My name is Sheila and am married to Christopher for 26 years, we are both in our 60’s. My husband took early retirement from his GP post to help with my care and mobility three years ago. We have just one son aged 25 who lives at home with us, he is a student and musician. He was diagnosed with CFS and Asperger’s Syndrome aged 10 and has been home educated ever since.
My medical history has been eventful since childhood and there have been indications of mito-related problems from the start. I have always had balance/coordination/visual perception problems but in the 1950’s you were just called lazy and clumsy and in my case, fat too.
In my adulthood I learned to hide my problems and managed to work full time through to the time I married when I was 36. This continued until my 50’s when things became difficult and I couldn’t walk on shiny floors or inclines, I started using a walking stick and then a quad stick. In the last 6 or so years I have had to use a wheelchair outdoors, although I can get around the house my ‘touching’ surfaces to help give me a sense of place.
I have a number of conditions which may be related to mitochondrial disease. This includes diabetes (it is thought to be mitochondrial diabetes), asthma, thyroid insufficiency, lymphodema, IBS, intersitial cysytitis, perennial rhinitis, and deafness, and of course, balance and coordination issues along with fatigue.
At this stage of my life journey I find that fatigue really dictates the pace of life for me, I am usually only up from bed for about 5 hours per day. I can manage to do a little Maths tutoring online through Skype, usually sitting on the bed, maybe 2 or 3 hours a week. This is exhausting but incredibly satisfying when I am able to improve a student’s confidence and grade.
I have recently taken up weaving as something creative and relaxing that I can do.
I had a muscle biopsy in 2012 which revealed severe depletion of my Complex 1 but have not as yet a label or type of mitochondrial disease. It is thought that my mito is not hereditary although I can point to a few family members who have had strange conditions, such as my Dad, my Mum’s Dad and my son.
My hope is for a formally identified condition and then see if my son may have it too or not. I also hope to be around to see my son marry and become rich and famous!
Sheila, September 2019