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Recovery from CFS / ME

by Denise Kingsley-Acton(more info)

listed in cfs me long covid, originally published in issue 114 - August 2005

Every morning millions of commuters leave their homes to catch the train, run for the bus or brave the car pool to work. – I used to be one of them. A typical 'type A', a typical day would include running my own award-winning business in 'stress management' and alternative health for corporate clients. Evenings were a hastily munched microwave meal and rushing to Reiki clients, a Green Party political meeting or to an evening class at the local university as part of my MBA course. It was all a normal part of the daily grind. At least it was until my life ground to a halt.

The Diagnosis

What happened next appears not uncommon in the experience of a person diagnosed with something as controversial and misunderstood as CFS/ME. The medical profession cannot even agree on its clinical identity, let alone the course of action a sufferer should take and therefore provide little or no comfort to someone, like myself, bemused and upset by a bewildering array of debilitating symptoms.

Once referred to as 'hysterical nonsense' and 'yuppie flu', ME or myalgic encephalomyelitis, became the catchall by which my condition was assessed, or rather, dismissed. 'Myalgic' refers to muscle symptoms, such as (fatigue, pain, twitching) and 'encephalomyelitis', to the brain symptoms, (speech, memory, concentration, balance).

In 1999 I had visited the Doctor after two particularly nasty bouts of flu. (Most clinical studies state that the onset of ME can occur following a nasty viral infection). My GP's verdict: "You have ME. I don't believe in it, but I have seen lots of intelligent, creative people, mainly women, usually in their late 20s to early 30s, who just burn out." I was sent on a very expensive and futile visit to a private clinic to see a specialist. His verdict: "You have ME; take a holiday." To this day my medical records read 'anxiety disorder' or depression and I have been prescribed a host of anti-depressants. The prescriptions remain a pile of coffee-stained scrawled pages in my desk draw.

For two years afterwards I was frequently consigned to bed whilst trying to maintain a semblance of my normal routine. It was only after the gruelling experience of standing for the Greens in the 2001 General Election that I realized I could no longer withstand the pace of my old life. To compound the problem, I went through the experience of four of the top five stressors within the space of twelve months. My husband was unexpectedly made redundant just as we were about to get married and move into our first home. We suffered a bereavement in the family. If we had got divorced in the same year, I would have had the full set! Research undertaken by Professor Behan at the University of Glasgow in the 1980s conclude that stressful events can be a trigger for the onset of ME.1 I could not help but think of the irony of running a stress management business and suffering from a stress-related condition. Clients began to pull out in the aftermath of 9/11 and I no longer had the energy to go out and win new ones.

Learning to Live with the Condition

It was not only the physical discomfort that left me debilitated but also the onset of a 'brain fog' that befuddled my thinking. It was with great reluctance that I left my MBA course when it became impossible to concentrate; the thought of undertaking the dissertation was too overwhelming.

The effects of having an illness that no one understood took its toll emotionally. My confidence was low, and with it a sense of loss of my former existence. Occasionally, during long periods of inactivity and boredom I felt the urge to be creative and dynamic and attempted to launch other new ventures: a customized jeans business, Reiki, a natural therapy centre. In turn, they all amounted to nothing as my energy dissipated along with the ideas. I could not envisage myself working full-time, but reluctantly took a part-time job working for my father. I also closed the business.

I would have periods of time where I felt better and imagined that I was well and could return to my former self. However, afterwards I would have to pay the price for pushing myself too far and rest for several days in a row. Other times I would experience a relapse, spending up to three months in bed recovering; my energy levels and immune system seemingly non-existent. On one such occasion I imagined I could go Christmas shopping, as it was a week before and I had not bought a single gift. As I walked through the shopping centre I became so exhausted my body literally would not move any further. Panicking, I staggered to the nearest shop. I was taken home in an ambulance. I then began to suffer from increasing feelings of anxiety and panic, not uncommon after long periods of stress.

Learning to cope came with understanding my limitations. I now had to think carefully about the smallest things that I previously took for granted. Gradually, tasks like the part-time job and household chores became more manageable in between periods of rest. It also forced me to re-evaluate my friendships. Yet, I still felt compelled to help others and continued to feel their needs were somehow more important than my own. I began to feel more and more isolated and invisible. Nick, my husband, was, and continues to be, my rock throughout this difficult time.

Recovery

I tried every therapy from Acupuncture to Healing, Ayurveda to Yoga, and noticed some improvement. I also practised relaxation and visualization techniques whilst constantly changing my diet. I began to worry that I would never recover, but slowly began to adapt. I also became much more aware of the correlation between my thoughts and my health. Reducing stress became paramount to my recovery.

Nightly instalments of 'Neighbours' became my sustenance along with chocolate, (purely for medicinal purposes) to be taken three times a day. I enjoyed painting and baking; life became a lot more simple. I discovered a flair for making nourishing soups. And for those who laugh at my addiction to Neighbours (I don't answer the phone when it's on), there is a lot of wisdom to be gained from a twee Aussie soap. You may empathize when someone rings during 'Desperate Housewives,' and you have a flake dipped in tea poised at your mouth.

Realization and a New Start

Some people just need a new start in life, such as a new job, a new haircut, or a new partner. I got to thinking I needed a new life entirely. But how could I start again? What did I really want to do with my life? At thirty-four, most of my friends had children or good jobs, or both. I had neither. I had been living in the wilderness for four years, so it was time for a radical rethink.

One day I was browsing the internet in a fruitless search for a job designing edible chocolate couture – a solution to all my problems in one – and came across 'career doctors', 'life coaches' and 'motivational therapists'. I trawled my way through them, but was left despondent as I could ill afford to try yet another therapy experience emotionally, let alone financially. I had already spent a small fortune on hypnotherapy and NLP, and they failed to even get me off the sofa.

Resigned to defeat, I prepared to give up, but came across Carole Ann Rice, a 'life coach.' I read her site with the same scepticism usually reserved for estate agents, but the part of me that still contained a modicum of hope began to read the blurb with interest. The site attracted me with its enthusiasm, fun and cartoon style. Life coaching, it clearly stated, was 'not a therapy.'

One free phone call later Carole Anne stated I have lots of creative energy that wasn't going anywhere. Top marks! She asked me if I blamed outside forces for my situation. I reeled through a short list of my favourite suspects: ME, 9/11, the government that told me a degree was the key to unlocking my future, the failure of my business, God. However, I judged from her tone that a 'yes' would not be the correct response. I realized in a few short moments, that the only person responsible for my situation was me, and I was the only person who could get myself out of it. "What if your life could be easier?" Carole Ann asked, and "how would it feel if you were doing the things you love?" Lead me to the part that tells me how!

Life Coaching

The basic tenet of life coaching is that you are accountable and responsible for all your actions. 'The power is within you,' as it clearly states on Carole Ann's website. This leapt out at me. It was time to take responsibility, life coaching promised immediate ACTION and the lure of dramatic results. It was Carole Ann who encouraged me to write this article, and to take the first step. From the moment I filled in the client information form, I felt like I was taking part in my own healing.

The sessions were non-intrusive, certainly not judgmental and took place over the phone, which was ideal for me. We talked about what motivates me and energizes me. Running my own company had been rewarding, but I found the discipline of the business side draining, stemming my creative energies. What did I really want to do? A little voice inside answered, 'writing and voice over work.' The most important consideration was to have a job that was fulfilling, and creative, and that could fit into my modified lifestyle.

The reasons soon came to the fore for not pursuing my dream of becoming a writer earlier. At school I had certain choices. I was creative but lacked direction, and at the impressionable age of fifteen we had our futures mapped out in the shape of our work experience week. However, there was only one place at the local newspaper for aspiring journalists, out of a year consisting of over two hundred students. It went to my best friend. In the stampede to get the place I had retreated, reinforcing a belief system that essentially I can be pushed aside. It was my friend's pushiness, her directness and ambition that had won it, and I was not one to push. Not only did I believe that this is the way you have to survive in the world of work to succeed, but I was not 'good enough' for the job. Hence, it became clear that I had formed a pattern of behaviour around this event, that became apparent in my unwillingness to push or compete for new clients within my own business.

My coaching encouraged me to think differently, along the lines of 'there is more than enough to go around.' It sounds simplistic, but the act of unravelling my own thought processes began to energize me and give me hope. It then emerged and became clear that the path I had chosen had not allowed me to be true to myself. I had become side-tracked and wrapped up in things that were not right for me. I learned what I wanted to leave behind and what I really wanted now. Moreover, I realized my life before had been all about making other people happy, but what had happened to my goals and dreams?

More importantly, I needed to set boundaries, such as learning to say no, and not being that person who still ran around after everyone else. Gradually I began to think about my own needs first. Appropriately ME was all about getting to know me. I now preferred to view my illness as my body trying to give me a very important message.

Action

My coaching sessions were essential to focusing my energies, to know what was draining me and what was productive. I was set goals straight away, namely to become a freelance writer. I have a tendency to stress myself out with deadlines, but was gently pushed and encouraged. On one particular occasion I was struggling to reach a deadline, and I was told to "think myself on a creative plane, let go," and my favourite line of all, then "sprinkle pixie dust on your writing". I felt encouraged and supported.

The Outcome

Carole Ann taught me to not be attached to the outcome. This alone helped with my stress levels and perfectionist mentality. I finally was able to give into the process and enjoy the challenge. She was a reassuring figure at times when I thought it was too hard, difficult or a struggle. Once I had let go, via e-mail or chatting on the phone, it became easier. It was about building my confidence in a new area and finally the fog began to clear and I could start to think more coherently.

Gradually I began to believe I was making small decisive steps on the road to recovery. I also know more about what I will no longer tolerate. When your energy is limited there is no point wasting it on things that no longer serve you. The coaching relationship deepened as I felt supported and larger goals could be set, and aimed for. I am still in the process of achieving them, like publishing a children's book I have written and illustrated, approaching magazines and starting my career in voiceovers. Reporting on my progress made me feel more confident, and happy with my achievements. It is an ongoing process overcoming blocks on the way. As an alchemist turns lead into gold, it has been a matter of changing my views, shifting my thinking, harnessing my energies, and becoming focused. The energy was already there; it just needed the magic formula to turn it into my own personal goldmine.

I may not be going to work with the rest of them, but the daily commute has become a case of turning my lap top on – hence, no daily grind. I feel my life is no longer ground to a halt, it has changed to finally moving on. 'Type A' has switched a gear to a 'Type B', the one who is more relaxed and happy in the traffic. My chocolate and Australian soap addiction are now under control, along with my fears of rejection, failure and success. I have more motivation to create the life I want, and now possess the tools to get there. I am starting to feel visible again, whilst finally having the support I need to make it through. I am also getting to know my wants and needs and heading towards fulfilment and belief in myself. Crucially, at last, I feel I have the energy and mindset to do it.

Further Reading

1. Shepherd C. Living with ME. Ebury Press. London. ISBN 0-09-181679-3. 1999.

Further Information

If you would like a session with Carole Ann Rice, she can be contacted at caroleann@realcoachingco.com.

For more information on ME

Contact the ME Association at: www.meassociation.org.uk www.supportme.uk is a useful resource.

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About Denise Kingsley-Acton

Denise Kingsley-Acton is a (new) Freelance writer, having written articles on stress within the corporate environment, and a ghost writer and researcher for the Green Party. She stood three times as councillor for the Watford Greens, and once as the General Election Parliamentary candidate in 2001, (formerly known as Denise Kingsley). Before being struck down with ME, she was studying for an MBA, but had to drop out. She still gained a Post-Graduate Degree in Management Science. She used to own her own business Ki Events, that won a Business Award in 1999, providing stress management solutions to companies. A Reiki Master and artist she also has a Degree in American Studies, History and Politics. She can be contacted via denise.kingsley@btopenworld.com

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