|lifted from Dead Rob & His Dead Dog|
However, the other day was my annual(ish) MS MOT at the QMC. Aside from a general chat, the only thing I really wanted was to finally start the ball rolling with regards to the walking drug Fampyra which I've mentioned previously. Before starting the initial month's trial you need to have your walking speed assessed so I spoke to the MS nurses a couple of weeks ago to arrange to do this at my annual meeting - a full-service and new set of tyres to go with my MOT, if you will.
My main issue currently is to do with my walking - even with two sticks it's shocking. Apparently if Fampyra is going to work for you (which it does in a third of cases) it is obvious within two weeks of your free month's trial. Which is good, because after that you have to start paying for it.
Anyway, long story short, it wasn't possible to do this on the day which was mildly annoying. Previously, I would've really lost my rag about this kind of thing - like I said, this is the main thing which I'm struggling with at present, so we were all counting on it at least starting.
But today I decided to focus on the positives. Tecfidera is only messing with my bloods in a way which is medically 'tolerated'. More than this, my MS is stable - no new symptoms or significant progression at all. The neurologist noticed weakness in my left leg, so he is referring me for some more physio.
I saw the nurse who had previously said that I could bundle the Fampyra trial with my appointment. She apologised but has now started the ball rolling so I should be able to hopefully have my initial meeting for fampyra in a week or so.
This particular nurse also happened to be in the room when I'd been given the news that I needed to start doing intermittent self-catheterisation at the end of last year so she asked how that was going. I said that although it was undoubtedly a weird thing to find yourself doing, it's amazing how quickly you can adapt. She asked if I would be willing to talk to any other patients who might be struggling with having to start doing this themselves - in my current situation I obviously asked if there was any money in it. But it struck me that I'd be really happy to talk to someone about it, if it might be of help. At least, I don't think a demo is required…
All of this is way more positive than I would be traditionally (cf. blog title). So I don't have to be a miserable sod all the time.
This reminded me of a conversation I'd had at the weekend which illustrated that sometimes change isn't possible. My brother and I were reminiscing about how our cynical, know-it-all, anti-social music-snob personas were hard-wired over several hot summers. We suffered (and god alone knows how we suffered in the way that only adolescents can) with hay fever. So we would hole ourselves up in the dining room, which as well as having only north facing windows, also housed the family stereo. We would camp out in there, listening to and dissecting records (whilst sneezing) all summer long. It was great, but probably not great for our social skills. I know that it's not great to judge someone you've just met purely on the basis of their taste in music but it's still to this day incredibly hard to shake off.
I'm pleased that I'm a relative rarity amongst my male friends in that the music collection in our house is fully integrated. It helps that Mrs. D has what I consider to be good taste - but I think it's healthy to have (for example) Take That nestling up to Talking Heads. I think one of my friends makes his wife keep her CDs on a whole separate floor of their house! I'm not that bad.
However, if I come round your house and your music collection consists of a small rack of compilation CDs then I don't think we'll have much in common - sorry. I know it's wrong and I am trying to change but… baby-steps, y'know?
* FULL DISCLOSURE:
This is all well and good but last night I totally lost my shit about some gravy which I had spilt. The struggle continues...