Kerry Stephenson is editor of the New South Wales, Australia Wollongong ME/CFS/FM Support Group Newsletter.
Do onions make you cry? Have you ever peeled back the layers one by one?
That’s what my life with ME/CFS/FM (Myalgic Encephalopathy/Chronic Fatigue Syndrome/Fibromyalgia) has been like; gradually losing layer by layer of my once active, social, independent life until I hit the centre/rock bottom. Got right back to the basic routine of sleeping/eating/bathroom and was like a baby needing 24/7 care because I was too weak to move, talk, or do anything other than keep breathing.
Now, after being bed-bound for nearly eight years, I am glad to be gradually adding the layers back onto my life.
Every day is a process of “pacing” and balancing the energy “debit/credit” – for example, once the nurse gives me a shower on shower days, will I still have the energy to sit up and check my e-mails later on?
Do too much, and I lose a layer again, so it’s a slow process. But one day I hope to have my “whole onion” back. Different than before ME/CFS/FM, but perhaps better because of it, as I now appreciate things that most people take for granted.
Little things to others are a big deal to me, and I have had to re-learn a lot of skills, like cleaning my own teeth, being able to hold a pen and write, talking, using the computer, e-mailing friends around the world, sitting up, standing up and walking.
I can now get from room to room without help, in the late afternoon/evening when I have my “window” of energy. It’s been a long journey but the love and support given from family and friends have been invaluable sources of strength.
So if your life with ME/CFS/FM feels like the layers of an onion too, keep positive and take heart from the fact that there are many others around the world like you. Remember what Confucius said: “A journey of a thousand miles begins with a single step.” – May 2005, Age 29
And indeed, fast forward to November 2006, when Kerry wrote:
My Mum’s had ME/CFS/FM for over 20 years and I was diagnosed 10 years ago. I was bed-bound for most of that time. But these days I can walk inside the house myself and type this e-mail to you and do so much more, which is amazing. I have been the Editor of our Newsletter (www.cfswollongong.org) since we started in November 2003. We send it out via e-mail and post every four months. Mum and Dad are the Coordinators of our Support Group.