Friday 25 September 2009

steroids 2.3 PLUS a quick question

Last day of steroids yesterday. Had to wait a wee bit to get plugged in and ended up sat next to a poor lad who'd had THREE MRI scans - to be perfectly honest, one was enough for me.

The doctors had told him that they'd found 'something' on his scans but he hadn't been told yet. Not great. He was 'self-medicating'; he said that he was an alcoholic as it was the only he could control the pain in his skull.

Eventually the question came that I'd been dreading (we'd already covered my minimal football knowledge): "So. What are you in for?"

"Well, I've got Multiple Sclerosis and this is the third day of steroid treatment to get me over a relapse", I said.

"Oh God. I'm sorry mate. How long do you think you've got?"

Thanks for that, Debbie Purdy!

Steroid playlist, Day 3

They Might Be Giants - Turn Around
Guided By Voices - Glad Girls
Silver Jews - Tennessee
The Bad Plus - Tom Sawyer
Frank Zappa - Peaches En Regalia
Vampire Weekend - Mansard Roof
School of Language - Rockist
The Coconut Monkeyrocket - Periwinkle Pussycat
David Bowie - Sound and Vision
Deerhoof - Rrrrrrright
Deerhoof - The Perfect Me
The Beta Band - Dry The Rain
Belle And Sebastian - Another Sunny Day
Quick question
How many times is it acceptable for me to be contacted by my employer when I'm signed off work? Had a phonecall and one email yesterday, two emails today, all of which could have been either (a) ignored or (b) dealt with by somebody else. What do you think?

Wednesday 23 September 2009

steroids 2.2

Monday was one of those long days that you sometimes have to spend in hospitals, hanging about. Now, I love the NHS - I think it's one of the few truly great things that we have in this country - but there are problems. Mostly that there's frequently not enough staff, and those that ARE in are totally knackered, chronically overworked and, let's face it, underpaid. The idea that free, quality health care is a basic human right is a beautiful thing. Let's not feck if up.

Anyway, we had a really good chat with the MS nurse, which covered everything from Physio, Disease Modifying Treatments, accupuncture, oxygen tents and Hopi ear candles. It was a good chat but she didn't think steroids would be adviseable or effective, so soon after my last treatment.

Neither did the doctor who did my steroid assesment. Until he checked my strength, that is, when he just said that, actually, it might be a good idea.

This is when the NHS trouble started. I didn't get to see the doctor until 2 hours after my scheduled appointment. By that time, there was only one nurse left, and she was concerned that, if I started my first steroid drip, there'd be no-one around to "unplug" me after it'd finished (I've got to say both the doctor and this nurse looked absolutely knackered).

So, we started the steroid treatments the following day - hello catheter in my wrist, annoying hiccups, manky metallic taste in my mouth and one mostly sleepless night. But I am getting more control over my leg, more sensation in my hands and generally feeling pretty good so far.

Here's the list of tunes I listened to whilst having drugs pumped into my arm today!

Tortoise - 'Gamera'
Yo! MAJESTY - 'Club Action'
Weezer - 'Pork And Beans'
Beck - 'Timebomb'
The World Record - 'We're #1'
The World Record - 'Serious'
The Cool Kids w/ Don Cannon - 'Hammer Bros.'
Wilco - 'Deeper Down'
Tom Waits - 'Buzz Fledderjohn'
The nurse we saw on Monday saw me today and said that I'll be getting an appointment with a physio soon, plus I'll be seeing someone about some disease modifying drug treatments.

As my MS has been pretty benign so far, I've always been told to put it off taking DMDT's as long as possible. Apparently they're trying to start people on earlier these days, pretty much at diagnosis. I'll keep you posted!

Wednesday 16 September 2009

breaking news

Good news:
FINALLY made contact with some occupational therapists that I'd found on a website. One of them actually pointed me in the direction of my local PCT (Primary Care Trust), which was very cool. Especially considering the fact that the PCT will be free.
I've had a couple of chats with them and they've had some experience of working with people with MS. I've asked my GP to refer me to them, so we'll have to see what happens next. Hopefully they'll see me at work AND at home. I'll keep you posted.
I had a check-up with the MS Nurses at the QMC a couple of weeks ago. They were really pleased with my progress - apparently most people that have relapses like the one I had in May can take up to 9 months to recover; at that point I felt 60-75% better.
Well, the next few weeks were spent doing the marketing for Derby Festé, a 3-day arts festival which took place between 4 and 6 September. Pretty hard work, and I had to spend quite a bit of time at the events that weekend. The Thursday after, my leg started dragging, fatigue set in, and now the whole of my left-side (arm and leg) is like a gigantic side of beef that I'm carrying around with me.
You find me on day 5 of what almost certainly appears to be a full-on relapse. Or at the very least, Relapse '09 Part Two.
Because of a theory that one of the MS Nurses came up with, for a surreal couple of days we actually found ourselves praying for a urinary infection; the logic ran that my dose of Swine Flu might have extended my relapse from May, and made me easy prey for anything going around. But I got the results back today and they came back negative.
I'm going to see the Nurses for an assesment on Monday, maybe for another round of steroids, maybe to talk about starting a course of disease-modifying drugs and daily injections.
Also, I guess there's a chance that my condition could be up/down-graded to secondary progressive. But we'll cross that bridge as-and-when.
It really IS a shit business.

Sent from Steve's iPod

Friday 11 September 2009

bad blogging

Yeah, yeah, yeah... Frankly appalled at how long it has been since I wrote anything here. I will try to write this weekend as there's lots of stuff cracking off - some good, some not so good.

In other interwebhighway news, I had a "cease and desist" from Blogger for my other blog, Domino Rally. This was the MP3 blog I set up for the members of my old band Johnny Domino so we could share songs and personal favourites with the world (well, our mates, really). It was always done in a very respectful way, with links to artists and to shops for people to buy stuff, and we NEVER posted full albums, no matter how obscure it was.

I never kidded myself about the (il)legality of what we were doing and always told myself I'd knock it on the head if I ever got a C&D note. But I had a minor freak out and deleted the whole thing (NB I'm renowned for my overreactions).

For the last couple of years, it's just been me posting there, and I kind of miss that side of things, so forgive me if some avant-garde jazz or some begins to appear here - it's just a desire to share.