M.E. Awareness Week 2018 6-12 May
By ianbeechpoetry, May 9 2018 12:55AM
To mark M.E. Awareness Week, two poems from my forthcoming collection The Abacus of Broken Dreams plus a piece written by my partner Maria to highlight the reality of living with M.E.
You and M.E.
Ancient timbers surround you,
Engrained with stains,
Pitted with marks and memories
Of each succeeding ‘Now’.
Washed with medieval mysteries,
Delights and pains untold
Once breathed and played
Within this humble space.
A room with a view,
For those with time
To stand and gaze.
But you, my love,
Within these bedroom walls,
Tree tops barely glimpsed
Outside your pillowed cell,
Each dragging, dreary day
This endless, wasted summer through.
Bereft of strength to sit and stare,
No stairs for you,
Bedroom and bathroom the compass
Of your shrunken world.
Flowers comfort you:
Subtle scents and striking shades
Pierce your isolation,
Stir your senses as best they can.
In truth, pale remembrance
Of nature’s glories,
Enchanting a world
Beyond your reach,
Heedless of your plight.
But your cat, my love,
Like me confused and past his prime,
Declares his lifelong love,
Devoting countless hours,
Days and weeks
To tender companionship,
A constant consolation.
Never far from your side,
Nuzzling close, stretching,
Infusing his need of you,
Insisting you still have life.
Stroking his fur
Your pale, delicate fingers
Cling on and feel his truth.
Your hope must never die.
One fine day, my love,
Recovery will surely start,
And it will surely come,
One fine day.
So Glad We Met
Our feelings were instantly mutual
But when we first met,
I was close to the edge.
You saved me,
Gave me hope,
A place to call my home,
Dispelled my deep despair,
Offered me the chance to share
In all that life can give.
You rescued me,
Re-framed the way I live.
Before this illness struck,
Confining you to bed
These three long years.
Now it’s you who depends on me, instead.
I stand by you, as you stood by me,
With tender loving care,
I’ll keep your hopes on track.
Reward enough, the smiles we share,
As I watch you slowly, slowly coming back.
It’s M.E. Awareness Week!
To anyone interested in knowing what M.E. is really like, this is my experience:
My M.E. began about thirty years ago. Over a few months, I caught a series of viruses and infections, one on top of another, that just wouldn’t go away. The more I tried to get over them and keep going, the more ill I became. Like a flat battery, the more I tried to push myself and force my body to work, the more depleted I became. I felt very ill, sick, giddy, headachy, weak and exhausted, limbs like lead (walking felt like wading through treacle) but I struggled and struggled to keep going. Even when I could no longer force my legs to work, my doctor continued to tell me all his tests proved there was nothing wrong with me! In the end, just like a flat battery, I could no longer function at all. Unable to get up, virtually paralysed by extreme exhaustion, I became totally bedridden, needing twenty-four hour care.
There are no words to describe accurately the depth of illness but, for me, M.E. feels like I am not really alive, though not quite dead either, somehow trapped between the two, just sort of existing. Much of the time, I’m in a barely-conscious state, extremely ill and weak, unable to make any strength or energy. I lie helpless, unable to move, with excruciating pain in both body and brain. The most basic functions are way beyond me. I can’t wash myself, clean my teeth, brush my hair, chew my food and often can’t speak or think. I have impaired vision and hearing, an extreme sensitivity to light and noise and an intolerance of some foods. Trying to do anything at all (e.g. lift my hand) causes my heart to race uncontrollably, sweat pours from my body, my muscles go into spasm and my body into convulsions. I feel sick and giddy all the time and faint or fall over if I try to sit up or get up. There are many other very unpleasant symptoms, too numerous to mention or describe, and every single bodily function seems to be affected: temperature control, breathing, digestion, sleep and so on. I’m too ill to watch TV or read, listen to the radio or music, can’t concentrate, hold a conversation or cope with visitors.
There is no cure or effective treatment and, in desperation, I have tried every kind of alternative treatment, spending small fortunes, but nothing works for me. This horrendous unbearable illness can last for years with little or no improvement. Recovery, if it comes, is at an imperceptibly slow rate. It once had the name ‘The Living Death’ and that’s exactly what it is.
Sadly, sufferers are misunderstood, disbelieved and even ridiculed. This needs to end.
At the start of my illness, my then boyfriend was suddenly, and very unexpectedly, plunged into becoming my full-time carer, twenty-four hours a day, seven days a week. He had to feed me, wash me, turn me over in bed, constantly change bedding soaked in sweat, carry me to and from the toilet, etc., etc. We had never heard of M.E. and my symptoms were completely dismissed by doctors, who were unbelievably hostile, as were some of my friends and most of my family – one gave me a lengthy, heartless lecture (without wanting to know any of my symptoms) telling me that there was nothing wrong with me except, apparently, a bit of will-power!! Other family members influenced by him would shout at me that I must do things that were absolutely impossible. They didn’t want to hear me and showed little compassion or any attempt to understand. That attitude, unfortunately, was ‘normal’.
I would not have survived without the constant care from my boyfriend but looking after me meant he neglected his business and own home, both of which he eventually lost. We had no help or support, physically, financially or emotionally. It took years of battling with authorities before anyone accepted that I might actually be ill. All this took its toll on him and our relationship and after several years we split up.
I continued to be bedridden for thirteen years, then in a wheelchair for seven more. I never fully recovered but for the next seven years or so I kept my M.E. at a manageable level. As long as I did nothing at all in the morning and did not try to walk more than a few yards at a time, I could keep my relapses to just a few days or a few weeks. During these years, a few of my family and some of my really good friends continued to give me love and the support I so badly needed. Also, nearly six years ago, I met someone special and we started to share a life together. At last it seemed I was getting my life back.
Then, three and a half years ago, after a very stressful house move and another very bad infection (sinus, ear and eye) I was suddenly struck down again and back to square one, bedridden, extremely ill, helpless and needing twenty-four hour care. I never dreamt I’d have to go through this all over again! Feeling worse than I had the first time, both my partner and I suspected I might not survive. It’s not just those with the illness whose lives are ruined. Although I have had a lovely team of part-time carers for a few hours a week, the main burden of care falls on my partner, whose life is also seriously curtailed by my illness, cutting back on all his work commitments, socialising and leisure activities.
Anyone can get this illness at any age. Maybe even you? Children get it too (my heart aches especially for them) and twenty-five per cent of the millions worldwide who have this are either bedridden or housebound. The World Health Organisation classifies M.E. as a neurological disease. There have been outbreaks in various countries over the years but generally it manifests in individuals, or in members of the same family. It may well be genetic and research now suggests it’s some kind of immune system dysfunction/deficiency, an exaggerated immune response triggered by any common virus/infection in people who are susceptible. The immune system activates to fight the infection, ‘revs up’ but for some reason gets stuck, keeps ‘revving’ and doesn’t turn off again as normally happens (my analogy).
Unfortunately, in the thirty years I have had M.E., not much progress has been made in either the medical world or in the perception of the general public. People still don’t know or understand what M.E. is or the reality for sufferers and their carers. (Since I have become dreadfully ill for the second time, someone very precious to me has decided to disown me because of my M.E.).
This really is a very serious illness and even those with a mild form cannot live a ‘normal’ life. To find out more about M.E.:
Contact Action for M.E. www.actionforme.org.uk
The M.E. Association www.meassociation.org.uk
Watch Unrest (award-winning documentary film by Jennifer Brea)
If you would like to help stop all the misunderstanding, prejudice and ignorance about M.E., please share this information with everyone you possibly can.
P.S. It has taken me three years to write this piece. Thanks to my partner Ian for typing it up for me.
How very very brave of you Maria. Words that were difficult to say but need to be heard. Love as always.Sue xxx