After 10 years of misdiagnoses, mistreatments, harmful therapies and (to this day) not being able to get the help that is needed to keep me from getting even more sick, the word needs to spread about M.E. It's a dibilitating, incapacitating illness. And it is not in our heads. We would give anything and everything to not have to go out in a wheelchair or be dependant on others to care for us or our kids. For that reason most of us have made ourselves worse, much worse. Listening to doctors and therapists who 'knew' what we needed. Sadly they don't because they don't recognize it or/and think it's between our ears.
M.E. has taken over my life, my body, my family, my relationships but it will never get my spirit. Although there are moments of utter sadness for the losses I have suffered, I will not let it break my soul.
Losing the control over my life, my body and saying goodbye to whatever I may have wanted to do with it, is far more difficult than dealing with my incapable body. Luckily I'm an optimist and I have a lot to be thankful for and enjoy. Like having a chat with my daughter, painting my nails and petting my cats.
We need to inform as many people as we can to make sure there is an M.E. patient in the future who will be diagnosed before they are bedbound for years to come. And maybe even have a treatment!
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