Wednesday 28 March 2012

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! 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?

Monday 26 March 2012

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!