A lot of people have called me brave but I do not accept this word about myself. Certainly when I was he’s,thy I considered myself to be a terribly over anxious worrier who wfrightened of lots of things: waspz heights driving on motor ways authority figures who shouted swimming in the sea……the list could go on and on! Having this horrible illness has brought out all my morbid fears of suffocating or choking and of course dying itself something I also thought a lot about when I was well. What a ridiculous waste of energy! I should have beeb savouring each day eating peanut n butter and banana sandwiches every day and thinking about all the things I wasn’t afraid of-
i cry everaa day about being ip ill I am consumed with jealousy by a all healthy friends. And I don’t want to tell the world how much I am. Still loving life because I don’t.
I m not brave I m just trying. To stay alive though some times I honestly wonder what for.
My life is now spent in my special riser recliner chair specially designed for disabled people because she switch lifts the chair up so that your carer caa. Help you to stand . Yes and I am fee loo feeble I need someone with me all day and she is with me 10 hours a day -12 hours in the chair a apart from exciting excursions to the kitchen to. Have the mucus suctioned out of my mouth a d medication and liquid flood put into my peg. This tiny world is the one I exist in and will be until at some point in the next few months i pop off. And I hate it. Mum talked ba out patients turning their backs to the wall but in my case I can’t even turn over Without help.
i spend a lot of time n my head remembering the person I once was who could drive, swim run talk and look after hersel. When I sit in the kitchen bbeeing washed a d dressed I think of all the tiimes I dashed about in the mornings before heading off for school and I would give anything to go back in time just for one day and be a normal healthy person again.