In 2017 I organised some community screenings of Jennifer Brea’s award winning documentary ‘Unrest,’ on ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.) This exceptional film is now available for viewing on Netflix and iTunes worldwide. This was my speech:
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Hi, my name’s Shiloh Moore, and I identify with much of Jen Brea’s experience in Unrest. I have had constant pain and thousands of complex symptoms of Fibromyalgia and ME/CFS for 27 years since childhood. Diagnosis took 4 years. As a teen I even had to cut off my long hair because of the pain it caused. Then I had to pull out of school. Aged 16 I was bedridden, unable to bathe or feed myself.
Throughout my 20’s I improved somewhat. But until very recently, for the past 7 years I was housebound again, and struggled to sit up even for 2 hours throughout a day. I only left the house for necessary medical appointments. Often my exhaustion, pain and fatigue were so extreme I had to lie perfectly still, stop all sensory input and consciously slow down the thoughts in my head and concentrate only on breathing to live through and calm the pain.
Unlike someone with depression, at all times I have been highly motivated and passionately wanting to ‘do’ things and to be involved. When I have energy, I use it. Unfortunately I can’t help that many times, sometimes for months or even years at a time, my motivation has been there but my physical ability to function has not. At these times I must listen to my symptoms and pace myself. During these bad health patches, ‘positive thinking’ has not made any difference to my health. I’ve just had to wait it out, resting until I somehow improved. Stretching and maintaining as much movement as possible is very important. But pushing myself to continually do more causes a dramatic worsening in my health. Bad patches can last days….or even years.
Whenever my health improves to better space, then I am ready and willing to do and achieve more, but I have no way of knowing how long a bad patch will last. Nothing I can do will ‘bring on’ a good patch. Due to my high levels of self- motivation, even in good patches I must always be careful to pace myself and not overdo it.
Often while in bed throughout the day over the past 20 years, like Jessica in the film, I have learned to escape in my mind. It was hard being bedridden at first all those years ago, but in recent years I did not feel stuck in bed in a small room. A lot of the time I was immersed in thought and my imagination and felt incredibly alive. Even bedridden, I truly believed my life was worthwhile, no matter how I was forced to live.
In the past 3 years I also had complications with two benign tumours both needing surgery. Since the second surgery a year ago, my ME has unexpectedly improved significantly, but I am still in constant pain and am still very limited by my Fibromyalgia and ME.
To give you an insight into what living with Fibromyalgia and ME is like, I’ll compare it with an experience I had with a ruptured benign liver tumour. Having the benign tumour burst in my liver was like being in a boxing match. The pain was brutal… but it was temporary and within 6 months after surgery I mostly recovered. I was able to continue with life and move on, with small scars to prove what I’d been through. With tumours, everyone recognises the struggle you go through and supports you.
Living with Fibromyalgia and ME is like being in that same boxing match but combined with a marathon that may never end. The pain’s relentless and has no guaranteed end date. You are constantly running on empty. It leaves no visible scars but sometimes that’s also hard to cope with, as you have no proof. There are no approved treatments that help everyone with ME/CFS, and there is no cure. There is comparatively little public awareness and research funding for ME/CFS. Few understand what you’re going through and support is often rare.
Living with ME day to day, decade after decade….it’s incredibly hard, and the illness desperately needs more recognition and patients deserve support. At the moment many with ME/CFS can’t get access to the services they need. This needs to change.
Doctors can help enormously by saying “I don’t know…but I believe you and I will do my best to help.” As Jen Brea said in her TED Talk, “‘I don’t know’ is a beautiful thing. ‘I don’t know’ is where discovery starts.”
To conclude, I’d like to read you a poem I wrote a year ago, ‘I Dream of Simple Things.’ It describes some simple day-to-day things I could only dream of doing while living with severe ME.
‘I DREAM OF SIMPLE THINGS’
© 2016 By Shiloh Moore
I dream of doing simple things
even chores and basic tasks
like to do things independently
and not always have to ask
I’d like to really cook
and not just have to defrost
To eat sitting up with company
and painlessly consume without cost
To have a daily shower
and shave my legs with ease
clean my teeth for two whole minutes
tame my wild hair to look less teased
To do all my own shopping
for groceries and necessities
To buy my own choice of things
and treat myself occasionally
To be able to sit up for visitors
not to have to lie down all the time
To go out for coffee or a social meal
and stay for a decent while
To create art while sitting up
with no need to lie down throughout
To have freedom to fearlessly create
without a long term pain payout
To type while I can sit up
for as long as I wish each day
To use a phone to text and talk
without dead arms, neck cramps, and strain
To walk a fair distance and stand
without instant pain and feeling faint
To exercise and feel good
to help with my Diabetes and weight
To need less than fourteen hours sleep
and to wake up feeling strong and refreshed
To feel bright and alert every day
rather than tired and needing rest
To lie down perfectly still
yet to feel no intense constant pain
is an experience I have forgotten
and can only dream of knowing again
To be able to joke and to smile
with no face pain limiting my laugh
To talk comfortably, to be truly me
is this really too much to ask?
My dreams may seem very simple
but I’ll celebrate if any come true
The truth is I appreciate all I can do
and I try not to fear losing that too
NOTE: On the days of the screenings, I sat up for the morning tea, lay down and rested throughout the movie, sat up to give my speech and the brief Q&A then immediately went home to rest. Both times this exertion led to 3 weeks of feeling like I’d been ‘hit by a truck’ and bruised all over. I could do nothing but rest for several weeks to recover. People saw me present, but they did not see me behind closed doors in recovery afterwards. This was the most active and ‘healthy’ I have been in 7 years.
© 2017 by Shiloh Moore