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Kit's story and some poems
My name is Kit Murdoch (alias "Tigger" on ICQ and IRC chat). I am 32 years old and live in Tasmania, Australia with my partner, Jon. We've been together since before I got CFS/ME, over five years now, and Jon's been there for me all the way!
I have a loving and supportive partner in Jon, and his caring for me and his tenacious fighting for my right to quality of life has kept me going. He is my Knight in Shining Armour and I've certainly fit the "Damsel in Distress" rôle at times! ;-)
Gradual onset?
I think that my story actually begins in 1984, when I had 3 months totally bed-ridden with Glandular Fever, and two years later when I was again bed-ridden with Chicken Pox. Both of these "stealth" viruses have been linked with CFS/ME. So perhaps I had a "gradual onset" from way back then. Certainly that's when I date my lack of general energy from.
A background of stress
But the real trouble started in 1994. I'd been working in a very high stress job in a Training Consultancy and already had all the signs and symptoms of a stress-compromised immune system. I had chronic insomnia (only sleep 1 - 2 hours a night) which had been going on for nearly six months. I decided that I needed a break.
Jon and I arranged to sit a 10 day meditation course in the Blue Mountains, NSW, Australia. Shortly before the course commenced, in Sydney, I contracted a particularly virulent form of influenza (treated unsuccessfully at the time by two consecutive courses of antibiotics). From that point on I never really recovered.
Travels
Not knowing what was wrong with me (fatigue, pain, and all the other symptoms that go with CFS/ME) and assuming that it was caused by stress ... we resigned our jobs in December 1994 and went travelling around the world for two years.
We went to USA, Canada, Mexico, east and south Africa, Europe and India! As you can probably imagine, travelling with CFS/ME (undiagnosed) was no picnic. And we used rather a lot of money in the initial stage of our journey seeing doctors in the USA ... which has really made me appreciate more the free and low cost medical help available in Australia.
Amoebic colitis - the last straw
Then, in December 1996 we were staying at Varkala, Papanasam Beach in Kerala State, India (southern India). There I contracted amoebic dysentery and then amoebic colitis probably from contaminated water. I was admitted to a "women's" hospital there in the country for nearly a week. It was a small, rural, primitive, teaching hospital. It came complete with pigeons cooing through my broken window every morning at dawn, and had several resident cats (to eat the rats!).
One morning I woke to find that my IV drip was covered in thousands of tiny red ants, fortunately it wasn't the drip that was actually connected to my arm at the time, or I would have really freaked out! Also, we had a difficult time convincing them to use new needles for me (as our own supply quickly ran out)! Fortunately Jon was there to argue the case!
Anyway, as soon as I was well enough, we took a 2 hour taxi trip to the nearest airport and flew from there to Delhi (where I rested for a few days), then on to Sydney via Hong Kong, and finally home to Tasmania.
Diagnosis
I had many many tests when I got home (I'm sure most of you have been there, right?), as my doctor tried to discover what was wrong with me. And as soon as I started feeling a little bit better, I tried to go back to work, struggling to survive the pain and bone crushing weariness each day. Finally, in July 1997 I was diagnosed with CFS/ME by the urine test available from the CFS Research group at the University of Newcastle, NSW, Australia.
So, I have had CFS/ME for at least 4 years (14 years if it was indeed gradual onset dating from the Glandular Fever episode).
Treatments
Refusing to give up and being an eternal optimist, I have "been there and tried that" with just about every conceivable treatment - conventional medicine and alternative therapies - with no outstanding success so far, except for Osteopathy which really helps with the pain and with improving freedom of movement in my joints and muscles.
I've tried aromatherapy, Traditional Chinese and western herbal medicines, mineral and vitamin supplement nutritional therapies, chi machine oxygenating massager, kinesiology, aura reading, bio-feedback devices, hypnotherapy, self-hypnosis, psychotherapy, Reiki, chiropractics, massage, herbal tea remedies, meditation, blue green algae, evening primrose oil ... and in terms of conventional medicine - the Rheumatologist, Pain Clinic and my doctor have tried treatment with AED (anti-epileptic drugs), anti-depressants, pancreatin, and others.
Current medications
1. 50 mg morphine sulphate - 12 hour sustained release, for even pain coverage
2. 2 mL (4 mg) morphine syrup as often as required for pain "spikes"
3. 300 mg Zantac daily for chronic acid reflux
4. 5 mg Primolut N daily for endometriosis
5. herbal tea remedy for night sweats
Optimism for the future
There is a bright spot on the horizon!! I've just received my new test results from the Newcastle University research group and they have devised a specific treatment strategy which, in consultation with my GP, I shall be commencing shortly.
I have also been tested for mycoplasmas and rickettsia in Melbourne, Australia and there are various other treatments that have had some good results if those tests come back positive.
My doctor is wonderfully supportive. He has e-mail and I can send him questions and research material at any time of the day or night! He is learning about this disease with me, and is happy to work with me on different treatment plans, which we research together, until we find something that works!
Pain control
I researched successful opiate treatment of chronic non cancer pain and e-mailed any articles that I found to my doctor. So now I have effective treatment / relief from pain. Because it was so difficult to convince my doctor to treat my pain adequately, I believe that a major education process is necessary so that the medical profession is brought up to date about appropriate pain treatment and the relative safety of opiate treatment. It's certainly better for my liver than the many paracetamol/codeine tablets that I used to take!
Things to be done !
I'm not just waiting around for a "cure" though. I'm not working, thanks to the support of a Disability Pension (and Jon's Carer's Pension) so what energy I have is being directed where I feel that it is most beneficial.
- I am working on a Disability Pension Resource & Information Kit for people with CFS/ME, to help others through the process and to give suggestions for effective applications to the Dept of Social Security.
- I have just started a Newsletter for our local CFS/ME support group and hope to get the first issue out shortly. Interestingly enough, the wife of Tasmania's (soon to be confirmed) Premier, Mr Jim Bacon, has had CFS/ME for some time, and so I will be asking her to contribute her story for our first issue! Other projects for our local group that I'm working on include, publicity posters, specific topic information brochures, a web-site, business card sized hand outs explaining CFS/ME for members.
(Since writing the above, Kit has done a lot with the Support Group including organising a well-publicised talk by Dr Richard Burnet of the Adelaide CFS research team ... )
My life in a nutshell
My life is rich, and full ... and only gets "paused" temporarily by the occasional "I-feel-rotten make-the-world-go-away no-I-won't-come-out-from-under-my-quilt" moments. I'm sure you've all been there, right? :-)
I love sending and receiving e-mail;
I play computer games (brain fog remedial therapy I call it!);
I play board games (especially strategy and word puzzles);
I write poetry, and I play the flute;
I do Vipassana Insight meditation;
I love crystals, candles, incense and aromatherapy;
I have travelled the world;
I like reading sci fi, fantasy, erotica and murder mysteries;
I don't have any children or pets;
I smoke Indian herbal cigarettes (Beedies);
I have a wicked and warped sense of humour;
I have an eclectic taste in music;
I'm pretty much nocturnal (like most of the marsupials in Tasmania!) as I stay up late and sleep late.
Kit, August 1998
she resigned from the rat race
life in slow motion
and took on a snail's pace
an unusual notion
she noticed the smallness
the beauty that rests
in wholehearted beauty
of one moment guests
being here truly
being here now
studying duly
still learning how
stillness was new to her
slowness so strange
quietness flew to her
tranquility reigned
time to let go of it
time to just be
learning to think & sit
learning to see
watching her steps each one
taking great care
and when each day is done
simply be there
loving the little things
seeing them pass
stars in the night sky
dew on the grass
how she had missed them
in a life all too fast
now stopped to know them
and see them at last
and though she is so in pain
one thing it's taught her
how to be young again
and how beauty sought her
she's melting into a time
like honey that's cold
which moves ever slower
although she's not old
she's striving for nothing
a low flyer she
she's learning in solitude
a new way to be
© Kit Murdoch 1998
Just imagine, if you will.
Settle down and sit quite still,
And I will tell you, true and free,
Just what it's like to have M.E.*
You have the 'flu, your toenails hurt,
Your tail is dragging in the dirt,
You're hot and cold, your mind is dull,
Your brain is pounding at your skull.
If you try to read a book
It's blurry every way you look.
And when you want to watch TV,
Or concentrate on what you see ...
... your mind is foggy, dull and slow,
Your brain won't start, it doesn't know.
You need a word, you cannot think.
You think your thunker's on the blink.
It hurts to move, it hurts to sit,
Breathing even hurts a bit.
You ache in spots you didn't know.
It's always there, it will not go.
You haven't slept in seven years.
Draw the curtains, cry your tears.
It wasn't meant to be this way!
It isn't fair, you're not okay!
- - - - - -
Does this seem a bit too tough?
Your imagination's had enough?
Well you may stop - but I endure.
For me, you see, there is no cure.
I cannot work, I never dash.
Any stress can cause a crash.
Fifty symptoms stand in wait
To pounce on me at any date.
At any instant symptoms change.
It's disconcerting, always strange.
You can't predict what each day brings -
You cannot plan ahead for things.
I've tried the pills and swallowed potions,
Burned my incense, rubbed on lotions,
Tried the snake oils, turned my bed,
I stuck ten magnets on my head!
What have I learnt from years of this?
Do not wait for things you've missed -
Find a passion, small and slow,
And gradually, watch it grow.
Find your joy in solitude,
Embrace the quiet interlude.
Treasure friends who understand,
Those who love you won't demand ...
... a single thing you cannot do -
Friends like these are ever true.
And do not strive to fight what's real -
Just find a place to BE, and HEAL.
Don't give up, and don't despair -
A healing place is always there.
And though my flesh is surely weak,
My spirit and my heart will speak ...
... to you of hope, and times of laughter -
Today, tomorrow, ever after.
This is what it's like for me -
Each day of living with M.E. © Kit Murdoch, February 2000
Read more of Kit's poems at FOG CLUTTER, a website for the literary productions of the CFS-W mailing list members !
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