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...

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

... HOLY SHITBALLS, I'M FECKING EXHAUSTED.

(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!

back to the lake

(not really but this was the most relevant song title on myPod for the name of this blog - by the mighty Guided By Voices, obviously)

So a couple of weeks back we went away for a family holiday and we went to the Cotswolds - readers with long memories will recall that the Cotswolds was the place where I started to feel the beginnings of RELAPSE2012.

I must admit that I felt some trepidation but this time we were going with some support - Mrs Domino's parents and wider family. And it was great.

The weather was pretty, erm, British, but it didn't keep us indoors and despite that we spent a lovely week in a lovely part of the UK, walking about and looking at lots of lovely things. It was lovely.

We were close to Broadway, a place I mentioned before - if anything, there are EVEN MORE disabled parking spaces than I remember, and there are at least TWO Gold-medal-winning public toilets there (I must have missed the awards ceremony), plus dropped-kerbs a-plenty.

It was as great as I remember, plus I'm slightly more mobile than I was when I was last there. I even managed to walk up Broadway Tower this time.

Anyway, it was a great break and good to have others around to take the pressure of me and Mrs D. Travelling down was good this time too (there were MANY toilet stops last year...). ONWARDS AND UPWARDS, eh?

The return to work has been tiring, not helped by having a breakfast meeting on the second day. I've spoken before about my hatred of meetings but this is a whole new FRESH HELL. It was quite pleasing to see that every one of my colleagues who was in attendance was every bit as knackered as me for the rest of the day.

As such, I've not been managing to walk into work as regularly as I would've liked but I really need to stop beating myself up about it. Funnily enough, it's a lot easier to do it when the weather is good (and similarly easier to just jump in the car when it's p*ssing it down).

Who would've thunk it?

I've started taking Vitamin D - is it making any difference? Who knows! But I'll keep doing it in the hope that it helps.

Fellow blogger and regular commenter Swisslet wrote a really interesting thing the other day about MS and weight-loss. This is something that has happened to me recently - as I commented to that post, I was a bit pudgy growing up but have recently gone down a trouser size for the first time in ages. I'm also the lightest I've been since school, all whilst eating like a fiend.

A quick Google to see if this was another, less-documented side-effect of MS threw up...well, not much, other than this thread on an MS Society discussion forum - and this comment in particular:

My husband was losing weight and had no appetite so our physio suggested we see our GP and ask for blood tests to be done. The result was he has an underactive thyroid, which usually causes weight gain, but in some cases causes weight loss. Then our GP told us it is quite common for people with MS to have trouble with the thyroid which is another immune system problem, which of course no one tells you about.

Interesting, no?

the magic number

Just a quick post while I try to eat my lunch – apologies for any spelling mistakes! (more than usual anyway).

So today I called my GP for the results of my Vitamin D test (which I had over a month ago).

She started off by saying that neither her or a colleague could find any information about Vitamin D and its effect/impact on MS.

To which I said that it’s spoken about on the MS Society and MS Trust websites for a start.

So eventually she said that the average result for healthy people is between 50 and 100 (sorry for the vague numbers, she probably told me the unit of measurement but I was quietly fuming by this point).

Anyway my score is 38 – a little over a third of what it should be (i guess) but not low enough to be deemed 'insufficient' (which is 25 and under).

She said that she wouldn’t have a problem prescribing some supplements but that I could go and talk to a chemist to get a steer.

Thanks for that (another slow hand clap,please).

So my question to you is:

• Do you take Vitamin D supplements?
• If so, what dosage do you take?
• How did you come to that decision? Finger-in-the-air guess or consultation with a GP / MS Nurse?
• Should I just go and live in Italy instead?

I know that I’ve had some comments about this before (which seem to back up the European Food Safety Authority view that 4000 can be taken safely) but all help / guidance gratefully received.

the horrible truth

Feel (and hear) my pain...
In my defence, I had to submit three news stories in advance to discuss. When I arrived at the station, I was kept waiting in reception until 11.14 (I was due on at 11.15) - when I was dragged up to the studio and plonked into a chair behind a microphone.

Quick hello to the presenter (I've been on with her before) and we were off.

The three stories I decided to talk about were something to do with the local theatre, then something about the new Culture Secretary (as I said before, Derby's Cultural Elite), before we talked about the thing I really wanted to get onto - MS Awareness Week.

Obviously, she decided to flip the order and go straight for the jugular, which is why - IF YOU CAN BEAR IT - you'll actually be able to hear me flapping. In the break in our chat she did say that she would've told me what she was going to do if I'd been brought into the studio earlier.

Man, do I really use the word "STUFF" that much? And me a fricking English Graduate.

If you listen carefully, you can actually hear me physically groping for words. I think I even managed to avoid describing what MS actually is - informative. And I seemed to get really stuck on the word AWARENESS.

Anyway, it makes me want to die of embarrassment and I forgot to mention so many things but people tell me I did OK.

By the time I talked about the other stories it was much more chatty - like I'd warmed up. Which is what I would have ideally done if I'd left the MS story to last.

MsCrankyPants - if you're reading this, I'm guessing that you'll also have a Vanessa Williams power-ballad in your head right now - "Just when I thought my chance had passed, you go and save MS to last"

Like I said, Cultural ELITE.

In other news, I called my local GP surgery to find out the results of my Vitamin D test - they said there was a note that I needed to either see my doctor or make an appointment to have a phone conversation with her. So I'm calling her Wednesday lunchtime - should be interesting.

incoming broadcast

As a member of Derby's Cultural Elite (HA!), I often get approached to go on the radio and HOLD FORTH about STUFF.

I was contacted this week to see if I would go on the mid-morning show on BBC Radio Derby tomorrow (Friday 2 May) to talk about three news stories from the past week.

So I'm going on to talk about some STUFF and also MS Awareness Week.

I've gone back and forth about how I'm going to do it, or if I should do it.

But I kind of think that this is (in some form) activism - showing a different face to MS and talking about this ghastly condition in a different way.

And it's not as if I'm ashamed of it, or backwards about coming forwards generally.

So we'll see how it goes - I'm on the Mid-Morning show (so no plugs for the blog, unfortunately!) on BBC Radio Derby at about 11.15am.

I've been talking to the MS Society and the MS Trust in order to get prepared - so hopefully I won't completely ARSE it up. I've been on loads of times before but not talking about something which means so much to me personally.

Wish me luck!

and in other news from the real world

The MS Society has launched a new campaign in order to highlight the differences in care provision throughout the UK.

As part of what they're calling the MS Lottery, their figures state: 

• 6 out of 10 eligible people with MS are not taking treatments that could reduce relapses and slow progression – and this figure varies significantly across the UK, rising to 7 in 10 people in Wales

• Only a quarter of unemployed people with MS who need support to find paid employment are able to get it
• Only a third of those who are really struggling financially get sufficient emotional support, compared to nearly three quarters of those who are really comfortable.

This is clearly a terribly unfair situation. I knew I was lucky to live so near to one of England's centres of MS research (in Nottingham), where there is also a fantastic team of MS Nurses.

But I didn't realise I was part of the lucky 40% of people with MS. And that's shocking.

To this end the MS Society is calling for people with MS to have fair access to the treatments and services they need, when they need them, wherever they live.

Join the campaign as part of MS Awareness Week here.