Tuesday, June 14, 2016

Not Jodi Bassett - not fair. Fly free humming bird.

This post sums up Jodi's passion
Jodi left us on June 11.  She was 39 and I have her Kindle book...probably the first book that I ever bought after I became enlightened about chronic fatigue syndrome (CFS) being a totally different dis-ease than Myalgic Encephalomyelitis (ME).  No syndrome is taken seriously by doctors but at the same time, none of my doctors will even speak of Myalgic Encephalomyelitis because they don't really know what it is so CFS is a word that I still have to use in Australia knowing that what I was saying about myself was actually a misdiagnosis.  However, Jodi refused to use CFS to describe herself because ME has been recognised by the World Health Organisation as a neurological disease since 1969 so someone knows it exists in its own right. Why doctors are not taught about ME especially historically over the decades I cannot possibly understand. ME is what Jodi Bassett lived with and died from without it ever being recognised in Australia by mainstream medicine as anything more than someone with a weak constitution as my mother would say.

She was my friend on Facebook answering a question I had back in 2011.  Other than that we had no other direct contact.  Her sites provided my early references and for that I am truly grateful.

Jodi said on her first Hummingbirds website:
The single biggest factor determining recovery and remission from Myalgic Encephalomyelitis (M.E.) at this point is undoubtedly appropriate rest in the early and/or severe stages of the illness. The importance of avoiding overexertion in M.E. can not be overestimated.

M.E. patients that are newly diagnosed, or still in the acute stages especially must be given their best possible chance for recovery and be enabled to REST appropriately. Improvements in symptoms and stability of the illness can also be positively affected at every stage of the illness by appropriate activity management/reduction. Limiting activity levels to only as much as the patient is capable of dealing with may well be the single most important factor in the patient’s M.E. improving over time.
Read More

I think you will find that the ones who are dying years before their time are those like Jodi who were given the wrong advice or not given the right advice early enough.  The most obvious contributor to our early deaths is the friendly advice to "keep going at the same pace" whether your body feels like it or not because it proves your strength and it pleases your partner, child and pet. The medical advice that has caused permanent relapse in so many of our friends is the advice to physically exercise and take the advice of a trainer who wants to raise your heart-rate to the maximum allowable for your age.  Non-compliant is what doctors write on your reports if you refuse to do that exercise.  However every time I have been compliant I have eventually relapsed whether it was the gym, TAI CHI, water walking or whole body vibration etc and each relapse results in some permanent loss of your former self in terms of ability and quality of life.  Jodi wanted to save us from that which she experienced and I would that I too could convince you that you must find a way to stay within your own energy envelope.  We actually have more of an oppotunity to do that these days with the help of heart-rate variability monitoring (HRV) which is one step higher than heart-rate monitoring and we have the equipment and software to do it and record it and analyse it now.  It is called self-help. Read about HRV as compiled by Karyn Crimmin

Jodi has another web site produced call Health, Healing and Hummingbirds.  She explains the purpose of the site:
Lately I have been reading as much as I can about health and healing. Some of the information out there is genuinely amazing. So much more impressive and compelling than I had been led to expect.  But finding the little nuggets of gold amongst all the huge piles of worthless junk takes time. Time that many ill people just don’t have.
Health, Healing & Hummingbirds aims to get a summary of the cutting-edge information on health I’ve learned out to people in the earliest stages of their disease. Where it can do the most good.
Photo provided by her father

Jodi was a well-referenced lady on her web sites and her articles are in essence literature reviews from holistic and integrative perspectives involving orthomolecular and environmental medicine while acknowledging the place of traditional medicine.  She promotes deep healing instead of symptom relief alone and she did all this research for us.  As an example she writes:
Glutathione and vitamin C and other antioxidants are not cure-alls, particularly when it comes to the treatment of long-term diseases. But Dr Levy does explain that even where the disease is too far advanced to be reversed the administration of reduced glutathione and vitamin C can at least provide reliable symptomatic relief..
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The following was posted on the West Australian Newspaper's Memorial Page by her Dad, Peter Bassett of Bedfordale, WA
- See more at: http://www.legacy.com/guestbooks/thewest-au/jodi-bassett-condolences/180305608?&eid=viewgb#sthash.PWS06Adg.dpuf
Our daughter Jodi's influence was far, far greater than we had imagined, and she was a tireless crusader for M.E. activism and helping fellow sufferers, as well as a prolific artist of great skill.  And so ill, putting others ahead of herself. Jodi was actually recovering quite well from the M.E., even drove to the park and went to the playground with Leila. Big improvement from being bed-bound.Then the breast cancer struck, eventually spreading, and this is what she couldn't defeat. But boy, did she give it a red hot go. She still had hope right to the end. A really beautiful person.  Monday 27th June
On Thursday, 23 June 2016 another writes:
Hi. I am the editor of the newsletter of the North London ME Network.
For years now, the 'Mainly For The Bedbound' section of the newsletter, written mainly by Jodi, has featured. Jodi has now died, but her work, in the form of tips for people with severe ME, will go on and, in this newsletter, probably for years to come. On behalf of NLMEN, I thank Jodi.
For more: info@nlmenetwork.org.uk
Monday, 27 June 2016

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