Thursday, 9 March 2017

i can change?

lifted from Dead Rob & His Dead Dog
It has long been a bone of my wife's contention that I seem to be much more rational, level-headed and stoical in my writing on here - and even more so on MS.net - than I am in real life. It won't come as a surprise to anyone who knows me that I can be a grumpy so and so. 

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...

5 comments:

Ms. CrankyPants said...

Hellooooooooo! I've been following your blog and have wanted to chime in w/ witty or sympathetic comments, as appropriate; clearly, I have been too lazy. I have an MS-related, almost-plausible excuse for my supreme lack of attention to all things BLOG. Fear not, friend: I WILL BE BACK.

Anyway, I could not let slip one thing you mentioned -- *I* have an embarrassingly large collection of compilation CDs, many from the 80s no less. (Remember our discussion about the subtleties of "I Can't Go for That (No Can Do)" a while ago??) So put that in your pipe and smoke it! I'm happy to prove that at least one of your e-friends listens to widely (and UNJUSTLY) disparaged music.

All the best,
Ms. C-P

stevedomino said...

Interestingly I was at a school fundraising quiz last night (rock and - indeed - roll) and I nearly got into a fight with a teammate over a "spot the intros" round. They wanted to say "Part-time Lover", I knew it was "Maneater". It got quite heated but I prevailed and we won the quiz. Worryingly, the teachers from the school came fourth.

Ah my dear crankiest of friends. I miss you and I was - genuinely - worrying about you the other day. Which at least led me to watch THIS MAGNIFICENT THING again.

I have no problem with compilations per se, it's just - think of all the lesser-heard Air Supply deep cuts you could be exploring?

Don't go changing (I have a soft spot for the Joel) and don't stay away too long!

X

Ms. CrankyPants said...

Pshhhhh. AMATEURS! Confusing Maneater with Part-Time Lover...say it isn't so! BTW the H&O compilation is one of my favorites.

At your suggestion, I've spent hours immersed in Air Supply's deep cuts, Let me just say: they are superlative. Hard to believe, but they blow away the aptly described MAGNIFICENT Even the Nights Are Better (thanks for the link and the glorious warbling that's been in my head for days now).

No danger of me changing/evolving. And I have some blogging material percolating, so I'll be back!

Ms. C-P

swisslet said...

Hm. My record collection is not integrated with my wife's (much of which I gave her anyway), but we have a fully integrated iTunes, which must amount to the same thing, right? Streaming services probably avoid this issue entirely, but with 40m songs at my disposal, the first thing I asked Alexa to play from my new Amazon Music Unlimited account was "Bump'N'Grind", so....

My mind's telling me no, but my body... MY BODY....!

(I'm also far less stoical than my blog would have you believe... it must be a thing. Not least a reaction to poor, pitiful me MS blogs)

Keep on keepin' on.

T

stevedomino said...

I have no problem with streaming services and I buy a fair few downloads, use Spotify, etc. etc. I do have a definite preference for owning STUFF, however. Not big or clever but this is where we are.

I don't see nothing wrong... etc.

Remember when Trapped in the Closet was a THING? That was great wasn't it?