm relatively symptom free, I get supplied with an expensive drug free of charge and have it couriered to me, I tolerate it well and have relatively few side-effects.  What the hell have I got to be complaining about?

1 comment:

  1. interesting - i don't think it's necessarily a middle-class thing, maybe more of a "first-world problem" (in the twitter hashtag sense).

    but i do know what you mean - my injections are three times a week, subcutaneous, and i have 8 sites which i rotate around. like you, i tolerate my DMT well - similar site reactions and flu-like symptoms but that's it. and everything seems to be okay, MS-wise. [touches wood furiously]

    but as my boss likes to say (really), my next relapse is "in the post", it's just a matter of when it arrives.

    and it is a bit weird that my thrice-weekly dance will continue into theforseeable future - is this it?