- Chapter 1
Lets start at the very beginning..
I first became sick with Chronic Fatigue Syndrome after I had the measles, mumps and rubella vaccination in year seven, at school. I was 12 years old and within 20 minutes I came down with severe flu like symptoms.
My doctor at the time confirmed I had an asthma attack but denied it was linked to the vaccination. My mother thought was an unbelievable coincidence the time frame between the vaccination and the “attack”.
We learnt pretty fast that most doctors would defend the vaccinations and deny that it could be harmful to some, even when proof is staring them in the face.
From then on my health went down hill. I was very fatigued; I had no energy. I just wanted to sleep all the time. I was always in bed, for months on end I would sleep day in, day out. I started having stomach problems, my glands in my neck and under my arms would swell up, and I also suffered from muscle pain. Climbing up the stairs was a killer; I was becoming physically weak. I always felt like I was going to faint. I was losing a lot of weight and always-looked pale and washed out.
I stopped going out with friends and started missing a lot of school. My doctor told my parents there was nothing wrong with me that it was all in my head. I started seeing a specialist who diagnosed me with Post Viral Syndrome and after six months I was diagnosed with Chronic Fatigue Syndrome.
I had so many tests done that I cannot remember them all. After a while my GP and Specialist developed an attitude, most likely because they were ignorant when it came to Chronic Fatigue Syndrome.
My symptoms would change over months, some would stop or I would get new ones. Sleep and fatigue were the biggest problem. While I was asleep not even an ice-cold bucket of water could “wake” me up. Though the scariest thing for me was I could hear everything I just couldn't move, not even my eyelids.
I couldn't speak to tell them, that I was unable to move. I felt like I was paralyzed and a ton of weights were on top of me.
The years at school were hard; I still look back now and feel like it was one big nightmare. Keeping this in mind, I had made a decision that if any of my children were to develop Chronic Fatigue Syndrome I would pull them out of school and attempt home schooling and after school activities.
I was struggling with schoolwork, especially on my bad days. My memory and concentration were failing me. In English I remember reading and getting very frustrated as by the time I would finish reading the sentence I would have forgotten what I had read. You can understand the frustrations of this, being sixteen, and not being able to keep up, it would drive me to tears.
It was very hard to feel like a normal teenager especially when the friends around you were slowly losing interest and found ways to bully you and exclude you from the group. I know it was because I was sick all the time and they actually had the guts to say that to my face! They had no idea and didn't understand. When I was first sick they were sympathetic then they were just plain cruel, and didn't want anything to do with me.
I became friends with a girl in year eight. She knew who I was. In fact the whole year knew who I was. Back in year seven when I first became ill the school counselor thought, for some unknown reason, it would be a good idea to hold anassembly and tell the whole year seven just how sick I am!
I came back to school after having a few months off and would walk down the year seven corridor wondering why people I have never spoken to were saying hello to me every five minutes.
I became good friends with this girl pretty quickly; she stood by me and stood up for me when I wasn't around. At the time I thought she taught me what a truefriend was; (it wasn't until many years later in our twenties I learnt she was never the true friend I wanted) this friend stabbed me in the back at one of the hardest times in my life but she also taught me how to stand up for myself.
People are ignorant when it comes to CFS (Chronic Fatigue Syndrome). They just look at you and straight away put it down to being lazy or all in the head.
I remember one girl at school who said to me “everyone gets tired all the time”; I just stared at her and thought “for someone who is supposed to be one of the smartest girls in our year, you sure sound stupid”. If only that was the problem, because no one claims to be sick or has so much time off school because they are “just tired”. In year seven I was so sick I only went to school for a couple of lessons a week. In year ten I was in and out of hospital with stomach problems and she knew this, everyone did.
I remember even some teachers had an attitude. By the time I was in year ten I had, had enough so I was starting to talk back to the teachers. I mostly got away with it, I think because they saw that I was doing my best and that was all I could do, even if my best, to others, did not seem like a lot. It was still my best. In fact after having “arguments” with teachers, I gained a lot more help then I did when I was first ill.
I remember having a go at my drama teacher when I was in year nine, because he suggested that I was always trying to get out of work; if only he knew how much I wanted to go to NIDA (National Institute of Drama and Acting) I shot back at him so fast, everyone in my class froze and looked back (the rest of the students were year ten's and sometimes I was pretty quiet in class.) Of course when I demanded to know if he was suggesting I'm trying to get out of work he denied and my response was: “yeah well it sure doesn't sound like it does it?” I remember saying that loud and clear to his back as he walked out of the hall.
I just remember from then on I was always having to stand up for myself to teachers, I recall at least two more similar situations like that one with my arts teacher and I.T teacher. In fact come to think about it I think the only teachers that could see I was trying my hardest was my math’s teachers in year ten. I remember being in the basic math’s class; it wasn't that I was ‘stupid’ at math it was that I missed out on so much groundwork. But I found these classes so easy and remember being at the top of the class and scoring 100% on tests.
The unfair part for me is that if I had been diagnosed with cancer or something along those lines, it would be different. Everyone would be sympathetic, waiting for a cure or worse to die. I hate to admit this but there were times I wished it was that simple. There's no cure for CFS and you don't die from it, unless there's a complication due to other health problems, which may or may not be a direct cause from CFS (for example I have read a lot of people who have CFS end up with heart problems).
Complication. Now there's a word. Over the years I have discovered I'm allergic or have very bad reactions to medication, due to CFS, of course.
I was 16 at my year ten formal, feeling quiet sick. That year I had been in and out of hospital, always stuck on a drip due to stomach problems.
When I returned home after the formal, my parents rang the after hours doctor. He gave me an injection of maxalon. The next day I had a reaction to it, I began having muscle spasms, they started in my back, I couldn't control my muscles, and they just started twisting. My arm was twisted back and it affected my back and went up into my neck, throat and tongue.
I was beginning to struggle to breathe because I was choking on my tongue. My dad rushed me to hospital. I couldn't even sit straight in the back seat. My whole body was twisted and I was half falling off the seat. I remember my sister screaming when she realised I was becoming more desperate and struggling to breathe.
At the hospital they gave me an injection of Cogentin to relax my muscles. Unfortunately I had a reaction to that and was hallucinating for the next 48 hours.
I remember coming out of it and feeling disorientated because two days had gone by with out me knowing it. To this day, I don't understand the thrill of getting “high”; I found the whole experience quiet scary, having no control over my own body, for a few days.
My parents found a doctor in Sydney who specialised in CFS. I saw him a few times and he did a number of tests. One thing he found was that I had the Epsen Bar Virus (EBV), which I caught from my mother who had glandular fever about 12 years ago, when I was very young. The EBV just sits there in your body and it doesn't develop into Glandular Fever.
Unfortunately by the end of the 5th year of suffering from CFS, I had developed depression from being ill for so long. I decided I wanted nothing to do with doctors
The mental and emotional effect this illness has, leaves a scar for life.
I will forever look back and wonder how my life would have been if I weren't sick. Sometimes I feel so frustrated I scream. After I scream I sit in silence. I am numb.
It's hard to come to terms with an illness that takes over your life, an illness that has ruined or destroyed many aspects of my life, an illness that makes everything more painful physically and more exhausting mentally. When I'm sick it takes three times longer to get better, meaning not weeks or days but months.
With Chronic fatigue syndrome you have to try to stay strong, even if you’re not, because otherwise this illness will bring you down. It will beat you.
The times I'm not well are easy to pick up on if you’re not ignorant to CFS and if you know me well.
When I'm going through a bad time my speech is muddled up and slurred as if I were drunk. I use the wrong words or my sentences will be completely backwards. If I'm trying to write my spelling will be all over the place. I can’t concentrate or think clearly. It’s hard to comprehend what people are saying. I will break out in a cold sweat and my body will be aching with unbearable muscle pain. I will tremble and not be able to control it and my neck will swell up due to my glands. I will have no energy, at the worst times I will pass out.
I feel very humiliated when that happens even when it's just in front of my husband. Because here I am at 27 and I cant even go for a 5-minute walk at times.
Battling with depression was very hard. I was 16, struggling to be a teenager (which was hard enough) coming to terms that I couldn't complete my dreams, which was my HSC and a diploma at tafe. I was then planning to go straight to university to study. I wasn't really thinking about boys, marriage or babies. In fact I didn't plan on getting married until I was at least 30 and start having kids when I turn 35! Little did I know God was laughing, while thinking to himself “I have other plans for you”.
I was 17, had thrown in tafe and was trying to get through one of my deepest depressions, at the same time trying to be a teenager, dating and hanging out with friends. It was around that time I started putting my feelings into words, and found I had a knack for writing poetry. A few months later I started dating a guy who I was destined to marry.
I'm pretty lucky I found a guy who loved me and understood me from the start. He knew I was unwell and for the next few years I continued to suffer from stomach problems, which doctors couldn't figure out.
As the years rolled by I knew the longer I had CFS the less likely I would ever get better. Even on a normal day I still experience at least one symptom. There are no days when I am one hundred percent well. I tried to join the work force a few times but it was impossible, I was too sick. I went back to tafe but struggled and in the end gave up. Finally just before Grant and I were to marry in 2002 I went back to tafe to study tourism. I was doing extremely well and was getting distinctions in most subjects. But even in tafe I had trouble with a teacher who actually threw me out of class because I was too tired! I can’t tell you how great it felt when I scored a hundred percent in my exam and assessment tasks in that particular class!! I managed part time for 18 months. Three months after we were married I fell pregnant and I threw in tafe knowing I gave it my best shot.