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.