Tuesday, 5 May 2015

a prime location

Way back when I was first diagnosed, we asked the first neurologist we saw if he thought there was anything to gain by visiting one of the local support groups. His response?

"I'd only go along if you want to get really depressed."

His logic was that, as a new member of the 'club' — and one who was displaying relatively few external symptoms at the time — the other people at these meetings were likely to be in a worse state than me. So not entirely helpful for a new recruit, and so we decided to give it a miss.

However, in my recent drive to take MS by the scruff of its neck I decided to "feel the fear and do it anyway".

An aside: the centre - also known as Lilian Prime House - has an imposing frontage (see image) and before the advent of Google Street View was nigh-on impossible to find - for me, anyway!

The Derby MS Centre has a programme of activities and also hosts monthly open days, and I went along to one the other week.

The centre staff were all lovely and welcoming (and once inside the building it certainly feels less utilitarian). And the people who were attending were… well, weirdly similar to me. For a start they were all male — one of them even had the same walking stick!

Aside from that the only other attendees were the wife and daughter of a man diagnosed with MS 10-or-so years ago who refused to discuss the matter (he was conspicuous in his absence). I know everyone deals with their stuff differently — and I'm not pretending that I've got all this shit sorted by any stretch of the imagination — but it was pretty heartbreaking to see the effect that shutting them out was having on his wife in particular.

I didn't have time to stay for a Chair Yoga demo so I went along to this last week — and it was pretty hardcore! I know I shouldn't have been surprised.

I was okay as far as the upper body stuff was concerned but when we moved onto legs and feet, it was a sobering reminder of how weak my left leg is.
I was the only guy there, and the particularly sparky lady next to me said that she was glad I'd come along as "if there's one thing I can't abide it's a roomful of women".

I'd planned that this was going to be a weekly thing but the sessions only take place during the day. And on that particular day, my lunch hour ended up being more like two hours in all, so it's not really something I can do if I want to keep my job. Plus I had to work extra at the end of the day to make up for it - which was pretty tiring!

The other people there were older, and were either wheelchair users or moved with walkers. Most of them were brought along by carers, so I can fairly-confidently assume that I was the only one who was going back to work afterwards. 

On top of this, Lilian Prime House is open Monday, Wednesday and Thursday, between the hours of 10 am and 4pm.

Thinking about this later I couldn't help remembering the MS Society estimate I mentioned a while back — that only "between 23 and 32 per cent of people with MS are in employment".

What the hell do the rest of us do?

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