slippery when wet

So last week, we went for a holiday. It was really nice but as mentioned before I was having some killer mobility issues.

We were staying in little cottage in the Cotswolds - ooh, accessibility tip! The pretty village of Broadway is a dream:

• Award-winning toilets!


• Dropped kerbs all over the place!

...so that was the good day on our holiday.

The next day we had a bit of time in the cottage before going out to a National Trust property.

Now all through this holiday I had to remain aware of where the toilets were - I know this is something that us MSers have to deal with. But my 'urgency' has been getting pronounced and has proved to be more and more annoying - I've missed meetings at work where I've had to travel, for example.

This was the first time I didn't make it to the loo on time. I know, worse things happen at sea and all that but still pretty humiliating (thankfully I had a change of clothing with me).

So when we got home I made appointments with my GP and the MS Nurses to get stuff sorted out and to see if my lack of mobility was actually a relapse or not.

The MS consultant we saw was great. He said it comes down to semantics - you could call it a 'blip' and it's an off week or so. Call it a 'relapse' and it becomes a whole 'nother level of PROGRESSION.

I said that it felt like a much weaker relapse than the one I had two years ago, with the Rebif maybe putting the brakes on. As such he suggested I should see how I feel after a week of rest, rather than jumping straight into steroids.

He also put me on a course of Oxybutynin tablets to get my crazy bladder to calm the hell down.

A lot of the problems I'm dealing with at the moment are psychological. So I'm looking into doing some Cognitive Behavioural Therapy.

It's weird, but since I was diagnosed, I've never really had a chance to talk about it with anyone outside my family. It's kind of like, "ok, this us what you've got, call us if you need to, and good luck!"

Might be good to talk?

suck and blow

Ok, that's enough faux tension. Long story short (if there's anybody still out there):

- within 30 minutes of arriving back from holiday, we were joined by 2 groups of family members - one from my side, one from Emma's.
- each arrived with a separate story of a relationship ending - one a broken-off engagement, the other a marriage with two kids.
- in each case the people we're closest to (there's no nice way of saying this) were/are at fault.
- being the only link between two separate but weirdly similar situations put our little family in the uniquely shitty position of the fulcrum (or apex?) of crap.

I know, we're not the people going through it but at one point I started getting panic attacks. It was really stressful for all involved and I'm thankful for the fact that it didn't bring about a relapse.

Yeah, sucks for me right?

We had a really nice weekend away (this should've been the wedding weekend! I know, how cold are we?!) and Evie's first Christmas was great.

All of which made it difficult to write a MS themed blog - I'm still conflicted about what I'm writing this for.

However some issues (mostly toilet-related, I'm afraid) continue to cause me trouble. And within the last week I'm having some killer mobility problems.

So I appear to be looking down the barrel of a Relapse - with the type of MS I have it was always "in the post" (or "dispatched from the warehouse" if you prefer). It was only ever the actual 'date of delivery' that was in doubt.

But this is the first relapse I've had since I started my Rebif injections. And this is way lighter than my last one - like with the volume turned down, if that makes sense.

Got an appointment with the MS nurse team tomorrow so should hopefully have more of a clue then!

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.