Sunday, 16 September 2012

working, not working

So last week we went to the Working with MS conference. It was a very long day but really worth going to.

The first session was led by an MS Legal Officer from the Disability Law Service, talking about all the many ways that unscrupulous employers can screw you over.

Working Yet Worried is the name of a very useful publication from the MS Society, a toolkit of resources for people with MS in employment. There are sections about if / when you should disclose your condition, and also advice about HOW to do it - I wish I'd read that before I blubbed in the middle off a staff meeting.

After a personal perspective on Access to Work from Stuart Nixon (more on him later!), we had a session on Managing Fatigue. I think Emma found this section really eye-opening - obviously she's amazingly supportive all the time, but fatigue is such a tricky thing to explain to 'normals'.

One of things that came up through the day was the need to be aware of trigger points and to pick your battles - that might be a work situation, or it might be whether you carry a suitcase up the stairs. We have to really weigh up the physical or psychic cost of every transaction or confrontation. And think is it worth it?

After lunch there was an overview of CBT which wasn't anything new to me but which underlined how useful it can be when people enter into it with an open mind. No-one gets anything out of it if they start off thinking "I'm not going to get on with this!"

The whole day was led by Stuart Nixon, the vice chair of the ms society. He was amazing, a truly inspirational guy who's had to deal with more than most, but still keeps on keeping on. It was a pleasure to spend the day in his company.

Stuart talked about the first time he used a wheelchair. He was on holiday somewhere hot with his wife and the heat had been kicking his arse all week. They had an excursion booked and Stuart decided to sit it out and sent his wife off on her own.

When she came back she said it was the worst day she'd had because she should have been sharing it with Stuart. He's been in a wheelchair pretty much ever since.

I know when I was first diagnosed, I had a lot of fear about 'ending up in a wheelchair', as if you get a wheelchair and that's GAME OVER.

That's really insulting to ANYONE in a wheelchair, even before the London 2012 Paralympic Games. But it was good to hear Stuart's story - a wheelchair is just another tool to make our lives easier.

It was also great to just chat with other people in the same boat, especially Mark who 'friended' me on the Shift.MS site.

The day after Mark got in touch to say that he'd been out with his family and had borrowed a wheelchair and found it to be a brilliant experience.

I should be more open to these ideas, maybe.


This whole day was over a week ago, and it's taken me until now to get this blog written.

To be fair, MS has been kicking MY arse this last week. Just finding things tiring, plus my cognition has gone on the fritz at times.

Ho-hum, such is life!

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