M.E and me.

March 24, 2011

I rushed back home today having received a phone call from my mum to say she had some unexplained injuries that turned out to be from a seizure she had in her sleep. This upset me a great deal and I can’t even begin to describe how close I am to her.

This seizure has come out of the blue and until she has been to see a neurologist we wont know much more. My mum has been unwell my entire adult life, since I was eleven actually. She has M.E which some people will have heard of but might know little about. I struggle to explain what is wrong with her and how she feels as her experience of M.E is so very different to other sufferers.

A lot of people do not acknowledge M.E as a genuine illness. Having seen it destroy my family and nearly kill my mum, I have every right to beg to differ. Some might know it as Chronic Fatigue Syndrome which for us and our experience, could almost be considered an incorrect label.

My mum IS very tired and can do little without the need for a rest but she actually cannot physically sleep without medication. Before diagnosis she went almost seven full days and nights without sleep. Not a minutes sleep. Anyone that had forced themselves to stay awake for more than 24 hours will know the effect it can have on your body and mostly your mind. So it was touch and go at that time, not sleeping can genuinely kill a person.

The side effects of living with M.E are difficult for all those involved, my mum had an extremely successful career in medicine and pioneered community nursing in the Midlands. With this taken away from her she quickly descended into depression and that eventually led to my parents divorce. Unfortunately it was all a little too much for my dad and he made a quick exit, admittedly after caring for my mum for a few years.

I have luckily seen my mum begin to recover, but she will never be in full health. She will likely never work again and will depend on state handouts and her NHS pension to survive. I came from what was essentially two working class people who built lives that enabled my brother, sister and I to all attend boarding school for seven years, so having to rely on benefits is extremely frustrating for someone of my mum’s nature.

There are a couple of reasons I felt like writing about this (albeit very briefly) today.

Firstly, because I feel people with M.E still do not get the recognition they deserve. Just ask Yvette Cooper, wife of Ed Balls who apparently had M.E. She pushed through guidelines that suggested people with M.E just needed to think positively and partake in a bit of gentle exercise. Pretty strange behaviour from someone who claims they suffered the brunt of this illness. 

Secondly, it affects people in a variety of ways. My mum feels no hunger or change in temperature, bizarre things, the sleep thing was cured by trying a huge concoction of drugs, drugs that she has now been on for over a decade, some of which should only ever have been prescribed for a length of six weeks. Doctors through no fault of their own do not know enough about M.E to be able to treat it. Some of these people will try ANYTHING to make themselves better, I can even remember discussions of heading to America to meet someone who drilled holes in people’s heads….

My biggest gripe is with the joker, I’m not even going to bother to look up his name, who charges desperate people for his ‘cure’ he calls The Lightening Process. Some M.E sufferers will do anything to be better or at least to have some answers and yet it seems, this is something they will never get. My mum is currently forcing herself to give up the medication that has enabled her to get through the last ten or so years for fear of permanent damage to her organs, it means adding extremely painful withdrawal to her already lengthy list of symptoms.

Thirdly, if you happen to read this, then take with you a couple of things:

Not all disabilities are visible. Do not assume a healthy looking person is healthy on the inside. The amount of looks she gets when parking in a disabled parking space is something she has learned to live with. She could have a false leg or half a heart but no one seems to care if there isn’t a limp to justify her blue badge.

Not everyone on benefits WANTS to be on benefits. Without any real knowledge of what causes M.E, benefits are always at risk. I have come across endless amounts of people who think of M.E as nothing more than yuppie flu and there is nothing more infuriating than that.

There is so much to our story that would take an awful lot of time to write about, I barely know where to start so I apologise if this post is a bit scatty. I would of course be interested to hear from anyone that has experience of/with M.E.