Here is a piece I wrote a couple of weeks ago, before I started the blog. As it is quite similar to the earlier post from today I thought I would just show how often frustration appears in the life of an ME patient. But we are not alone, we all feel the same and we can get through...
Oh, where am I? I'm really not sure. Maybe I'm procrastinating thanks to the weather. Maybe I am constantly getting used to having a bit more energy, then a bit more energy, then a bit more energy. So each day is confusing and I am readjusting my barometer of health.
Yes I'm not sure where I am. I am ill. I have ME. I have a neurological illness. I have seizures, I have sleepless nights, I have 'wakeless' days. The daft thing is that almost everyone who champions for those with ME, seems to believe that if you recover from ME that you can't have had ME in the first place. Where does that come from? Is it not a good thing to have recovery? Is it so bad to find a light on the horizon and search for it, believing it can be reached? Those who recover from cancer are seen to be heroes who battled through and fought the good fight, not some fraud who imagined their tumour or weakened immune system. Somedays I am so motivated, I find a calm quiet place to have an active peaceful day. Other days I find a sleepless night leads me into a hyper, crazy day where nothing is achieved and another day seems wasted on the road to recovery.
We are all desperate to find a relief, we almost beg to be better. Those of us who are ill with ME describe our lives as a constant search for the answer, like the mice who created the earth, only to have it destroyed two minutes before the answer was uttered from a small girl's lips.(Douglas Adam's Hitch Hiker's Guide) When I find an answer it is torn from my fingertips. "you can never recover, if you do, you can't have been ill in the first place-it was all in your head!"
I must give this new way of life 6 months. I must follow the plan and choose a different way of living. I have been following this new path, this new hypothesis and recovery programme for 7 weeks, I am just the good old sceptical me who says, "oh, you've recovered before, but you'll only get so far." I must fight her, remove her from my friends on FaceBook and follow the friend who says "give it a try, what's another 6 months in 24 years?" I know she is right. Even if it only gives me a path to follow, how far I manage along that path has yet to be determined and giving up now means that I will never reach that light on the horizon; I must give myself the chance to reach that light and keep walking with my head held high.
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