Living with Myalgic Encephalomyelitis...

I sometimes mention in passing that I have M.E., but I realised that I don't really talk about it.  I decided I should change that. 

It's all about M.E.
In 2009 I was diagnosed with post-viral fatigue following a month-long virus, which after several months inevitably manifested as M.E..  Having always been a determined sort of person (or stubborn, as my mother calls it) I refused to let it win - I was not going to become housebound or let some damned illness rule my life.  Being blessed with access to private healthcare I spent a year under the care of an excellent medical team, weekly back and forth to hospital as an outpatient, and I am lucky enough to be able to lead a fairly "normal" life.

Myalgic Encephalomyelitis (M.E.) is a chronic degenerative neuro-immune disease. A child or adult with M.E. has serious immune and cardiovascular abnormalities, with resulting serious CNS (central nervous system) consequences.

All types of people at all ages are affected. Severe and debilitating fatigue, painful muscles and joints, disordered sleep, digestive disturbance, poor memory and concentration are commonplace. I have all of that, along with breathing difficulties and tachycardia. Back in 2010 a leg spasm was so severe that I broke my little toe as it caught the back of my sofa. When I am tired, and by tired I mean the type that no amount of sleep can resolve, I can easily get lost.  I went down a different staircase at Tower Bridge a few weeks back and I literally had no idea where I was.  I honestly believe that being an introvert has been a saving grace - needing plenty of my own space has given me the opportunity to manage my illness.

There is currently no accepted cure and no universally effective treatment. Those treatments which have helped reduce particular symptoms in some people have unfortunately proved ineffective or even counterproductive in others. For me, treatment means a healthy diet, maintaining running when possible, immune-boosting and different vitamins and minerals tablets a day, plus sleeping tablets on a Sunday.

In some the effects may be minimal but in a large number, lives are changed drastically: in the young, schooling and higher education can be severely disrupted; in the working population, employment becomes impossible for many. For all, family and social life become restricted and in some cases severely strained. Less than 5% of those diagnosed lead a fairly normal life, 30% of M.E. patients are housebound and/or bedbound and are severely limited with even basic movement and communication, and I don't even want to think about the 3% that result in death and the much higher percentage that result in suicide.

But this is just what it's like me. This is just a small snap-shot of my life, and I don't pretend that this is what it's like for others; some have said that I make living with M.E. look easy, but they don't see the bad days.  By comparison, I really am one of the luckier ones. 

Mental health knows no boundaries, and we shouldn't either.