Life with Myalgic Encephalomyelitis & Fibromyalgia

Throughout my life, I have worn many hats; working as a Teacher’s Aide and with the Police Youth Club each afternoon and throughout the school holidays. I remember enjoying my life to the fullest. In 1989 we moved to farming land, country Queensland where I continued working as a Teacher’s Aide not knowing what the following years would bring.

I became very unwell. I saw a Gastroenterologist, Rheumatologist, Gynaecologist, and then I was sent to a Neurologist, who told me “he could find nothing wrong!!! I was just overweight, unfit, and I should go join an aerobics class”. Finally, in 1991 I saw a Diagnostic Specialist who diagnosed me with Myalgic Encephalomyelitis and told me I needed to distance myself from harmful chemicals as I was now chemically sensitive. We moved to Toowoomba, where I found an understanding doctor and joined the Toowoomba ME/CFS/FM Support Group which later became ME/CFS/FM Support Association Qld Inc.

"I was surprised at their response “I would be better in six months”.

In June 1992 I had a major relapse, a brain like mush, reflux, and headaches worse than any migraine, organ tenderness, and terrible joint and muscle pain I had experienced so far. I was getting worse. Unfortunately, my relationship broke down and my two teenage daughters supported me and the household.

When I applied for a disability pension and was knocked back, I was surprised at their response “I would be better in six months”. By this stage I had had ME for three years and was using a walking stick, wearing a neck brace and needed a wheelchair to go out. With the help of Welfare Rights, I fought for my pension and won.

My health continued to challenge me. In 1994 I was diagnosed with Fibromyalgia. When the girls left home to go to university, I found myself living on my own. My experience encouraged me to join local support groups to help people living with ME/CFS and FM.

"This is not the life I would have chosen for myself, but it has still been a life worth living".

I have enjoyed being on the committee of the support group for the past 28 years. I am the President, Secretary, Editor and Media Liaison. I love meeting other sufferers and talking to them and I enjoy putting together our 24-page journal that goes out to members, support groups, government departments, the state and national libraries and 7 countries around the world. I had the opportunity to represent Australia in Washington DC at a Fibromyalgia workshop and do a talk to 160 Queensland Centrelink Assessors to help them understand ME/CFS and Fibromyalgia, I’m also the Queensland Director of ME/CFS Australia. This work is so meaningful to me and has kept me active within the community and allowed me to continue my love of travel and meeting new people.

Despite my health battles, I managed to save and purchase an around the world ticket to see my two daughters who were travelling. I organised the trip to include stopovers to break up the flights and allow my body and mind time to recover. My bag would sit on the seat of my walker and staying in backpackers kept it affordable. I thought other backpackers would say “not only is she old, she’s decrepit” but instead they would say, “I hope I am still backpacking at your age and no matter what is wrong with me.”

I know travel can impact so many people living with chronic conditions and pain. It can take me weeks if not months to recover, However, I promise myself I will not complain and keep the photos I have taken from my travels visible to remind myself “it really was worth it”.

My girls have been my shining lights, and I am lucky they both have wonderful husbands, and two of the most beautiful grandsons, 9 and 5 who are also so understanding of the limitation’s grandma has.

This is not the life I would have chosen for myself, but it has still been a life worth living.

Lyn.

If you would like to order a copy of Lyn’s resources, please email info@painmanagement.org.au

About ME

Up to 240 000 Australian's live with Myalgic Encephalomyelitis.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems, among others. ME is classified as a neurological disorder by the World Health Organization.

Symptoms include:

• chronic fatigue

• sleep dysfunction

• widespread pain in muscles or joints

• cognitive difficulties, such as confusion, or problems with concentration or memory

• sensitivity to noise or light

• light-headedness or dizziness

• difficulty with being upright

• gastrointestinal problems such as nausea, abdominal pain, bloating and irritable bowel syndrome

• flu-like symptoms

• problems with temperature regulation

• sensitivities to food, medications or chemicals