I never wanted to be one of those people who simply “exist”, those who just go through the motions of life without actually living. Experiencing adventure, trying new things, helping those who need it, are important to me. The thing is, with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), you’re permanently exhausted along with a myriad of disabling physical and mental symptoms that I prefer not to bore you with. If you have ever seen a video of a sloth moving, it gives a pretty good indication of how it feels. ME/CFS is an invisible illness, which can often lead to backlash or unsolicited advice from those who don’t understand. On top of that we often hide our symptoms in the company of family or friends, in a fear of being a “downer” or mistaken for “attention-seeking”.
Having ME/CFS and trying to live some semblance of a life can be frustrating at times. These “expectations” I have of what my life “could be if I wasn’t chronically ill” keep popping up in my head on a regular basis. Ambitious, yet utterly exhausted. When I catch myself thinking like this, I feel silly. I have so many things to be thankful for. I am surrounded by amazing people in my life, I have beautiful loving pets, I am blessed with wonderful nieces and an adorable nephew – all who I now get to spend more time with. On most days, I am able to either blog, paint or read. When I balance my time out, I am able to meet up for coffee with close friends, go on a short day trip to the beach, country or city.
I am living. Gratitude is so important. It has the power to form hope; a driving force to keep going; to just keep trying. Balance is so imperative, though difficult to achieve with such an unpredictable illness. The main thing is to remember that I do make the most of my time when I can.