manifest destiny..??

So the walk into work happened today. And it was fine. As I knew it would be.

I feel much more energised and mentally switched on at work today. As I knew I would do.

It's genuinely the case that, if I'd not written yesterday's blog with my "non-resolution", I probably would've found some excuse not to bother.

So Thank You for giving me the motivation. I would've felt like a loser if I'd given in to the niggling little voices in my head!

The fact of the matter is, I've noticed that my legs have been getting increasingly weak, and the nighttime DISCO LEG spasms have really been getting crazy.

If a little bit of walking can help stave off the (inevitable?) progression of my MS, then it's kind of a "use them or lose them" sort of situation.

Plus, it'll give me more motivation to jump around like a loon to this song with my daughter.

the art of peer pressure

You'll be pleased to know that I don't believe in New Year's Resolutions – so I can’t make one of them "blog more regularly"...

Anyhoo, how've you been? Good I hope. Here's the headlines:

Christmas (remember that??) was great – we've finally got our head's round managing the time we spend with our (lovely) families at Christmas – they just want to see Evie but we need to keep her in a bit of a routine for our own sanity. I think we got it right this year, and had some lovely days out just the three of us.

The image above is from one of my favourite days, when we had a lovely walk around nearby Kedleston Hall (20mins drive away from us).

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Now a little confession - for one reason or another, I've been neglecting to make the walk into work recently. We're still going for walks as a family at the weekend but long-time visitors may remember what a big deal I made about this seemingly simple aspect of my day last year.

I'm determined to get back onto it ( however it is difficult to get motivated when you've had a disturbed and stressful night's sleep) so this another one of those things where I publish a blog in the hope that it will kick me up the arse and get me to stop making excuses.

I will walk into work before the end of this week - it's strange how terrifying it is for me to type it!

But on the day after a study finds short bouts of moderately intense activity can have a big impact on tiredness levels of people with MS (which let's face it, we all know anyway), what have I got to lose?

On top of the short burst of "Yogo" I do with Evie in the morning (she's surprisingly persuasive), I'll be Supersonic by year-end.

(But still, NOT a resolution).

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 MultipleSclerosis.net 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.

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 .

Rubbish.

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 MultipleSclerosis.net 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.

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.

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]

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!