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This story of courage and tenacity was first told in a private letter to an email discussion group. I found it so inspiring that I asked the writer if I could reproduce it here for more people to read. The author has CFS with Multiple Chemical Sensitivities. Recently, through blood tests, she discovered that she has at some time also had undiagnosed Ross River Virus - colloquially called "break-bone fever" due to the terrible pain it causes. She was probably ill with this at the time her story begins.
I remember the excruciating pain which nothing helped, barely able to reach the bathroom.
I got a referral to a rheumatologist at my own request, trying to find answers. At my first appointment, he told me I had Rheumatoid Arthritis. Next visit he came up with Polyarthritis - and the next visit Fibromyalgia! He told me to keep busy and active!
I tried hard to be active, but I had no strength - just pain and weakness all over. Even doing the washing up was too much for me. I could only get three or four plates done before the effort put me back to bed. After a rest, I would need to run fresh water and start again. The dishes never got dried. A burnt saucepan was a major tragedy - it would take me a week to get it clean! I lacked the strength to make the bed - even to pull up the covers was so exhausting I would have to lie down again.
My brain would not work. I could not read books - not even read Mills and Boon - the plot was too complicated (and we all know that there is only one plot in Mills and Boon!).
Knitting and crochet were too painful, and reduced me to tears in less than two minutes. I had given up spinning due to the pain. At first I had got an electric spinning wheel as my leg muscles were so painful - but then my hands went - and no strength either.
I lived in on a very isolated farm. It was a kilometre to my front gate, and then the track up to the house was around a steep hill. Most of my friends were too scared to even drive in. I had a telephone put in the bedroom - but the new plastic smell made me ill!
All I could do was lie on the bed! Cut off from everywhere and everything.
Then I thought - maybe I could manage the small movements of a sewing needle, and do embroidery? I did not know how to embroider but I had been to a demonstration of hardanger embroidery the year before. Maybe? Maybe? I was going to go mad just lying on my bed, with nothing to do all day except feel excruciating pain and the horrible side effects of the anti-inflammatory drugs.
I rang up a Craft Shop and asked for a book on hardanger, and could the shop owner please also send me the appropriate materials, threads, and needles. (Even if I could have got to the shop myself I wouldn’t have known what to ask for!)
That's how I started embroidering, teaching myself from the book. The instructions were for right handers - and I am left handed.
I got hooked!
I struggled to get up and do things in the morning, but looked for every excuse to get back to bed and embroider - and in the afternoons I again embroidered. I rang for more materials ... And as I rested and relaxed, and I gave up trying to push myself as the rheumatologist wanted me to, my health also showed some improvement.
I kept on embroidering - and was asked to teach adult education classes - which knocked me to bits, and put me back in bed. But I did it - and it gave me something to plan for.
Things moved on - I became qualified as an embroidery tutor and also a handicraft judge! Before long, as well as the teaching - which still knocked me about severely - I was writing magazine articles. Yes, these things were an effort - but something to look forward to - and also something to think back on. The pain levels abated - so long as I lived within my capabilities. Life had a purpose.
As I said to my doctor - at last I had found something to do in bed and get paid for it - which was both legal and moral! She really liked this, and laughed a lot - as there is so little which we can do when confined to bed. I took her some of my embroidery on linens where I had painted the backgrounds. (Unfortunately, I had to stop doing these as my eyes puffed up, probably due to the acrylics or formaldehydes in the paint.)
Then the next year I had a severe relapse, after the government sprayed chemicals on the farm next door. A year in bed - no strength to get out! I found I could embroider one thread an hour - and then needed to rest! Slowly I built up from this.
People had been suggesting I ought to get my original designs published, so I approached a publisher over the phone. And slowly but surely I assembled enough work for a book on Assisi Italian embroidery - with all Australian designs. (At the time Australian designs were terribly scarce.) I had to write it up by hand in bed, and my daughter put it on a word processor for me. I did all the graphics, and graphs, and the layout for the photographs. My farmer husband did the photography - no small feat, as the completed book had 50 colour plates, plus many black and white photographs which my husband and a friend developed. I had allowed plenty of time when working out the contract deadlines - and submitted the manuscript two weeks early!
The following year I had to travel interstate to an allergy unit. At the same time I was doing the work on proofing the book - quite convenient as my publisher was in the same city - the courier went none stop. Christmas week I held a copy of my book in my hands - an overwhelming feeling! Later my book was launched at a friend's art gallery by the Consul General of Italy for the State where I live (as it was about Italian embroidery).
The book is now out of print, but it went overseas to New Zealand, the UK, Canada, USA, and Israel - and has even been used as a textbook in this country. I did not make much money out of my venture - only enough, after expenses, for a fridge and freezer pair and a ducted vacuum cleaner. But it had great therapeutic value in helping me keep occupied while I was so ill - and I have the wonderful memories of the launch.
My work has been in exhibitions in galleries in Australia, and also two pieces in New York, and a photographic exhibition of my work at Frankfurt in Germany. Quite an achievement for someone who had never embroidered before she turned 40! I also had a piece of my work selected to represent my State in a Bicentenary exhibition - what an honour - and it was placed second nationally. It was a small supper cloth with all of the state flowers on it, and a map of Australia with sprigs of Golden Wattle- our National Flower - in the centre, with the dates 1788-1988, all worked in Assisi Embroidery. And that occurred only six years after embroidering my first stitch! As one of my friends said, I discovered talents I did not know I had - and never would have known about if I had not got sick - so this illness does have its compensations.
Yes, life can go down different pathways with this illness - but there can be successes along the way. No-one will know in 100 years whether I was good at housework, cooking, etc. but there will be the evidence of my embroidery for posterity.
Now life is taking me in other directions, as my health has improved at present - but the embroidery skills are still there.
So do hang in there - there is always something we can do. And when all else fails, we can be a loving friend - a listener - whom others can come to.
After appearing here in November 1999 this story was published in Emerge - the journal of the ME/CFS Society of Victoria - the following year.
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