goodnight sweet captain

Sad news that Don Van Vliet aka Captain Beefheart has passed away at the age of 69.

Don had been a bit of a recluse for the last couple of decades, preferring to stay in the desert and concentrate on his painting - rather than the gloriously idiosyncratic take on the blues which brought him to the world's attention.

During his time in the wilderness there were loads of rumours that he had MS, rumours which are confirmed now.

Here's some prime live Beefheart from 1973 - I've always loved the way the musicians are physically FEELING this weird skewiff beat.

Read a nice tribute from The Guardian

Buy some of the good stuff



Don Van Vliet aka Captain Beefheart, 1941-2010

it isn't always you-know-what...

The comment by Jackie on my recent post really chimed with me.

I think this is a problem that I certainly suffer with - that every little bump in the road is to do with MS and/or a progression of the disease - when quite often it's just STUFF that EVERYONE has to deal with.

So insomnia - yes, the feeling that I might need to go to the loo in the night can be distracting and the thought that I might have an accident in the night can be enough to keep me awake.

But the main cause of insomnia is - as Jackie said - just stupid stuff flying around my head.

Case in point - Monday is an injection day. Is the Rebif keeping me awake, or is it because Tuesday's at work are filled with meetings, which means I rarely (if ever) get anything done? So I will spend the night before making mental to-do lists, having long and protracted arguments with colleagues, listening to endless random ear-worms, etc.

Y'know - like YOU ALL do.

Which came first - the DMD or the Tuesday meeting?

As an aside, I've always LOATHED Tuesdays, even as a kid.

Think about it: on Monday, you can have the whole, "Did you have a good weekend?" conversation; on Wednesdays you're half-way through; Thursday is practically the weekend; Friday actually is.

But Tuesday is all on its own - adrift, miles away from the nearest Good Time.

Anyway, it'll soon be Christmas.

here's an odd thing

Here's an odd thing I've noticed recently; so I'm putting it out to the crowd.

It seems like, on the night when I do my injections, I have real problems getting to sleep. No matter how tired I am and no matter how busy I've been in the day.

I think that some of it is down to feeling that I need to go to the toilet, but being unable to 'go'. I know I should force myself to go to sleep, in the hope that I'll wake up before any 'accidents' occur but it's pretty distracting.

So do any other people have Rebif- or DMD-related insomnia? Do tell!

too much information

*with apologies to any family members stumbling on this!*

Long-time visitors to this irregular blog might remember that one of the reasons I was concerned about starting Rebif was the fact that Emma and me are of an age where we start to think about having kids.

Most of the research looking into the effects of DMDs is focused around the possible effects they might have on pregnant women - it makes sense, especially when you take into account the fact that statistically there are more women than men with MS.

So when we spoke to the MS nurses and neuros, we got some fairly confusing advice before one of them stuck his neck out and said there were unlikely to be any problems.

The long and the short of it is that we're pleased to announce that we're having our first child in April. We had our 20 week scan yesterday and everything is going fine so far.

The TooMuchInformation aspect of this whole business was the fact that... well, how can I put this?

Being male you only have one real job in the whole getting pregnant-thing, only one thing you really need to bring to the party, shall we say.

Now, I never had any trouble GETTING TO THE PARTY. The problem was lack of sensitivity meaning that I could never FINISH.

*sorry for the ridiculous language I'm using*

I know that most people with MS suffer with this sort of thing - when I was first diagnosed it was because I had numbness and tingling from my gut down, so it shouldn't have been that surprising.

I guess the point of all this over-sharing is that it happens to us all; and that, if you're in a supportive relationship with someone patient, you will hopefully be fine.

Now all we need to do is get some rest while we can.

And some of you will have already done the maths and worked out that we were pregnant when we went to Alton Towers in the summer. I wonder why Emma felt so sick after going on all those rides...!

anniversary

Hey. Just a quick post to mark the anniversary of my return to work after my second relapse.

This year has been pretty interesting, not least because I started taking Rebif. Yes, it can suck doing injections. But on the whole it beats the hell out of not being able to walk.

See you on the other side of our INSANE Government's Spending Review!

alton towers - user review

After trying endlessly to get a cheap last-minute deal for our summer holiday, we've decided to holiday in the UK this year. We realised that there's been loads of things that we've wanted to do at the weekends. So for two weeks, we're doing all the weekend-y things we've never got round to.

So far we've had a lovely day at Chatsworth in Derbyshire (best cream-teas around), next week we're going to see a show and various exhibitions in London, and yesterday we went to Alton Towers - we've been on about that since we got together, so that's been seven years coming!

We booked our tickets online the day before, so we got 20% discount off the on-the-door prices - and the disabled/carer ticket prices are pretty reasonable, anyway.

On the whole Alton Towers does try to do right by disabled people. Blue badge holders get free parking close to the entrance (I was shocked to realise that 'normals' have to pay £5 - shouldn't that be included in the ticket price??) and if you take your blue badge to the ticket booth, they give you a red wristband (blue for carers), enabling you to queue-jump.

This takes a bit of getting used to - it goes against the English obsession with queues and fair-play - but this was brilliant, especially if you're like me, and standing still for long periods brings on fatigue.

The signs for the disabled access points are sometimes a bit hidden. So there were a couple of times we were halfway to the front of a 'priority queue', only to be told to go back round a quicker route. NOTE - The disabled entrance for most rides is through the exit - so you have to get past disoriented people who have just come off!

I'd forgotten how bloody massive the park is - we eventually twigged that we could get around pretty well using the Cable Cars between sections. And it was often difficult to know where you were and where you were headed - a few extra signs here and there wouldn't go amiss!

The main issue I had was the lack of seated areas, other than the cafés and eateries. I don't know if this because of an assumption that DISABLED means WHEELCHAIR and I know I'm lucky that (so far) this isn't an issue I've had to deal with.

But there is really NOWHERE to sit to have a rest for five minutes. Unless you're a smoker, in which case there are a few benches scattered around. And as I'm a typical ex-smoker (i.e. really intolerant of anyone smoking in my vicinity), that's not ideal.

And as an aside - if you see someone walking towards you using a walking stick, give 'em a bit of space! Jesus, the only place I've been where people made an obvious effort to give me some space was New York - in the UK it's almost like a homing-beacon for mouth-breathing idiot children. Phew, rant over.

So we had a really good day and Alton Towers has really tried to make itself nice and accessible for everyone. Without the queue-jumping wristbands, we probably wouldn't have gone at all - it would have been too much for me to stand for that long (some queues were 50 minutes!). They really did make it possible for us to have a great day - plus we managed to go on all of the most popular rides in a fairly short period of time.

I think we're going to send the park an email with just some gentle suggestions of how they can make it better for everyone.

This weekend we're going to the National Museum of Computing - let's see how they do!

brief dispatch

Today you find me a couple of days after my 37th birthday, spoilt rotten, following a weekend where I've been surrounded by the people that I love.

Last week those same people helped us to move into our new house.
(incidentally, I found I was able to do more than I - or anyone else - thought I would)

Times like this, you really have to be thankful for what you have.

Yes, I've had two relapses over the last year or so. And yes, I am the only person I know who is my age and who has a chronic disabling condition, which can sometimes lead me to dwell on minor irritations, which then take on greater significance when I bang on about them on my blog.

But:

• I'm on a recommended course of medication which (so far) isn't doing me any harm and which (so far) hasn't cost me a bean
  
  
• I have the support of the MS nurses of the QMC, as well as a team of neurologists
  
  
• I'm getting financial support for journeys into work, as well as snazzy office equipment
  
  
• I've had the benefit of Physio sessions and my bizzaro orthotic support, which does help but can get a bit uncomfortable if I wear it too long (I know, big deal)
  

Basically, I shouldn't complain that much, so for now I'm going to concentrate on sharing the benefit of the experiences I've had.