I want to dedicate this blog to Jodi Bassett, the creator of Hummingbirds' Foundation for M.E. who has recently died. Her sudden death has left the M.E. community in shock and feeling sad.
She was a severe M.E. patient from Australia who was also an activist, author and talented artist.
Jodi felt that her attempts at exercise turned what was a mild to moderate case of M.E. into a severe one that she never recovered from. She said that was one of the main reasons why she created the Hummingbirds web site.
Amazingly, despite developing severe M.E., it seems she was able to work on M.E. issues for an hour a day from her bed. Through this she built up a huge web site, books Caring for the M.E. Patient , What is M.E.?, Treating M.E. The Basics (1&2) and as well as producing many videos
Having read lots of comments in recent days I know that she helped many people and that includes myself. Her web site has been an invaluable resource in learning and understanding of this illness M.E.
I know that not everyone agreed with what she wrote but I guess her conviction and beliefs stemmed from the horrendous and erroneous advice that she was given to undergo exercise therapy that led to the next 15 years of her life spent mostly in bed. Through what happened to her others have learnt how exercise can be permanently damaging. I too was advised to follow a graded exercise programme but soon realised it was only making me worse and stopped.
Through my blogs and poetry I also try to help others with understanding and raising awareness of M.E.
But how can we explain to others if we don't have some understanding of this illness ourselves? Of course we can't explain how we feel to everyone. But it's important to at least be able to do so with close family and friends and with your doctor.
Explain
How
do I explain
my
illness and its name?
How
can I explain
my
suffering and pain?
How
can I explain
this
feeling in my brain?
How
can I explain
that
nothing is the same?
How
can I explain
again,
again and again?
So what resources are there available to help us explain?
Sadly we have to become our own self experts and this takes many years of suffering and struggle. It can be overwhelming for the newly diagnosed. When I first became ill I didn't have access to a computer and an internet. I relied on a few good books that I managed to find. One of them was 'M.E. A practical guide' by Dr Anne Macintyre. You can read about her and another loss in the M.E. community in another of my blogs here
Don't expect to visit your doctor and be given lots of information, help and advice, unless you are lucky. A comment I read today on Stacy Hart's superb column for the Watford Observer sums it up well that a robot would probably have more knowledge on M.E. than the medical profession!!!
Besides Jodi's web site there are many other web sites, books, leaflets, posters, videos and so much more help and advice available if you are prepared to look. I know it's hard when feeling so ill. Plus we can't all be activists like Jodi.
You owe it to yourself to learn as much as possible. So start today if you haven't already done so. Perhaps like Jodi dedicate an hour a day to reading and learning more about M.E.
Of course it's terribly sad when one of the M.E. community is lost like Jodi Bassett but we must continue with the fight against ignorance, bad advice and practice and so much misunderstanding that still exists.
Until next time.
A bientot
From the French Femme
xxx
