M.E. Support

M.E.: My Story

On the tenth of December 1992 I celebrated my thirteenth Birthday. During the Christmas period I came down with Influenza for the first time. Upon returning to school in the New Year it felt as though the virus was still lingering, and this was accompanied with a growing number of other symptoms, including stomach problems. My General Practitioner reluctantly sent me to assorted Consultants for tests concerning these unexplainable symptoms. The results would always come back clear, and the Consultants would go on to talk about my reputation for disliking school, and then recommend that I see a Psychiatrist! I was in school between attending Hospital appointments but eventually I could no longer physically or mentally cope with my school timetable. At this point I had been ill for nine months and the school, my GP and my parents all agreed that I should see a Child Psychiatrist. After just twenty minutes with him he diagnosed me with an illness I had previously never heard of - M.E. Within the next few months my health went from bad to worse, and I was bed bound by Christmas 1993, having been ill for one very long year.


I remained bedridden throughout 1994, unable to do anything for myself. My whole body was on shut down; I could not even breathe without difficulty. I was a baby again, what with being spoon-fed and unable to control my bladder or bowel. I cannot begin to describe the level of pain that I was in. The worst of the muscle, nerve and joint pain was in my spine, arms and legs. My Mum cared for me, as well as looking after my toddler brother, running a home and the family business. The question, How? comes to mind. My Dad and elder sister remained skeptics, even with what they were witnessing. I do not have a large nor close family but relatives did there best to understand. Our family GP continued to be of little help, although the Psychiatrist remained of support to both Mum and I. My schooling had obviously ceased.


During the year of 1995 the M .E. gradually improved, although I was housebound throughout. I tried but failed to cope with some home tutoring which the school had reluctantly organised. Consequently, I was never able to sit my GCSE exams.


I remained housebound in 1996 although I built up my physical and mental skills. Mum had to literally teach me to walk again, which was due to the severity of leg pain I had suffered while bed bound. I had to build up muscle strength for even the simplest of tasks, like brushing my teeth. From having spent years on blended food and nutritional drinks, I had to get my stomach used to solids once again. I got in touch with pen pals, having lost all of my ‘friends’ from school. I also started some hobbies.


The year 1997 is a bit of a blur for me. I had been taking a cocktail of drugs as prescribed by my GP over the years, ranging from mild painkillers to strong antidepressants, and I consequently became addicted to them. I began to do everything in my power to rebel against the M.E., such as going out when I was obviously unfit to do so and drinking alcohol to excess, knowing that it would make the M.E. bad. I ‘messed around’ with my diet, starving myself for days on end and then eating myself silly. My Depression took on a new league, having previously suffered mildly from living with the M.E. However I was now Self-Harming, which at first this was a cry for help but I eventually planned a suicide.
I took sixty strong antidepressants. My stomach was pumped and I stayed in Hospital for a few days before talking my way out. I remember being referred to as “The Miracle” as I just should not have survived from what I took.
During the course of twelve months I had become an Addict, developed Anorexia Nervosa, Binge Eating Disorder and Manic Depression. I was given Counseling but she was only interested in the M.E. and ‘proving’ that it was a Psychological Disorder! I was even offered an array of medication, which to this day I am absolutely dumbfounded by. Just like the M.E. I had to stabilise the illnesses on my own, and have since devised ways of dealing with these very difficult conditions.


From early 1998 through to late 1999, the M.E. got in to a pattern of ‘good’ and ‘bad’ periods of health, and I eventually knew when a relapse was approaching. I was gradually able to get out of the house, both accompanied and alone. I could also socialise a little by meeting some of my pen pals and getting to know local M.E. sufferers. I had the energy to swim two or three times a week, and was delighted to find that it eased my muscle and joint pain considerably. I decided to do a short course at a local supportive college, and opted for Basic First Aid, something I had always wanted to learn. When I was able to, I did an hour or two of child minding for a supportive family nearby. I also worked short hours at the village Playgroup covering for their Assistant’s Maternity Leave. I then tried to get a part time job at a wine bar although it proved too difficult, not just with the M.E. but due to the owner’s attitude towards the illness. Occasionally, a short spell of bed rest was needed to get through a period of bad health.


In the early part of 2000 I suddenly became bed bound. From late 2000 through to the present day my health is extremely erratic. I have few spells of good health and regularly become housebound or bedridden. I often need to rely on crutches to take pressure off my hips and legs or a wheelchair due to the severity of the M.E. Thankfully I do have better times, usually during the warmer months.



These days I am under the care of a Dietician, and she has identified Food Allergies and Intolerances which has helped me a great deal, namely with Irritable Bowel Syndrome and the Migraines. I sometimes see other Specialists for certain aspects of the M.E. but have yet to see an improvement in how the medical profession regard this illness. I am now on my fourth GP, and he tries to be understanding which is all I ask for, although maybe the fifth one will have good knowledge of M.E. as well (I can but hope!)

I am sure you can understand why I dislike taking medication of any type, although I do take some food supplements and alternative measures such as Evening Primrose Oil.

I try to take some form of light exercise when I am able to, usually a walk along the seafront where the ground is level, along with having plenty of benches to rest on!

After a lot of trouble over the years I am on the benefits Income Support, Severe Disablement Allowance and Disability Living Allowance (just lower rate Care and Mobility though.)

I am single and live with my Mum in East Sussex. She is still my main source of help and support, although Dad’s attitude has changed somewhat. My brother was of course very young when I became ill but now has mixed understandings and feelings towards M.E. Unfortunately my sister has remained skeptical.



Throughout the past fifteen years I have educating myself on this illness and kept a personal record of my health. I have experienced the medically plausible symptoms of muscle pain. Non-characteristic symptoms of being unable to keep food down. ‘Impossible’ symptoms, such as gaining weight when I cannot eat, and becoming under weight when I am eating well!

I have experienced people stepping away from me and covering their face and mouth when they find out I am a ‘contagious’ M.E. sufferer. I have lost count of the amount of times I have heard “Oh yes, M.E, that’s when you’re tired all the time”. I have been told to get on with life and that I am just over dramatic. Then the complete opposite of being pitied and felt sorry for. I have experienced a short relationship, eventually being rejected due to the M.E.



I founded M.E. Support in April 2001 in aid to help those touched by M.E. and other chronic fatiguing illnesses. Through my knowledge I have been able to guide fellow sufferers through this terrible illness.

M.E. Support has grown into an ‘online community’ of which I am extremely proud. M.E. sufferers come here to meet those in similar situations as themselves, to share their stories, and to give each other help and support.



I have hopes and aims for my life, and I attend to accomplish each and every one of them, it may just take a little longer than I had initially expected! At times, I understandably feel that the passing years are being lost. I am not a religious person but recently sat in church collecting these thoughts. We all have challenges in life, in one way or another. Maybe we have these challenges for some unknown, individual reason. Could the initial challenge its self, be to figure out that very reason? I believe our own course of life will prove more understandable if we ever do work this out! I do know that life is precious, no matter how it is being lived. I will continue to get wiser from my mistakes and experiences. I will just keep on living my life.

M.E.: My Story (contd)