Friday 18 December 2015

blood and fire

Earlier this week I had my 3-month blood test to ensure that Tecfidera wasn't completely messing me up. It has been a breeze so far, and so much more non-intrusive than the injections I was on.

I've not really suffered any major side-effects at all - the closest I've come was two separate occasions when I've got a bit cocky and had taken the tablet after a light breakfast, which led to something very similar to a panic attack.

The solution? The first time I ate a bag of nuts, the second time I ate a Babybel [other conveniently wax-encased cheese snack products are - presumably - available]. In both cases the symptoms passed almost immediately.

So I was pretty much sleep-walking into my blood test. Also we've been caught up in School Nativity shows and all the other parts of the the incoming festive behemoth.

Which is why it came a bit of a shock when a friend of mine who started Tecfidera on the same day as me was told that her test had showed that her Liver function was elevated. She's been asked to go in for another test and if it's still elevated she'll have to look at other treatment options.

Obviously this sent me into a bit of a panic - which was utterly pointless. I mean, what could I do to reverse it anyway?

Anyway, long story short: when they called with my results, my Liver and Kidneys are doing fine on Tec - YAY.

My white blood cell count was slightly low, but this is apparently 'normal' - they just want to keep an eye on it, so I'll be getting a few blood bags so I can get some tests done with my local GP. Who will also be getting a strongly worded letter from the MS Nurse about Vitamin D levels (we mentioned the conversation we had over 2 years ago). She reiterated what Dr Gran had said at the Nottingham event in October, that 4,000 international units per day of Vitamin D is the recommended dosage.

We mentioned my mobility and my new wheelchair (did I mention that I've got a proper wheelchair? Well, surely you've seen it, right? It's been in the back of my car for the last couple of months at least... And before that it was in our kitchen. Plain as day), and my municipal grey walking stick (still bent due to the almighty strop I had in Italy this summer - I'm not proud).

We talked about other mobility options like crutches and managed to see a Physio. I had a go with crutches (just a bit weird and restricting) - the Physio said, "perhaps you're not ready for those yet...". And then I tried TWO brand new municipal grey walking sticks at the same time, and that was brilliant.

To be honest, I've never been sure which side I should have my stick in order to support my weaker left leg, so I spend a fair amount of time switching from side to side. And whichever side I use, I invariably get chronic pain in my shoulders.

Using two sticks I can really get a good head of steam - but like the man said, "don't get cocky".

I don't know if I'll be able to find time to write anything over the next couple of weeks (see above: BEHEMOTH), so if there's anyone out there, Happy Christmas and a Healthful New Year. Thanks for reading this far!

This is pretty much my favourite song from this year. It's also Barrack Obama's favourite tune. So that's another thing we have in common. Unsurprisingly this fantastic album is cleaning up in the end-of-year polls - it's nice to be right every once in a while!

Tuesday 1 December 2015

the way i walk is just the way i walk

A colleague at work commented on the state of my shoes the other day:

No filters have been applied to this image.

I pointed out that, far from being targeted by persistent and precise bullies with an anti 'box-fresh' specialism, my left leg is the 'draggy one'. The muck on my shoe is just the dust I kick up when i walk.

I'd already noticed the state of my left shoe but it's pretty weird to be made to take a step back and consider the situation anew.

However you cut it, this can't be good, can it? 

It has now been 4 weeks since my last physio appointment. Have I been doing my exercises regularly enough? Probably not. And unsurprisingly my walking has been getting slightly more laboured. 

Could this be to do with the weather? Year-end exhaustion? My age? Or... perhaps... perhaps... perhaps.

As the physio rightly pointed out, I know what I need to do to get strength and control back. So I am trying to do this more regularly but can't seem to find more than a few minutes a day. Usually when I hit the snooze button on my alarm every morning.

On a loosely-work-related tip...

It's that time of year when people around me are dropping like flies - whether it be through some kind of lurgy or exhaustion as we drag our weary bones to the Christmas break. 

Now I'm not saying that I hold all the cards with regards to work-place sickness ("you think you've got a 'bit of a sniffle', do you? Oooh, I know just how you feel. It's just like me with my chronic progressive disabling health condition... *withering glare*").

But I do think there's a bit of a weird double-standard which plays out here (and it's probably in my head). 

It's like I don't want anyone to be able to say that I was playing my disabled card if I have a day away from the office

I very VERY rarely take any time off for illness. Not that I drag myself in unnecessarily if I'm clearly suffering with something contagious. But still, I can't remember the last time I had off sick.

And I certainly can't remember the last time I took a sick day without doing a little bit of work from home.

I don't mean it to sound like I'm doing a job that nobody else could do - it's really not as if I'm talking about brain surgery / rocket science. But there does seem to be something with me - it might not be anything to do with my condition but psychologically I feel like I need to give an extra few percent.

I'd be interested to know if any of you feel the same - whether it's a desire to work as much as you can while you still can or some weird self-flagellating need to prove that you can do it. Or a combination of the two.

I hope I'm right in assuming that we've all pretty much accepted that we're a mess of neuroses, right?

This video is all kinds of amazing however.