Tuesday 30 April 2013

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".

Thursday 25 April 2013

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!

Tuesday 16 April 2013

still here

Thanks for everyone who left a comment on my last blog post - much appreciated.

The Short-Stuff first - we had a great day out as a family for Miss Domino's 2nd birthday - and a great (but UTTERLY EXHAUSTING) weekend of birthday celebrations.

But the thing that kind-of prompted that post was obviously my appraisal. Like I said, no-one likes that sort of thing, even without our own particular special additional requirements.

The year under dicussion began with me having a really bad relapse and being out of the office for a total of 6 weeks - admittedly trying to do bits of work for much of that time (against the advice of the MS Nurse Team, silly boy). Which is why I was so worried.

Anyway - the long-and-short of it is that I'm very lucky to work in such a supportive environment. My Boss is uniformly awkward and uncomfortable talking about disability (not just my own) - ever since I disclosed my condition on my second day working here - but he's getting better.

Since my last relapse, I've been allowed quite a lot of time out of work to attend Physio / CBT / Urologist sessions. Also since then we've put measures in place which will support me if I have a relapse and which enable me to stay connected - great, but potentially mean I will never leave work, but swings-and-roundabouts.

I know that not everyone is so lucky - not to excuse the bad-bosses, but I think some of this might be because I work in the Arts. Think about it:
  • a bit of a cliché, but people in the arts are more naturally sensitive and empathetic
  • working in the arts means that (more often than not) you're funded by Public Money - so there are more strings attached and you're under more scrutiny - it's not just some big Private Enterprise that can do what it damn well pleases
There are other aspects, too:
  • we're a small team here and we each have our own specialisms - meaning there are things that I can do which other people can't
  • I'm pretty good at my job
    (in my defence, colleagues have told me - more than once - that I need more confidence in myself. So that is me being confident - Raah! Watch Out!)
So yes  - come and work in the arts if you want to be treated right - the hours and pay are uniformly shit, there are few benefits and you have NO JOB SECURITY, but still...

Thursday 11 April 2013

full disclosure

The title for this post comes from a phrase I've found myself using increasingly at work.

One recent incident was a disabled audience member for an outdoor event commenting on access; the other was an artist with a chronic illness who is exhibiting where I work.

On both occasions, I've used the phrase in emails:

FULL DISCLOSURE - I'm disabled / I have a chronic illness

The reason for my relentless COMING OUT?

In both instances, it's to show that I have SOME AWARENESS of their particular issues and conditions; plus I appreciate that they might feel uncomfortable stating their issues to a NORMAL so it's easier to know I'm one of them, right?

But in both instances I've felt the need to add:

(I have Multiple Sclerosis)

a bit apologetically, especially with the coy little brackets.

It got me thinking: Why do I do this?

I think part of it is that I'm not THAT (obviously) ill (most of the time) - if my statement stood unqualified and we met, they might feel a bit... I dunno, miffed.

But I do have MS. And it can be no picnic, as we know.

I try to put a brave face on things and be all gung-ho about (for example) bladder retraining and using a walking stick. But I'm human and sometimes the steps I have to go through can't help but shave off a little bit off my dignity.

So I shouldn't really make out it's no big deal - this is a condition which has no cure and no clear path of progression. And I accept that.

But earlier this week I came out to a colleague. And when she said that she was sorry, my other standard line popped out:

"It is what it is"

Which is true but a little bit flippant.

But what are the other options?

Recount the Long Dark Nights of The Soul? The days staring into the abyss, trying to second-guess the particular path my MS is going to take, and the effect it will have on my life and those around me?

What good does that do?

I don't know where I'm going with this post but the whole thing was prompted by a day where numerous people at work FORGOT about my health issues and made RIDICULOUS demands on me - I know, how dare they.

And yes, I can be something of a solipsist. AND I know some people are not so lucky to have such an 'invisible' disability.

But it made me feel like a heel to have to let people down, and I thought I should maybe get a T-Shirt made up:

patented t-shirt design by a man with too much time on his hands... other colours will be available

Maybe the waffling you see is because I have my ANNUAL WORKS APPRAISAL coming up after lunch - no matter how good you are at your job, those three words can't fail to fill you with dread, right? Especially when the last 12 months have also contained RELAPSE12: THE QUICKENING.

No matter - I've got tomorrow off work for my daughter's second (SECOND!!) birthday - seeing as I was up to my neck in relapse and unable to do anything with her last year we're going out for the day.

Surely work can't wind me up enough to ruin that day, can they...???

Monday 8 April 2013

well, well, i am bad

(not really)

But 'Leonard' by Sharon Van Etten was soundtracking writing this post - in much the same way that she soundtracked my relapse last year - memories...!

Anyway, that title is preferable to "the waiting is the hardest part" which sprang immediately to mind - and I can't hear Tom Petty anymore without having flashbacks to the 4 hour (FOUR HOUR!!!) documentary that i watched a few months back.

I'm a sucker for a music documentary but seriously - "exhaustive" doesn't even come close.

So on Saturday i went to my local walk-in centre to get some blood taken which will get sent to get my Vitamin D levels - this was on one of the sunniest days we've had in ages, the irony of which was not lost on me as i waited for about an hour while my wife and child played at a nearby park.

Anyhoo, we'll see what the tests say.

I find myself in a weird position of hoping that the levels are low so that I can actually do something positive about them - y'know, like I want to be ill enough to take a massive supplement.


I've been somewhat distracted while writing this post by the news that Margaret Thatcher has died, aged 87.

She was the Conservative Prime Minister for 11 years, and throughout her term continuously demonised the weak, the poor, the ill and the disabled. She also tried her damnedest to dismantle the Welfare State in this country, with policies that were vile, pernicious and downright evil.

It's ironic that she has died on the same day that sweeping changes have been made to the way that Disability Benefits are paid.

She would have been 'proud' of what the current government is trying to do.

And I hope it's warm enough for her where she's (undoubtedly) going.

Thursday 4 April 2013


So Gabapentin is great for my leg spasms - and it also means I sleep like a log (and snore like a warthog - sorry Mrs D!).

It beats spending another night at the Disco(Leg)thèque anyway.

I feel a bit woozy in the morning but I like to think that adds to my charming muddle-headed slacker persona at work. Let's see how it works out on days when I actually have to do some real work!

This morning I went to the doctors so I've got a scrip for getting my Vitamin D levels checked out - there has been a lot of talk in various MS-related circles about this recently. - so will be checking this out soon.

A friend of mine who has Chronic Fatigue Syndrome had this done recently and found that her levels were something like 15% of what they should have been - she says that the supplement she's been taking since then has improved her tiredness, muscle and joint pain. So it's got to be worth a go.