The Beginning
The year was 1988. I was 20 years old, working and living in a city about 30 miles from my home town. It was christmas eve and I was ill, in bed, feeling awful.
My flat mate had gone away so I was 'home alone' and I knew straight away this was no regular virus, I could barely lift my head up.
In a phonecall, my parents decided to come and pick me up and bring me home to Liverpool where I could rest, be looked after over the holiday season.
This was the beginning of my health crisis.
I never went back.
The flu hung around. I just could not shake off the intense fatigue, the joint pain, muscle pain, the headaches and the brain ache.
Everything seemed such a huge effort and I really didnʼt know what to do.
At that point, there wasnʼt anything I could do.
Except sleep.
New Year came and went. It was 1989 when visiting my Doctor, again, still feeling exhausted, he suggested that I may have a glandular virus, or even glandular fever. I was sent for tests but nothing returned positive. Now, I know this to be quite usual. Test results for glandular fever often come back negative.
But by the time February appeared, I had been home, ill for 2 months.
2 months. Two months.
Where did that time go? I had hardly emerged from bed. I was ʻout of itʼ but managed to see the Consultant that my doctor had suggested. This consultant diagnosed Post Viral Fatigue Syndrome, but he also gingerly mentioned that it could also be M.E.
M.E?
What the heck was that?
That’s when this health crisis really began to sink in.
I had to find out information about M.E (Myalgic Encephalomyelitis.)
It was beginning to sink in.
I found a charity called ʻAction for M.Eʼ and they really made a difference, providing me with so much information, this was before websites so it was all sent to me in the post. I had to dive in as best as I could, considering all the symptoms I had.
I just knew I had to try to take control of this health problem.
I was nearly 21 and I just knew, deep within me that I had to do my upmost to try to heal myself. I wasnʼt going to take anything that would freak my body system out any further. I just knew this. Inside. From a very deep part of me.
I knew I had to become my own Private Investigator.
I had to heal myself.
Donʼt ask me where this came from, but the 21-year-old me just knew instinctively and intuitively that only she could
find her way out of this.
I spent the next 9 years doing just that.
My progress was very, very slow in the first 5 years, I was still living at home, not able to work and my health got much worse before it began to turn a corner. Yet I knew I had to continue to find my way through it. My days were spent in bed, not able to move, sleeping, holding the paw of my lovely healing dog Benjie. in those early days, I couldnʼt do anything. My progress was very slow. It seemed to be a long drawn out process. The amount of therapies and treatments that I tried during these years was long.
My story is a long story.
But.
With everything I was doing, by the age of 24 I was beginning to see small results. I was able to study two afternoons a week and train to be a counsellor.
At 26 I applied to study an honours degree in Health at Liverpool John Moores University. I could just about cope with the 3 days in lectures and all the extra work. After graduating I then secured a Lecturing position at a Further Education College for aged
16-60 students and I also was now teaching extra hours at the University I had just left.
The healing I was committed to, was responding.
Around the age of 24, I started dating a man who had a similar health problem to M.E – he was severely affected by chemicals and food, his symptoms masked by extreme fatigue and muscle pain. We had met through our ill health and this seemed a perfect connection. We got married when I was 28 a year before I graduated, when I was 29.
29 was the point where my health restored itself.
My life went through many other transitions as I reached 34 and I separated and divorced (thatʼs another story!) We drifted apart. Our ill health brought us together when maybe we would never have connected. During this time on my own, I moved 4 times with my beloved Jack Russell Lucy and split between being employed and working for the University of Liverpool as well as establishing my own healing practice as a writer, artist, counsellor, coach, reiki healer, teacher and workshop creator.
I took knocks and hits. Yet my health equilibrium has always stayed firm.
At 37 I magically manifested my spiritual Cornishman and we set up our life together. Now aged 45, I focus my healing art, coaching and reiki on individuals and animals who need me. I share my suggestions and practices for healing people back to health. I restored my health. Sounds a tad twee. Itʼs true though.
Recently, I was listening to an interview with Shirley Conran ex wife of Sir Terence Conran, mother of Jasper. She was talking about her own ill health with M.E, how she had been so ill, coping with the day-to-day M.E symptoms. She said “I have never ever met anyone who has got well. Anyone who has M.E will always have it – theyʼll either be in Remission or Recuperating.”
“You haven’t met me then!” I shouted at the radio.
It dawned on me, there and then, that people who have been ill with M.E and recover, reenter their life with gusto, they often donʼt look back to share their story. They have spent too much time suffering with such challenging symptoms and now they want to embrace the life they have. They have to play catch up.
That is what I did.
I got stuck into my career and my life. I tried not to think about M.E. I didnʼt want to really talk about it, although I was always supportive and helpful if anyone wanted to speak to me about it and seek advice. However I didnʼt seek it out. Over time, I realised that my healing story needs to be shared for others to read.
• Those of you, who are totally incapacitated and bed ridden
• Those of you, who are coping with extreme fatigue and who may not have a diagnosis
• Those of you, who are in the midst of your M.E/CFS/Candidiasis and struggling
• Those of you, who are overwhelmed with information
• Those of you, who care for someone who is suffering with any or all of the above.
• Those of you who are tired all the time, just about cope with working and come home shattered, heading straight for bed.
Know that Iʼm truly with you and I know how you feel.
My flat mate had gone away so I was 'home alone' and I knew straight away this was no regular virus, I could barely lift my head up.
In a phonecall, my parents decided to come and pick me up and bring me home to Liverpool where I could rest, be looked after over the holiday season.
This was the beginning of my health crisis.
I never went back.
The flu hung around. I just could not shake off the intense fatigue, the joint pain, muscle pain, the headaches and the brain ache.
Everything seemed such a huge effort and I really didnʼt know what to do.
At that point, there wasnʼt anything I could do.
Except sleep.
New Year came and went. It was 1989 when visiting my Doctor, again, still feeling exhausted, he suggested that I may have a glandular virus, or even glandular fever. I was sent for tests but nothing returned positive. Now, I know this to be quite usual. Test results for glandular fever often come back negative.
But by the time February appeared, I had been home, ill for 2 months.
2 months. Two months.
Where did that time go? I had hardly emerged from bed. I was ʻout of itʼ but managed to see the Consultant that my doctor had suggested. This consultant diagnosed Post Viral Fatigue Syndrome, but he also gingerly mentioned that it could also be M.E.
M.E?
What the heck was that?
That’s when this health crisis really began to sink in.
I had to find out information about M.E (Myalgic Encephalomyelitis.)
It was beginning to sink in.
I found a charity called ʻAction for M.Eʼ and they really made a difference, providing me with so much information, this was before websites so it was all sent to me in the post. I had to dive in as best as I could, considering all the symptoms I had.
I just knew I had to try to take control of this health problem.
I was nearly 21 and I just knew, deep within me that I had to do my upmost to try to heal myself. I wasnʼt going to take anything that would freak my body system out any further. I just knew this. Inside. From a very deep part of me.
I knew I had to become my own Private Investigator.
I had to heal myself.
Donʼt ask me where this came from, but the 21-year-old me just knew instinctively and intuitively that only she could
find her way out of this.
I spent the next 9 years doing just that.
My progress was very, very slow in the first 5 years, I was still living at home, not able to work and my health got much worse before it began to turn a corner. Yet I knew I had to continue to find my way through it. My days were spent in bed, not able to move, sleeping, holding the paw of my lovely healing dog Benjie. in those early days, I couldnʼt do anything. My progress was very slow. It seemed to be a long drawn out process. The amount of therapies and treatments that I tried during these years was long.
My story is a long story.
But.
With everything I was doing, by the age of 24 I was beginning to see small results. I was able to study two afternoons a week and train to be a counsellor.
At 26 I applied to study an honours degree in Health at Liverpool John Moores University. I could just about cope with the 3 days in lectures and all the extra work. After graduating I then secured a Lecturing position at a Further Education College for aged
16-60 students and I also was now teaching extra hours at the University I had just left.
The healing I was committed to, was responding.
Around the age of 24, I started dating a man who had a similar health problem to M.E – he was severely affected by chemicals and food, his symptoms masked by extreme fatigue and muscle pain. We had met through our ill health and this seemed a perfect connection. We got married when I was 28 a year before I graduated, when I was 29.
29 was the point where my health restored itself.
My life went through many other transitions as I reached 34 and I separated and divorced (thatʼs another story!) We drifted apart. Our ill health brought us together when maybe we would never have connected. During this time on my own, I moved 4 times with my beloved Jack Russell Lucy and split between being employed and working for the University of Liverpool as well as establishing my own healing practice as a writer, artist, counsellor, coach, reiki healer, teacher and workshop creator.
I took knocks and hits. Yet my health equilibrium has always stayed firm.
At 37 I magically manifested my spiritual Cornishman and we set up our life together. Now aged 45, I focus my healing art, coaching and reiki on individuals and animals who need me. I share my suggestions and practices for healing people back to health. I restored my health. Sounds a tad twee. Itʼs true though.
Recently, I was listening to an interview with Shirley Conran ex wife of Sir Terence Conran, mother of Jasper. She was talking about her own ill health with M.E, how she had been so ill, coping with the day-to-day M.E symptoms. She said “I have never ever met anyone who has got well. Anyone who has M.E will always have it – theyʼll either be in Remission or Recuperating.”
“You haven’t met me then!” I shouted at the radio.
It dawned on me, there and then, that people who have been ill with M.E and recover, reenter their life with gusto, they often donʼt look back to share their story. They have spent too much time suffering with such challenging symptoms and now they want to embrace the life they have. They have to play catch up.
That is what I did.
I got stuck into my career and my life. I tried not to think about M.E. I didnʼt want to really talk about it, although I was always supportive and helpful if anyone wanted to speak to me about it and seek advice. However I didnʼt seek it out. Over time, I realised that my healing story needs to be shared for others to read.
• Those of you, who are totally incapacitated and bed ridden
• Those of you, who are coping with extreme fatigue and who may not have a diagnosis
• Those of you, who are in the midst of your M.E/CFS/Candidiasis and struggling
• Those of you, who are overwhelmed with information
• Those of you, who care for someone who is suffering with any or all of the above.
• Those of you who are tired all the time, just about cope with working and come home shattered, heading straight for bed.
Know that Iʼm truly with you and I know how you feel.
Why am I writing this?
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When I was in the beginning phase of ill health, I contacted a local organisation and they said they would send a representative to speak to me and give me advice, support and invite me to the weekly group meeting. When the lady came to my house, my mum opened the front door and in walked a woman on two walking sticks, barely able to walk. She promptly sat down and introduced herself, telling me that she had been ill with M.E for 30 years.
What? 30 years. Gulp! Seriously? I listened and I nodded my head, but I knew in that moment that I had to do ALL I COULD to heal myself. When she left, my mum and I sat, dumbfounded. Why did the organisation send me someone who had been ill for 30 years, why not someone who had recovered? A person who I could ask questions about medical processes, symptoms, remedies and healing practices. Someone who could support and inspire me. A role model, who was WELL, healthy and living their Life, not ill for 30 years. I knew how important it was to gain support from others who were also going through a similar health problem and I did connect with others through local support groups. However, I never went to weekly meetings, as I didnʼt want to sit around in a circle talking about my symptoms. I wanted to talk to people who had recovered. I want you to feel that you are reading the words of someone who has walked in your shoes. Someone, who has experienced extreme debilitation, pain, and despair, trying to find her way back to health. Only this time, Iʼm here to show you that Iʼm well, healthy and back to full health. I have been like this for a long long time. I donʼt have ME. It dominated my 20s.......................yet my 30s and 40s were and are healthy Iʼm here to inspire you so that you know itʼs possible. I want to take you through some of the processes I investigated and experienced. Some of them worked and some of them didn't. That doesn't mean they won't work for you. This will obviously all depend on how ill you are feeling. If you can do just one of these things, it will begin to help. I am not and would never imply that being “positive” will make you well. I used to feel uncontrollable pain and anguish when anyone used to say that the ME that I had was ʻpsychosomaticʼ – it made me feel incredibly guilty, as if I had brought this on myself. This books is here to help support your body and your mind and your soul. Just how I did. I had lots of different treatments that related to my diet and my immunity with private consultants. I never went down the western medicine route – well, to be honest, there wasnʼt really any treatment programme back in the early 90ʼs. There was one consultant who was treating M.E patients with ʻgraded exercise programmesʼ but I knew that wasnʼt going to work for me, it was quite controversial at the time. Graded Exercise? Mmm... I don't think so. CBT, cognitive behavioural therapy, which is a suggested treatment now, complements the treatment programme, but it is by no means the only answer. For you, it may be different. We are all different. I am offering you a window into my healing. If something resonates with you, then I will be thankful. I hope that I am not offending you or your health. We all have suffered with different percentages of severity. This story will take you on a journey for becoming your own private investigator. Thank you for joining me. Much love Julia xx |
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What is M.E?
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Myalgic Encephalomyelitis (M.E.) is an illness with many names. Within the UK National Health Service it is commonly called Chronic Fatigue Syndrome (CFS or CFS/M.E.). Sometimes it is known as Myalgic Encephalopathy or diagnosed as Post Viral Fatigue Syndrome (PVFS).
* Myalgic: meaning muscle * Encephalo: meaning brain * Pathy: meaning suffering or sickness M.E. is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems. Many people with M.E. experience persistent fatigue or pain. However, M.E. is characterised by a range of additional symptoms. Symptoms may include persistent exhaustion (ʻfatigueʼ), muscle and/or joint pain, sleep disturbance, ʼflu-like symptoms such as headache, sore throat, painful lymph nodes, dizziness and/or nausea and problems with memory and concentration. M.E. affects people in different ways and to differing degrees. Itʼs a very variable illness and your symptoms can change over time. While itʼs important to find out more about the range of symptoms experienced by different people with M.E. - it is also important to know that people may only experience a few of them.
What's with the stripey tops!!?!
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The National Institute for Health and Clinical Excellence (NICE) acknowledges that the physical symptoms of M.E. can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions. Its guidelines on CFS/M.E. outline three levels of severity – mild, moderate and severe as follows:
Mild: “People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.” Moderate:“ P e o p l e w i t h moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.” Severe: “People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after effect if they do so. They may also spend most of their time in bed, and are often extreme |
