Wednesday 19 June 2013

sixteen and time to pay off

A relatively quick post because yesterday I had another appointment at the Urologist.

Which meant that the weekend of my 40th birthday (which was lovely, thanks), I had to fill in another VOIDING CHART

It was no biggie really - the nurse told me previously that it was more as a guide to frequency, rather than setting a gold standard for accuracy

Anyway, since our last meeting I've been trying to go for a little longer and to ignore my pesky misfiring nerves - and the nurse was pleased with my progress. 

The following conversation is pretty much verbatim:
Nurse - You've basically got three options now. One: you can keep doing what you're doing now, trying to go a little bit longer when the initial urge hits, in order to try and make the volumes increase when you do 'go'. 

Stevedomino - OK. So that's the 'less easy' option...

Nurse - Two: there are drugs which you can take that can support the bladder retraining process. I know you're taking Oxybutynin...

Stevedomino - Actually I stopped taking that a few months ago. One day I just forgot and I decided to keep going. Anyway, with my Rebif and Gabapentin, I tend to think that I take enough drugs. So if I can avoid taking MORE that might be best. 

Nurse - OK, well that's fine. There is a third option. Have you ever heard of a TENS machine?

Stevedomino  - Oh yeah, my wife had one for use during the early stages of labour. 
(As an aside, I remember thinking at the time that a machine which gave me short bursts of electricity was some kind of IDEA OF HELL - I have enough trouble with pins and needles and spasms. But anyway...)

Nurse - So you know what they are and this works in just the same way. You have to use it for so many minutes a day, ideally for a period each day.  And in collaboration with all the other things you're doing, it can have a positive effect on bladder control...

Stevedomino - Well, that sounds pretty interesting...

Nurse - However, you can't wear the machine in the same way your wife did. Because it needs to affect you bladder, the electrical current is transmitted via a large probe which you insert into your back passage...

[epically-long pause] 

Stevedomino - Oh... So tell me about the first option again?
I must say it gave my wife quite a laugh when I told her about this option. And she has already said that she might give the nurse a call the next time we have a falling-out:

Actually, Steve has been thinking and he would like to try the anal probe... no, he can't get to the phone right now... no, just send it for my attention...

I hope my rampant oversharing has spread a little sunshine in your day too!

Also, the nurse was a firm believer in the theory I was talking about last time...

Thursday 13 June 2013

don't want to be one of THOSE moaning MS bloggers but...


(OK, that's out of my system)

It's the last few days of my 30s. I'm not TOO bothered about turning 40 - my wife would be only too happy to say that I'm almost perpetually grumpy so I'm already well into old fart territory.

We all need a role model
My 30s have been pretty tumultuous - like most people, I guess:
  • in my 30th year I ended a relationship (which involved selling a house and moving back into my parents' house. Luckily they're amazing people so this was actually a great time for me! I just wish I'd saved more money in this period. Anyway...)
  • I also started a relationship with the woman who would eventually become my wife
  • I was diagnosed with MS
  • I was made redundant from my job - a year after diagnosis (unconnected) and two months before I got married. I never stopped working, doing some freelance *stuff* before getting my current role as a fully paid-up member of the local CULTURAL ELITE.
  • Bought another house
  • Became a father
There have been other milestones but these are the key headlines!


So remember here when I was being a little snarky about Merck Serono and their MySupport swanky magazine/app? Well, there's a (small) portion of Humble Pie coming up.

The other night I'd just done my Rebif injection when the machine just shut down. Kaput. No light's on, no-one home.

I called the MySupport line and left a message (for some reason I was very late doing my injection - probably some wild party or gallery opening... *ahem*). The next day they called me up, and yesterday I got my replacement machine.

Nice one.

ALSO - Flicking through my latest MySupport magazine, I came across an article about MS-related Cognitive issues.

It was full of all kinds of hints and tips (writing lists? CHECK. Putting keys in a designated place? Hmm... I'm working on it) but the bit that really struck was a pull-out box which said:
Knowing that we might develop memory problems can sometimes make us more aware of every little lapse, but try not to worry - we all forget things sometimes! 
Not rocket science, but it really got me thinking - which came first, the Cog-Fog or the expectation that you will suffer from Cog-Fog?

Similarly, which was first, my bladder issues, or reading about the link between MS and bladder issues?

I'm not disputing that there's a link - but by focusing my MIND on the potential issues, have I almost created the problem before it was due?

By reading all these MS blogs and going, "wow I've got THAT symptom, that makes me feel less like a freak.... but I haven't got THAT symptom... yet... which concerns me", are we convincing ourselves of the problems which may or may not be "in the post" before we necessarily need to?

I'd be interested to hear your thoughts - as I said, I'm not disputing that there's a link between MS and *SYMPTOM Y*.

And as usual I don't really know where I going with this. At the very least it's some kind of weird Audience Development project - "don't read this, it's bad for your health" or something.

Well played, Merck Serono - you've won this time. But I'm still watching you!