It Started with a Story
Seventeen years ago tomorrow, my brother Stuart helped me create M.E. Support, having introduced me to the internet. There was limited information about M.E. on the web, and personal experiences seemed to be restricted to forums, therefore I decided to write ‘M.E. My Story’. This was an emotionally challenging process, and I was certainly nervous about publishing it, but messages instantly started arriving from grateful readers. It is incredibly important to share our stories, as they reassure and support fellow sufferers, along with educating the greater public. Here you can read an extract of my updated article, along with a review by M.E. Support Ambassador Rochelle Hanslow.
Review by M.E. Support Ambassador Rochelle Hanslow
M.E. Support has been going for 17 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 25 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.’
Please continue to M.E. My Story for part two of this article.