where do i begin?

This could be a bit of an epic post!

First things first, the Indietracks gig went pretty well! Long-time visitors will know that the reason for the blogs title is the fact that I used to play in loads of bands. When my MS symptoms first came up, the tingling in my hands put a stop to most of that.

So when my good friend asked me if I'd like to play with his band Frankie Machine at Indietracks, we embarked on a series of rehearsals the likes of which I've never encountered!

The festival itself was really nice - very mellow, and laid back, plus i got to see some mates from back in the day.

We were playing in The Church and our set went really well - and it's not just my memory playing tricks, I've got a recording of it and everything!

Shortly after that, we took Evie away for her first holiday. We rented a cottage near Robin Hoods Bay for a week over our wedding anniversary.

It was great being away as a family but, to be honest, Whitby wasn't the most accessible place in the world - not with a pram and a disabled dad with a walking stick.

For a start, Robin Hoods Bay is basically one road which has something like a 1 in 25 gradient (or something). And Whitby itself is very cobbly - gawd knows how people can get around there with wheelchairs, walkers and mobility scooters, but there are a number of disabled parking spaces there so I guess people do!

The really shit stuff started TWO HOURS after we got home...

(To be continued... believe it or not!)

headlines

slack blogging... parenthood...blah

I'll tell you what really is a shit business? Breast Feeding - yeah I know it wouldn't be a massively filling meal for Evie if I did it...

But there's SO MUCH pressure on women (especially in the UK) that 'breast is best', that if for some reason it doesn't work out, a lot of the young mums we know drive themselves to distraction trying to force the issue.

My tuppen'orth: Just because something is NATURAL, it don't necessarily follow that it comes NATURALLY.

(see also: CHILDBIRTH)

So what else has happened?

Well as mentioned before, it's crazy how good you can feel even with disrupted sleep. I'm pleased that I feel I'm doing some good in the parenting stakes.

The best thing? This may sound weird from a blogger who mostly analyses his health, but...

It's really great not to be the most important thing in the world.

Seriously. Because this little person needs constant observation and entertainment, I don't have so much time to think, "oh what's that little twinge? Is it a relapse? Or a new symptom?"

Basically, I have to get over myself. And it's great.

Also in dispatches:

1. I'm playing guitar and keyboards for my mate Frankie Machine at Indietracks on Sunday - we've been rehearsing like mad for the last few weeks, I'm really looking forward to it. Just glad to be able to play really!
   
2. I went for an eye test the other week and they offered me the opportunity to have a really detailed photo taken of my retina. As I know that many people with MS can have issues with their eyesight, I thought I'd get it done. I should apologise up front for that fact that I didn't get a copy of the images!
   
   Basically, it's mildly uncomfortable - like the air-puffer-glaucoma test thingy - because you have to really widen your eye. One of them was absolutely fine, the other one had a dark shadow on it.
   
   The optician didn't really think it was anything to massively stress about (mostly because I don't have any other symptoms) but I'm trying to sort out an Opthamology appointment at the hospital to get it checked out properly.

More to come after my (hopefully) triumphant return to the live arena!

update

Evie Rose Woodward was born at 5.30am on Tuesday 12 April, weighing 8lb 5oz.

Since then, life has become a dizzying carousel of nappies, cooing, and snatches of sleep grabbed when we can.

Our families have been fantastic, helping out loads. My health has been ok - it's amazing what you can do with a good couple of hours of solid sleep!

Fingers crossed that continues.

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...!