living with ME

It was a beautiful sunny Spring day in Melbourne. Mum, Nanna and I were heading out to a local cafe for lunch. We pulled into a parking space and proceeded to make our way from the car-park to the cafe. Nanna was walking painstakingly slow with the aid of a crutch as at 80 years old the bones in her feet were beginning to collapse due to her arthritis. Mum was walking slowly on that day too. Not because she didn't have the energy. No, she walked slowly to walk alongside. Nanna was already at the top of the ramp. And Mum, she walked slowly alongside me. It was a beautiful sunny Spring day in 2010 and I was 24 years old.

A few months earlier in that year I was diagnosed with the chronic illness Myalgic Encephalomyelitis. Or in layman's terms, Chronic Fatigue Syndrome. It is known by many other names, some of which downplay the severity of the condition, so I will refer to it as ME/CFS. The hardest part of being diagnosed with this illness was not sitting in the doctor's office having confirmed what I already knew - I was sick with ME/CFS. The hardest part was having to tell everyone else! So please know that this is not an easy thing for me to make public. For with the very words "chronic fatigue..." (and if you listen long enough) "...syndrome", comes a world of misunderstanding.

Though chronic fatigue may be the central symptom of this condition, it's not just that I am chronically fatigued. Fatigue can be a symptom of many different illnesses and at some point is experienced by all people. In fact, this illness stands apart from others in that there is no known cause and no known cure. Recovery and treatment is based on managing your symptoms and improving your quality of life. It's an illness that requires you to be kind to yourself in order for it to be kind to you. So, I hear you all asking, what is ME/CFS?

ME/CFS Australia (Victoria) defines this illness as "a severe, complex, acquired illness with numerous symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems". Symptoms include overwhelming fatigue and post-exertional malaise from any physical, cognitive or emotional exertion. Sufferers also experience dysfunctional sleep, muscle and joint pain, swollen lymph nodes, recurrent flu-like symptoms, headaches, problems with memory and concentration, sensitivity to light, touch and sound, chemical sensitivities, as well as numerous other problems, such as digestive disturbances, allergies, anxiety, dizziness, nausea, and so the list goes on. These symptoms must persist for at least six months before you can be diagnosed, and the diagnosis is by exclusion, which means you must rule out every other thinkable condition with tests, tests and more tests. Suffice to say, by the time you are diagnosed you may think you are crazy just like everyone else does! 

It is difficult to understand the impact this illness has on someone unless you live with it or you live very close to it. I'll discuss more in future posts the changes I've made in my life to set myself on a path to recovery, but for now, could you just sit with this? It's a life changing illness. Think back to the sickest you have ever been, and now imagine that you feel this way every single day with no relief. There are many hard things in life, and no one has it easy, but to feel old when you are young because of an illness you did not choose, is to say goodbye to the life you thought that you would live... and to start again. 

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." (Jeremiah 29:11). Maybe I didn't choose to live with ME/CFS, but I know that God has brought about healing in my life in a way that could not have happened if it hadn't have been for that diagnosis. And though I am not completely recovered, there is now hope in my heart, and maybe that is more valuable than being able to walk faster than an 80 year old woman with arthritic feet.