It’s all about M.E.! ~ Open shout box.
Send in your poor health, life or M.E./CFS/FM Stories and share with others who understand the suffering…
Please email your original work to zarynity@yahoo.com
Or you can leave a synopsis in the comments reply box at the end of this page.
Submissions will be published in entirety, without editing unless overtly offensive.
Please check your spelling and grammar to aide readability for others…
My M.E. Story ~ Of Wishes & Weariness.
© Z. Bow-Dern 2008
Hi, I’m Zarynity (Zarii), I’m 42 years old and live at (15.9500°S, 123.6833°E) off the South Eastern coast of Queensland, Australia ~ Macleay Island, is in The Half-Whitsunday’s as this group of islands is often called by the locals. They are actually more graphic about the second word in the nickname. For those of you reading from other areas or Countries, Macleay Island is a pile of mud and sand about 7klm long & 2.5klm wide in the shape of an upside down seahorse, plonked in Moreton Bay, just behind the famous and much larger North Stradbroke Island. We have a population of around 3,000 souls and it’s growing fast. We are surrounded by lots of mangrove trees (*which means our eco-system gives off lots of methane, hydrogen sulphur and nitrous oxide, otherwise know as marsh or swamp gas! New health blog coming on that subject soon under “Island Sickness?“) and all the locals are adept at swatting mosquitoes all day and most of the night if they’re insomniacs too…
Firstly, I have posted a photo of my favourite artist above - Frida Kahlo, because I relate to her pain. This painting represents to me her disgust and disappointment at being trapped inside a crumbling, vulnerable, unreliable body. As a child she had a very serious transport accident. She also had Polio. Frida would have known all about suffering from a chronic illness as the two are so closely linked in symptoms.
Gosh, where to start with this… The beginning is a good idea. Here goes a chronological list of my ailments (yawn), make yourself a cuppa - it will be long knowing me - I have hypergraphia, which comes free of charge with the M.E. brain fried territory in some sufferers.
I’ve never been the healthiest of specimens. (Grins!). I have advanced Osteoporosis, due to very early on-set at age 14- 16 years endocrine failure, intermittent infertility, arthritis, IBS, fibromyalgia, temporal lobe epilepsy - left hemisphere, a fatty liver and dangerously (if we believe the hype) high cholesterol (medicated of course, yet stays around 8-9 except during periods of illness induced anorexia). But, by far the most challenging condition, when I’m not fractured, is trying to cope with my M.E. Five, out of the five conditions mentioned so far, are symptoms of, or can be direct consequences of Myalgic Encephalomyelitis, ICD-10 G93.3 as defined by the W.H.O.
I think I first knew something was wrong very early on. I’d had the usual vaccines as a kid, including the oral Polio one at the age of five, even though I’d been exposed to a Polio sufferer in the family on and off since birth. Born with severe Eczema, then later on developing mild Asthma, I had the usual childhood illnesses of the Mumps, Chicken pox(Varicella HV3 first exposure), Measles, Hand, Foot & Mouth disease(Coxsackie A16/B+), Scarlet fever, Glandular fever(Ebstein Barr Virus, HV4) and German measles after a Rubella shot at age 14.
Due to my Mother campaigning for Fluoridisation of our local water in the 1970’s, I ended up being singled out for intensive Fluoride “treatments” at our local dental surgery. I was the only kid in my year given this as far as I know and I’m the only one who has ended up with crumbling bones and some sort of dimentia! I always caught colds, flu’s and tummy upsets and anything else doing the rounds! I then went for an upgrade at age 18 and had a shocking case of Shingles (Varicella Zoster, HV3 second exposure) which had me bed-bound and off work for almost 3 months. I still get the nerve pains in my torso all these years later!
From about the age of 5 I never felt well, I was struggling to keep up and fit in with my schoolmates and had become reclusive, craving peace and solitude, like it was vital to my existence. I was withdrawn from my family (a very unhappy, abusive home) and given to bouts of selective mutism. I just didn’t speak much at all. It still comes upon me from time to time and I can be as quiet as I can loud! I’m no longer any good at verbal communication and prefer silence, or typing, as it’s easier than playing word search with a frazzled brain. I can be clearer here, more than anywhere else. I remember having a lot of rheumatic or inflammatory pain in my knees, hips and back which they said was just growing pains. I have a double curvature of the spine which made me slouch badly and from the age of three had to wear strange shoes fitted with specially made inserts with a leg iron to straighten the bones. This came off when I went to school and often I wore support bandages around my ankles and knees under my long white socks! I hated those visits to the Orthopaedic hospital.
I was never a good sleeper, and now have near permanent insomnia and sleep reversal, only sleeping for maybe 2-3 broken hours in every 24. On average, I wake up every 15-20 minutes. The longest “sleeps” I’ve had have been when unconscious or after seizure activity (which is always nocturnal now and rare for me unless I’m stressed) . I remember being near death when I had supposedly had “Scarlet fever” (A beta-hemolytic streptococcus GABS) - which I now think, due to research, was actually viral Meningitis, because the county health dept gagged my parents as they didn’t want to cause mass hysteria in our ignorant backwater of a tiny English farming village. One other girl also had it from my class and she did not return to school - we were told she had moved away. I certainly was burning up with a fever and became unconscious at school, but I didn’t have the Scarlet rash so common with this illness. I was unconscious for a long time, drifting in and out of delirium for over 2 weeks and off school for around 3 months. The village doctor came twice a day and the local Vicar would pop in for prayers. My folks were told I wouldn’t survive this illness and I remember having an NDE and watching them all gathered around my bed from my vantage point on the top of the wardrobe! Make of that what you will! I recall being terribly thin and weak the first time my parents lifted me out of bed. The children at the school had donated toys for me to play with and I remember not even being strong enough to pick up a teddy bear. Mum sat me in an old babies pushchair out in the sunshine. Daffodils were blooming, everything was bright and yellow. I was about 7 or 8 years old.
I’d always been a headachey child, as I’d survived two quite serious head injuries at ages 3 (car crash) and 4 (playground accident) so it was put down to that, but after the “fever thing”, really horrific migraines started. This still goes on and I suffer bad headaches every day, no exceptions. I self-medicate with over the counter painkillers in vain attempts to stop them morphing into the most dreadful migraines, which make me silently plead for death to come quickly. I have tried everything, powerful prescription medicines, herbals, chanting, etc. for this and nothing much helps. I have a severe intolerance to anything with aspirin or ibuprofen and am virtually immune to morphine these days and other anaesthetics. The migraines have changed very recently and I’m now having vision impaired ones as well as the usual ones. It’s like an annoying kaleidoscope of colourful zig-zags, flashing & flickering in my peripheral vision - usually the right eye which tells me its source is probably in my dodgy left hemisphere. I have also developed food allergies - lactose, sometimes gluten and more recently after being extremely ill, peanuts.
The trouble with M.E., is that for many people is has an acute onset. They can literally pinpoint the day & even the hour they first got sick. This might be because they were reasonably fine and healthy until a “virus” struck them, in the form of a cold or gastric attack or a sudden severe immunity weakening shock, so feeling that ill came as such a discernible change in well-being. For me, as I’d always had health troubles, I really knew no differently.
My complaints over the years to various GP’s that I was still not feeling well, always weary and weak, resulted in the first “diagnosis” of post viral ME/CFS. They said it was Lupus for a while, then early Renal failure, then reverted back to ME/CFS. I was told to just get on with life, there was nothing they could do for me. Which, believing all the hype at the time, I put down to meaning I was just making it up! Well, the papers were full of “Yuppie Flu” stories. I was certainly not a Yuppie and this was not something I related to, so I soldiered on through extremes in declining health, unawares that I was setting myself up for a big crash… Upon reflection, you wouldn’t put your worst enemy through it.
It is only recently that I’ve been trying to pinpoint it, so that I might have a clue which virus, as in this lifetime I seem to be making my way through all the ICD-10’s, if the cause is in fact viral, which one is the possible conduit for it and if there is any hope of a cure or relief from symptoms or some decent research into things. Writing this tale of woe for the MIMES website has made me acutely aware that I actually have no idea what good health is at all or what it feels like to have energy, well-being or be pain free. I really have no concept of “normal” and that is quite a freaky realisation. I’m going to take a break in typing this, because I’m feeling overwhelmed and even teary (which is alien to me and another symptom in some MEites) at the magnitude of what I have just realised. I’ve certainly had moments of feeling OK, but they are just moments in forty odd years. That’s big. And it answers big questions too.
(Ten minutes later - OK, self-pity over with now! I can’t dwell on counterproductive nonsense).
Often people think that EBV HV4 (Glandular fever/Infectious Mononucleosis) is still the trigger - even some dusty old Doctors! It’s what we were all told at one point in the CFS frenzy days of the 80’s. It has since been clinically stated that it is not to blame, but can cause chronic fatigue in the recovery period for many infected with it. Also, in the recovery weeks, it has been hypothesised that another virus (possibly one of over 70 strains of Polio still out there) jumps into an already compromised immune system, and it’s this one that is the culprit, causing CNS damage and either lying dormant, like the Shingles Zoster virus (Hv3) in the spinal cord or it just starts it’s work happily frying your brain cells. Whatever “the powers that be” eventually decide it is, it’s having a field day and M.E. symptoms have been recorded as early as 1934, so it’s hardly a spring chicken as far as morphing viruses/enteroviruses go…
So much has been written about the illness and its “causes”, it’s no wonder the newly diagnosed or MIS-diagnosed have no clue where to start their quests for education. Having a computer is essential (especially a laptop for those bed-bound much of the day) as the information often provided by ”governing bodies or state health authorities” in ME/CFS land appears to me to be either outdated or biased towards the psychiatric leanings. It takes a while to sort the chaff from the wheat even with this. Some large overseas ME/CFSsupport groups are even jumping camps (we call it going bad!) in their attitudes about the illness. It seems to depend on trends and who needs to market whatever “treatment” and things far more corporately sinister. It’s a corrupt as anything else these days. A newbie will find anything from Vitamin D projects, antibiotic saturation’s, removing amalgam dental fillings, Om-ing, Prozac’ing, balancing your Chakra’s to worming campaigns! It’s a real lolly shop and a profitable one too…
Around the age of 30 I got what I believe was Bartonella(Coxsackie A16 or B) from my kitten Izobella, scratching me, common term is Cat Scratch fever. It was diagnosed by 3 Doctors at a S.E. Qld hospital as me having Lymphoma and I was given just a few months to live. This virus made me extremely ill and weight fell of me. My lymph nodes, especially facial, were massive and I looked like I had Elephantitis. I had to completely cover my face if I went out unless it was Halloween! My white blood cell count was sky high and killing me. I ended up with extreme anorexia and felt like death. The Oncologist and Haematologist at the time couldn’t believe it when I eventually started to recover - I will mention only after seeing a faith healer who seemed to draw the illness out of me. Many witnesses saw this healing session, so I know something happened because it hurt like hell and she did not even touch me…
I struggled on for years working various jobs, ending up self-employed in the stressful Funeral business, on-call 24/7 no matter what. The entire time I was dealing with the strange effects of the endocrine dysfunction (which has resulted in the first trimester loss of all 3 of my surprise pregnancies - I was told I was infertile at age 18. I have regular Oedema,in my hands, feet and legs, I believe from too much HRT bombardment over the years), I developed TLE (Temporal lobe epilepsy) which manifested in absence seizures with so much deja-vous it blew my mind. Battling M.E., arthritis and the Osteoporosis frailty really was the end of me professionally. I closed the business after almost 8 years due to personal stress and ill health. I still miss my work very much.
Not long after, I received a severe shock, which sadly ended my 23 year marriage about 4 years ago, I became very ill again, the trauma was too much to take. This time, after another battery of tests, I was told I had Leukemia. Severe illness, adrenal dysfunctions, diabetes and anorexia followed as my white blood cells went crazy. I refused any treatment and prepared for the worst. Six months later, again amazing the Oncologist, the illness turned around and I grew steadily stronger over about a year. I gained some weight back and now have trouble keeping it under control, having piled on a massive 25 kilos in under 2 years!
Then, after being subjected to domestic abuse and violence in what was only my second relationship, I had another early miscarriage. I became very sick two months later and ended up with what the Doctor said was Encephalitis/Meningitis. The anti-viral treatment eased the agonising brain swelling and delirium and then just before making the decision to move to Macleay Island, to aide my healing process and start afresh, another blood test revealed EBV again (which is supposed to make you immune after the first bout!). Of course there was not much hope of ever getting 100% well by now, with multiple health problems to deal with.
I somehow managed to move myself to the Island even though I still felt rotten. This was soon worsened by sustaining multiple fractures to my arm and hand and torn knee ligaments after a fall. A year later, I only occasionally remembered the original ME/CFS diagnosis of some 20 years previously because of meeting another sufferer here. I think this is due to just always being unwell and rundown. You don’t now anything else and just exist with it…
Upon further investigations by my NSW GP, whom I was still under - as the Island GP wasn’t taking on any more new patients at the time, I was told I also had M.E. which causes neurological (brain) damage and damage to the CNS, not CFS. I had no idea there was a difference until very recently as I was not on-line and had previously lived in rural NSW with not much public information in the nearest town. I am amazed at just how much it affects in the human body. I’m even more amazed at the lack of awareness, understanding and research into the illness. I am now registered with a much nearer GP, and was told to take a pain killer and get a good night’s sleep as it works for them…very helpful - they clearly don’t understand a thing about M.E. or choose the denial tactic of the past. I just don’t go there unless I feel at death’s door, because it’s not worth the effort to just get fobbed off yet again. Just stay at home, alone, willing the awful, painful and frightening intensity of symptoms to disipate soon. I’m weary of wishing for change…
I get quite distressed to think of all the people misdiagnosed over all these years with all sorts of things. Psychiatric disturbances are a favourite label, well, anyone would be half barking mad if they had to put up with all the strange idiosyncrasies this disease has to offer! Then the medical profession decides it’s because you’re just depressed or a lazy malingerer or you have school phobia or yuppie flu! Not since the days when people with MS (Multiple Sclerosis) were being labelled as “hysterical” has there been such denial and inaccuracy surrounding a disease affecting millions worldwide. It’s a disgrace and I’ve had to learn to put up with all sorts insults and insinuations all because my body succumbed to something way back when…even from family and partners. M.E. is invisible, except on the days a stick or wheelchair is needed.
People are sometimes surprised to see me hobbling about on my stick, “Oh, what have you done?” they ask. “Nothing.” I reply, half-heartedly going on to explain very simply what the problem is if they seem interested. “But you always look so well! You don’t look sick at all!” they say. Yes. I know. Tell me about it. See http://www.butyoudontlooksick.com/ for a laugh about the irony of this! Anyway, if I was in it for the tea and sympathy, I would have picked some illness that manifested the symptoms more visibly…things are definitely short on tea & sympathy around here - I just make my own when I can or I go without…
If anyone has got this far into reading this tome, I would be very interested to know if you have had any of the above illnesses I’ve highlighted in BOLD. There has to be some common thread other than the Ebstein Barr Virus going on. All I am left with is dealing with this sick body every moment of my life and my intuition feels it has to do with a cross between a strain of Polio and so many of the awful symptoms of MS, Lupus and Lymes(I’ve had many ticks and react badly to the little suckers!). I’m presently on a waiting list to get an appointment to see yet another Neurologist about getting an appointment for a newer MRI scan. See my blog in ON M.E. SOAPBOX about how that came about!
In closing, yes, I’m still weary and I wish I had experience of life without health problems ~ still, things could always be worse…they might find a cure for my obvious case of severe hypochondria… 
Best Wishes & Bright Blessings to you…
************************************
Permission was expressly sought and very kindly granted by the author of this following e-mail for public display in its entirety on this site. I think you will find this portrayal tragic and powerful.
It has been reformatted to fit this page type. *Z*.
(Referring to the CFS and M.E. ongoing name change campaign issues) in response, Stella writes:
Mon Mar 3, 2008
Reality check please - I feel I need some sanity from this group.
Amen to that!… The impact of all this arguing, naming and renaming, along with the regular psychobabble gobbledygook is
beginning to cause me to feel as tho I’m going to lose my mind… No, I retract the first statement– I feel as though I’ve ALREADY lost my mind…
Years ago, when I sought answers as to what in the heck was happening to me, I had many tests, & sought information from a neurologist (from one of the supposed “top ten” teaching hospitals in this US of A). During the course of trying to rule out MS (among other things) as a diagnosis, I was simply told “off the record” that if this flipping plague lasted longer than six months with symptoms, a-b-c-d-x-y,& z–then I had something called CFIDS–which was originally known as ME, and still called such in other places of the world….
I was also advised not to use any of those ‘labels’–&,that if I did, it would go very poorly for me…Well, that person was correct, it has gone, and is going–very poorly for me… Not long after that, I also received a fibromyalgia diagnosis…YET, my symptom profile most closely resembles that of the original Myalgic Encephalomyelitis symptom constellation.
However, I am fortunate to receive any sort of treatment at all–and that occurs under the fibromyalgia diagnosis. The “treatment” is shabby, at best (due to not only lack of affordability for all the things I need, but also NO access to more
qualified, compassionate professionals). My situation could be, has been, and likely will be again–much worse, so I count my blessings… AsI struggle here each day, taking care of myself as best I can under the circumstances, while searching for whatever I can find and afford to help myself in the midst of trying to raise my child (who also has challenges of his own),
with next to no moral support or help at all & rot…. All this and more while burning with pain and fever and vertigo and profound exhaustion and insomnia, and the many other wracking treats that go along with this ‘crud with no so-called
legitimate name’.
Watching people out THERE are still trying to decide whether persons like myself are ‘worthy’ of a diagnostic label which would lead to better access to respectful, compassionate, medically accurate treatment–along with targeted research into the condition by professionals without vested interests-rips my guts out.
Decades upon decades of lives lost and torn asunder…this is no way to run any country… Whenever I read that “they”
are STILL trying to decide whether I/we have any credibility, or value as a human beings…..knowing there ARE so many of us all over the world, and still “they” sit around discussing us at their symposiums and workshops over lunch & golf and dinner dances…getting their free samples, pens, tote bags, notepads etc., for listening to pharmaceutical reps tout the latest off label usage of a newly developed,or newly renamed and repriced psychotropic poison they’re going to try and shove down our throats, I feel nauseous. Also, knowing CEUs are granted for attending presentations on the newest panaceas for pain, & other problems, which often cause more & worse side effects than the original illness, while increasing morbidity & mortality of the chronically ill and in pain–instead of actually getting to the root of it all, & HELPING people LIVE….makes
me want to SCREAM until my voice is gone…
I find myself often feeling terribly ashamed that this is the land of my birth–not only because of these, but also many other issues. I am an educated & decent human being within my limitations….. I used to be a social worker…. I never wanted any of this, I DON’T want any of this! I want my independence, my dignity, my privacy, my right to self-determination and the right to decide the course of my treatment, alongside properly trained professionals of MY
choosing. Furthermore, when I disagree with a course of treatment and its twisted, ill-informed rationales–I want to be
able to exercise my right as a well informed client/consumer to refuse it–without being subjected (or fear of being subjected to–I’ve experienced both) various forms of reprisal.
I am sick to near death at times, not only from the illness itself–but also I am fed up with this condescending, paternalistic,
authoritarian, let’s give everyone psychotropics & some CBT, or nothing but a trip to the streets, or nearest ghetto if you have no insurance, or an inability to pay–approach to United States health care service provision. As far as I’m concerned–that paradigm needs to be blown sky high, figuratively speaking!
Enough already.
For once, I want some goddamn respect–I live in this body 24/7, 365, it is mine, and I know it well…I do not want to spend my valuable time in doctor’s offices, I am not a malingerer, I don’t receive any public assistance & I am certainly not someone looking for drugs–I need relief from pain, spasm, exhaustion, insomnia etc. I want my life back!!! I want to be able to cook for myself, shop for healthy food, clean my home, work, create, travel, pursue recreation, socialize, care
for my son, and do these things in freedom, AND without stigma!
I want to be as functional as is humanly possible, or better yet–cured, if only such a miracle could occur. Regardless, at the very least, I want respect for everyone the world over with this plague of ‘living death’, or whatever people feel like labeling it this year or the next! I would like–instead of reading how yet another of us died too soon of heart or kidney failure, cancer, or of yet more doctors stripped of licenses and sent to jail, or sued out of their life savings for treating pain–or reading how another of us lost her/his home, job, friends, family; ending up having completed suicide–to read, and hear it told widely that there is help, hope, acceptance and understanding…
I wish for us to be treated as though we are ALL welcome in this world (regardless of our health status, or any other state of being “different” from the so-called definitions of “normal” or “typical”), and that we DESERVE to be cared for…I want to be able to wake up each day knowing, without a shred of doubt, that I/we am/are considered as worthy to be alive as the rest of humankind. Persons with heart disease, diabetes, hypertension, etc., are not subjected to the torture, neglect,
stigma, suspicion & ridicule we experience…
I think it is well past time for those more able to stop spending the precious remaining days of our suffering lives mucking about, & put an end to this unspeakably heinous WASTE of time, energy, money, and human potential–on naming, and renaming the color of the bloody water that I, & those like myself are being left to rot and drown in…
I believe it is time to decide whether you’re TRULY going to help ALL your sisters and brothers live their best, most physically comfortable lives. The better you care for us, the better we can care for you! We are not without abilities; we are from all ages & walks of life, and we have much to offer, despite our limitations. Haven’t those doing the “naming and renaming” figured that out, YET?
We need care, we need support, and we need it NOW! We needed it decades ago… You don’t have to give us another name to do these things! My fear is that as long as the ‘medical sideshow’ in this country is being run by insurance, government & pharmaceutical company overlords–little will change, except for the creativity involved in the neglect & abuse of people with certain stigmatized health issues… I pray every day & night for this not to be… There are many of us who cannot live on prayers for much longer…
(please accept my apologies for the rambling nature of this response, the poor punctuation, etc…..I’m tired, I’m frightened, I’m sick as heck, & all I have left is a fading bit of hope…)
Stella
People are talking about the ‘Fair Name Campaign’ as though it is 1) ground-breaking and 2) a good thing. It is neither!
*********************************
No Comments
No comments yet.
Leave a comment
