dignity... always dignity

As I mentioned previously, one of the things we really wanted to talk about at my MS MOT was my ongoing issue with my bladder. Longtime visitors here may remember that I've been taking Solifenacin for a couple of years now (Oxybutynin before that) and have been through a bit of light Bladder retraining - who could forget my self piteous bellyaching about completing a Void chart?

Anyway, I've been feeling even more put upon recently with endlessly numerous trips to the toilet, before taking even the shortest journey. It's been getting harder and harder to leave the house, especially if I (or we) need to be anywhere at a particular time. And I can't remember the last time I was able to sit through an entire film at the cinema without having to nip out. Frustratingly, when I do go, although I do GO, it never feels like I've GONE enough.

As I've had the same issues and have been "dealing with them" for at least three years (if you can call planning all travel by toilets along the route "dealing with things"), the fact that I haven't had a UTI by this point is frankly miraculous.

I've recently been through a period where I've had to get up to use the loo in the night. But I've always been able to put this down to a variety of other things - too much booze, drinking anything too late, work-related stress. Even taking into account the fact that I haven't had any "accidents", it needs sorting out.

So earlier this week I found myself back at the QMC in Nottingham. The MS nurse I saw last week had suggested that I might be able to increase the dosage of Solifenacin which she thought might go some way to solving the issue.

Now bear in mind that before my appointment I had been to the toilet:

• Twice at home
• Once at my parents' house on the way
• Once at the hospital

All things considered, I was fairly confident that my tank was as close to empty as possible.

So I'm sure you'll appreciate how surprising it was to hear the urologist say that my bladder was close to full - holding around 380ml.

The long and the short of it is that there's no benefit from upping the dosage of Solifenacin and no other drug options.

So in January I'll be visited at my home by a nurse who will talk me through intermittent self-catheterisation. Not really what anybody wants to hear.

But the urologist said that these issues won't go away, not the way I've been managing them anyway. And using a catheter once a day should give me a bit more control and maybe get my life back.

(I know that sounds dramatic but even at this stage it really has had a massively limiting effect on my life and the life of my family)

Even so in the walk from the clinic to the front of the hospital I went from frighteningly stoical about it all, to depressed, to full-on enraged, all in the space of 2-3 minutes.

I'm writing this with a couple of days distance. Now? I'm still pissed off about it.

I can talk a good game about certain things being necessary tools to get my life back.

• Walking sticks? I have used at least one every day for the past 5-10 years. But I still really hate them.
• Wheelchair? Sometimes necessary and often totally life-enhancing. But I hate it and will do anything I can to avoid using it.
• Self-catheterisation? I can see that this could really be beneficial - plus I know all too well the affect these issues are having on my day-to-day life. But I can't imagine anyone has ever been overjoyed at the thought of doing it.

Yes, I know there are worse things in the world that people deal with on a daily basis. And whining about this makes me sound like the sort of "poor me", cry-baby Bad News Blogger that I despise

More than anything I feel bad for Little Steve. We've had good times over the years!

I feel like a guy who's looking fondly at the family dog, knowing full well that in a couple of weeks I'll be taking him to the Vets to get his nuts snipped off. Does he even know what's going to happen to him??!

Whatever. Like always I shall prevail!

a picture from life's other side

The last day at work was every bit as weird as I'd expected it to be. And that's considering that I almost came to blows with a colleague the day before whilst clearing my desk

This actually involved throwing away a lot of documents that I haven't looked at in all the years I've been there. There was a lot of crap there, but some great finds including:

• A sheet with instructions about Proper Apostrophe Usage (liberated from my first real post-uni job when I left there over ten years ago)
• Inexplicable examples of work from random print agencies.

I was determined to keep it low-key - the whole situation isn't really something I want to be celebrating. I did get some nice stuff though, not least a bit of Bowie vinyl from my boss. He's a complete Bowie-nut, so we've had many conversations about Zavid's life and work over the years and particularly over the last 12 months, obviously.

So I'm sitting here on my fourth day post-work. The first day doesn't really count as it happened to be the day for my annual MS MOT. Key take-home from this was that when I mentioned I was trying out the OMS lifestyle, the nurse didn't run screaming from the room. In fact, she said that she'd read the book too, and that it contained a lot of good convincing science. Which was good to hear.

Also good was the fact that my white blood cell count had started crawling back up - I've been having monthly blood tests as this is a standard side effect of Tecfidera.

We had a chat about my perennial bladder issues which have been rearing their head recently. There wasn't much else we could do about it though, as the bladder scanner was being fixed (the physio was off too, and the nurse we were talking to was the only MS Specialist nurse in that day).

After a bit of monkeying-about with my walking sticks (they've been giving me a bad back. SPOILER ALERT - they might've been set too low) and (fingers crossed) a final monthly blood test, that was it.

Yesterday and today I've had a crash test in how bloody exhausting it can be trying to stay on top of maintaining a house.

When I picked Ms. D up from school yesterday, a friend asked me how I was getting on (she and her partner know all the details of my recent situation). I said that prior to this, the idea of being a house husband was really attractive. But right now, I'm exhausted and scouring the job pages for anything to fill my days!

the blue bus is calling us

* post title from "The End", obvsly.

Just waking up on this, my last day at work. Mixed emotions, really.

The last year has been dreadful and I'm looking firward to just stopping for a bit - no regrets there.

But it's undeniably a scary biz.

I'm hoping for a low-key exit - but I've been picking up that my "a few drinks in the pub next door" edict has been.... not quite overruled, more expanded like a deluxe-edition CD reissue of an album that you haven't listened to in a while.

I hope there won't be any speeches. I certainly won't be making one, lest it becomes reminiscent of Father Ted's acceptance sppech for the Golden Cleric award.

Let's be honest, this is the leaving speech that everybody wants to make, right? Mixed in with Scarface. Just me?

the poor historian

I had a brief conversation with someone on Twitter the night before my interview last week. She'd shared something really interesting which I retweeted. We had a brief conversation the following day and I said that I'd recently read something online which was about the different personality types of people with MS. I planned to dig it out and share it with her as it kind of backed up her point.

It took a couple of days and several hours rooting around in my browser history to discover that the article I wanted to share was the one she'd shared in the first place.

Like I say, the first time I read the article was the night before my interview so my being distracted might be excusable.

But seriously. What a div.

Anyway, the article, "Who Is The Poor Historian?", appeared in the Journal of the American Medical Association in 1984. I reproduce it in full below because I think it mirrors a lot of things I've noticed since I was diagnosed, both in myself and others.

Personally I can be all too ready to kick off if a medical professional doesn't appear to be listening. At the same time I've always recognised that I can be like the third patient in the penultimate paragraph who is too eager to minimise or deny symptoms.

Similarly, I've met many people who can go the full on drama route (as an aside, I wince when I think back to the early days of my diagnosis when I went to the Neuro team in Nottingham practically begging them to give me steroids because I had pins and needles in my hands. True story).

Yep it's another example of somebody pointing out a personality trait which I've long recognised in myself. And making it feel like a huge, eye-opening epiphany. Go figure.

Anyway, this also serves as a bit of a kick-up-the-arse as I have my MS MOT next week. Let's get real.

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In other news, I didn't get the job. I'm waiting for some feedback as I felt like I did a really good interview. I certainly didn't embarrass myself, and I'm still proud to have got an interview with a national, big-deal organisation. Plus I drove 109 miles there and back to attend the interview.

Anyway - heartfelt thanks for all the good vibes and well-wishes that I received here and elsewhere. It - genuinely - meant a lot.