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Action for ME
InterActions Monthly Update
August 2000
Beyond the Glass Cage
Clare Fleming
“I live in a glass cage…the invisible walls around me are impenetrable. Beyond them lies a barrage of symptoms… Illness cost me my job, my social life, my role in the family, my access to activity and my ability to rely on my body to function predictably.” 1
I wrote those words seven years ago. I was virtually bedridden for eighteen months, used a wheelchair to go out and appeared in my dreams as disabled. Now I have totally recovered. For the past four years I have made no concessions at all to ME. Like anyone, I have boundaries to my resources and wellbeing. The difference now is that I bounce back rapidly every time; my body can restore its balance. Here is my story - a streamlined account of a stumbling journey.
Helping my Body to Help Itself
I see my recovery from ME as similar to healing a cut finger. My body has an inborn ability to repair itself. I can’t force healing to happen, but I can affect it. If I fail to clean the cut or I pick at the scab, if I have poor circulation, work in a cold environment or have a deficient diet - all these hinder the healing process. I can encourage healing by dressing and protecting the wound. Before my illness I was a GP and some of my symptoms - sore throat, swollen glands and flu-like malaise - strongly suggested an on-going infection. With no medical cure available, all I could do was help my body to help itself.
There were four cornerstones to my recovery:
Wholeness. I learned to use body, mind and spirit together to unlock one another, instead of keeping each in separate boxes.
Change. ME unhinged my familiar circumstances and relationships, opening me to explore deeper areas of mindsets and habits.
Balance. I discovered the importance of allowing opposites each to have their own place in my life.
Love. I experienced the reality of the bible verse, ‘I healed them … with cords of human kindness, with ties of love.’ (Hosea ch11v4)
These are the things I tried, starting with the most helpful:
a combined body / mind / spirit approach
accepting help from family, friends and professionals
pacing - developing a sustainable daily pattern*
finding hope, love and meaning in my present circumstances, helped by faith and prayer
developing balance in as many areas of my life as possible
nutritional supplements including Efamol*
anti-depressants to treat a brief spell of depression*
charting progress to keep me objective
Homeopathy*
*see AfME factsheets, page xxx
First Step - Facing the Truth
Recovery began with the hardest part of all - facing the truth of the existence and severity of my illness and disability. This set me free to begin the journey of recovery from a place that was real, and therefore solid to build on. It gave me the opportunity to fight with the illness rather than fighting against it. No more imagining I would be better tomorrow. No more trying to live beyond my resources. I was face to face with the pain of all I had lost. Grief is a minefield of emotion: anger, frustration, sadness, longing, loneliness, fear, guilt, worthlessness, self-pity, despair. I needed to acknowledge and defuse these feelings in order to avoid becoming disabled by them.
Finding Balance
Learning how to budget my meagre energy was essential. However, as I struggled to balance activity and rest I encountered other imbalances. Keeping busy was as instinctive to me as breathing but I was uncomfortable with stillness; change was invigorating though I hated routine; I enjoyed helping people, while independence and pride made receiving difficult. The key was to develop those qualities which I had previously lacked, to establish balance throughout my life.
I worked out a pattern of activity and rest which I could sustain even on a bad day, so my body knew what to expect and prepare for and I didn’t squander energy fretting about meeting the needs of the day. Accepting help, compromising, delegating and saying no were essential, but difficult. I spent my energy firstly on what mattered most to me - nurturing the people who nurtured me, especially my husband, Ian, and our young sons. Ian needed encouragement in his role as carer, and I needed his support to keep me going. We enlisted help from different people for as many tasks as possible, trying not to be unrealistic in our expectations but to ask only for the thing which that individual could best give. Slowly, in fits and starts, I drew more into my periods of activity. I could cope with the routine and discipline as long as I allowed space for fun, creativity and mistakes - of which I made plenty.
Learning to Listen
I learned relaxation skills to improve the quality of my rest times. As I relaxed physically I began to listen to what was happening inside me. I encountered the emotions I listed above and realised how much of my precious energy was being squandered on such baggage. Counselling helped me start unpacking.
In tandem with this I began searching the Christian faith, at the heart of which is love. Exploring my relationship with God shed light on my relationships both with others and with myself. I had been taught, ‘Love your neighbour as yourself’, but the implied ‘love yourself as your neighbour’ had never occurred to me. The experience of being valued for who I am, not for what I do, freed me to acknowledge my own needs and set out to address them. This was primarily a spiritual journey, but it unlocked the physical dimension as well.
Looking After my Body
Instead of ignoring my body I began to ‘listen’ carefully to it and heed warning signals. I took advice about nutrition and vitamin supplements, avoided large or irregular meals and excluded foods which my body couldn’t easily handle. Anti-depressants countered a brief spell of depression (though they had no effect on my original symptoms), and I tried Efamol and homeopathy.
One day something amazing happened. For the first time in over three years I woke up without a sore throat, and my swollen glands soon disappeared. I was able to become physically tired again - previously flu-like malaise had stopped me reaching that stage. Somehow my body had gathered enough resources to throw off whatever infection I had been harbouring.
Returning to Health
The journey back to full health plus sufficient energy reserves took almost three more years. Six years in all. Step by step, I reclaimed roles, relationships and responsibilities. It was a bit like growing up all over again, moving from dependence and vulnerability towards independence and responsibility. There were fears to overcome as I moved from the familiar and secure towards the uncertain. Whenever I tried to gain ground too fast I relapsed, giving fear another boost.
In the end, with help and support, I got there. Life is not the same as it was beforehand, because I choose to spend my time and energy differently. I prefer my new life and wouldn’t swap it. Nor would I ever wish to re-enter the living nightmare that is ME. Yet both Ian and I feel that our family has in the long run gained more than we lost. We found unexpected treasures in those dark days. One of the most powerful things ME taught me is that I can choose to change. I needn’t fear my weaknesses or my feelings: they are windows onto a garden of opportunity, beckoning me towards a wholeness that goes beyond my physical recovery.
“Bon voyage” for your own journey.
1. Fleming, C. The Glass Cage, British Medical Journal 19 March 1994 Vol 308, p797.
Clare Fleming is a wife, mother and former GP. She has edited two reports from the National Task Force on CFS/ME, and contributes to the Westcare residential rehabilitation courses for people with CFS/ME. For more details, call Westcare on 0117 923 9341.
Action for M.E., Po Box 1302, Wells, Somerset, BA5 1YE, UK
tel. (0)1749 670799
fax. (0)1749 672561
website: www.afme.org.uk
e-mail info@afme.org.uk
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