Friday, 20 December 2013

final countdown

You find me on my last working day of the year. As you can tell, there are many pressing issues which need to be dealt with, so I'll keep this brief.

For instance, as soon as I've finished writing this, my desk will be getting a damn good cleaning.

Before I get started, I just wanted to say thank you to anyone who has read this blog this year, especially if you left comments. It is so cool to know that I'm not just talking to myself!

So what's been going on?

I've realised that posts have been so sporadic on here that I haven't shared the final findings of my adventures in Urology. A couple of months back I was signed off so it's now all down to me – but before then, I switched from Oxybutynin to Solifenacin Succinate (which is apparently pronounced "Sol-if-en-ass-in suck-sin-ate", which really appealed to my childish sense of humour).

According to my nurse SS is a more sophisticated drug than Oxybutynin – it's designed to only affect the bladder, as opposed to REMOVING ALL MOISTURE FROM YOUR ENTIRE BODY.

I seem to be getting on with it really well so if anyone is going down the urologist/bladder retraining route, ASK FOR IT BY NAME TODAY. And now you know how to say it too. You're very welcome.

Recently we all had a dose of the old Norovirus – which was just SMASHING.  I had this before and wrote about it but it was exactly the same deal as previously – so, forewarned, it was easier for me to deal with this time.

Same as before, I found that my MS symptoms were ramped up to Relapse level – which is terrifying when you don't know what's happening.

In one particularly glamorous moment, I knew that I was about to be sick – but as my legs were being completely uncooperative, the only way for me to get there was to:
  • Shuffle off bed
  • Stand/wobble
  • Calculate distance to bowl as being in the same ball park as my own height
  • Fall over
  • Place head in the bowl
  • Vomit
Quite a sight for my wife to walk in on, I think you'll agree.

This particularly nasty little virus has gone through (as it were) me, Mrs D, my daughter, my parents, my brother, my sister-in-law and mother-in-law.

This was all over a week ago – my appetite is only just returning to normal, and I've lost a frankly shocking amount of weight. As this is something I've talked about before, I'm genuinely looking forward to getting properly stuck in over the Christmas break.

God help anyone who gets in the way of that last sausage roll.


In other news, my latest post on is A ChristMS Carol – the language is cleaner, the message is more optimistic, but it's still me, I promise!

However you mark this time of year, I wish you all the merriest of Christmases and a Happy New Year.

Wednesday, 4 December 2013

all fun and games until someone loses their mind

So we've all had a good old snigger and giggle about the Oldest Swingers In Town, who - if you need reminding - are now a couple, living in the houses which are either side of us.

Oh, they get drunk and flirt, and have brutish (if short-lived) sex! How very hilarious!!

Well, things have taken a turn for the more serious - last weekend we had to call out the City Council's Noise Pollution Control people on a Saturday night because of RIDICULOUSLY LOUD MUSIC from Her at 1am. Although the music stopped as the council people showed up, they did hear it as they got out of the car, so the following week they wrote to our neighbour informing her that a complaint had been made.

Which is why it was so surprising to have to call the council again last weekend - are they really that stupid or are they just incredibly vindictive? Again, the music stopped as the council pulled up outside.

Our neighbours know that we have a toddler and they know about my MS. Furthermore, I've been explicit with Him about the fact that, if I have a bad night's sleep, my level of disability dramatically increases on the following day.

Basically, they might be having a laugh but they're genuinely harming my health.

So why would they continue to do this, unless they just really don't give a shit?

This last weekend we have set up a bed in our downstairs study and have continued to sleep down there - it's pretty cosy but at least we're both sleeping well.

(DON'T WORRY: Obviously the monitor linked to our Daughter's bedroom is cranked up super-loud when we're downstairs)

My wife and I have been irritable and snappy with each other. And we're starting to hate living in our house because the late-night discos are continuing most days - now with additional shouting .


Meanwhile, in other news, I FRICKING LOVE THE INTERWEBZ.

From when I was growing up, one of my favourite bands ever has been Throwing Muses. They were on the 4AD label and toured the UK with Pixies in the 80s.

Obviously Pixies went on to become this big (you could say "Gigantic"... but don't) culturally significant thing, while Throwing Muses continued to plough a lonely furrow - possibly because they were a three-quarters female rock band in a predominantly male scene, mostly because they were writing joyously gnarly and twisted art-rock songs which depicted the internal world of Kristin Hersh, a teenage single mother who had bi-polar episodes leading to at least one suicide attempt before the age of 20.

Sounds like fun, huh?

Well, I LOVED them - the songs were constantly changing gears, so clever and inventive and not like anything I'd ever heard before. Wherever I went after that I always carried with me a C-90 cassette tape with Surfer Rosa on one side and House Tornado on the other - that's a stone-cold STEVEDOMINO FACT.

Anyway, Kristin Hersh continues to be a force for good in the universe, so she's one of the 'famous-ish people' I follow on Twitter.

The other day she posted a funny little statement and I responded - in what I thought was a charming and witty manner:

She must have agreed because she FAVORITED my tweet (that should be "favourited" obviously, but we'll let it go for the sake of Twitter).

Obviously I kept my reaction super-cool:

And I got a LOL (and a kiss and a hug) from one of my true musical heroes - it was a good day.

Made even better when my first blog for was published later that evening. This is something which the legendary Jackie Zimmerman had put me up for, and even though it's an American site, they liked my stuff enough to let me have a play.

My first post is called The Anniversary Waltz.

Be not afeared: posts to this blog will continue in their own irregulary lackadaisical fashion.

Thursday, 7 November 2013

corrections and clarifications

Lesson 1 - IRONY doesn't really work online. Certainly not in 160 characters.
When I posted last time that the Internet can be an amazing thing, I didn't mean it without qualifications. I think it would've been better if I'd said "an awesome and terrifying thing".

Yes, the social media stuff is amazingly positive, and the fact that the means of production are within everyone's grasp means that people don't need to feel as isolated as they otherwise might.

However, this also means that... the means of production are within everyone's grasp. So basically anyone anywhere can say anything that comes to mind. Without any credentials whatsoever.

I'd hate to think that anyone (least of all the divine Ms. CrankyPants) thought I was sneering at people for following an unconventional diet. If it works for you, go forth and be healthful.

As I said, when I was first diagnosed my neurologist told me to avoid the internet, and I think he was right to say this up to a point. Too many miracle cures and horror stories and shysters.

And God knows, since diagnosis I've tried everything from the sublime (CBT) to the borderline-ridiculous (Reiki).

At the point of diagnosis, we're all really vulnerable. We sucker for the miracle cures, because we all want one - it's only natural to need to believe that one day this is all going to go away!

Anyway, the folks at Shift.MS picked up on my post and pointed me in the direction of this document from the MS Society - "I’ve got nothing to lose by trying it: Weighing up claims about cures and treatments for medical conditions" - it's a really good read, perhaps a bit (necessarily) cautious but good nonetheless.

MS is such an ephemeral condition. A common complaint from PwMS in online communities is that "regular people just don't understand".

And while that might be true, I don't think we've ever really been able to come up with a watertight definition, mostly because no two people get it the same. My main list of symptoms would be:
  • sometimes I get physically and mentally exhausted. But often I'm ok.
  • sometimes I can barely move my legs. But sometimes I'm ok.
  • sometimes a whole new symptom might rear up to bite me on the ass. But not often enough to be gut-wrenchingly terrifying.
  • sometimes I'm terrified of the future. But mostly I'm ok.
And I've heard (and *whispers it* said) the line about "I have MS but it doesn't have me".

(I'm not proud)

This is a nice idea but you know what? Sometimes MS has my ARSE on a platter - and there's not a damn thing that I can do about it - regardless of any amount of Scrappy Doo-esque bluster. So save it.

I have MS but... ooh actually, I'll just have a lie down for a bit...

It's hard to get a handle on MS and I've never been able to describe (for example) fatigue in any way that makes sense or that doesn't invite the listener to say, "oooh, I know, I get tired too".

(and don't get me started in the bloody Spoon Theory)
My point is, if we can't explain our condition, how can we possibly expect the people around us to GET IT without pointing them towards a THIRTY-SIX page document, no matter how well put together?

The online community is comfortable and comforting because the vagueness and fuzziness is shared. There's enough commonality so that we can say that we get it.

But if we only ever talk to ourselves we're doomed to basically eat our own tails. And that's not massively healthy or helpful or proactive.

Thursday, 31 October 2013

the gullible cynic

The Internet can be an amazing thing - especially if you have an illness like MS.

Most importantly, you can find somebody, somewhere who will have already written about any symptom in order to back up ANY half-baked theory you might come across in the course of your day!

Exhibit A
I've stopped having Cow's milk in my cereal, shifting to a Soya alternative (quite nice actually) after reading various things about a link between MS and Lactose Intolerance. But the thing that finally convinced me? Well, that was finding a web page (which I can't find now!) which said that the cheese-making process actually removed the lactose - so I can still eat cheese! Result!

I do actually feel quite a bit better, it has to be said - much less slovenly and my memory (for work stuff) seems to be better (still SHIT at home, mind) - but that could be due to any number of reasons:
  • I genuinely love the autumn - Jumpers! Comfort food! Bright crisp mornings! Cardigans!!
  • I've recently doubled my Vitamin D3 intake to 2,000 IU.
  • I've walked into work for the first time in AGES on a couple of occasions in the last week - it was lovely (see first reason above).
So it could be the Soya or it could be... I dunno. Just good vibes?

I even recently picked up this article about Bacteria in soil having a link with MS - bizarre and I DID eat soil as a child...

When I go home to talk about this stuff, my wife just rolls her eyes - "oh, what have they decided this week?"

And it DOES seem that there's always something new which is put forward as a theory - hopefully something which can make you feel quilty - "are YOU eating enough LIVER? Tut-tut"
Call me a wet liberal but I like to think we should, as a species, be moving beyond the idea of OFFAL as a food choice. I know it's supposed to have loads of good stuff in it but when you think about what a liver actually does... just *ick*.
I always come back to when I was first diagnosed, when the neurologist who called it what it was told us to stay clear of the Internet.

There are some totally valid sources of information - MS Trust, MS Society, Shift.MS - but even here there are open forums where people can sound off about their individual symptoms and have a good old moan (a long-standing pet peeve of mine) - and even play DISABILITY ONEUPMANSHIP BINGO. Brilliant!

But my absolute favourite thing about the Internet is currently Twitter - I can't even put into words what I love about it, but in the last few months I've had many chats with people - some newly diagnosed, some old-timers - not to be the "Big I Am" but just going back to my idealistic view of solidarity and LOOKING OUT FOR EACH OTHER.

(I still hate the #MSsucks hashtag, however...)

Anyway, I organise my feeds into two lists - the full list of those that I follow, including musicians and hopefully amusing celebrities, and one called Real People - these are people who I interact with regularly or have even *gasps* met in the Real World.

One of those Real People is Abigail Budd and earlier today she posted a link to another new study which says that "measuring the walking speed of multiple sclerosis patients can help doctors assess progression of the disease and the severity of disability". It then goes on to give an idea of what level of disability can be expected based on walking speed.

I flipped out (mildly - I am at work, after all) - how is that study useful to someone who has been recently diagnosed, or even to someone who has been diagnosed for years? As Abigail said to me, it's not offering much in the way of hope or disease treatments.

It's effectively just giving a new yardstick to measure how difficult your life is / is going to be. I have visions of people with MS walking around with stopwatches. And what's going to happen if they can't manage the desired time on that particular day?

Are we so out of ideas that we're each going to turn into our own personal ATOS? The current UK government would probably call that an "empowering decentralisation" or something.

As is so often the case, I don't really know where I'm going with this (and I am hungry) - but we need to be careful about what we choose to believe (obviously).

Just like me with the thing I found about Antihistamines or my ridiculous Lactose rule - if it had meant cutting out cheese, I'd never have even considered it (wish I could find that website, though...).

My problem is that I'm a very gullible cynic - I try to take everything with a pinch of salt but like my canine friend says...

[edit: see my follow-up to this post, corrections and clarifications]

Monday, 28 October 2013

despite all the amputations

I've said it before elsewhere and often, but this is my blog and I'll repeat myself if I want to!

The Smiths were a band who, from the age of 11 to 16, meant the world to me. To this day, when I listen to 'How Soon Is Now?', I'm immediately transported back to my bedroom in my parents' house - picture this: I'm a borderline pretentious brat and I'm revising for my English Mock Exams.

There has never been and will never be a band who meant - and continue to mean - so much to me as The Smiths did then. Despite the amount of guff that Morrissey continues to spout.

However, my favourite band of all time is The Velvet Underground.

Over the course of their four officially released albums, they expanded the vocabulary of rock music - literally changing the sorts of things that rock bands could talk about, and sonically, changing the musical tools they could use to say it. From baroque art-pop to rabid bludgeoning noise to inner-city portrait chamber poetry to perfect rock-pop songs in four albums.

Plus they wrote the book on how a cool band should look.

But I think the main thing they brought to the party was, they were the first rock band to say NO.

I was talking to my wife about the story that when they first started, they had a regular gig in a New York coffee shop. The manager of the place told them that if they ever played The Black Angel's Death Song again, they would be fired on the spot.

So they did (an extended version at that). And they were.

My wife said, 'but what did the manager expect, saying that to a band?'

The thing is, before the Velvets, rock bands were grateful to be there and they said 'yes'.

I love the Beatles, but they were nice company guys you could take home to meet your mum, even with the drugs and the hair. And probably because they went to the right schools, even the Rolling Stones were viewed as naughty little boys at the height of their drugs-bust infamy.

The Velvets and Lou Reed were legendarily ungrateful, contrarian and curmudgeonly, and the POWER of young people being ungrateful and demanding the stage, saying NO as soon as F*CK YOU, led (directly and indirectly) into all the great musical genres which have followed.

And don't think that NO is necessarily a depressing or difficult word - Lou Reed and the Velvets' "no" was a positive and powerful statement of intent, it was a question as well as a rejoinder, a position of power.

An opening-up of options rather than a closing-down of negotiations.

Lou Reed has died at the age of 71. He's kind of been the poster boy for grumpy old musicians in recent years, and I still can't get my head around the album with Metallica.

But maybe that's my problem - to be his age and still be questing for a new expression of the art he saw and heard in his head - that's something we should be so lucky to aim for.

RIP Lou Reed
2 March 1942 – 27 October 2013

back to more health-related navel-gazing soon!

Tuesday, 8 October 2013

none so blind

I was introduced to the writing of Douglas Coupland at exactly the right time .

I was midway through my degree and I'd realised I was going to come out more-or-less unemployable, I was living in a house with people who were developing some serious Class A drug habits, and I was winging my way towards a mid-20s breakdown. Because of that, I was ripe for the picking when I first read Generation X.

It's been a while since I've bought one of his books on faith - the law of diminishing returns seemed to set in - but I've got fond memories of Microserfs, Life After God and Girlfriend In A Coma in particular.

The other weekend I read a review of his new book (which got a pretty thorough kicking). It made me go back to another of his old books, Eleanor Rigby.

I read it shortly after it was published and I can't remember thinking much of it at the time. But I did remember the basic plot of a lonely 42-year-old woman who gets a phone call from the hospital, asking her to come and visit a young man who has her listed as his 'contact-in-case-of-emergency', and who turns out to be the son she gave up for adoption twenty-odd years previously. 

Oh, and he's got Primary Progressive MS

Re-reading it this last week, I enjoyed the book but the problem with his books is that they tend towards the self-parodic - the characters talk and think like the characters in a Douglas Coupland book, full of hip and zeitgeist-y pop-culture references. And they're prone to wallowing in an endless quest for greater meaning and/or spirituality in Godless times.

My main issue was that the character with MS - Jeremy - was obviously slated for tragic death, but this was offset by his charm and wit. Plus he had the benefit of having VISIONS, and the skill of singing songs backwards perfectly, because he's special.

So anyway on one level, the portrayal of MS is good because Jeremy is so comfortable with his condition, which is always labelled as Primary Progressive MS. But on the whole, I don't know why Coupland chose to make Jeremy a PwMS - what's HIS relationship to it?
I'm (naturally?) a bit uncomfortable with MS being used as a plot-device (think about it, it will always end tragically in any kind of fiction).
My favourite bit was this joke, which Jeremy tells to a guy who has just given him a job selling mattresses - at which Jeremy is obviously a NATURAL (see: special):
Jeremy asked, "How many people with MS does it take to put in a lightbulb?"
Ken did not know how many.
"Five million - one person to do it, and four million nine hundred and ninety-nine thousand nine hundred and ninety-nine to write depressing online web-logs."
The terminology is nicely dated (who says 'web-logs' anymore? Ah, the early noughties!) but I think it still applies... *ahem*.

Now interestingly (or not), the book came out in 2004 - which was the year after I'd had what I now see was an attack of MS symptoms, and the attack which set me on the road to my diagnosis. Seeing as I had pretty much all of these symptoms (listed in the book) at some point the previous year, why did I not make the link?

It's strange looking back that I didn't even make a SUBLIMINAL link to the symptoms that were bothering me - I'd had varying levels of numbness for at least 2-3 years by this point.

It's either me being a bit thick, or being so far in denial that I had no idea what was going on in my brain.
Searching for an image for this post, I came across the beggaring-belief Eleanor Rigby Hotel - the website doesn't say how many single beds there are here.

Really, who would want to stay in a hotel associated with "All the Lonely People"? Even with "crisp white linen and mellow soft furnishings"?

Monday, 30 September 2013

we are fine

the author on stage, September 2013 - in front of an AUDIENCE and everything - credit: Vinnie Ransome
 So the gig went absolutely fine and I saw some people who I hadn't seen in ages. Three headlines:
  • it's been ages since my wife has had to find an 'I'm with the band' outfit - she had no idea what to wear!
  • the indie-pop world is considerably LOUDER and much more MUSICALLY PROFICIENT than it was "back in the day".
  • bass guitars are heavy. And playing a gig with one round your neck is quite tiring.
This last weekend was the return of the arts festival that the place where I work helps to organise (with other partners in the city).

(I swear I've rewritten that sentence three four times and that's the best I can make it today!)

You may remember I mentioned it last year. Anyway, the event was fine and we've had no adverse comments or complaints YET, and if anything it was even better-attended than last year.

*pats self on back*

Anyway, it's paid for by public money so we have to have a launch event with drinks and speeches and THE LIKE (I'm not important enough to make a speech myself, obviously, but still - CULTURAL ELITE).

Because the events on Friday involved a lot of walking, I obviously took my walking stick.

Which meant that I had FIVE instances (within 30 minutes) of people coming up to me and asking me what had happened.

Now regular readers will know that I'm not exactly shy about it (rightly or wrongly) - if people ask me, I'll tell them. Let's see how it went:

#1 - representative of the major funding body for the festival
HER - so what's happened?
ME - oh nothing's happened, as such. I've got Multiple Sclerosis, I need to use a stick every now and again
HER - [quite nervy and unclear way of asking the same question again]
ME - like I say, I've got Multiple Sclerosis...
HER - [changes the subject]


#2 - artistic partner in the festival
HIM - so what's happened?
ME - oh it's nothing new! I've got Multiple Sclerosis...
HIM - [looks a bit teary, gulps for air]
ME - It's ok. Well, it's not, I guess. It is what it is...


#3 & #4 - (seperate but pretty much interchangeable) artistic partner in the festival / ex-councillor
THEM - so what's happened?
ME - oh it's nothing new, I just need to use this every now and again [translation: all the time]
THEM - are you sure?
ME - yeah, yeah, it's FINE!
THEM - are you SURE?
ME - it's FINE.

ENDS (NOTE - this conversation is probably still happening right now in a parallel universe somewhere)

#5 - partner who I've been working with off and on for the past 10 years
HER - you alright Steve? What's with the stick?
ME - oh I just need to use it every now and again... And it's really great for pointing stuff out [points into middle distance with NHS-regulation walking stick]
HER - cool!


Man oh man.

I don't know if I'd go so far as to say that "Hell is other people" but surely one circle of hell has to be:

"genuinely nice people being concerned about your health in social situations where you don't want to completely bum them out but you also don't want to feel like you're lying to them"

But then - as is increasingly obvious - I'm not much of a writer.

Monday, 9 September 2013

i'm dancing in the show tonight

Long time readers of IASB will know the reason for the blog's title. Even so I can sometimes forget that it contains a (what I would call) MILD SWEAR.

So I was surprised to have a twitter conversation with a representative of a national MS charity, saying that they wouldn't be able to RT one of my last blogs because as a corporate charity, they need to protect their brand. 

Fair enough - I'm the brand and grammar fascist where I work so I can appreciate where they're coming from. 

Anyway - thanks to the MS Trust (amongst others) who did retweet it, swears and all...!

Back in the days when we were playing in various bands and writing songs, I held the valuable position of recordist. Out of all of us, I'd had the most experience of using 4-Track Studios - I know, it seems so bizarre to think that now I've got a 4-Track recorder, a 16 track studio, and GarageBand ON MY PHONE but still. 

Rather than going out and getting wrecked, we would stay in, think up a band name and write and record songs for them as quickly as possible. It was great experience and really helped me to learn how to get good sounds from some cheap and crappy bog-standard equipment. And working within the limitations was a really good way of working.

Listen to the Shithouse Masters for what I think are the best examples of this stuff. But eventually everything Johnny Domino released was recorded in my home, which is pretty cool.

I'd also record things for friends, and one of those was my old friend Brian. He was the mental drummer in one of our old noisy bands but he also had a taste for the twee-er side of Indiepop - the kind that was typified by bands like The Field Mice and the rest of Bristol's Sarah Records label. 

It wasn't really my bag but I used to record their stuff - and as other members came and went, I ended up assisting with arranging songs and playing a variety of instruments. 

Brian was always really plugged into the international network of fanzines and cassette labels (pre-internet, obviously) and through various friends and contacts, that band - Peru - has had a bit of a second life. Two years ago, a label in Canada got in touch wanting to press a CD of songs so I was given the task of 'remastering' them (the guy pressing up the CDs really spanked them so they sound pretty dire despite all my work - but these files sound just peachy). 

Anyway, Brian put together a new line up of the band which has been playing to audiences ever since. A couple of months ago he got in touch to say that they'd been asked to play a festival in Nottingham and their new bass player had double-booked himself. As I'd recorded and played on most of the songs that are in the set, Brian asked me if I'd be willing to fill in. 

I was chuffed beyond measure to be asked, so next week I'll be taking yet ANOTHER opportunity to show off!

And unlike the intense rehearsal process for my appearance at IndieTracks two years ago, we'll be lucky if we manage one run through before the day...

No bother!

Friday, 6 September 2013

damn fine

When two separate evens occur simultaneously pertaining to the same object in enquiry we must always pay strict attention.
- Dale Cooper 

God, I loved Twin Peaks - in the UK it was broadcast on Tuesday nights and I always remember that every Wednesday we'd all pile on to the college bus saying "did you see it? what did THAT mean? what did THIS line mean??" Excellent music, too.

Happy days - anyway, there is a reason why the above quote popped into my head.

Where we live, we have two neighbours - they're both (fairly young) grandparents and they live alone. A couple of weeks back, in the intense heat, they got together to sunbathe and to indulge in some pretty  high-octane flirting.

Now I'll stop you right there! I have no problem with older people flirting and getting jiggy - it was just that they were so awkward and plus they got HEROICALLY drunk while they were doing it. They could've been the youngest, buffest, most beautiful people in the world but still, there's nothing worse than hearing drunk people of any age trying to cop off with each other.

Anyway, we don't judge. And even though we have a child, we're not like Grandma Moses or anything - we don't mind a bit of noise, it's only natural. But the walls are thin and there have been a couple of occasions when it has gotten ridiculous.

CASE IN POINT: earlier this week - on WEDNESDAY (the international party night), they were playing music ridiculously loud to the early hours. They stopped when we banged on the walls (and no-one likes doing that, do they?) but I'm struggling to stay focused at work as it is (as you can tell by the fact that I'm typing this at 4pm on a Friday...).

But the lack of sleep turned me into a basket case the following day and my legs get incredibly immovable when I've had a stressful night.

Aside from anything else they both know about my health and have seen our daughter - so they know what we're dealing with. With all that, their selfishness was the most upsetting thing about it.

So imagine my surprise when I saw this article in my Twitter feed, about how sleep plays a key role in the production and repair of Myelin.
"Disturbed sleep may aggravate perhaps the symptoms of [Multiple Sclerosis], in a vicious cycle"
Now it's not rocket science that rest and recuperation can play a part in maintaining our health and it's a particular type of sleep that seems to be the most beneficial but still, it's interesting so I thought I would share with you.

Tuesday, 3 September 2013

holiday epiphany

Seven years ago last month, me and Mrs. D got married in Venice - not to be flash or anything, it was just where we went on our first holiday together as a couple, and I think we were even talking about it back then (which was about two months after we started seeing each other).

if we look sickeningly happy, that's because we were!
Even though we got married a year after my diagnosis, we still decided to do it in the middle of the day at the hottest time of the year. And as you can tell from the picture above (aside from the fact that I'd clearly EATEN ALL THE PIES), there was a fair bit of walking involved, around a city which - although amazingly beautiful - is perhaps not the most accessible.

Could we do it now? I don't know - it would certainly take a lot more planning.

Some friends have asked us recently if we'd recommend Venice as a place for them to take their young (under 1 yr old) son. And our initial response was to say no way, but then we realised that we have an additional issue to contend with.

Are we creating problems unnecessarily? It's hard to say, and all pwMS probably do this.

But does it stop us being brave? And should it?

Last week we were on holiday with my family and my brother and his kids - which we did at the same time last year after my relapse, when the idea of holidaying solo seemed ridiculous.

We went on holiday with my in-laws earlier this year which was great. And it's really useful for us to have an extra pair of hands around, but I don't want to think that we'll never go on holiday on our own again.

So the last week we had a really cool time in a lovely part of Wales, Aberporth. The weather was great, and it was really mellow (even with three family members under the age of 8).

  • El Salsa - As we arrived in Aberporth we saw a sign advertising Mexican take away so we did a little bit of digging around and discovered that it was a little pop-up eating cart, on Tuesdays only and was dirt cheap. So one Tuesday, me and Mrs D ended up eating delicious freshly-made Mexican food whilst sat on a bench overlooking the Welsh coast. It was gloriously surreal.

  • Epiphany on the shore. This isn't rocket science by any stretch of the imagination, and is probably something you have noticed many years before. But I was standing with my feet in the sea (after letting my feet get acclimatised to the change in temperature, obviously) and I was really aware that the sand was being sucked out from under me. Obviously this is THE WAY THAT IT GOES - it's not some brilliant insight that no-one's ever had before - but it was really obvious to me last week. That the seas move the sand out to sea and back to the land in a constant motion. The earth was being moved out from under my feet by powerful waves.

    If I had been more depressed, this would have been a reminder of my diagnosis and of my increased unsteadiness. But now it was a cosmic reminder of the inter-connectedness of everything and an awareness of the fact that I was standing with my wife - who I love very much and who puts up with A LOT - and we were both holding hands with our daughter.
All things considered, life is pretty good and it might not always be so.

We should all enjoy it while we can - and take it from an official miserable bastard, we can all be as happy as we possibly can be in our present circumstances if we let ourselves.
Stevedomino would like to make it clear that he was not partaking in any controlled substances when he came up with his blindingly-obvious hippy-dippy bullshit non-insights. Just so you sarcastic buggers know!

Monday, 19 August 2013

why do we do it to ourselves?

The original title for this blog post was going to be:

Fuck, fuck, fuckety-fuck

So the last couple of weeks has seen me applying for a job for the first time in six years. No real reason, I'm fairly happy where I am currently, just something came up so I thought, what the hey?

Which means that the last couple of weeks I've been reminded what a MASSIVE PAIN IN THE ARSE it is applying for jobs.

First up, there's the application form. If you're like me, you'll agonise over every phrase, even before you get to choosing your referees. And don't get me started on the covering letter / email.

Maybe you get an interview, which is where the real fun starts. Especially if you have to prepare some kind of bloody task or presentation.

So yeah, that's where I've been the last fortnight. And because I'm talking about the arts, there's a ridiculously short turnaround.

For example, last week I was told I had an interview, which I had on Friday - including a presentation which I had to prepare.

No big deal but - to be honest - I was pretty dim as far as managing my energy was concerned in the run up. I had a late night at work on Wednesday, after which I needed to get my shit in order.

Which is why on Thursday I was convinced that I was having a relapse - I lost control of my legs and couldn't control my hands with any kind of precision.

This turned out to be very similar to the mini-relapse I had a few months back. After a good night's sleep, and a fairly low-stress and lazy morning, I went along to my interview.

In a new suit, if I say so myself, I looked the nazz.

With everything else that was going on, I didn't have as much time to prepare as I would've liked - which is why I'm unsurprised (but obviously disappointed) to report that I got an email over the weekend saying that the panel won't be taking my application further.

Why am I sharing this with you?

Job interviews are a MASSIVE PAIN IN THE ARSE anyway, regardless of our particular health issues. And I didn't honestly think I'd got the job - rerunning the interview in my internal insomniac cinema, there were too many, "ooh, I should've said THAT"s.

Don't get me wrong, there were some answers I was really pleased with. But still.

I dunno - I'm just kind of wondering where I go to next. Will I ever have another successful job interview?

Whatever. I'm not in any great rush to work somewhere else, and it's a luxury to be applying for jobs when you HAVE a job. And I DID get the interview.

But I'm still pretty pissed off that I put my family through the last few weeks - not only the application and preparing the presentation, but the touch-and-go of whether I was going to get to the interview.

In conclusion:


Friday, 26 July 2013

a word to the wise

I started writing this post yesterday when I was in the eye of a Fatigue Storm. It was shaping up to be super-long and super-depressing - today is quite a bit more hopeful! So stick with it.

Let's Go!

It has been seasonably warm over the last few weeks - it says a lot for the English Psyche that we feel the need to comment when our summer is *heaven forfend* SUNNY.

The other week, my mate Simon started the Derby Race For Life in memory of his late wife Annabel - the race started round the corner from where we live, so we went along. We didn't manage to hook up with Simon but had a nice time on the park watching people running 5k in blazing heat.

The trouble started when we tried to get home - the heat had done a number on my head, so I could hardly move my legs. I barely made it home.

This year has been the first time I've really been aware of how the heat can affect me - yeah, I've noticed the energy drain before now - but this year, it's been almost like as soon as my head gets in the sun, my brain goes into a slump.

So when this post appeared on StumblingInFlats at the height of the heat, it was all too relevant to me.

Case in point - this last weekend, we were in Bristol for Gromit Unleashed exhibition (Evie loves the Wallace and Gromit films) so we stayed for a night in an apartment and tried to walk around seeing as many of the Gromits as possible.

Y'know, like any normal young-ish family.

Obviously MS had other ideas. Basically the heat and a long drive conspired to make it feel like I was walking through thick sludge. I'm assuming that you know how it is!

But obviously this conspired to put a dampener on the weekend for us all - actually, I don't know if Evie noticed but me and Mrs.D certainly did. It's hard for her to see me struggling, and it always makes me have all kinds of helpful thoughts.

"Is this the start of a slow decline? Am I going to need more assistance in the future? Will our lives consist of a constant narrowing of our horizons? Would my girls be better off without me?" - y'know, that kind of thing.

It carried over into my return to work this week - each day I was completely beat when I got home, struggling up the stairs and making it onto the sofa, barely able to hold a conversation.

ANYWAY - for some reason, when I was bathing Evie last night, I remembered something that somebody on Twitter had talked about - how her MS symptoms seemed to be exacerbated by a histamine intolerance.

Now - I've had Hay Fever since I was a child. But I have many, many HAPPY memories of Summers spent with my brother (who always had Hay Fever much worse than me), listening to records in the Dining Room at my parents house - the stereo was in there, and the room never got ANY Sunlight.

These really were golden days - eating frozen fruit drink cartons and listening to the key musical texts of my upbringing - quick thanks and roll call for De La Soul, Pixies, Dinosaur Jr, Throwing Muses, Sonic Youth and The Stupids.

Musical digressions aside, I still get a little bit of Hay Fever, so I've recently been taking antihistamines.

When that Twitter conversation popped into my head (and after I'd put Evie to bed), I went to Google and just look at what popped up:

Now I'm not dumb enough to diagnose by Google but that article makes for interesting reading!

Am I going to take it with a pinch of salt? YES - especially as the same search throws up results which seem to promote the use of antihistamines as an MS treatment.

Did I take any hay fever treatments this morning? NO

Do I feel more physically and mentally able today? YES

Am I going to talk to my MS Nurses about this? HELL YES 

Today's lesson:
With MS we're playing with a queered deck from the start, so I guess I should've known to look into things a bit more carefully before I started taking any additional medication.

And I know there might not be a link.

But I DO feel better today.

So let's all be careful out there.

And with that I'll leave you with the full Peruvian Vacation album by The Stupids (it's only 20 minutes long) - sometimes the internet really does deliver in spades, doesn't it?

Enjoy - and pass me a Capri Sun.

Wednesday, 19 June 2013

sixteen and time to pay off

A relatively quick post because yesterday I had another appointment at the Urologist.

Which meant that the weekend of my 40th birthday (which was lovely, thanks), I had to fill in another VOIDING CHART

It was no biggie really - the nurse told me previously that it was more as a guide to frequency, rather than setting a gold standard for accuracy

Anyway, since our last meeting I've been trying to go for a little longer and to ignore my pesky misfiring nerves - and the nurse was pleased with my progress. 

The following conversation is pretty much verbatim:
Nurse - You've basically got three options now. One: you can keep doing what you're doing now, trying to go a little bit longer when the initial urge hits, in order to try and make the volumes increase when you do 'go'. 

Stevedomino - OK. So that's the 'less easy' option...

Nurse - Two: there are drugs which you can take that can support the bladder retraining process. I know you're taking Oxybutynin...

Stevedomino - Actually I stopped taking that a few months ago. One day I just forgot and I decided to keep going. Anyway, with my Rebif and Gabapentin, I tend to think that I take enough drugs. So if I can avoid taking MORE that might be best. 

Nurse - OK, well that's fine. There is a third option. Have you ever heard of a TENS machine?

Stevedomino  - Oh yeah, my wife had one for use during the early stages of labour. 
(As an aside, I remember thinking at the time that a machine which gave me short bursts of electricity was some kind of IDEA OF HELL - I have enough trouble with pins and needles and spasms. But anyway...)

Nurse - So you know what they are and this works in just the same way. You have to use it for so many minutes a day, ideally for a period each day.  And in collaboration with all the other things you're doing, it can have a positive effect on bladder control...

Stevedomino - Well, that sounds pretty interesting...

Nurse - However, you can't wear the machine in the same way your wife did. Because it needs to affect you bladder, the electrical current is transmitted via a large probe which you insert into your back passage...

[epically-long pause] 

Stevedomino - Oh... So tell me about the first option again?
I must say it gave my wife quite a laugh when I told her about this option. And she has already said that she might give the nurse a call the next time we have a falling-out:

Actually, Steve has been thinking and he would like to try the anal probe... no, he can't get to the phone right now... no, just send it for my attention...

I hope my rampant oversharing has spread a little sunshine in your day too!

Also, the nurse was a firm believer in the theory I was talking about last time...

Thursday, 13 June 2013

don't want to be one of THOSE moaning MS bloggers but...


(OK, that's out of my system)

It's the last few days of my 30s. I'm not TOO bothered about turning 40 - my wife would be only too happy to say that I'm almost perpetually grumpy so I'm already well into old fart territory.

We all need a role model
My 30s have been pretty tumultuous - like most people, I guess:
  • in my 30th year I ended a relationship (which involved selling a house and moving back into my parents' house. Luckily they're amazing people so this was actually a great time for me! I just wish I'd saved more money in this period. Anyway...)
  • I also started a relationship with the woman who would eventually become my wife
  • I was diagnosed with MS
  • I was made redundant from my job - a year after diagnosis (unconnected) and two months before I got married. I never stopped working, doing some freelance *stuff* before getting my current role as a fully paid-up member of the local CULTURAL ELITE.
  • Bought another house
  • Became a father
There have been other milestones but these are the key headlines!


So remember here when I was being a little snarky about Merck Serono and their MySupport swanky magazine/app? Well, there's a (small) portion of Humble Pie coming up.

The other night I'd just done my Rebif injection when the machine just shut down. Kaput. No light's on, no-one home.

I called the MySupport line and left a message (for some reason I was very late doing my injection - probably some wild party or gallery opening... *ahem*). The next day they called me up, and yesterday I got my replacement machine.

Nice one.

ALSO - Flicking through my latest MySupport magazine, I came across an article about MS-related Cognitive issues.

It was full of all kinds of hints and tips (writing lists? CHECK. Putting keys in a designated place? Hmm... I'm working on it) but the bit that really struck was a pull-out box which said:
Knowing that we might develop memory problems can sometimes make us more aware of every little lapse, but try not to worry - we all forget things sometimes! 
Not rocket science, but it really got me thinking - which came first, the Cog-Fog or the expectation that you will suffer from Cog-Fog?

Similarly, which was first, my bladder issues, or reading about the link between MS and bladder issues?

I'm not disputing that there's a link - but by focusing my MIND on the potential issues, have I almost created the problem before it was due?

By reading all these MS blogs and going, "wow I've got THAT symptom, that makes me feel less like a freak.... but I haven't got THAT symptom... yet... which concerns me", are we convincing ourselves of the problems which may or may not be "in the post" before we necessarily need to?

I'd be interested to hear your thoughts - as I said, I'm not disputing that there's a link between MS and *SYMPTOM Y*.

And as usual I don't really know where I going with this. At the very least it's some kind of weird Audience Development project - "don't read this, it's bad for your health" or something.

Well played, Merck Serono - you've won this time. But I'm still watching you!

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?

Wednesday, 8 May 2013

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.

Tuesday, 7 May 2013

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.

Thursday, 2 May 2013

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!

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.

Monday, 25 March 2013

disco (leg) inferno and a question

Long-time visitors to this little blog may remember that this time last year I was knee-deep in relapse. The fact that the three of us were on holiday at the time - coupled with this being around Mrs Domino's Birthday celebrations - meant that I really wanted her birthday to NOT SUCK this year.

I know, that's just the kind of guy I am.

The perpetually ongoing 'pass-the-bug' relay has meant that I've been feeling a bit crappy over the last couple of weeks - culminating in me getting a tummy bug from The Child (which she'd picked up at a soft-play centre - AKA the fountain of all evil) over Mother's Day weekend.

I'm underselling it, actually - while I was 'exorcising my demons' (ahem), my legs stopped working and I TOTALLY FREAKED OUT - the idea that a relapse could happen over the same period as last year was almost too much to take.

Following three days total bed-rest where the only things that passed my lips were dry toast and water, this passed - incidentally, my Dad also had this and he lost 1/2 a Stone in weight in TWO DAYS. So - swings and roundabouts?

Anyway - for the wife's birthday the three of us had a brilliant day out at Sudbury Hall and the National Trust Museum of Childhood - it was great (blue badge parking right outside, lifts to every floor), and Evie loved it.

Later that week we went out to a jazz gig (the lady's choice, thank you!) and Mrs Domino declared it the best birthday she's had in years - RESULT.

So it's a wee bit annoying that for the past two nights my DISCO LEG Spasticity has been keeping me awake for hours on end.

I know that Spasticity is a common symptom and it's one we mentioned the last time we went to see the neurology team - which is why the doctor recommended that I try Baclofen. I've mentioned in the past my suspicion of trying any new drugs (following some particularly bad reactions to Amantadine) so I'm trying to avoid it.

But looking at the MS Trust's Spacticity link, the other drug they recommend is Gabapentin - which I took without issue last year.

Has anyone had any experience of taking either Baclofen or Gabapentin for these issues?

Thursday, 7 March 2013

the only chart that counts

Earlier this week was my second appointment with local Urology specialist for my lovely bladder-related issues.

My first appointment was way back when - since then either myself or the specialist has been ill.

Or the last time (CONFESSION TIME!), when I hadn't filled out my Voiding Chart so I faked a broken-down car and cancelled.

a fun activity for all!
I know I'm such a wuss - what self-respecting young-ish person wouldn't want to spend three days measuring their drinks and piss in order to fill out a VOIDING CHART? It's such a charming heading...

So a couple of weeks back, I bit the bullet and bought a cheap measuring jug and mentally prepared.

Now I'm no Mr. Trebus. But the whole process was actually pretty fascinating.

Gross, NO DOUBT. But interesting nonetheless.

So a couple of days ago, I went along with my completed homework and a fresh sample.

The thing with MS, one aspect we all (most of us?? TALK TO ME!) worry about is those wacky nerve pathways - messages get lost, are distorted, they arrive too late or sometimes not at all.

This is a bit of a worry, which is only increased by the fact that most people with MS are diagnosed in their 20s or 30s - the time of your life when you're meant to be partying and being all vivacious and fabulous, as well as sorting out your career and relationships - not a time when you want to spend too much time worrying that you might wet yourself.

As previously mentioned, this whole scenario led right to my relapse last year

Which is why I'm prepared to put myself through all this - and some of this comes from my experiences of CBT.

Case in point: one things my therapist would do was ask me when I was going swimming (for example). Then she'd ask me how I was going to prepare for it, and what the potential hurdles might be and how I might overcome them.

So posting on this very blog that I was going to spend a weekend measuring my liquid intake and output was a way of forcing myself to take action.

You're all Steve's Little Helpers, really - so thanks for that.

And part of my Bladder Retraining work (see? more glamourous fun!) will be to try various techniques before filling out another Voiding Chart before my next appointment in May.  

Don't let me wriggle out of this!

It's A Shit Business - oversharing in the wilderness since March '09.