there are days like monday when i wonder if existing is living, i could not manage to sit or stand up as every time i did, my head felt like it would explode with the pain, i felt sick and dizzy, and to top it off a feeling of being completely drained of all energy.
yes i did feel sorry for myself, and no this did not help, but i suppose you need to put it into context. i have now been chronically ill for 3 years with no sign of recovery. i have deteriorated steadily from the initial onset and now am classified as severe as i am at about 10-15% on the ability scale.
3 years ago i had a full time job, a social life, i was studying at uni part time to complete my degree, my life seemed set i knew where i was going, i had plans!!!
all of that was taken away by the m.e and the fibromyalgia. but its not only my life that has had to change so had my family's,and friends though i have to say i have very few pre m.e friends left as a side effect of becoming chronically ill is dropping off the social circuit as you become unable to participate.
so the question is, is living the same as having a life?
now each day is much the same, dominated by pain and a myriad of complex symptoms causing unremitting and excruciating fatigue. the only change that i have is the fluctuation between which symptoms are taking the front seat on which day.
i now have to choose between physical health(well trying not to become worse!) or my mental health which is screaming for activity and social interaction.and the knowledge that to do something to help keep me sane will only cause a downturn in my physical health and i will be punished for the fun i have.
not only now do i have to deal with being ill but the realization that i now need help and the independence that i so cherished now is a distant memory, in some ways im lucky as social services have put that help into place to support me as best as possible so that some of the strain can be lifted off of my family. but being 42 and having a carer does not seem right, its some thing the old and disable have then i remember that im disabled, i cant not work, walk, clean my home, cook a meal. drive,shop go out with out help and on bad days personal hygiene becomes a challenge.
so yes im living i exist but who would choose my life!!