I want my life!
Not a good day today crying quite alot, started after a friend called to talk about setting up a rooster of people who would take it in turns to come round to visit me and to take me out so that I do not become too isolated.
Was quite upbeat on the phone but the moment I put the phone down I also put down something else as tears seemed to erupt right away. Sobbing my heart out, tears flowing down my face getting very wet and desperate. Heard myself wailing I can't take this anymore, don't want to be here anymore. Then realised what I was saying and cried even more at the thought of not being here anymore.
Not being here with my darling whom I love so very much. Don't want to be without my darling. Don’t want him to be without me either. But don't want this anymore this day in day out dead-end existence where I can do nothing but sit here in a chair and feel pain and discomfort and never ending exhaustion.
With the only excitement being will I be able to get out of the chair and transfer successfully on to the toilet or will it go badly wrong. My spastic spring-loaded legs could catapult me into the boiler or up against the wall behind the toilet. Anything is possible as I try to stand by placing my feet carefully on the ground then fold back the foot rests and swing them out from the chair. Then I place the phone, which is always with me on a ledge by the toilet in case I have an accident or something else happens when I am moving around in the chair. This time it goes ok I am only slightly banged up against the wall as the force from my spasticity tries to control my movements and direction. Just in time I manage to counter balance the force and allow myself to fall gently on to the toilet seat. all i need to do now is get up again.
Just feel drained and tired all day and all night with no let up, and no reprieve, and no early release for good behaviour. No end to this situation or just one I don't really want as then I am not around anymore. Not here anymore means curtains for my life. The final curtain call that I was hoping would not happen for a long time after many many more years happy with my love. Thought we would get old together was so looking forward to that. Love our life together our love, our laughter and enjoyment. Never wanted it to end.
The really bad thing about having something like ms is the fact no one can really do anything for you. You have got it and that’s it no one can make it better, take away the symptoms cure you they can't do anything. And that is very scary as we are all brought up to believe everything can be sorted out, problems are elimnated, bad health cured, pain relieved. The doctor will make it better. But here we are with an illness where no one knows how to make it better. It’s the blind leading the blind in the hope they will finally understand exactly how it’s caused. At the moment the medical profession are having a horrible time too. Imagine we all begin to cotton on to the fact that medicine is just trial and error and not an exact science. Blimey we might not have such overwhelming faith in the doctors supernatural abilities to cure us, to wave the magic stethoscope and the mighty scalpel and cut the bad things out of and sew us all back to fine glowing health.
2 comments:
wow. thank you so much for your honesty. i was thinking last night that while i have a lot fo respect for people like elizabeth edwards who share their journeys with cancer, etc., i wish they would share a little bit of their anguish, rage, sadness, etc. with us, and not just the smiling strong face. it is so very important for us to allow the anger and pain to be there, and to express them, in order to be whole. so thank you for sharing your whole self. i will check in often.
I live in Holland too, but I am from Spain. I see how corageous you are in expressing every thing with honesty; be it rage, disappointment, frustration...
Let me thank you for that. The opposit would be the infamous "possitive thinking"...
Post a Comment