Chronically Fatigued Blogging for M.E. Day ~ 12th May 2008

If you click on this M.E. banner created by artist and fellow MEite, Rachel Groves, you can, thanks to Rachel and everyone linking up, meet other MEites from all over the world who have joined in the “Blog for ME” event that has been advertised on this site for the past month…

Here is my humble offering:

G’Day from an MEitess down under…

I hear you’re having a bit of a heat wave in the Northern Hemisphere at the moment (that’ll make a change and it’s only mid May, flaming June, Wimbledon and Strawberries is up next!) - we are into our Autumn here in sunny “beautiful one day, perfect the next” Queensland and already it’s cooling down rapidly…time to put one less ice-cube in the Chardonnay now & beg someone to chop some firewood (for effect only really) in readiness for deepest Winter = Christmas in July (oh, how thrilling)!

Seriously though, Australia, being such a vast continent, has its absolute extremes in everything, from the weather and the size of the mosquitoes, to the Sport (yawn) and even the way in which M.E. is accepted…or not. The latter, unfortunately, still being the firm favourite of course, but we are getting there slowly…more & more people are realising their mysterious & chronic symptoms match those of M.E. (Myalgic Encephalomyelitis) rather too closely - not “CFS”, these folk are way beyond fatigue, when all else (assuming some form of modern testing is actually even available) is eventually ruled out…we can’t all be bludgers dreaming of a fabulous life, sly on the sicko can we?  “Ooh, I’ll bung another fifty bucks in the pokies (pub slot machines), grab us another rum n’ coke will ya Noelene, it’ll cure me CFS, there’s a dahl…”.

The ingenuity (does another Rachel need to take a bow as well?) behind campaigns such as this international blogfest, is not only helping to raise awareness about M.E. today, all over the planet, but through the wonder of the Internet, we can actually truly unite and make many new friends from far & wide, swap stories, educate the public, our families, ourselves and the medical profession (snigger pinch of salt needed there), compare potential scams treatments and offer our support to each other - the historically acclaimed Nurse & reputed to be MEitess herself, Florence Nightingale (12 May 1820 – 13 August 1910), who came to be known as “The Lady with the lamp” not “The Lady with M.E.” as would be the case nowadays, would approve greatly I’m sure - it’s a worthwhile way to continue to celebrate her birth date as well as the wonderful healing she brought forth into this suffering world…Some of us could do with your unselfishly loving help here now, Flo’!

Anyone suffering with M.E. will tell you it’s an ongoing battle for decent public and medical recognition of this complex neurological illness… and that it’s still a stigma on top of having to put up with “it”. This does have a fairly negative effect upon one’s coping mechanism, sending frustration levels soaring through the roof of the Sydney Opera House sometimes…  

Personally, I’m about 23 years into my karma experience of M.E. and for me, things are not improving. I spend my days living alone, with too many cats (probably smelling of wee) and a dog for company,  mainly house or bed bound, compiling info on this site and mucking about on others - like Facebook’s Foggy Faces or Fragile Friends (Yes, I know I’m not 13, sad for a 40 something isn’t it?  - see what M.E. does to a former good woman?). Keeps me off the turps though!

It’s only fairly recently that I even fully acknowledged the first diagnosis of M.E. I was given way back in the ’80’s - when “Yuppie Flu” was all the rage/fashion/epidemic… I foolishly bought into the idea that, yes, it was all in my head and I must press on with life, regardless of what the body was screaming…oh, those foolish years, and now, I’m copping the payback. Even the second dx did not really compute, I was far too busy to be that damn sick wasn’t I? …I am a natural blond after all…OK, a little bit mousy in winter, but we don’t have much of ”winter” here in paradise, so you can see the odds are against me.

Thanks to the www. I have been able to misinform myself very nicely, “It was that bout of EBV that did it!”, “No! It was that 747 dumping fuel on me that did it!”, I have suspiciously examined myself for alien M.E. implants and even wondered if “it” could be from an air born STD! Yep, it’s been a trip around the billabong alright, a few times! Finally, I have some answers and after copious months of researching (err, reading until near blind that is) brilliant articles & reports (posted on this site too), I think I have a small handle on what’s going on with my type 7 M.E. 

Type 7 M.E. sounds like a well nippy sports car doesn’t it?  “Tell me, Zarii, what car does a gorgeously hot young (’ish) lady like yourself drive then? A Porsche perhaps, an E Type?” “Nah, mate. Actually I drive a Type 7 ME - they are just soooo alert!”…snorts some coke to keep awake…and gimps off to her clapped out Volvo with no Turbo anymore…See’s car as reflection of Self…

Talking of Type 7’s, check this out for genetically found basic M.E. levels:

http://news.bbc.co.uk/2/hi/health/7378440.stm

The worst thing to come out of being chronically ill for so many years, just soldiering on with no one giving a toss care or support network, was losing (how careless) my long term, long haired husband to an opportunistic slutty healthier specimen, my beautiful marital home, the majority of my other pets and my “life” as a very busy professional running my own Funeral & Mortuary businesses, which became almost as embalmed as I felt.  M.E. & long term ill health has taken everything from me, including my chance to have a family of my own, many friends & family, who just don’t believe in “it” or plain kindness… but, on the bright side - it never really took me, even though there were many times I thought I was lost forever in the dark, downwardly immobile abyss of M.E.  I’m still here somehow and growing stronger in Spirit by the day…

But rather than give those tedious demons another really good flogging, ”it” has also given me so much. Out of suffering comes it’s opposite - appreciation and gratitude for little things, like not having a particular annoying symptom today, or the abating of intense pain. Having eyes to look with. Functioning nostrils…that sort of thing.  

Lately, I have a better sense of purpose, new growth, a way to use my “sick me time” - and that’s mainly in advocacy/support for M.E. and my other cause Osteoporosis (as I’m almost crippled by that and arthritis), so pretty muchly, near compulsive blogging, despite the ridiculous intermittent fogginess of M.E. f*ckwittedness  dementia and M.E. dyslexia challenges…not forgetting to mention the tremours, the sweats, the muscle weakness, the mumbling gibberish, the paralysis, the TIA episodes, the nausea, the seizures, the constant migraines, the M.E. blues, the IBS, the adrenalin trips, the weeks months of insomnia, shall I go on…? Hell, I almost forgot the eternal waves of death-like exhaustion there! You know. You “get” it, even if the majority of my past GP’s think an aspirin and a sprint around the block will fix everything I’m “imagining”!  

I have also met other MEites for the first time (including in person, Rachel M - which was a recent highlight as we compared wheelchair stunt skills - neither of us have any!) and just in knowing them, learning them, that there exists some Soul out there in Cyberspace, or maybe just around the corner, who knows exactly what it’s like and the pleasure in sharing stories, hopes, dreams, tears, so much more - life with M.E. feels better…it’s called acceptance, we are the tiny tea lights flickering between life & death at the end of the tunnel. Together, I hope we will illuminate the world and flood M.E. out of the darkness of ignorance and denial so future sufferers do not ever have to question themselves or their very sanity the way many of us have been forced to by a f*cked up system.

Firm friendships are forged out of this desperate & devastating illness, and that is a simple, good happening. It’s an amazing and wonderful thing, because it is living, vibrant energy, generated purely from us near flat batteries, but we are alive with hope and bestowed with big hearts - a true blessing, and that blessing instills a little faith back into humanity through the right minded action of compassion.  Namaste my friends.

Thank you for reading me for M.E.!

Brightest Blessings to you.

Zarynity (Zarii) Bow-Dern.

<a href=”http://rachelcreative.wordpress.com/2008/04/18/blogging-for-me-cfs-2008blogging-for-me-cfs-2008/”>Blogging for ME/CFS Awareness 2008</a>

 

 

 

 

 

 

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