Shiloh Moore left school age 15. Aged 17 she presented this speech to her former schoolmates to raise awareness for ME/CFS. 8/8/1997
Good morning everyone,
It feels quite strange looking from this direction of the school’s chapel, rather than being seated in one of the pews with you.
Some of you may recognise me. My name’s Shiloh Moore, and from 1993 to 1995 I attended grades 8 to 10 with the current grade 12s. Had I been well, I’d be in grade 12 this year.
The reason I no longer attend school is because for the past few years, I have had Chronic Fatigue Syndrome severely. For most of the time I have not been well enough to sit up or be active for more than a few minutes, before physical exhaustion, muscle aches and pain, headaches, and tiredness make it too difficult for me to continue. To very basically describe it, I constantly feel exhausted, even when I have done no physical activity. Also, every second of every day since 1992, muscles from all over my body ache or feel sore constantly. Try to imagine that. I’m 17, and its been at least 5 years since I last felt physically pain-free. In the same way that you find it impossible to comprehend being ill for years at a time, I find it extremely confusing to imagine feeling well. What is feeling without pain like? I find it confusing to imagine being healthy. It is so unknown to me.
Anyway, I’ve come here today, to encourage students to get involved in fundraising, and to spread awareness for Chronic Fatigue Syndrome.
When I started in year 8 at this school in 1993, I was a typical innocent teenager, stressed by insignificant problems, loving life, and enjoying the excitement of finally being in high school. I was actively involved in six extracurricular activities, which I loved passionately. I achieved academic awards and service awards, had many great friends, a wonderful family, and a life as similar to the Brady Bunch as you could possibly dare want. I dreamed of being a flute teacher, kindergarten teacher, writer, or a speech pathologist. I was going to have a comfortable home, a husband and two kids. Having completed high school and university, I would enjoy being a full-time employed woman. I even remember I once prayed to God, asking him why he didn’t make everyone’s lives as good as mine.
Now, four years down the track, its unlikely I’ll even finish high school.
Even back in grade 8, severe back pain, vulnerability to viruses, premature exhaustion, headaches, anxiety and difficulty handling stress were warning signs of what was to come. At the time, I thought everyone felt sore and achy all the time like I did. Doctors told me I had normal growing pains so I thought, surely I’m normal, so pain must be a taboo subject or something. Nobody else complained, so nor would I.
By the end of grade 9, 1994, I had to pull out of all extra curricular activities, hundreds more symptoms were present, and I was finally diagnosed with Fibromyalgia Syndrome and Chronic Fatigue Syndrome (CFS), otherwise known as Myalgic Encephalomylitis (ME).
In year 10,1995, my health plummeted. I struggled to attend school with a reduced timetable.
For the first few months of 1996 I attempted attending one subject, but even that I couldn’t handle. The effort to dress and be driven to school was enough for me to need hours of sleep to recover. Concentrating was no longer possible, because the sharp headache across my forehead and constant state of confusion was too much to bear. Sitting and standing up increase my pain levels dramatically, and even talking became a huge effort. For many months I was unable to leave the house without a wheelchair. Although I can walk, it hurts a lot and I feel faint, so even now, if I need to go more than a few metres I’ll need to be pushed in the chair.
For nine months last year, for about three hours every day, I would have what I call a fade-out. I’d lie in bed, motionless. The pain in every muscle of my body was excruciating: breathing became a huge effort. The slight wobble of your hands when you try to be perfectly still felt like someone was throwing bricks at them. Thinking at a normal pace would give me a sharp headache, so I had to concentrate on slowing down my thoughts, which completely exhausted me. I couldn’t talk, so I’d put my thumb up for ‘yes’ and down for ‘no’. Keeping my eyes open was intensely painful. Any light whatsoever in my room totally exhausted me. Even the slight noise of cars hundreds of metres from my home, or a T.V. in a house down the street from mine, would drain all my energy. The smell of food, even vegetables, would make me nauseous. Once, it took me half an hour to eat one sayo biscuit, with Dad breaking it up and placing bits on my tongue for me. My head was spinning and ached intensely. My family and friends were totally scared when they saw me like this.
When I was in this state, I found it odd, because I seemed to be afraid of nothing, I was totally peaceful and completely calm. It was when I was well enough to think, with enough energy to sit up, but not enough to write or do something, when I became anxious, depressed, paranoid and full of self-loathing.
Although the physical struggles with Chronic Fatigue Syndrome are difficult and often seem unbearable, I’ve always thought the psychological struggle with CFS is much worse.
The grief and losses are enormous. All my dreams and expectations were stolen from me. The possibility that I may be ill for the rest of my life is rather daunting on a young teenager’s mind.
I used to define myself by what I did. When asked to describe Shiloh Moore, I once said: she loves hockey, flute, debating, piano, singing, art, Chinese, science, maths, does well at school and loves being with her friends. Remembering that now, the only thing I can still do, is be with my friends, yet even this is made more difficult, as I’m unable to join regular organised groups reliably. Instead, I have to arrange all social contacts myself and have them come to me as I can rarely leave my house.
After over nine months of severe anxiety brought on by CFS, recently I am finally able to say I’m surviving, and I am even enjoying life once again. I consider myself fortunate. From the very beginning, I have been supported by my wonderful family, my faith in God, doctors who trust and believe in me, and I especially appreciate all the support I have received from friends, many of whom go to this school.
I now want to share my experiences to support others. If you know another person with CFS or any other debilitating illness, dont be shy: just say hi!. Offer your friendship, and accept them for the human beings they still are. I have no doubt that your encouragement would be appreciated. There are many people with Chronic Fatigue Syndrome who dont get the support from their family and friends that I am fortunate to receive. For them, I ask you to help me spread awareness and hopefully raise money towards research into Chronic Fatigue Syndrome, to help improve the quality of their lives, as well as mine.
To put it simply, Chronic Fatigue Syndrome can be a very debilitating illness. To have it as severely as I have, is rare, although thousands all over the world, from every human race studied, suffer from it to some degree. At present there is no obvious diagnostic tool, no knowledge of what the disease actually is, and no cure. It is not contagious, but there may be an hereditary disposition.
To date, there has been no government funding whatsoever towards research or education. Currently, the University of Newcastle is doing research, and we are hoping to be able to start some research in Brisbane in the near future. To be able to do this, we need the funds. All money donated to this cause is gratefully appreciated.
One dollar from everyone in the world would never give me back the dreams and the opportunities of the past that have been stolen from me by CFS. I will continue to be reminded of what I have lost, and will miss out on. For example, at the end of this year my classmates will graduate and enjoy their formal and Schoolies’ week, as a sign of closure to their lives at school. I never knew when my last day of school would be. Nor did I have the chance to celebrate with hundreds of friends I shared the experience with. I don’t feel as if my life at school is completed. But I know I will never return to the place I know as being school, the place filled with familiar faces and friends.
But I can say this. Every effort to spread acceptance, understanding and support for people with Chronic Fatigue Syndrome makes the quality of our lives more bearable. Support is important, whether it be financial support for research, support from friends and social inclusion, or simply better community awareness and willingness to accept people with Chronic Fatigue Syndrome.
No matter how small, every effort we make towards supporting people with CFS, is gratefully appreciated.