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.

Friday, 3 July 2009

by way of an explanation

AKA my glittering career

In the past, when the gaps between posts have dragged on, it has been because nothing has happened. 
This has not been the case this time. 

The appraisal process which I mentioned before has been going on since February. There have been many regular (interminable) meetings, which have felt quite personal and pointed (call me paranoid but that don't mean it ain't so). 

Somewhat annoyingly, way back at the start of this appraisal process I was asked if I wanted to reduce my hours or take a position with less responsibility. My pride got in the way and said that I wanted to step up and deal.

If I could go back in time, I would bite my boss' hand off.

At one point in the process (probably before another meeting) I told my boss that I was hating it and wanted it to be over. It was making me miserable and ratty, at work and at home. 

He said "I know what you mean. I'm going through it the same as you". 

To which I responded, "With the greatest of respect, I really don't think that you are". 

(If memory serves, that was the day my daughter put this plastic medal in my shirt pocket, where it remained for the whole day. She's a heartbreaker.)

FULL DISCLOSURE: in the middle of all of this, there have a couple of things which I have let slide at work. I'm not proud of this.

We recently had a board meeting and I was left feeling incredibly exposed and attacked. And I did not respond well (I should say that I put my head down, rather than standing on the table, giving everyone the finger and loudly suggesting they had known carnal relations with their maternal parent). 

Questions have been asked about my ability to do my job (I've been asking them of myself too). I was given a series of key tasks to achieve and I have met them - even going so far as taking documents away when we went on a much-needed holiday recently. 

On top of all this, the Board requested that I have a workplace assessment. Now I've had these in the past but they've always been from the view of supporting me. The employment law specialist on our board recommended this company:

Now in my pre-assessment research, my feeling was that this website didn't look like it belonged to a company that was overly concerned about protecting the rights of disabled employees. To put it mildly - no matter how conveniently (or even cynically?) multicultural the images on their website. This was the view shared by the Equalities Officer at my local council.

My boss said there was nothing to worry about, that the trustees needed to show the organisation had thought about all the potential outcomes, which would mean a nice healthy 'tick' in this section of our Risk Register.

But my last relapse was four years ago, and my attendance record is little short or exemplary. If all this is prompted by my recent performance, surely this should be a disciplinary matter; rather than being about my wonky genes and uncertain prognosis.

I was righteously nervous, so much so that I asked my dad to come along to support me - as suggested by my MS Nurse and the aforementioned equalities officer.

Despite a couple of hairy moments, this actually went ok. The assessor seemed to have some knowledge of MS and made some pretty good recommendations - timetabled work from home, regular breaks throughout the day, and MEDITATION. The first two of these will come under the heading of 'reasonable adjustments' that my employee will have to consider. The third one is for me alone.

Right. That's everything up to date. It ain't over, not by a long a stretch - but AVANTI!

PS - I am aware that there have been seismic changes in UK politics in recent weeks, but I feel that they are currently beyond the scope of this little blog. Plus things seem to be changing on a daily basis. I am scared about the future of this increasingly inward-looking little country.

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!