Sunday, 30 June 2013

Update 28 - Down to Earth

Survey Delivery

So I delivered my survey results and it didn't go too well for a number of reasons:

  1. I was put on last so the people I wanted to talk to about my findings, the doctors and professionals were no longer around.  I did not want to be put on last as I know this is the worst slot.
  2. I was given a radio mike (which in years of presenting I have never used/required) which failed to pick up my voice every-time I turned my head to point/look at my slides, so after the third slide I took it off.
  3. A number of the questions afterwards on why people didn't know about the survey and me saying it was because groups like the GBSSG couldn't/wouldn't advertise (never mind support me) was to blame, this was consistent around the world

I was not at all happy about my performance or the circumstances.  My opinion of the GBSSG (UK) is that they are very closed/cliquey and someone like me doesn't really fit in, so I am unlikely to go to another meeting (I tried!).

I did get a very interesting response to a series of posts at the event, whereby the general feeling is that people who attend these events have a very negative opinion of life and the diseases, the point was made these people still have issues and the majority who have got better are now getting on with their lives.

My Life

I am still slowly recovering... I am now off the Steroids completely and will see what impact/effect this has on me, but I was down to such a minimal dosage (10mg - from the original 60) anyway it shouldn't be too bad.  I just took a whole load of pills back to the pharmacist to dispose of (around 9 boxes of 5 different types).  So I am left with just Metformin and Glyclazide for the diabetes, so at last this should be stable - Yippee!

Still feel tremendously tired and working is very hard, somehow I don't think I will ever solve this riddle. My doctor told me  to have naps during the day but this just doesn't work/tie in with work, so I feel shattered at the end of each day and the weekends are just for recovery.  I suppose I am lucky to be able to get back to work.

I have just signed up for an exercise survey for GBS/CIDP and neuropathy related issues, and had a visit by a Physio who knows about these conditions and so understands the issues.  She has given me a 12 week list of exercises to do 3 times a week, they may sound simple to people with no issues but all are "fun" for me.

  1. Stand on tiptoes and down 10 times slowly (I have to hang on to something)! Then flex my foot
  2. Slide down a door (bending my knees) and up again 10 times
  3. Lifting my knees (doing a clam) whilst lying down 10 times

Then I need to be on the exercise bike for 20 minutes of gentle cycling - this really tires me out and I should do this one 5 times a week.  So far so good, but it does depend on where I am working if I can do them all the time.

I will be publishing my results of the full survey sometime, just trying to acquire the latest version of MS Office, so I don't have to manually re-paste them all.

Will keep you posted.