Sunday, 1 July 2012

July 1 - Update 12

Back to stuff about me for a bit.....

My physio's have just signed me off their list! Whether that means they have given up on me :-) or they can do no more.....  Seriously I would like to thank them for their positive attitude/persistence and helpfulness over the past 10 months (Maria & Pam).

The tests they have on their sheet are now fairly easy for me, I can even stand on 1 leg for over 15  seconds (and have managed 30 seconds on both legs at home).  The best one is trying to do heal to toe, walking backwards with your eyes closed.  Apparently it removes a lot of the automatic responses from walking as you have never tried to do it before, so your brain/muscles have to work it out manually.  All I know is that it is impossible!  What makes me feel considerably better is having mentioned this to my colleagues at work none of them could do it either - though they were significantly better than me.

I have come on considerably over that period and can do so much more now.  I even go around the house/work without a stick (and am fine on flat surfaces elsewhere).  I went up to London for work with a colleague for the first time in well over a year, on the train.  This was to see how I coped with the London underground, the answer was just!  It was out of rush hour, so quiet and I found the escalators OK, but the stairs were really difficult.  I was glad it was only 200 yards from the station to where we were going, that was me absolutely knackered. After the trip back home, I was totally exhausted, really pleased I had managed it but glad I had tried it with someone with me.

It seems I am confined to the Wii-Fit and the exercise bike (in my lounge) for a while longer, both have been invaluable and I would seriously recommend the Wii-Fit to all people trying to recover from GBS/CIDP as the are a great range of exercises at different levels that help with balance (being able to stand up is a pre-requisite)!  My aim is to do the simple step exercise and get more than 300 points (currently got to 200 - whilst holding onto said exercise bike - I knew it came in useful for something) - not holding on and be able to get the skier down in 27 seconds as he at least finds/sees the gates now!

I can now survive for 8 minutes on the exercise bike (only on an easy setting though) - my aim is to get to 10 minutes by the end of the summer - and still get off under my own steam.  The problem with the bike for me is the lack of scenery as I used to like being outdoors, so I have a bike in the garage that I wheeled out to see if I could get on it and field miserably :-( I can't balance. So maybe next year......

I am still on Predisolone (20mg) every other day, plus Gliclazide (for my diabetes) Alendronic Acid and Vitamin D. They do still give me headaches, but nowhere near as bad as before.  I feel so lucky that I am still improving and getting back towards "normal" whatever that may end up being. Especially as I see on Facebook etc. that other people suffer for years and years, with no/minimal improvement.

"Keep banging the rocks together!"