I was hospitalised a number of times and somehow simply never recovered. 9 Nightmarish years of searching for answers followed. I went to neurologists, rheumatologists, cardiologists, physicians, endocrinologists, psychiatrists, dieticians, homeopaths, naturopaths…too many to count. Time and again I came up against disbelief and even ridicule.
Only in 1988 did I finally see a neurologist who knew about ME and was able to diagnose me. Unfortunately I was very, very ill by then. Those 9 ‘lost’ years contributed much to the severity of my ME.
ME has now been part of my life for 37 years. I am 53 and totally housebound. I spend roughly 90% of my day on my bed. I live with never-ending, totally debilitating exhaustion, frightening problems with my brain function, sensory overload because of hypersensitivity to sound, muscle and joint pain, constant and severe burning, neuropathic pain throughout my body and a host of other symptoms.
There are no ‘good’ days or periods of remission, no relief, never a sense of ‘wellbeing’ in my body.
Most of what others take for granted have either never been part of my life or have slowly disappeared over time.
I miss…having a career, traveling, driving, shopping, going for a walk on the beach, watching television or a movie, reading a book, going out for coffee, going to church, enjoying a meal with family or friends, going on holiday, visits and telephone calls with friends, playing my guitar, the cooking and baking I loved, the needlepoint and sewing I enjoyed doing, playing tennis, swimming, running…there seems to be no end to the things this disease decimates.
On most days I am unable to get dressed, because my pain levels are too high and dressing requires strength I no longer have. As a result of my limitations, social contact has become almost non-existent.
Severe ME just has this way of stripping your life to the bone…
My laptop is on a hospital trolley, which fits over my bed. For the most part, this has become my means of contact with the outside world, my means of communication…but over time using my laptop has become yet another monumental challenge, because of the severity of the exhaustion and the worsening cognitive difficulties.
The financial repercussions of this illness have been devastating. I have never been able to study or work formally. I still live with my parents who are now in their eighties and have been my caregivers since 1979.
Yet, even though this journey has been harder than I can ever express in words, I have encountered precious and enriching gifts hidden along the way. I have been given the opportunity to learn more about dependence on God, faith, grace, hope, courage, love, joy, patience, and perseverance than many others get to learn in a lifetime. I am thankful that I have been given ways to use my pain and struggles to encourage others who are also facing challenges.
And I am thankful that, because of my faith in Christ, my life can be filled with hope and meaning…no matter what a day with ME brings.