You'll remember that I sent an email out to a few of my colleagues earlier in the week? There I was, pondering whether or not I should mention that I had multiple sclerosis in the hope of raising a bit more cash for the MS Society (and perhaps to raise some wider awareness too), when suddenly things are taken out of my hands.
I've been in a workshop for most of the last couple of days, and I haven't really had much of a chance to catch up with my email. When I did have a look this evening, I saw that the following had been published in one of our department-wide communications:
"Show support for Tim: We hope you'll support Tim who is taking part in the Robin Hood Half Marathon to raise money for the MS Society. Tim, who is battling the disease, is taking part in the run on Sunday, September 11 along with his wife, [C.] and friend [LB]. Tim took part in the event in 2009 and managed to raise over £3,000. To help Tim raise money this year, visit his fundraising site by clicking HERE."
When I decided that I would mention that I had MS in that email, I was careful how I worded it: "As many of you know, I was diagnosed with MS in 2009 after suffering symptoms since 2005. I’m lucky and have been relatively unaffected so far, but it’s one of those weasel conditions that can creep up on you when you least expect it… "
I appreciate that someone is trying to spread the word and to help me raise a bit more money, but I'm not at all sure about the phrase "battling the disease". Perhaps it's just me, but I reckon that phrase has connotations of sickly people with no hair fighting the probably hopeless fight against an incurable illness. That's not what I want people to think about MS at all. I'm not even sure that MS is a disease, for starters. I suppose that technically, it probably is... but I still prefer to think of it as a condition. Perhaps it's only semantics, but I don't think of myself as a helpless victim, and I certainly don't want anyone else to think that of me either. Worse may be to come too: apparently they're making a poster (complete with picture) to put up around the department too.... if they do, I at least hope it has an inspiring motivational quote.
I got some post from the MS clinic yesterday. Exciting news! I've been invited to an open demo of the new Avonex auto-injector.
Now, I personally don't have a huge problem sticking a big needle into the muscle of my thigh and pressing a plunger, but I can well understand that some people struggle with the very thought of it. The idea of the auto-injector is to hide the needle and to take away the whole messy business of plunging it into your leg and injecting the drug. What you do is you press this thing onto your leg, push the button on the top, and it does the whole thing for you. Much cleaner and easier for most people, I'm sure.
I'll go and have a look, but if the prefilled syringe needs to be kept in the fridge, then I probably won't bother. I have the non-bioset version of the drug, and before injecting I need to mix it up with the distilled water in the syringe. A bit of a hassle, but it means that I don't have to keep everything in the fridge, which gives me loads more flexibility around travelling and suchlike. The auto-injector might be easier, but I don't want to lose that flexibility.
Of course, the other thing about the auto-injector -- and I find this mildly depressing -- is that it has been designed to be as easy to use as possible for people who have trouble using their hands and find syringes cumbersome. I realise that this is one of the possible outcomes of MS, and I have some loss of sensitivity in my hands myself, but it's not something that I care to dwell on.
Off to my annual visit to see the neurologist at the MS Clinic tomorrow. Again, the visit itself usually isn't any problem as my MS doesn't really affect me all that much and is considered to be "well managed" (meaning that I take the drugs regularly and without any problems and remember to have my six monthly blood tests).... but sitting in the waiting room with other people with MS in various stages of advancement can, with the best will in the world, be more than a little depressing.
I just have to keep reminding myself that no one experiences MS in the same way as anyone else; their path is not neccessarily my path.
And you know what? If it is, I'll deal with it.
When plans change
1 week ago