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.
Sunday, May 20, 2012
Oh boy have I been judged, yet it’s a knee-jerk reaction from a lot of people. All I can say is that you are not in my position having to face the same decisions. I have someone here close to me, we used to be lovers and we used to speak of the future, finding an apartment together and of living a life together. That is all gone into the melting pot of life but out of that fire and passion I have gained a best friend who loves me unconditionally. She knows my fears my worries and regrets and she knows what is going on in my head. Strangely enough we had a conversation yesterday about my choice. I mentioned that I was trying to keep my promise to keep fighting the battle for her and other people in my life. Chrystelle looked at me with her deep eyes and told me to stop, she told me it’s a promise that I can’t keep and that I should be doing things for myself not for anyone else. She told me that it pains her to see me suffering just to make other people happy and that I should be making myself happy. I had to do a turnaround and try and look at myself through her eyes and you know what I didn’t like what I was seeing and I can only imagine the pain I have caused her. I know that I’m causing other people pain but they don’t see me as I am now and some of them just have their heads in the sand. I realise there will be some people left to pick up the pieces and I am really sorry about that but all your comments about waiting for different dates for different reasons don’t do you justice and show me that you just don’t understand. You have no comprehension as to what this disease is doing to me or how it is affecting me, you haven’t seen me in years but although you know me you don’t listen to me. You care to remember me as I was, not as I am now and you make a judgement call on that premise. I have had many a discussion here with people I interact with daily, I’ve had many discussions via Skype with people affected with ms and who are in the same boat as I am. I have an American beauty and a South African beauty who think as I do and who also want the same option and control of their lives. There are some people that I haven’t discussed this with which is also causing aggravation as I’m expected for various reasons to make my intentions clear and to discuss my actions. All I can say is that this is my life that I have to live and that this is my choice to at least keep some form of dignity. So please allow me to make my own decisions based on the way I live my life not on the way you would like me to live it. I’m not about to discuss my daily life, it’s humiliating enough already living it and I’m not about to humiliate myself even more by putting it down on paper for all and sundry to see. There are many people who know me and who are supporting me and my decision even though it is causing heartache. I thank each and every one of you for your understanding. To Atheana and Sandy, yes I named you, you are two exceptional friends and I love you both dearly. Pour Chrystelle, tu es le seul vrai amour de ma vie. Merci comme tu es, Je t'aime pour toujours et après.