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?

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!

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.
BAD NEWS:
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.
AND FINALLY:
It really IS a shit business.

Sent from Steve's iPod

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 alt.country begins to appear here - it's just a desire to share.

diagnosis 2

(continued from this post ages ago)

So we left the hospital reeling. God knows how Emma kept it together enough to drive us home. There were a lot of "how dare he"s, and "who does he think he is"s. When we got home I completely lost it.

You see at this point, our only experience of MS was the mother of an ex-work-colleague who died. Plus people like the great Ronnie Lane and Richard Pryor who also carked it too early. I also remember awful adverts that the MS Society used to run in my Mum & Dad's newspaper -
images of people where the spine had been torn away or where a young man wets himself in a public toilet. Obviously I know now what they were getting at, but I can't think they were ever
very helpful for anyone who had been recently diagnosed. (their recent ad campaigns have been LOADS better)

At the time my dad hadn't yet retired and was paying into a private health scheme. So rather than waiting for an NHS appointment to come through, we went Private. I'm not proud, we were desperate for an answer.

Shortly afterwards we went for an appointment with a very jolly neurologist and I had my first stab at the time-honoured walk-in-a-line, touch-your-nose, push-against-my-leg, can-you-feel-this? aerobics routine which has become so familiar to me now.

He was very calming and recommended I have an MRI scan to find out once and for all what the deal was. If you haven't had one, I don't recommend it for laughs. But it beats a lumbar puncture.

A couple of weeks later he called me up - he told me there was nothing to worry about, that it wasn't a life or death situation but I should come in for a chat.

In a way, it was a relief to find out what the problem was after all this time when he said the words Multiple Sclerosis. Emma burst into tears and then we had to go outside to break the news to my parents - that was the hardest part of that evening. Like us, they were bewildered, ignorant and scared, but I guess everyone feels that way at the point of diagnosis.

The fantastic MS nurses at Queens Medical Centre in Nottingham were and continue to be a fantastic source of support and real information - if you've just been diagnosed, stay off Google and talk to a professional face-to-face.

But it should also be said that the physio we had seen way back at the start of this lengthy post was bang on the money. And for putting the idea into our heads right at the start of this process he really did us a favour.

more time off work

The thing that really bugged me about the early reports of swine flu was the way that they all said that the only people who would die were those with "underlying health issues".

Erm... *ahem*... hi there.

Not that I was wishing death on "normals". Just that, even though it worried me a little, it was really freaking my family out, thanks

Now I don't think I've got yr actual H1N1, but I've got enough symptoms to warrant 5 days in (sort of) quarantine with Tamiflu.

Other than that, things are going pretty well, 'health-wise'. The recent relapse has cleared up but the spectre of MS is weighing on my mind a fair bit. I know in the grand scheme of things I've got it pretty mild but I guess for most people it's the uncertainty of your future with MS which can drive you slightly mad.

keeping cool

Sitting in the theatre where I work as I write this draft on my lovely iPod. It was my birthday the other week and I figured I deserved a treat!

The theatre's the coolest space in the building at the moment, as the rest of the building is hotter than the sun. Which isn't exactly doing wonders for my concentration but never mind.

My employer has suggested that we look at government schemes which are available to make working easier for disabled people.

So, I had a totally fruitless chat with someone from Access to Work the other day. Basically he said there wasn't any point in them sending someone out to asses me when i'm feeling fine. I explained (as I had in my initial application) that my condition was Relapsing & Remitting and that I wanted someone to come and look at what could be set up for me for when I'm not so good.

To cut a long story short, they can only help when I'm feeling shit. Ironically, at times when work will be the last thing on my mind (and when in all probability I'll have been signed off by my doctor), they can pay for taxis to get me into work.

About 10 working days after I've reported another attack.

One of my colleagues (ironically a very spiritual man) suggested I should pretend to limp around the building. That sort of thing just brings about bad karma, so I think I'll pass!