Sunday, May 27, 2012


This disease is stripping me of my pride, replacing it with embarrassment and giving me bucket loads of humiliation. My independence is being seriously eroded and I am now having to rely on help from others. It is one thing not being able to hold a knife and fork properly and struggling to feed oneself in the manner that you were brought up in. I am now resorting to using a fork like a shovel and although it takes a good deal longer to eat I still retain that bit of independence towards feeding myself. It is totally another thing when it comes to bodily functions and the need to use the toilet. Getting to the toilet is easy, pushbutton and Bob’s your Aunty and the wheelchair is at the toilet but of late standing up has become a problem or standing happens but turning doesn’t and then we have a problem. I push the button for help and stand there eyes closed, waiting for help whilst embarrassment enters my life. Help arrives and humiliation pours all over me as I have to suffer the indignation of being cleaned. Anger at myself and at my disease threatens to well over And at least on one occasion has done so making my words and manner aggressive. This is just not me, this monster inside me is now changing my behaviour and to me that is not acceptable. Ever since I was diagnosed I have fought to keep my temper in check, just another battle on another front but there is now a crack in that wall too. How much more damage will this disease do not just to me but to those around me? It doesn’t matter how much you apologise, the damage is already done. So, pride is shoved deep down in my pocket, embarrassment is a badge that I try to keep covered and humiliation is definitely a T-shirt that I don’t want but have. Been there, didn’t want to do it.


  1. Its normal to feel that way, and trust me, those that are caring for you, do so because they want to, and love to! Im so sorry you have to experience this though, its just not fair! But remember, in ways unimaginable you continue to touch lives around you. Love you Uncle Shawn xxx LL