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This is my journey in search of healing. I feel sure others will relate to my experiences. As I became more ill I met a lot of disbelieving doctors and received a lot of advice to get off my butt and heal myself. The journey began many years ago as sometimes crippling pain and vague niggling symptoms came and went. The following is all too true.
I've read Quantum Healing, Your Body is Your Doctor, Nutritional Healing, Acupuncture, You Can Cure...etc, in fact I have a library of healing books, a credit to any hypochondriac. I've swallowed herbs and vitamins, followed diets and struggled with get fit campaigns. I've meditated and moaned. I've prayed to angels and spirits, swore and cursed the devil himself as well.
I've had endoscopies, colonoscopies and laparoscopies. x-rays, ultrasound, MRI and CAT scans. I've been given antidepressants until my eyesight was affected and I had to decide whether to be blind and happy or see a miserable world. I've had antibiotics, antihistamines and HRT. Caffeine and sleeping pills, analgesics and antacids. In fact I think the State budget would be noticeably healthier if an answer was found to my problem and I could get back to work.
In my past I climbed mountains, scuba dived and rode horses down steep mountain sides. I travelled in many foreign lands and worked as a nurse escort transporting ill or injured people from around the globe back home for medical treatment. I lived a full and active life and have four energetic, intelligent children who are beginning to show distressing symptoms of looming familiar problems.
I've lived in PNG, Asia and England since I grew up on an outback farm in NSW. I've worked in hospitals, nursing homes and asylums. I could have picked up anything.
I lived for 2 years next to 25 acre radioactive tantalum dump in Asia. I've been inoculated for just about everything . I've been exposed to herbicides, pesticides, insecticides, sheep dips and drenches, orchard sprays and mosquito foggers, lead paints, polyurethane and cyanide. I've been bitten by ticks, mosquitoes, fleas, bees, bed bugs and wasps, sea lice and head lice, scabies, spiders and ants.
Despite my crippling pain, oedema, puffy dark eyes and skin lesions doctors claimed for years I was psychosomatic or have "Munchausen syndrome" when standard tests revealed nothing. Being female, overweight, over forty , and over tired wasn't the way to be taken seriously. I felt I was seen as "past my use by date" and utterly rejected.
I just want answers. I now have chronic pain finally diagnosed as "Fibromyalgia" which I believe is linked to chronic fatigue. I am tired of being told to buck up, get a life, get exercise, join a gym, go jogging, walking, diet, take this pill, eat vegetarian. drink water, fast, find a man. As if I hadn't tried them all with determination. I am still alive but I want quality of life. If the pain was all in my mind I wanted out of it.
Then I have found THE INTERNET and I find scientists around the word, implicating organochlorides and pesticides, preservatives and parasites, fungi , bacteria and a "leaky gut" , virus and stealth viruses, sleep deprivation and dysregulation of neurotransmitters, encephalopathy, mycoplasmas, cardiomyopathy and enzyme dysfunction, excess lactic acid and thyroid dysfunction. There's Lyme borreliosis and Rickettsia australis from ticks, leptosporisis and mastitis from cattle.
I see DNA, CAT scans and SPECT scans, EEG and ECG , the urine, blood and faeces all show abnormalities.
I've found there may be a genetic predisposition and the immune system, lymphocytes and cytokines, neurotransmitters like seratonin, melatonin, norepinephrine are affected, the hypothalamus and the limbic system are affected. There are hypersensitive pain receptors ( I didn't need to find that, but corroboration is comforting). I put a name to my spasmodic crippling epigastric pain: "Costochondritis". That helped ease the fears.
I've been advised to "modify" my diet (again), fast, exercise and not to exercise, try seratonin and GABA, Vitamins ,minerals and amino acids, Essential fatty acids, acidophilus, herbs, guai and liquorice, FOS, magnesium, Coenzme Q10, Ritalin , Vitamin C, antibiotics etc etc. I now know Chelated is better and what not to mix with what for better absorption. And I know there are companies peddling "miraculous cures" by pyramid selling that cost a fortune.
I've read about brain fog and the effects of impaired brain flow on cognitive ability, but still some persist in advocating CBT and say its AIMH.
CFS not only leaves you physically exhausted, but the associated social stigma created by the psychiatrists' determination to label this a psychosomatic disorder leaves you with no hope. Because no matter how hard you try to rethink your way out of this illness, it doesn't go away.
It seems like the world has judged and found you wanting. It shatters your self esteem as you doubt yourself because all around seem to believe you are shamming illness for some obscure reason. I know how disturbing it is to your sense of self to be exhausted, weak and in pain and being told you are imagining it.
You try the exercise programs and not only do they not work for you, but you actually feel worse. You know you would have to be mad to create that sort of world for yourself. There was only one conclusion to be drawn. I must be insane.
Through the OzME mailing list I found a gem of a doctor who believes me, and I have now tested positive for mycoplasmas, staphylococcus, and viral infection and show thyroid dysfunction. The [formerly University of Newcastle] Bioscreen tests showed something is very seriously wrong with my metabolism and gave me guidance to at least suppress the symptoms and relieve some of the pain and fatigue.
Detecting abnormalities took away the mental stigma. I was given hope by the results of those tests, even though they told me I had serious medical problems. I felt empowered. If this is physical then I can do something about it.
Although I would not wish such a learning experience on anyone I have to admit that amidst the pain and tears the experience led me to books I would otherwise not have read, brave people I would not otherwise have met, and learnt empathy with others in pain and suffering that I did not have. I have gathered valuable insights and developed a spiritual awareness I would not have gained.
Thank you for reading my story. I hope it helped you feel less alone in your own search for healing.
Liz
March 2000
As I lay in bed this morning I felt it was time to write the next stage in the saga of my search for health. I know the journey continues. I am not sliding back downhill and I have a landing place for the moment that has bought me some respite.
At the beginning of 2000 I was bloated with pitting oedema like I had been pumped just under the skin with play dough. I had a constant burning sensation in my legs and my spine seemed to be swaying and snapping at nerves. My hands looked like a lizard as summer dermatitis crept up drying, scaling and so itchy. Pain was my daily companion. I slept for short periods
I seemed to attract people who found me wanting and tried to organise my life for me. I wasn't living up to their expectations. I was really angered by the attitude I found around me that something was seriously wrong with my mind. It would have been so easy to give in, curl up and die. Yet this caterpillar wasn't going to crawl for ever, begging for mercy and grains of sympathy. Survival was a fight on all fronts.
I scoured the net and like a bird picking at fruit I pecked at the best pieces of info that which made sense for me. I knew something was seriously wrong with my body and I wasn't going to go out without fighting.
The people on chat groups continued to be the best sources to locate info. The information on web sites like Moira's is amazing. I cannot thank enough those brave souls who shared their stories and self discoveries. Those willing to talk about their own search and share their experiences put wind in my sails in my journey towards health.
The GP I found is a gem and allowed me to test and try different ideas. He kept abreast of the latest research and I knew I had finally found an ally, a stalwart supporter. Any person knows their own body better than anyone else. Those doctors who believe their patient heal by the essence of their trust.
My thyroid levels were on the fringe of the "normal" range. That median means people on the edges of the scale will live yet have miserable lives. An article in Lancet led me to try T3 and T4. (see articles at Thyroid Disease http://thyroid.about.com )
Weight had crept up as I lurched about in pain. With so much to lose I took up the challenge of the low carb /high protein diet. It made sense to me. I gave up all grains. Within a week I had found knowledge worth more than gold. My body was intolerant of some very ordinary foods. One man's meat is another man's poison. My oedema drained away. Hey I could see ankles . The pain dropped and I could dance. I went overboard on the cheese and cream and my hands turned into bubbles and I was even more itchy and scratchy. Found the links to coeliac (celiac) disease , milk intolerance /dermatitis and an article which mentioned people with coeliac found in psychiatric hospitals. Ah Ha. Links between mind , unhealthy body and food intolerance. I am working through an elimination diet now. (Look up http://www.foodcanmakeyouill.co.uk for a guide to food intolerance)
Sleep eluded me and I tried Melatonin. At last I could wake in the morning. I don't need it now but it tided me over into a sleep pattern.
I started looking at Neurolinguistic Programming. (NLP) . Interesting stuff about the patterns of belief embedded in the subconscious and how we process our world . http://www.universalevents.com.au/nlp.htm
There may be something in the idea that our minds create our world. I staunchly believe that stress makes us vulnerable to dis-ease and opportunist bugs , cancer, virus etc colonise and cause damage and have to be routed before the body can truly heal.
What wins battles and the war going on in our bodies is the strength of will to fight , a conviction that you will find health, a diligent search for knowledge of what is right for you and support of family and professionals who do not label you mad and expect you to metamorphose into a healthy body just by changing your mind. Sometimes damage is irreversible and all we can do is support the body in its search for ways around the quandary.
I think its not the problem but how we overcome the impediments and evolve into greater understanding that is the essence and meaning of life .
More and more I feel at one with the belief that " the divine radiates from the depths of matter" The Universe is in the process of self creation . That matter is the manifestation of the spirit and cannot be separated. All is inorganically integrated in one single growth and one historical process and all share the same upward progress towards an era of fulfilment. Every individual does make a difference to the collective future.
Body and mind are interdependent and both need support to heal. There are ways. Never ever give up.
Last week of the year 2000 I started work again. Not in the job I want to be in but one that will pay my way to get where I want to be. I feel can plan goals again.
Never, Ever Give Up.
Liz
December 2000
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