this morning when i woke up i had a headache and felt tired and wobbly, the pains that are a permanent part of my life greeted me as i moved, like fireworks going off and spreading heat through out my back and legs in burning spirals of white hot pain. my mouth feels like i have been on a binge last night but i know that i had none of the fun.
it takes me a while to wash a dress and then i get to glide down the stairs on my stair lift as i cant afford to waste my precious energy on trying to walk them. i take my time getting my breakfast, plan my activities for the day, the first pills of the day are taken its like a handful of multi colored sweets except that they taste
horrible. thats the first 12 of 32 i take daily!
i put the ingredients in the bread maker, and find what we are going to have for tea out of the freezer. this leaves me breathless and dizzy i have to rest, i put my feet up and look out the window watching the birds on the feeder. after 20 mins i start to feel more normal.
i then go back to the kitchen and start to prepare the evening meal i sit on the perch stool and chop veg a job that used to take me 10 mins at most now take me half an hour.with dinner prepared i now go back and sit down i turn on my computer and spend some time chatting online to other m.e sufferers. i watch the birds out the window and talk to google i take another 6 pills with mylunch . i lay down for a bit as i start to feel worse and what little energy i have is disappearing quickly, i sleep, the day disappears, and all of a sudden my hubby is up and its time to cook tea,
i eat with the family and take a futher 8 pills, then go to bed as i no longer have the energy to support my body although my brain still works i chat on my computer laid on my back with google laid next to me. at 10 pm i take the last 6 pills and hope that i will sleep the night through. but as normal i wake each time i move i moan and swear in my sleep as i grimace in pain, this is just an average day not a bad day.
how do i explain how i feel imagine having ran up a mountain, with lead weights on you legs and arms, having a tummy bug that turns your insides to water, the worst hangover you have ever had and you have got flue and a migraine all at the same time then add in the fear of not being able to control whats happening to you, the loneliness and sadness as everything you know and have worked for that you think defines you disappears, and know that you might never get any better!
my days though are not full of anguish they are full of light and hope as i feel pride in the small things i achieve, i am not lonely as i am never alone, but i do get frightened about what my illness is doing to my family. i see my pain in my husbands eyes, and the worry for the future im my children faces, i see fear in my parents faces as they wonder and worry about what is happening and what they can do.
i see confusion and lack of understanding in the eyes of my doctors, and here frustration in the voices of fellow sufferers that like me cant explain and dont understand why no one can help us