Day 19 of 30 days of MSA awareness After a few years of having MSA it seems friends and even family are getting kinda sick and tired of the same old illness same old complaints. Friends have stayed away already for a few years mostly when my energy and cash flow were too low to socialize as people in their fortes and fifties when healthy do. I stopped getting invitations. I am sure in their minds they are sparing me embarrassment, but they are alienating me. Perhaps it is easier for them to have me fade out of their lives so when I die the feeling of loss is minimal. Truthfully it is a hard balancing act, because I do tire very easily and am worthless before noon and after six, which doesnt leave much. I have to watch what I eat, mostly I try not to in public because I dribble and drop things. In conversation I take a few seconds to register what has been said and another few seconds to form and answer so by the time it is about to come out of my mouth either someone has answered for me or they have simply moved on and ignore me. Most people still dont really know what I have. They think it is MS, I correct them and they say but it is like MS, right. Because it involves my brain they talk a little more slowly to me and the tone is a little more patronizing than I think is respectful. What bothers me probably more than anything is when people tell me, but you look fine. I have just told them I have a progressive and terminal disease with no treatment or cure and they tell me but you look fine. In their minds it may be a compliment but to me it says I am not bothering to understand what you are going through because to me you look fine. Between the spasms and the inability for may facial muscles to work as well as they used to I have now a semi permanent expression on my face. In PD it is often referred to as a mask, in PD, from what I have heard and read it is most often a grimace. In some respects I was lucky, my mask is not a grimace is is a very friendly smile, no matter what sadness, anger or deep sorrow I might be feeling I am smiling. I forget about it often and then notice people ar always smiling back at me, in a country where most people avoid eye contact, but when I catch my reflection in a window I know they are reacting to my mask. I suppose it is better than a grimace at least this way no one thinks you are and angry sourpuss, but a big smile is not alwys appropriate either. On top of that when you have such a happy face how are they to think you are having a hard day? Does it affect how seriously doctors take my complaints (how bad can it be shes smiling.) I read somewhere a long time ago that smiling has an affect on your immune system, but is this concoction of spasms and lameness really a smile? I remember my daughters wedding day, my sister had done much of the work as I really couldnt, and my mom pitched in, it was without a doubt one of the loveliest wedding, held in my sisters garden. My X and I were to walk her down the aisle together. Just before that I was going to the bathroom,because I did not want any embarrassing accidents, not on this of all days. In the bathroom my sister and her friend were putting in last minute touches, guest soaps and the like. I told my sister I needed the bathroom, her friend said, cant you wait and got up quickly. People with MSA dont process at normal speed and I could not get out of her way as fast as she expected me too and I fell ass over teakettle into the friend knocking both of us into the bathtub (lucky for her this was when I weighed about 110. My sister has a laugh, so did I later. Walking down the aisle it was my daughter holding me up, but one of the proudest moments of my life. I cannot tell you how many times that day I was told you look fine. In my purse I still carry a card prepared by our local Ataxia association, on one side it has the name and contact information for the association president, on the other it says I am not drunk I have Ataxia. We got together and decided we needed one for all those times we were mistaken for being drunk because of speech and gait problems. MSA is very much a personal disease it is not the same for any two individuals it progresses very unevenly and one day is never like another. I lose and gain abilities, one day I can type without too much of a problem and the next it takes me hours to type one paragraph, or finally give up in utter frustration.The only part of my day that is the same is that first second when I wake up, before all the senses report into the brain, that second of feeling OK, even normal, but then you move or take a deep breath and you hurt and choke, some days Ive found bits of broken teeth in my mouth. Then getting up and finding my body, with my eyes closed I could not tell you where my feet and hands are, the best way for me to start moving is to visually asses where everything is. these days I always look at my hands and feet when I move them otherwise they get it all wrong, and there will be trip, knock something over. Seriously we put in so much effort to remain somewhat normal, but no-one ever appreciates just how much effort goes into it, or how truly awful and sad it all feels. Over the years having come to know others with MSA I can spot the pain and sorrow of constant loss in their eyes. None of us know what we will lose next, while we still grieve for who we were yesterday and last year. I miss dancing, I miss driving, I miss really tasting foods not just reliving by memories, I miss feeling my feet and not having to look at them to walk. I miss feeling the rain on my head, I miss trusting what my brain tells me, am I really wet or am I just getting poor information from my stupid brain. I imagine we all have different breaking points but I have come close a few times to wanting to just stay in bed, keep as much physical comfort as possible and stop fighting. One day at a time, just soldiering on. -- More: https://facebook/notes/aletta-mes/30-days-of-msa-awareness/10152235479847179?comment_id=30638543&offset=0&total_comments=18&ref=notif¬if_t=note_comment
Posted on: Thu, 20 Mar 2014 09:05:50 +0000
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