Friday 31 July 2009

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.

Monday 27 July 2009

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.

Wednesday 1 July 2009

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!