I was a busy person. My usual sleep pattern was five hours each night, plus a nap on the weekend. The rest of the time I was doing paid work, voluntary work, postgraduate study, raising two children and helping manage our rural property.
At the age of eighteen I had contracted Lyme. Lyme had yet to be recognised and understood, so doctors were baffled by my ill health and had no diagnostic suggestions. I was chronically unwell, but at a level I adjusted to. My very active lifestyle just required me to push through the fatigue.
Suddenly, pushing through the fatigue no longer worked.
Any form of effort left me exhausted, physically, mentally and emotionally. I dragged myself through the days, lying down at every opportunity and accomplishing only a fraction of my usual workload.
My husband left. The children and I relocated near a lifelong friend who was dealing with Chronic Fatigue Syndrome. I borrowed a book from the library to understand her CFS better. There I was! A multitude of symptoms that I had assumed were unrelated were all there in one place. There was no question about it. I had CFS, better known as myalgic encephalomyelitis or ME.
I have been fortunate. My friend had already been through many, many therapists and finally found a wonderful physician, so I was able to go directly to him for help. He tested me for Lyme and treated it successfully, which reduced my symptoms from severe to moderate. My children were old enough to be somewhat independent around the house. I was able to get a Disability Support Pension.
Picture of me out, on a very good day, accomplished by resting completely for days beforehand
and arranging to rest for days afterward
So what is a day like for someone as fortunate as I am? Pain and exhaustion are still constant companions. I am covered in bruises and scratches from my clumsiness. I measure my activity level by time out of bed: five hours total is a very good day while on a bad day a few trips to the loo are about it. While in bed, on a good day I can enjoy reading light novels and messing about online. Bad days in bed are an endurance test: pain of all kinds, in all parts of my body; inability to relax or rest, let alone sleep; mental confusion; muscle weakness.
How do I know when I am heading into a bad day? As I fill a glass with water it slips through my hands to the floor because I am too weak to hold the glass when it is weighed down by water. As I stagger up the hallway at home I realise I am falling against the wall because my balance has gone. I recognise that I am hungry but my brain is too tired to make a decision about what to eat so I stay hungry.
Life in the slow lane (the oft-photographed dog saying clearly with his eyes,
“Not another photo, surely?”)
There are indignities to ME. The constant poverty includes the inability to afford paid help, the struggle to pay for recommended nutritional supplements, the constant pressure to decide between spending on heating/cooling or on prepared microwavable meals. To watch your children miss out on things their friends take for granted is painful, whether they miss out due to lack of money, lack of parental involvement, or being unwilling to bring friends home to a house that is embarrassingly cluttered and poorly maintained. Being glared at for using a disabled parking space, because your disability is an invisible one. Getting halfway through a sentence and not being able to find the words to continue. Stumbling in public, as though drunk. Friends who think you are rejecting them because you simply cannot accept their invitations.
ME destroys careers, tears families apart, shortens lives, and holds people hostage to a painful chronic illness that has no recognised treatment and few knowledgeable doctors. I dream of treatments. I have no expectation of an imminent “cure” but great hopes that current research will point the way to reducing the symptoms and allowing those of us in the ME community to increase the scope of our daily lives.
Next time you see an appeal for ME, whether it is seeking a small donation toward research or asking for your written endorsement for improved services for the more severely ill, please remember my story. As I said, I am one of the more fortunate. So many are far sicker, have less support from their doctors, and have far less assistance at home. They need all the help we can give them.
by Penelope McMillen