Thursday, May 03, 2012

ME/CFS International Awareness week and Scooter update

If you have nothing to do on Saturday, you may like to go to Preston because "Linley will be encouraging sufferers, their carers and the wider community to get involved during ME/CFS International Awareness week.  She is opening the one-day Awareness Week Education Seminar hosted by ME/CFS Australia (Victoria) which aims to broaden knowledge of diagnostic and treatment protocols and best practice, being held at Darebin Arts Centre at Preston on Saturday 5th May. Linley will welcome an audience of GPs and other medical practitioners and invite them to support the campaign.  Special guest speakers at the Education Seminar include Associate Professor Sonya Marshall Gradisnik from Bond University who is also a keynote speaker at the upcoming ‘Invest in M.E.’ Conference in London."

For further information, contact Alison Copley, CEO, ME/CFS Australia (Victoria). 
T:  03 9791 3100   E:  Alison@mecfs-vic.org.au      

About Linley: Linley had her stellar swimming career cruelly cut short after winning the gold medal in the 100 m breastroke at the 1991 Fina World Championships and competing at the 1992 Olympic Games in Spain.

Reference:  Media Release, ME/CFS Victoria (Australia), Dated May 2nd 2012

Scooter Update:  I rode down to Karla's place earlier today worrying about the drain on the battery from even a slight incline on the road but also assuming that I could charge it up there if I needed to.  I did charge it while I was having a cuppa but it was still going into the red on the way home.  I think going to the local shops and back the other day was the beginning of the end for these batteries.  I phoned the local scooter shop which serviced it and he said that they just die quite quickly and it should get me 20km with new batteries.  $198 times two batteries and $33 labour.  I'm a bit disappointed I didn't get a longer run on them but I can see I am going to have to do this for peace of mind.  Unfortunately, I have committed to spend some of your birthday gift on getting a light fitted in my wardrobe (because I can never find anything) so I will have to save up even more.  I think I know what I will be spending this coming energy grant (or whatever it is called) on.  Not sure how much we are getting in June.  Hopefully enough for at least one battery.

I don't know if you remember me speaking about Marina who lived downstairs where Auntie Dawn used to live in HB before she moved, but her name was fast-tracked on the Dept of Housing and Communities list thanks to her doctor. Anyway she asked me over for a coffee yesterday at her Seniors Unit she has just moved into here in Clown Town.  I went despite the fact that I am never feeling the best lately but I am better than I was thanks to my birthday quick course of steroid for three days which didn't stop the crash after my birthday at such a low dose but seems to have helped some.  I probably did not take enough so I am only just hanging in there being able to get out a bit if I don't stay on my feet.  I also did some shopping yesterday which meant I had to be on my feet.  I feel pretty worn out today though.  There is so much I need to do but I am going to have to rest a lot especially now that I am not taking any steroids.  I don't want to get any fatter by taking more.  However, maybe my eyes (light sensitivity) were better from taking the steroids not the cod liver oil.  Just thinking.  They are worse again today.

Back on the Movicol again too.  I didn't get on top of it the other day.

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