Friday 31 May 2013

back to the lake

(not really but this was the most relevant song title on myPod for the name of this blog - by the mighty Guided By Voices, obviously)

So a couple of weeks back we went away for a family holiday and we went to the Cotswolds - readers with long memories will recall that the Cotswolds was the place where I started to feel the beginnings of RELAPSE2012.

I must admit that I felt some trepidation but this time we were going with some support - Mrs Domino's parents and wider family. And it was great.

The weather was pretty, erm, British, but it didn't keep us indoors and despite that we spent a lovely week in a lovely part of the UK, walking about and looking at lots of lovely things. It was lovely.

We were close to Broadway, a place I mentioned before - if anything, there are EVEN MORE disabled parking spaces than I remember, and there are at least TWO Gold-medal-winning public toilets there (I must have missed the awards ceremony), plus dropped-kerbs a-plenty.

It was as great as I remember, plus I'm slightly more mobile than I was when I was last there. I even managed to walk up Broadway Tower this time.

Anyway, it was a great break and good to have others around to take the pressure of me and Mrs D. Travelling down was good this time too (there were MANY toilet stops last year...). ONWARDS AND UPWARDS, eh?

The return to work has been tiring, not helped by having a breakfast meeting on the second day. I've spoken before about my hatred of meetings but this is a whole new FRESH HELL. It was quite pleasing to see that every one of my colleagues who was in attendance was every bit as knackered as me for the rest of the day.

As such, I've not been managing to walk into work as regularly as I would've liked but I really need to stop beating myself up about it. Funnily enough, it's a lot easier to do it when the weather is good (and similarly easier to just jump in the car when it's p*ssing it down).

Who would've thunk it?

I've started taking Vitamin D - is it making any difference? Who knows! But I'll keep doing it in the hope that it helps.

Fellow blogger and regular commenter Swisslet wrote a really interesting thing the other day about MS and weight-loss. This is something that has happened to me recently - as I commented to that post, I was a bit pudgy growing up but have recently gone down a trouser size for the first time in ages. I'm also the lightest I've been since school, all whilst eating like a fiend.

A quick Google to see if this was another, less-documented side-effect of MS threw up...well, not much, other than this thread on an MS Society discussion forum - and this comment in particular:
My husband was losing weight and had no appetite so our physio suggested we see our GP and ask for blood tests to be done. The result was he has an underactive thyroid, which usually causes weight gain, but in some cases causes weight loss. Then our GP told us it is quite common for people with MS to have trouble with the thyroid which is another immune system problem, which of course no one tells you about.
Interesting, no?


  1. Thanks for the link, Steve. I was looking at photos from a wedding I was at a couple of weeks ago, and then, a couple of days later, I was looking at some photos from a trip we took in 2010.... I look so much gaunter it's scary. To me, anyway. I have some muscle wastage, which is bad enough... but the sunken cheeked look is not one I like.
    Mmm. More pies, perhaps?

    Speaking of mobility... as you know, I've been relatively lucky with my symptoms, but I'm currently having problems with my legs: increased loss of sensation and a lot more stumbling and balance issues. I've had to really cut back on my running because of the damage a dropped foot is doing to the rest of my body, and that's bad enough.. but I now feel like I'm glimpsing a possible future where I really struggle with mobility and it's really scary. I'm as phlegmatic about this bullshit as anyone, I reckon.... but this is some serious shit. I'm so getting a silver topped cane with a sabre in it. Damn.
    But what can you do but Keep Buggering On?

  2. hi there - thanks for the comment.

    your post really spoke to me - my mum, dad and brother all constantly worry that i'm not eating enough and keep going on about it - that discussion on the MS Society forum was a bit of a lightbulb moment.

    as far as your mobility is concerned, it must be really weird for someone who has been really physically active - apart from junior school sports, i've always been a bit sedentary - staying in, listening to records, reading, being pale and 'interesting' (i.e. geek).

    which is not to say that using a walking stick which was a hand-me-down from my GRANDMOTHER was easy. it wasn't.

    but a walking stick is just a tool to help me stay independent. similarly a wheelchair is just a tool that i might need to use in the future.

    but there really is no point in worrying about the future - yes, we're on a bit of a 'queered pitch' but no-one knows what's around the corner. and just dealing with shit day-by-day is hard enough without thinking about what this twinge or that stumble might mean.

    and any issues you're having now might well turn out to be temporary, or at least might rear back a little?

    get your fancy cane and keep buggering on, my friend - as really what are the other options?

    (er, that would be "buggering off", I guess - not a good option)

  3. cheers Steve. Adapt and survive. It's all we - or anyone - can do with the shit life throws at us, right?

  4. true dat, my man! as Curtis Mayfield said, Keep On Keeping On.

  5. BREAKFAST MEETING? What the hell is this nonsense? Lord. I've just started a new job and now am dreading a cheery memo about a BM. (Tee-hee, not THAT kind...remember, I'm 12.)

    I've been subjected to brown-bag lunch meetings (hideous), but at least that's at noon-ish.

    Glad you had a nice, minimal-bathroom-stops trip. The Cotswolds are beautiful.

  6. and you were worried that working full-time would cut into your "bimbling-around-on-the-internet" time - if anything, there are more opportunities!

    lunchtime meetings are truly the devil's spawn, but meetings in general are hideous.

    i should say, the breakfast meeting was also a NETWORKING event - yeah, because everyone looks their most appealing trying not to drip tomato ketchup from a lukewarm bacon buttie on their suit.

    at stupid o'clock

  7. UPDATE: I found another solution to the sunken-cheek problem. I grew a beard. People tell me I look healthier. I might leave it and go for the ZZ Top look.

  8. Nice - reminds me, I FORGOT that I grew a beard when I was at university* - I was talking to a guy in a club who also had a beard. Towards the end of our chat I asked him how old he was, guessing he was 28 - he said he was 17. I removed my facial hair the next day.

    Plus my daughter doesn't give me kisses if I've got a "spiky face"

    * the short term memory loss implied in this statement probably tells you a lot about how I spent my time...