My Journey

Photo credit: Marg Lee

My journey with this ongoing, at times extremely debilitating illness began in 1978. While nursing children at my local hospital I became suddenly very ill with pleurisy and pneumonia. Tests at the now defunct Infectious Diseases Hospital at Fairfield showed that the Coxsackie B virus was responsible. At the time I was told I may take twelve months to recover…that was 40 years ago!

I was a young mother with three pre-school children active and involved in my local community until I was stuck down by this mysterious illness that no-one understood. The fatigue was overwhelming, my body ached from head to foot and I lost weight dramatically as my gut no longer functioned properly. Initially I did look sick but people would have thought that I suffered from anorexia. In order to function and cope with my children I would get out of bed do what was necessary for them in the morning and fall back into bed again. Later in the day would get up and cook, feed and get them to bed and collapse again into bed

I was hospitalised at least 3 times for severe “depression” Yes I was depressed but it was because my body had failed me and I was grieving the loss of my health. Any energy I had was quickly used up and I would physically collapse then feel depressed. Eventually I was put on lithium which caused my thyroid function to plummet and a terrible tremor.

Over the next ten years I would go from doctor to doctor trying to understand what had happened to me. Unfortunately I also required surgery and discovered that my body reacted badly to anaesthetics leaving me with gross major muscle weakness and loss of balance.

Slowly I began to recover only to relapse again following an illness, anaesthetics or dental work. I had managed to get back to work part time and following yet another relapse I became very angry and refused to accept that I was “a depressed lady” as I had been forced to resign from a job I loved.

Finally I received the correct diagnosis from a neurologist in Melbourne in 1987 and my relief was enormous. It did not change the fact that I was suffering from an ongoing and debilitating illness. As I could no longer work I was forced to claim the Disability pension. The fact that ME/CFS was not acknowledged as a legitimate illness that process was long and tortuous.

In 1999 at age 50 I suffered Heart Failure and was diagnosed with Cardiomyopathy most likely as a result of the initial infection or undiagnosed OI/POTS despite  undergoing many heart tests over the years for my constant tachycardia which specialists at the time did not understand or recognise.

Menopause caused yet another severe issue that of crippling anxiety as well as severe hot flushes which required me to take a low dose of an SNRI antidepressant. The flushing has never stopped and I do wonder if it is a disordered HPA axis. I know the accompanying anxiety is physiological! I meditate daily and the panic brings me out of that too.

However I am the sort of person that truly believes that if one door shuts a window opens.

I live in a beautiful part of Victoria Australia and having ME has allowed me to slow down and literally smell the roses. I have taken up macro-photography which has given me much pleasure.

Support Australians with ME/CFS by donating to ME/CFS research.