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!

back to work

Well, that extra week off work has finished now, so I'm typing this in my lunch break on my second full day back at the grindstone.

(to let you into a secret, I actually came into the office for a couple of hours on Monday and did a bit of work from home on Tuesday - don't tell my GP)

Anyway, things seem to be OK, although I had a severe case of 'heavy-leg' yesterday afternoon - I put this down to the fact that I haven't done a whole lot of walking recently, but it was a bit of a bummer nonetheless.

My experiences over the last month or so have only reinforced the fact that I don't want to muck about putting crap chemicals into my body unless absolutely necessary. The course of steroids was great (near miraculous!) but the whole business with the Amantadine was just a real, unnecessary pain in the arse.

So for now I'll "keep on keepin' on" as Curtis Mayfield said.

And anyway, Amantadine is a drug that was designed for people with Parkinson's. So many of the treatments for MS are ones 'borrowed' from other diseases with similar pathways. I pray for the day when it's announced that this condition can be cured by a glass of Lucozade and two Paracetamol.

Until that day, it's regular rest, healthy-eating, responsible alcohol-intake and Yoga.

My God, if I met someone like me at a party, I would hate myself.

and the nurses say...

... I should reduce the dosage today and tomorrow, then stop taking the Amantadine completely. So hopefully I'll be back to normal soon.

Time to look into other ways to manage fatigue.


PLEASE NOTE: This is just my experience of this drug, anyone else might get along with it just fine.

no major effects... but side-effects...?

I should just say that, although I haven't noticed any major effects from taking Amantadine (see yesterday's post), I have realised that I've been having some fairly intense side-effects.

Anxiety? Check.
Shortness of breath? Check.
Mood-swings and depression? Check.
Tiredness and insomnia? Double-check.

And those are just the ones I can think of off the top of my head without cribbing off the information leaflet.

I'm sick of feeling like this and not seeing much benefit as far as my energy levels are concerned, so I'm going to call the MS Nurses for some advice later on.

I am, as the legendary John Shuttleworth says in the following song, Up and Down Like a Bride's Nightie.

so, where were we...?

You find me at home writing this having been signed off work for another week (at least). Here's what's been happening:

I went back to work last week at the end of my two-week doctor's note and decided to just get it over with and tell everyone at work about my condition.

In my head I had a perfect vision of how this was going to go - ladies sobbing and offering hugs, men fighting back tears and punching me on the shoulder. Well this wasn't perfect - the only person in tears was me - I can talk quite dispassionately about 'demyelination' this and 'steroids' that until the cows come home. But when I have to look someone in the eye and say, "this is what this is", I tend to lose it completely.

Take my advice - if you're going to do this, make some notes beforehand.

Everyone has been cool about it so far; apart from the Health & Safety Officer who wanted to use me as a guinea pig in their Evac+Chair training, and even he was coming from a good (if misguided) place.

The first two days back were rough - lots to catch up with and my boss was going away for a holiday, so we had to hand lots of stuff over; meaning that I ended up working a couple of really long days. It was only on Friday evening when I was dragging my leg back home that I started to think that maybe I'd gone back to work too soon.

Back in the real, non-work world, things have been ok on the whole. I've started taking Amantadine to help with fatigue - I can't say I've seen any major effects (good or bad) so far - but it's only been four days. Although I did manage a two-hour shopping-shift in Marks & Spencer's on Sunday without complaining once.

And then last night, our bedroom was insanely hot and my mind was racing all over the place with work stuff. All of which adds up to one sleepless night, the start of some slight relapse-like feelings, a trip to the doctors this morning and another sick-note.

The doctor was shocked by how quickly I'd returned to work and tried to give me a note for two weeks off - we talked her down to one week. I suppose if I've learned anything from the last month, it's that I sometimes need to listen when my body is saying, "take it a bit easier".

An aside:
Woefully inappropriate music overheard in the doctor's waiting room this morning - Norman Greenbaum's Spirit in the Sky ("when I die and they lay me to rest" etc.) followed by the Bee Gee's Stayin' Alive. TRUE.