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?

the magic number

Just a quick post while I try to eat my lunch – apologies for any spelling mistakes! (more than usual anyway).

So today I called my GP for the results of my Vitamin D test (which I had over a month ago).

She started off by saying that neither her or a colleague could find any information about Vitamin D and its effect/impact on MS.

To which I said that it’s spoken about on the MS Society and MS Trust websites for a start.

So eventually she said that the average result for healthy people is between 50 and 100 (sorry for the vague numbers, she probably told me the unit of measurement but I was quietly fuming by this point).

Anyway my score is 38 – a little over a third of what it should be (i guess) but not low enough to be deemed 'insufficient' (which is 25 and under).

She said that she wouldn’t have a problem prescribing some supplements but that I could go and talk to a chemist to get a steer.

Thanks for that (another slow hand clap,please).

So my question to you is:

• Do you take Vitamin D supplements?
• If so, what dosage do you take?
• How did you come to that decision? Finger-in-the-air guess or consultation with a GP / MS Nurse?
• Should I just go and live in Italy instead?

I know that I’ve had some comments about this before (which seem to back up the European Food Safety Authority view that 4000 can be taken safely) but all help / guidance gratefully received.

the horrible truth

Feel (and hear) my pain...
In my defence, I had to submit three news stories in advance to discuss. When I arrived at the station, I was kept waiting in reception until 11.14 (I was due on at 11.15) - when I was dragged up to the studio and plonked into a chair behind a microphone.

Quick hello to the presenter (I've been on with her before) and we were off.

The three stories I decided to talk about were something to do with the local theatre, then something about the new Culture Secretary (as I said before, Derby's Cultural Elite), before we talked about the thing I really wanted to get onto - MS Awareness Week.

Obviously, she decided to flip the order and go straight for the jugular, which is why - IF YOU CAN BEAR IT - you'll actually be able to hear me flapping. In the break in our chat she did say that she would've told me what she was going to do if I'd been brought into the studio earlier.

Man, do I really use the word "STUFF" that much? And me a fricking English Graduate.

If you listen carefully, you can actually hear me physically groping for words. I think I even managed to avoid describing what MS actually is - informative. And I seemed to get really stuck on the word AWARENESS.

Anyway, it makes me want to die of embarrassment and I forgot to mention so many things but people tell me I did OK.

By the time I talked about the other stories it was much more chatty - like I'd warmed up. Which is what I would have ideally done if I'd left the MS story to last.

MsCrankyPants - if you're reading this, I'm guessing that you'll also have a Vanessa Williams power-ballad in your head right now - "Just when I thought my chance had passed, you go and save MS to last"

Like I said, Cultural ELITE.

In other news, I called my local GP surgery to find out the results of my Vitamin D test - they said there was a note that I needed to either see my doctor or make an appointment to have a phone conversation with her. So I'm calling her Wednesday lunchtime - should be interesting.

incoming broadcast

As a member of Derby's Cultural Elite (HA!), I often get approached to go on the radio and HOLD FORTH about STUFF.

I was contacted this week to see if I would go on the mid-morning show on BBC Radio Derby tomorrow (Friday 2 May) to talk about three news stories from the past week.

So I'm going on to talk about some STUFF and also MS Awareness Week.

I've gone back and forth about how I'm going to do it, or if I should do it.

But I kind of think that this is (in some form) activism - showing a different face to MS and talking about this ghastly condition in a different way.

And it's not as if I'm ashamed of it, or backwards about coming forwards generally.

So we'll see how it goes - I'm on the Mid-Morning show (so no plugs for the blog, unfortunately!) on BBC Radio Derby at about 11.15am.

I've been talking to the MS Society and the MS Trust in order to get prepared - so hopefully I won't completely ARSE it up. I've been on loads of times before but not talking about something which means so much to me personally.

Wish me luck!

and in other news from the real world

The MS Society has launched a new campaign in order to highlight the differences in care provision throughout the UK.

As part of what they're calling the MS Lottery, their figures state: 

• 6 out of 10 eligible people with MS are not taking treatments that could reduce relapses and slow progression – and this figure varies significantly across the UK, rising to 7 in 10 people in Wales

• Only a quarter of unemployed people with MS who need support to find paid employment are able to get it
• Only a third of those who are really struggling financially get sufficient emotional support, compared to nearly three quarters of those who are really comfortable.

This is clearly a terribly unfair situation. I knew I was lucky to live so near to one of England's centres of MS research (in Nottingham), where there is also a fantastic team of MS Nurses.

But I didn't realise I was part of the lucky 40% of people with MS. And that's shocking.

To this end the MS Society is calling for people with MS to have fair access to the treatments and services they need, when they need them, wherever they live.

Join the campaign as part of MS Awareness Week here.

small victories (a continuing series?)

So for the last couple of days, I've been walking into work - not a massive deal, except that this is the first time in about three and a half years.

Following the second relapse I had in 2009, I've been either getting taxis (paid for through Access to Work) or driving into work and using my Blue Badge for 3 hour periods throughout the day.

this shows the GENUINE route I drive from home (A) to work (B)

Again, not a massive deal - but I happen to live what is - on a good day - a SEVEN MINUTE walk away (that's what Google Map says, anyway).

The walk into work was one of the things I talked about a lot in my CBT sessions last year. And it's been starting to become A THING.

Y'know - one of those things that, the longer it goes on, the worse it seems in your mind. By way of an example, my Mum stopped driving when she had me and my brother and didn't start again for about 10 years - by which time it had become a terrifying monster of massive proportions.

So I've been determined that this wouldn't happen to me - which is why over the last few months we've been making a conscious effort to go out for little walks. Sometimes me and THE CHILD will go for a quick walk to the shops which is lovely.

A couple of weeks ago, I realised that some of these 'little walks' added up to distances far beyond the walk into work - just from looking at the map above, you can probably pick out a route I can take which is somewhat more direct than driving. But still it loomed large in my head - what if my leg gets all draggy and heavy? What if I'm exhausted by the time I get in?

Last Friday I did the walk (with some preparation) - and although it was hard, I found that I actually had more energy throughout the rest of the day. And I felt pretty proud of myself.

I think I've mentioned before that my boss seems to suffer with Foot-In Mouth syndrome? After saying that it was impressive that I'd done the walk in after so long, he then said:

So what made you do it today? And what stopped you doing the walk before now?
D'you think it was just laziness?

I'll let you provide your own slow handclap.

FULL DISCLOSURE - the walk has seemed increasingly difficult the last two days, but I guess I need to build up some strength gradually.

And even though the walk back last night was super-hard (in my defense there is a slight incline), it was nice to see motorists getting exasperated with the tight turns and narrow roads around where we live - just thinking "that could be ME".

eat y'self fitter?

Thanks to the mighty Jackie Zimmerman for tagging me on Facebook for this video. All praise unto her, etc. etc.

Since I was diagnosed way back when I've been conscious of the need to eat well in order to stay healthy generally. I've been a bit cynical about all the "Eat Yourself Healthy" books I saw in my first trawls around the Internet upon diagnosis but this is interesting nonetheless.

Check it out.


As Mrs Domino is a vegetarian, nothing in this video is a massive shock - when I do eat meat, it's always organic, we eat a lot of vegetables and are pretty healthy lifestyle-wise. Not sure about eating plates of offal, but the rest is pretty-much par for the course.

Anyway - this post is also an excuse if any were needed to share this song by The Fall - any readers outside of the UK who have been taken in by Downton Abbey, Four Weddings and a Funeral, Upstairs Downstairs and the rest, THIS is what the majority of resdients in England both look and sound like.

It is my job to pass on Truths. You're Welcome!