My illness

I have been very ill since 2000. In 2006 I was diagnosed as having ME. (Referred to by some as CFS, though the choice of name to refer to ME/CFS is disputed and controversial.) In 2008 I developed diabetes, which progressed at a very rapid rate and became uncontrollable even with insulin injections. Then in 2013 I was tested to find the cause of my diabetes and the tests showed that I have Maternally Inherited Diabetes and Deafness - MIDD - which is a mitochondrial disease caused by a mutation 3243A>G. MIDD is neither Type 1 or Type 2 diabetes, but is a different kind where the amount of insulin that I produce fluctuates because of the way that mitochondrial disease affects my pancreas. My hearing was affected quite recently and I use hearing aids now.

Since January 2015 I have been under the care of a mitochondrial disease specialist hospital which has confirmed that my mutation is the cause of most of my symptoms - far more than just MIDD. As a result of this diagnosis I now see a range of specialists regularly to manage my symptoms and monitor my health. The symptoms of my mitochondrial mutation include all the symptoms that doctors had told me were caused by ME, and nobody is sure what causes that anyway so I am uncertain whether my diagnosis replaces ME or confirms it.

In the last few years I have also suffered from depression and anxiety which has affected and been affected by my physical illness, to the point that my mental problems are just as disabling as everything else I have. Past interactions with the DWP have affected me badly enough that I now have panic attacks whenever I get any communication from them.

Some of my symptoms:

Constant muscle pain - aching and burning, fluctuating unpredictably
Muscle weakness
Muscle spasms
Exhaustion after any activity no matter how small
Brain fog (mental fuzziness and lack of concentration)
Chronic migraines
Wildly fluctuating blood glucose, often low or high for no discernible reason
Light sensitivity
Nausea
Irritable Bowel Syndrome
Breathlessness

…and many more symptoms that I haven’t listed here.

When I talked to my wife about how my illness affects me and she summed it up as “Every cell in your body cannot produce enough energy therefore nothing works properly” but then she would say that as she is a biology teacher. My main symptoms are constant muscle pain and weakness and immediate exhaustion on any activity. I am usually unstable on my feet and often fall. This means that I cannot walk very far and use a wheelchair on most occasions when I leave the house. On most days I am able to be up and out of bed somewhere between 6 and 8 hours. I have severe insomnia despite being stuck in bed so much of the time. Pain, fatigue and brain fog restrict my ability to complete necessary tasks or conversations.