My name is Melissa Armstrong. I am 44 years old, a wife, mother of three children and a grandmother to one. For more than ten years I searched for answers as I felt like I was living in a 99 year old body. I thought this can’t be right; this can’t be who I am and how I am supposed to be living. For years, I saw doctor after doctor. They suggested I was depressed, but I knew there was something more. After ten years and seeking professional help from physiologists, my body seemed to be getting worse.
Jumping from one job to the next and struggling with fatigue I would push myself to get up and go to work. I’d feel so drained trying to keep up with everything and to have to go back and do it again the following day. My emotions would get the better of me at times, but I was strong and determined to push through. After all I was still young.
Doctors and specialists looked at me with blank faces saying they had no idea what was wrong. They must have thought I was a hypochondriac, so I went through my fair share of GPs.
It was through pure luck that I was able to find my diagnosis after reconnecting 15 or so years later with my mother. I was able to get my family’s medical history and discovered my mum had similar symptoms. My great aunt was diagnosed with mito in 1989, but not all family members were tested, including my mother. Other family members had received letters about genetic testing, but did not get tested. This is a shame because now our generation is suffering in silence and searching for our own answers.
I finally stopped feeling like one of those neurotic patients who seeks medical help for no reason. It has taken a couple years to finally get to where I am today but after much digging, I was able to have a genetic test for the Twinkle gene which causes Chronic Progressive External Ophthalmoplegia (CPEO). I was hoping I would have something else as I knew CPEO had no cure, no treatment, nothing. Six months after the test and a couple of weeks before Christmas I received a letter in the mail confirming the diagnosis. I cried and was relieved all at the same time.
I cried because I had this stupid disease that has no cure and yet I was glad to finally have an answer to my symptoms.
I researched as much as possible to stay informed and to help my family members who were undiagnosed, and who had similar symptoms. Depression set in hard as I realised there was no cure, the disease is rare and researchers are just beginning to understand mito. When and how far along are they in finding out what causes this and how do they fix it? My head was racing with questions with no answers.
Every day is different. Maybe one or two days a month I get lucky and have no symptoms. I treasure those days. I suffer from one or more of ailments each day which range from chronic fatigue, droopy eyes, headaches/migraines, cramped legs and aching muscles, hot to freezing hands and feet, changes in body temperature, difficulty with concentration and memory, weakness down my left side, nausea, dizzy spells, intermittent hearing loss, blurry vision, and common cold symptoms.
It’s hard to socialise because I get so tired and can’t seem to keep up. When I go for lunch with a girlfriend, I have to come home to sleep in the afternoon. My days are limited because if I stay out all day even just to go shopping, I know the following day I will be in bed recuperating. I have figured out that it is KEY to listen to my body.
If you are struggling with a diagnosis, keep searching. Never give up hope, seek a new doctor with fresh eyes and new perspective on the situation. Ask family members, search ancestry, do as much research as your body will allow and hopefully you will find some answers.
Read more about Melissa’s diagnostic journey and her experience applying for Total Permanent Disability (TPD) through her superannuation fund.