WHAT IS WRONG WITH ME?
I began to feel ill in December 2004 after a particularly bad dose of flu. It failed to follow the usual course of events and I became progressively worse. I was unable to speak, or wash myself and my husband had to do everything for me. I was extremely ill for over 6 weeks and consequently lost a lot of time from my new teaching job.
I finally returned to work at the end of January 2005. I was told at the time, that my chances of contracting a similar virus were very slim. Although I was able to maintain the job, I was not well. There were days when it was a real struggle to get through the day; I suffered with exhaustion, weakness, nausea, upset bowel and headaches. I could fall asleep easily at night but woke up every couple of hours, with my nightclothes drenched in sweat and my limbs aching and weak. My skin would itch, almost as if there was something crawling over it.
Some mornings I would cry as I dragged myself out of bed and into the shower. I would always turn up at school with a smile on my face; I didn't want the Head to suspect that I felt ill; he might have considered me unfit for the job.
On the days that I felt fine I would work late at school, sometimes not leaving until 9:30 pm (my working day began at 7:45 am). I was constantly being told by the Head and the senior management team that I should slow down and not leave so late, but when the energy was there I would use it. I wanted to progress and do well. I would always suffer a day or two later with exhaustion and headaches.
I was plagued with a succession of viral illnesses and stomach bugs. I consulted a Nutritional Therapist/Iridologist about my tiredness and stomach problems. She suggested that I stop taking wheat, yeast and diary products and reduce sugar. I had to take high doses of Evening Primrose Oil, strong Aloe Vera Juice and probiotics. For a while it did seem to help with the stomach problems but then the inevitable happened - I picked up another virus. Eventually the symptoms came back. Most days I found myself falling asleep in the car on the way home, unable to do anything in the evening but crash on the couch or go straight to bed. I would usually have to force myself to wake up so that I could prepare more work for the next day or complete my marking. Weekends were spent on the couch or in bed with a laptop on my stomach in order to complete the paperwork required for my job. My social life came to an abrupt end.
A CASE OF THE FLU?
In late December of 2005 I developed a stomach bug that was particularly bad (simultaneous vomiting and diarrhoea over 2 days); I was left with stomach pain and lack of appetite for weeks afterwards. Then in January I got another cold virus. I struggled on at work with the stomach problem and exhaustion but found it increasingly difficult. The slightest adrenalin rush (caused by anything and everything; from the telephone ringing to a clatter of saucepans) would cause the weakness and exhaustion to immediately descend on me. The joints in my hands and feet would ache and felt like blocks of ice. I would alternate between feeling cold one minute to excessive sweating (which was often embarrassing) the next.
Then in late January I was sent home from school after feeling very dizzy and strange during one of my classes. The movement of the trees swaying outside the classroom played with the sunlight entering the room and made me feel disorientated and confused and I began to suffer the symptoms of vertigo - although I had no idea what it was at the time. I tried to ignore it as I didn't want the children to become alarmed and I only had another twenty minutes to work, but eventually I had to send for another member of staff. My husband left his work took me straight to the doctor's surgery. Blood tests were done but nothing was found.
The Monday morning found me weak, but I struggled in to work trying to ignore the nausea and excruciating bowel pain. As the week went on I became more and more anxious and jittery. I was racked with incomprehensible sweats that plagued both my waking and sleeping hours. Several times during the night I would drag myself up out of bed to change my nightclothes.
Then I was struck with another viral illness - the third one in the space of a month. This one seemed different, more potent, as if I had been poisoned. I was left completely fatigued; sick with nausea and weakness. I continually tried to get myself up and out of bed but would immediately feel tired, weak and dizzy, so would return to the sanctuary of my bedroom, shaking and indignant.
The virus dragged on for weeks. The episodes of dizziness continued on a daily basis and I was often awoken by the sensation. I experienced a constant barrage of twitching and muscle jerks, vibration-like sensations in my arms, legs and stomach, as well as pins and needles and uncontrollable itching; as if I my whole body was covered in insect bites.
THE WAITING GAME
I began to become truly convinced that I was experiencing something more than influenza, when objects in my peripheral vision began to shake and move about. Then I started to drop things - a glass here, a cup there - they would just slip through my fingers spilling their contents everywhere. It was difficult to tell whether I was just being clumsy or something more insidious was happening - but I couldn't remember accidents occurring so frequently before. Several times I slipped and fell down the stairs; landing in a bruised heap at the bottom. I began to fear taking a shower as I experienced episodes of disequilibrium that would often lead to a fall. Frequently my mouth and tongue would not work properly and my speech became slow and slurred. Even the very act of chewing food caused me pain, as my jaw muscles spasmed with every small movement
As the weeks dragged on into months, the profound fatigue episodes continued until I rarely left the house. My muscles would become weak after only a few steps, leaving my whole body shaking with the effort. Yet some days I could manage a little housework. On those days I desperately tried to make up for lost time but would invariably suffer with the effort, days later. My sleep became badly affected; with a complete reversal of my normal pattern. I would often remain awake until the morning hours only to spend the whole day asleep. Other times I would find it difficult to stay asleep and would wake every couple hours.
I tried to explain the symptoms to my doctor, but there were so many of them that I feared she would think I was exaggerating, attention-seeking, or worse, an out-and-out hypochondriac. I tried to find the right words but the more I tried, the more muddled I became.
The months went on and blood test after blood test came back normal. I began to sink into a deep depression. In desperation, I started researching on the internet and eventually contacted a local chronic fatigue support group and told them my story. I was given details of a new service that the local health authority had just set up for people suffering with Myalgic Encephalopathy/Chronic Fatigue Syndrome (M.E/CFS)/Post Viral Fatigue Syndrome. I was told to call my doctor and give them the details as I couldn't be screened until I was officially referred by my general practitioner. My doctor agreed that I could be suffering with M.E. and sent off the paperwork.
FINALLY, A DEFINITIVE DIAGNOSIS!
As I waited to see the M.E. specialist, I began to experience inexplicable noise sensitivity which would lead to severe panic attack, nausea and vertigo. One such episode was precipitated by my husband getting dressed in the morning. The sound of flesh on fabric sent my head spinning and my stomach into convulsions. My short term memory worsened and I struggled to remember the names for common objects. I found it increasingly difficult to remain focused and easily lost track during conversations with my speech little more than a slur, at times. Episodes of ear and lymph gland pain, tinnitus, tremor, palpitations, shortness of breath, low blood sugar attacks, chills and poor circulation in my feet and hands, filled my every waking moment.
Finally, after dozens of tests and a visit to both a neurologist and ME/CFS specialist, I was given the definitive diagnosis of Chronic Fatigue Syndrome. But this was only the start of my journey as you will see.
WHAT IS WRONG WITH ME?
I began to feel ill in December 2004 after a particularly bad dose of flu. It failed to follow the usual course of events and I became progressively worse. I was unable to speak, or wash myself and my husband had to do everything for me. I was extremely ill for over 6 weeks and consequently lost a lot of time from my new teaching job.
I finally returned to work at the end of January 2005. I was told at the time, that my chances of contracting a similar virus were very slim. Although I was able to maintain the job, I was not well. There were days when it was a real struggle to get through the day; I suffered with exhaustion, weakness, nausea, upset bowel and headaches. I could fall asleep easily at night but woke up every couple of hours, with my nightclothes drenched in sweat and my limbs aching and weak. My skin would itch, almost as if there was something crawling over it.
Some mornings I would cry as I dragged myself out of bed and into the shower. I would always turn up at school with a smile on my face; I didn't want the Head to suspect that I felt ill; he might have considered me unfit for the job.
On the days that I felt fine I would work late at school, sometimes not leaving until 9:30 pm (my working day began at 7:45 am). I was constantly being told by the Head and the senior management team that I should slow down and not leave so late, but when the energy was there I would use it. I wanted to progress and do well. I would always suffer a day or two later with exhaustion and headaches.
I was plagued with a succession of viral illnesses and stomach bugs. I consulted a Nutritional Therapist/Iridologist about my tiredness and stomach problems. She suggested that I stop taking wheat, yeast and diary products and reduce sugar. I had to take high doses of Evening Primrose Oil, strong Aloe Vera Juice and probiotics. For a while it did seem to help with the stomach problems but then the inevitable happened - I picked up another virus. Eventually the symptoms came back. Most days I found myself falling asleep in the car on the way home, unable to do anything in the evening but crash on the couch or go straight to bed. I would usually have to force myself to wake up so that I could prepare more work for the next day or complete my marking. Weekends were spent on the couch or in bed with a laptop on my stomach in order to complete the paperwork required for my job. My social life came to an abrupt end.
A CASE OF THE FLU?
In late December of 2005 I developed a stomach bug that was particularly bad (simultaneous vomiting and diarrhoea over 2 days); I was left with stomach pain and lack of appetite for weeks afterwards. Then in January I got another cold virus. I struggled on at work with the stomach problem and exhaustion but found it increasingly difficult. The slightest adrenalin rush (caused by anything and everything; from the telephone ringing to a clatter of saucepans) would cause the weakness and exhaustion to immediately descend on me. The joints in my hands and feet would ache and felt like blocks of ice. I would alternate between feeling cold one minute to excessive sweating (which was often embarrassing) the next.
Then in late January I was sent home from school after feeling very dizzy and strange during one of my classes. The movement of the trees swaying outside the classroom played with the sunlight entering the room and made me feel disorientated and confused and I began to suffer the symptoms of vertigo - although I had no idea what it was at the time. I tried to ignore it as I didn't want the children to become alarmed and I only had another twenty minutes to work, but eventually I had to send for another member of staff. My husband left his work took me straight to the doctor's surgery. Blood tests were done but nothing was found.
The Monday morning found me weak, but I struggled in to work trying to ignore the nausea and excruciating bowel pain. As the week went on I became more and more anxious and jittery. I was racked with incomprehensible sweats that plagued both my waking and sleeping hours. Several times during the night I would drag myself up out of bed to change my nightclothes.
Then I was struck with another viral illness - the third one in the space of a month. This one seemed different, more potent, as if I had been poisoned. I was left completely fatigued; sick with nausea and weakness. I continually tried to get myself up and out of bed but would immediately feel tired, weak and dizzy, so would return to the sanctuary of my bedroom, shaking and indignant.
The virus dragged on for weeks. The episodes of dizziness continued on a daily basis and I was often awoken by the sensation. I experienced a constant barrage of twitching and muscle jerks, vibration-like sensations in my arms, legs and stomach, as well as pins and needles and uncontrollable itching; as if I my whole body was covered in insect bites.
THE WAITING GAME
I began to become truly convinced that I was experiencing something more than influenza, when objects in my peripheral vision began to shake and move about. Then I started to drop things - a glass here, a cup there - they would just slip through my fingers spilling their contents everywhere. It was difficult to tell whether I was just being clumsy or something more insidious was happening - but I couldn't remember accidents occurring so frequently before. Several times I slipped and fell down the stairs; landing in a bruised heap at the bottom. I began to fear taking a shower as I experienced episodes of disequilibrium that would often lead to a fall. Frequently my mouth and tongue would not work properly and my speech became slow and slurred. Even the very act of chewing food caused me pain, as my jaw muscles spasmed with every small movement
As the weeks dragged on into months, the profound fatigue episodes continued until I rarely left the house. My muscles would become weak after only a few steps, leaving my whole body shaking with the effort. Yet some days I could manage a little housework. On those days I desperately tried to make up for lost time but would invariably suffer with the effort, days later. My sleep became badly affected; with a complete reversal of my normal pattern. I would often remain awake until the morning hours only to spend the whole day asleep. Other times I would find it difficult to stay asleep and would wake every couple hours.
I tried to explain the symptoms to my doctor, but there were so many of them that I feared she would think I was exaggerating, attention-seeking, or worse, an out-and-out hypochondriac. I tried to find the right words but the more I tried, the more muddled I became.
The months went on and blood test after blood test came back normal. I began to sink into a deep depression. In desperation, I started researching on the internet and eventually contacted a local chronic fatigue support group and told them my story. I was given details of a new service that the local health authority had just set up for people suffering with Myalgic Encephalopathy/Chronic Fatigue Syndrome (M.E/CFS)/Post Viral Fatigue Syndrome. I was told to call my doctor and give them the details as I couldn't be screened until I was officially referred by my general practitioner. My doctor agreed that I could be suffering with M.E. and sent off the paperwork.
FINALLY, A DEFINITIVE DIAGNOSIS!
As I waited to see the M.E. specialist, I began to experience inexplicable noise sensitivity which would lead to severe panic attack, nausea and vertigo. One such episode was precipitated by my husband getting dressed in the morning. The sound of flesh on fabric sent my head spinning and my stomach into convulsions. My short term memory worsened and I struggled to remember the names for common objects. I found it increasingly difficult to remain focused and easily lost track during conversations with my speech little more than a slur, at times. Episodes of ear and lymph gland pain, tinnitus, tremor, palpitations, shortness of breath, low blood sugar attacks, chills and poor circulation in my feet and hands, filled my every waking moment.
Finally, after dozens of tests and a visit to both a neurologist and ME/CFS specialist, I was given the definitive diagnosis of Chronic Fatigue Syndrome. But this was only the start of my journey as you will see.