Sunday, 15 April 2012

April 15 - Update 6

Had a great holiday on Jersey!  The helpfulness of all the people was brilliant.  Thanks goes to most of the attractions for having motorised scooters/wheelchairs available, especially The Jersey War Tunnels and the Gerald Durrell Zoo (as there was no way I'd have gone round either without!).  The picture below is from the zoo:

The hotel (Samare's Coast) was also good, though their room stated a walk-in shower which it sort of was (a normal shower with quite a step up!) so a bit difficult and not quite what was expected, though it and I survived, by hanging onto the towel rail (which didn't fall off the wall).  Their indoor pool was great and I/we really made good use of it most mornings before breakfast.

I made it to Corbiere lighthouse, picture below:

It was a massive struggle and really wiped me out for the rest of that day and all the next.  Not only did I have to stop multiple times on the causeway, which thankfully was flat, the slopes at either end were a nightmare.  My son nearly had to carry me up the one at the far end and how I got back I do not know (apart from will-power and massive assistance from all my family). But...

I did it :-))) !

That really should say ..... We did it!

The steroids are still having a positive effect and I can now feel parts of my lower legs again (like when they get bitten by an insect), I am still getting headaches and not feeling to great on a day when I take them, but they are working for me.  It is now how long do I need to stay on them and what's next?

My MP got further with the DWP (Department of Work & Pensions) regarding my application for allowances to assist with care and mobility, than I did (that's the good news).  The bad/funny news, as you have to laugh, is they have mislaid (lost?) my case notes and are conducting a level three search.  This means they have had two searches and not found them and are having a third look.  What really makes me cross is all the excuses and the fact they haven't told me anything. I had to resort to my MP to get this far.  Incompetent bureaucrats or what! Now I have to wait and see what they will do next.....

Nearly 250 people have completed my survey.  I am publicising it at the UK GBS/CIDP forum next Saturday, and will publish further results around July 2012.

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