Parallel Worlds by Lesley Timms

My ruthless gaolers, M.E. and his evil mate social anxiety, show me no mercy.

My home is at once my prison and my sanctuary.

I inhabit a parallel world to yours, be you a stranger or loved one.

Each day is much like any other, to be got through, somehow.

My physical, mental and emotional states fluctuate randomly, minute by minute.

To plan anything is futile; to look forward to anything, pointless. 

To wake up is to struggle again, to face renewed disillusionment.

Night-time sleep is fragmented; day-time spent in a dozy twilight state.

Food, a welcome visitor, often repays me with gut rot or worse.

Intolerance to many ‘remedies’ leads to a reluctance to risk ‘the latest cure’.

Juggling chores and pastimes requires strict pacing, for,

To break M.E.’s unbending rules is to face certain payback.

All that I once took for granted now carries a heavy price tag.

Or has been removed from my life completely: driving; socialising; working.

Effort spent, even on enjoyable activities, equals an escalation of symptoms. 

A little reading, TV, computer, puzzles, phone calls, then expect at least:

Blurriness, nausea, dizziness, shakiness, twitching, headaches, muscle spasms.

Not to mention low mood, anxiety and panic.  Day after day.  Year after year.

And, cruelly, most of this is invisible to you, be you supportive or sceptical.

You see me, maybe live with me, but we inhabit parallel worlds.  

Published by Interaction magazine

I am going to run the London Marathon on 26th April 2015 to raise money for Action for ME.  I have chosen to run for this charity because my Mum has been suffering with ME for 16 years so it is something I feel passionate about doing.  I ran the marathon last year on her 60th birthday and thanks to the generosity of family and friends I raised over £4000. The time I finished in gave me a 'Good for age' time which automatically entitles me to run again this year so I am taking the opportunity to open a fundraising page once more.  I expect at times when I am pounding the streets I will wonder why I am putting myself through this again but for my Mum and others with ME, every day is a marathon.  In addition to raising money for a charity who support people with ME and who promotes research ultimately working towards a cure, I would also like to use this opportunity to raise some awareness of the illness. 

I have taken the following from my last year’s fund raising page.  This isn’t out of laziness but simply because nothing has changed.  A year on and my Mum is still suffering from M.E and day to day life continues to be a challenge.  The above poem is one my Mum singled out because it really sums up how she feels. 

For years there has been a certain ignorance and stigma attached to ME, starting of course in the '80s when it was referred to as 'yuppie flu'.  Still to this day if I mention to anyone that my Mum has ME, I am often asked, is that the one that used to be called yuppie flu, or is that the one when you get really tired or even, is that the one that is all in their heads.  Well, yes it is that 'one'.  BUT things have moved on a lot since those days and whilst it is fair to say that ME has attracted more than its fair share of controversy over the years and the situation still isn't perfect, many influential bodies (The World Health Organisation, the Department of Social Security, the Department of Health, the Royal College of Physicians, Psychiatrists and General Practioners amongst them) are now in agreement that it is real.

So what is ME?  ME is defined by the World Health Organisation as a neurological disorder.  There are a number of different names for the illness which is currently affecting an estimated 250,000 people in Britain. 

Myalgic Encephalopathy/Myalgic Encephalomyelitis - or "ME"

Chronic Fatigue Syndrome or “CFS”

Post-Viral Fatigue Syndrome or “PVFS"

Chronic Fatigue Immune Dysfunction Syndrome or “CFIDS

All types of people of all ages are affected. Severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration are commonplace. In many cases, onset is linked to a viral infection. Other triggers may include an operation or an accident, although some people (and as the case is for my Mum) experience a slow, insidious onset.

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, social life and family life become restricted and in some cases severely strained. People may be housebound or confined to bed for months or years.

There isn't a known cure for ME and although some treatments may have helped improve symptoms in some people, they prove to be ineffective in others.From a personal point of view, I have watched my Mum suffering now for a very long time.  My Mum My Mum once wrote an article titled 'Behind the mask is ME' and the heading describes how she feels.  She puts a mask on to face others, even family and the outside world.  When the illness was first diagnosed for my Mum, she was doing a job she loved but it was impossible to continue.  On a day-to-day basis life is a struggle and having spent considerable time and money on various treatments, she battles through each day and continues to put everyone other than herself first.  She is THE most selfless person I know - it seems somewhat ironic that her illness is called ME.   She once told me that the only way she could describe the way she feels is having a hangover, food poisoning and jet lag all at the same time.  Hard to imagine living like this for sixteen years.  She rarely tells anyone quite how bad she feels, she puts on her 'mask' and suffers in silence, paying the price for any activity later on. 

Scans have shown that for suffers of ME just processing ordinary information, whether it be visual such as watching television, simply reading or having a conversation produces ten times the normal level of brain activity.  All of these things are so draining; in fact being in a room with lots of people talking makes my Mum’s head feel like bursting.  Even driving a car makes my Mum feel ghastly so although she loves driving, she only does short journeys.  When she is in the car with my step-dad she will often lay flat with an eye mask on to block everything out.  He is the only one who sees the real person behind that mask, although often she even pretends for his benefit too. 

I am one of four, I have three brothers and between us we provided our parents with nine Grandchildre. They all adore Grandma Lollie and love spending time with her but I know she feels very sad that she isn't the Grandma she had once imagined she would have been.  My Mum can't cope with long periods of any activity so in an ideal world she budgets her time and on a good day this would include a period of time resting with an eye-mask and ear plugs to block out noise and light.  Having said this, she is unable to say “No” to anybody so most days don't seem to go quite as she plans.   My mum is quite rightly very well loved and cared about.  She gives a wonderful listening ear to anyone in need and will jump at the chance to help in any situation.  I must stress, she wouldn't change the care she is able to give to others.  You see - selfless!

For me, my Mum is amazing.  She is able to step into my shoes 100% with my children and supports me through everything (even childbirth!) in a way that only she can but I know she suffers afterwards.  This is my way of giving a little back.

I really appreciate any sponsorship and I am looking forward to being able to give Action for ME some help towards the wonderful work they do for people like my Mum with ME.

Thank you for taking the time to visit my JustGiving page.Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

Lots of love

Jo x