Advisory: This article was written by Louise Sargent, the Founder and Webmaster of M.E. Support. It was first published on M.E. Support in April 2001 and has been updated annually thereafter. It is a frank account of the challenges of living with Myalgic Encephalomyelitis. It contains sensitive subject matter that some readers may find upsetting. You may not reproduce this article without first obtaining written consent.
Review by M.E. Support Ambassador Rochelle Hanslow.
M.E. Support has been going for 19 years now and at the backbone of all the support and advice is Founder Louise Sargent. They say to write well you have to write what you know and after reading Louise’s gripping account of her M.E. journey so far, it is easy to see why she can give such compassionate and knowledgeable answers to the people who contact her via M.E. Support.
Louise’s battle with Myalgic Encephalomyelitis began in 1992 at the age of just 13, an age where most girls are trying to find where they belong in the social hierarchy of the school grounds, an age where you want your independence more and strive for freedom and starting a battle with chronic illness certainly isn’t on the agenda. Most of us with M.E. and other chronic illnesses will find an emotional and very real connection with Louise’s story as she talks about the upset of psychiatric treatment, trying to juggle a timetable with the illness that she just couldn’t cope with, the frustration of feeling constantly exhausted and in pain with doctors telling you test results are clear and how it makes you start to doubt your own sanity, I know I’ve been there, as will most.
From being bedridden with the embarrassment of feeling like a baby, being able to do nothing for herself to a very slightly “improved” state of housebound where she had to eventually have a wheelchair to go outside, Louise poignantly accounts just how much M.E. takes away from you in such a short time and how other people all react differently; some support you and can see the suffering you are going through, some will scoff and look at you like you are contagious, some don’t take the time to understand and some point blank refuse to believe you.
In telling her story that spans over 28 years, Louise truly gives such in-depth insight to her life, to the struggles facing all who have or know someone with M.E and gives both a very real but beautifully positive account to anyone on their journey no matter what stage you are at. I have to admit that in reading Louise’s story, I had tears in my eyes but not once was it with a feeling of pity; more than anything it was because of the connection I felt to her and her journey and the deep sense of strength and pride of how far she has come. I found M.E. Support when I was very early into diagnosis of my illness and I have always been so glad that I did find such a great hub of knowledge and support but in reading Louise’s story it makes you realise that knowledge and support is coming from a very emotional and wise place.
I want to thank Louise for sharing her story, not just for me but everyone who will read it and get so much more out of it than she probably will ever know, it is definitely a story that all M.E patients should read and share.
My story starts in the summer of 1992; I was thirteen years old and I had my BCG (tuberculosis) vaccine administered to me at school. Over the following months I had a general feeling of being unwell and, by Christmas, I contracted my first case of influenza.
I dragged myself off to school in the New Year, although I felt dreadfully fatigued and struggled to concentrate. It was as though the virus was still lingering, and this was accompanied by a growing number of other symptoms. My general practitioner reluctantly sent me to assorted consultants for tests concerning these unexplained symptoms. The results would always come back clear, and my GP talked about my dislike of school (as though it were unusual!) before recommending that I see a psychiatrist. I attended school between hospital appointments but, eventually, I could no longer cope, physically or mentally, with my timetable. At this point I’d been ill for nine months, and both the school and my GP agreed that I should see a child psychiatrist.
I was upset about having to see a psychiatrist, and even questioned my own health, although it was actually a turning point. After just twenty minutes with Dr Chang he diagnosed Myalgic Encephalomyelitis; I was devastated but ‘relieved’ to finally have a diagnosis. Mum and I did some research at the local library and everything we read was uncannily familiar. Over the next few months my health went from bad to worse and I was bedridden by Christmas 1993, having been ill for one very long year.
I remained bedridden throughout 1994, having become like a baby again, unable to do anything for myself. I lay in a darkened room, unable to tolerate the light, with my body mentally and physically on shutdown. I remember the confusion of being unable to recognise faces, the difficulty in forming sentences and the embarrassment of losing my bodily functions. I recall strange things from this time, such as when a fly landed on my nose and I was unable to move and swat it away. The pain in every inch of my body was indescribable, but ‘thankfully’ I was in a deep coma-like sleep most of the time. Somehow, my mum incorporated being a mother of three, carer, housewife and business manager; she has since written about her experiences in One Mother's Story. Mum ended up getting shingles, and I’ll never forget the look of pain on her face as she cared for me. My only happy memories from this time are of my little brother, Stuart, who devoted his time to me, and when he was ‘unavailable’ a protective army of teddy bears was placed carefully around me in bed. Dad and my elder sister seemed detached, which is sadly how many people cope with illness, and relatives tried their best to understand. My school friends had moved on, but Verónica, whose story you can read in Myalgic Encephalomyelitis from a Friend's Perspective, remained true to me. Our family GP continued to be of little help and, therefore, Dr Chang took on the role of guiding us through this condition.
‘The web of our life is of a mingled yarn, good and ill together’
My health gradually ‘improved’ from being completely bedridden to housebound. My school organised home tutoring but it was impossible to study and, consequently, I was unable to sit my exams. I slowly built up my physical and mental skills, and eventually started to venture out in a wheelchair. One downside to this was the reactions of people I hadn’t seen for some time: I remember a neighbour stepping away from me, quickly covering her nose and mouth, as though I had something highly contagious! Mum helped me build up my muscle strength for doing anything from brushing my teeth to walking. I also had to get my stomach used to solids again, having spent so long on blended food and nutritional drinks. I joined M.E. Organisations and got in touch with other sufferers, sharing experiences and forming new friendships. I even managed to go on holiday with Mum; I was confined to my wheelchair, and it took time to recover afterwards, but the change of scene helped us both.
The year 1997 is a bit of a blur for me, to be honest. I became dependant on a cocktail of prescribed medication, ranging from mild painkillers to strong antidepressants. I felt depressed and frustrated with my life; I rebelled against my illness and became very angry towards myself. The depression went into a new league; I’d previously suffered mildly due to living with M.E. My mood spiralled uncontrollably, with low points so deep that I could hardly function, suddenly switching to unnatural and short-lived highs. I developed eating disorders and started to self-harm which, at times, gave me control and a sense of relief. The fight in me soon disappeared and I was left physically and mentally drained – I had nothing else to give. I planned my suicide calmly and methodically before taking sixty strong antidepressants. My parents found me and I was rushed to hospital where my stomach was pumped. I remember being referred to as ‘The Miracle’ after surviving what I’d taken. I was admitted to hospital for observation before being assessed and discharged a few days later. During the course of twelve months I ‘d been through more than some people experience in a lifetime. I was given counselling, although my counsellor was only interested in ‘proving’ M.E. was a psychological disorder! My GP offered me a new array of medication which, to this day, I’m absolutely dumbfounded by. This is going to sound like some motivational jargon, but it changed me and I woke one morning deciding enough was enough. It was far from easy, in fact the hardest thing I’ve ever done, although strength and pure stubbornness pulled me through. I feel strangely detached from this now, as though it happened to somebody else, although I see the pain in my loved ones’ eyes. I do still struggle; these things become a part of who you are, although, thankfully, I’m firmly in charge now.
‘Wisdom is sometimes nearer when we stoop than when we soar.’
Over the next couple of years the M.E. got into a pattern of good and bad periods of health. Occasionally, a short spell of bed rest was needed to get through a difficult period of health. I was gradually able to get out of the house, both accompanied and alone. I could also socialise a little by attending local M.E. meetings and getting to know other sufferers. I had the energy to swim a couple of times a week (my local pool heated the water up for a senior citizens club and they allowed me to join in!) and was delighted to find that it eased my pains considerably. I started to do some childminding in my village and acquired a temporary position at the local playgroup. I then looked for other work and had a few short-lived jobs, struggling with both my health and employers’ attitudes towards M.E.
In the early part of 2000 I suddenly became bedridden and, during the following years, my health was extremely erratic. My health diminished further in 2010, and what followed were three relapses over the course of eighteen months. It took me a long time to recover and I was conscious of the fact that, having been battered by illness for twenty-eight years, my body needed more time and help to heal.
I am now forty-one years old and it feels as though I’m starting the diagnostic process all over again. In September 2019, I was suddenly incapacitated with sciatica. The pain became unbearable and this was accompanied by other worrying symptoms. I was rushed to the emergency clinic where they quickly ruled out Cauda Equina Syndrome; a serious neurological condition affecting the bundle of nerve roots at the lower end of the spinal cord. An MRI scan revealed an issue and I was referred to a neurologist who carried out further investigations. Six months later, just as the Coronavirus pandemic hit, I received a preliminary diagnosis. Chiari Malformation, which is a complex brain abnormality, has caused Syringomyelia, a disorder in which a syrinx (a fluid-filled cyst) forms within the spinal cord. These rare conditions have similar symptoms to other neurological conditions, such as M.E., which obviously makes my case rather complicated. I have been referred to a neurosurgeon and I’m using this time to adjust my lifestyle, once again, whilst carrying out some research.
‘It is not important what you believe, only that you believe.’
I launched M.E. Support nineteen years ago in order to help those touched by M.E. Through my experiences I’ve been able to guide fellow sufferers through this terrible disease. I am always delighted to hear from readers, so please don’t hesitate to Contact Me anytime.
Along with managing the site, I use my skills as a Photographer and qualified nail technician. I have a lot of interests, not forgetting to mention being a huge Elvis Presley fan, as well as a true petrolhead! I have lived in South East England my whole life, and now have a lovely home on the East Sussex coast. My wonderful mum remains my lifeline, although Dad has accepted the illness and since learnt more about it. Stuart is still a huge support and often cares for me; he never complains and deals with things in his own quiet way. My dear departed grandmother helped care for me during the early stages of M.E. and remained a constant support, even during her short battle with cancer in 2014. I missed out on the social skills you gain whilst growing up, which has certainly affected my adult life, and it’s been difficult to form friendships. I have many acquaintances but only a small group of true friends. My best friend and soulmate is an absolute rock; we have weathered the many ups and downs of life together. Relationships have been particularly challenging, and I must admit to finding single life easier for managing the M.E. I have no maternal instinct, which is somewhat of a blessing given my health, and I’m comfortable with the decision not to have children. You can read a little more about my life and work with M.E. in the interview Never Give Up.
‘Being deeply loved by someone gives you strength,
while loving someone deeply gives you courage.’
I have hopes in life and I’m accomplishing many things, it’s just taking a little longer than I’d like! However, sometimes I understandably feel that the passing years are being lost. I am not a religious person but often sit in the solitude of a church, collecting my thoughts and shedding the odd tear or two. We all have challenges in life, in one way or another, and maybe we have them for some unknown, individual reason. Could the initial challenge itself be to figure out that very reason? I believe that the course of our own lives will be clearer if we ever work this out! I appreciate my mistakes for what they are – precious life lessons that can only be learnt the hard way. I will continue to gain wisdom from my experiences; I’ll just keep on living my life.
If you or someone you know are feeling emotionally distressed, please take a moment to read Emotional Distress: Information & Support for help and advice.
Samaritans is available round the clock, every single day of the year, providing a safe place for anyone who is struggling to cope.