I have extensively researched the origin of this syndrome and it appears that there are some opinions by medical experts but no real definative explanation as to how, where, why or when. So I am left to fill in the blanks based on cirmcumstance. I have had to dig deep for this, going back into the mental archives, some of which seem to now be lost. Another side effect of the syndrome is memory loss, both short term and in some cases, event loss or familiar person, place or things that once were very much a part of your life. I have recently endured this issue with people that start talking to me and based on my blank look, they realize that I have no idea who they are and they begin to tell me that we've known each other the past 6 to 8 years yet I have not one single memory of them whatsoever, not even facial recognition. This is a scary reality for someone with OCD tendency that also had the ability to recall not only verbatim conversations from whenever/whereever, but could also describe right down to the clothing everyone was wearing the day of the conversation. Its like being someone entirely different but the only problem is, you are the only one who doesnt get it. I just dont see these people as anyone I once knew so they are strangers, but after they give details of the past, I feel bad that I still dont know them or recognize them. How would you like to have the entire memory of your childs birth erased from your memory? The only evidence I have of my youngest daughters birth is a tremendous amount of pictures taken that tell the story to where I can almost trick my mind to believe I remember every single moment. My sons birth, 2004, I have detailed memory but have lost the crucial information such as birth weight, length and time. Other than that, all else seems to be in order.
So I see the most common remark in regards to possibility is trauma to the nerves and or neck/spine area. Well I could easily contribute numerous events that could have happened as a child from infant on up. I managed a fall from my play pen at 6 months which was always the talk of every family function for years. How I constructed items in a ladder form and pulled myself up and over, landing on my head. I am not sure if the time line is accurate based on everyones account of the situation, not doubting I achieved this, just doubting at 6 months this was possible. I have raised two children now passed the 6 month mark and I dont think either one of them could achieve falling off a throw rug onto tile never mind climbing out of a play pen. Yes I was a determined little soul but not an up and coming super hero.
I have childhood memories of multiple falls down stairs. I still to this day have an uneasy feeling as I come to the top of a staircase preparing to go down. If I stand long enough there, I can actually create a dizzy spell and I distinctly remember on one occassion as a child, having that exact situation happen and I still attempted to walk down, this led to a substancial fall down multiple stairs to the landing below. The homes built in the late 20's were real wood and they hadnt heard of a product called "padding" used under the stair carpet so falling down head over heals was a memorable and painful experience. This could easily have been the beginning of where all of this started, I might have inadvertently damaged a nerve cluster which with the days medical equipment available, late 70's technology, it would have been overlooked anyway had I been taken to the hospital. The mentality in those days basically led to a few questions that if successfully answered, you were told to walk it off. A trip to the ER was almost taboo and if the neighbors heard about it, I guess it was a huge deal. Not the case today. Kids take a substantial fall, right to the ER for the necessary tests to assure they are ok. No guess work for me when it comes to my kids!!
The secondary part of my findings is the presence of JHS (Joint Hypermobility Syndrome). This is also known as "double joints" which as a kid, was more of a showcase to entertain and disgust people that would watch me bend my arms, legs or fingers in abnormal directions. My grandmother had often talked about the first time my shoulder dislocated and that it became more frequent, well of course as time went on, by the end of first grade, I was able to dislocate my right shoulder almost on command. Another add on to my shocking display of oddities and side show. We were told in gym to bend over and touch our toes which I decided to take to that next level, I calmly put my palms flat on the mat while bent over as some of the kids struggled just to tough their ankles. For added fun I lifted all my fingers off the mat leaving just the base of my palms on the mat which over extended my wrists. This would always draw attention to me and many times the teacher would demand I stand right up and not participate just for fear I would hurt something. The fact that I could reach behind my back, with my head perfectly straight, and creap my hand up until I was touching the back of my head was also a show stopper. I would do this with both arms and kids would take turns forcing my arms as far as they would go to see if they could cause me pain, this never happened. Again, back then all for show and tell, now with research, its become an eye opening learning experience of how this may relate to my Dysautonomia.
Its amazing how you take things that seem so trivial in your life and given the right direction, they now become essential in completing the reason why you are where you are today. As an adult now, I still have more than normal joint extension, it was brought to my attention at PT (Physical Therapy) but I lack the flexible muscle response I had as a child that allowed me the ability to move without pain. Now the over extensions cause me extensive discomfort and pain, with a very audible "cracking/popping" noise that is disturbing to anyone close by that hears it. The comment "Sucks to get old" is the under statement of the year but its not properly presented. "Sucks getting old with medical issues that cripple you". Thats what truly is the problem with gettting old. If someone had told me at 44 I'd be fighting my body for survival and find myself unable to leave the house at times due to lack of energy or just such extreme discomfort that walking was not an option, I would have laughed in their face. I'm not laughing anymore, this is the real deal and when every step feels like someone is sticking needles between your toes with extreme force, while your struggling for balance, fighting nausea from the spins and dealing with daily chest pains, this reality isnt going to take a break and leave me alone. This is a fight to the death I am afraid, but I am going to do it with as much a positive outlook as I can and try very hard to help others get early detection so that they can prevent it from becoming progressive like mine. I am also involved with St. Judes Childrens Hospital, Partners in Hope. This is something near and dear to me. Once I am financially stable again, I also have interest in Project LadyBug and Tomorrows Childrens Fund. Unlike St. Judes which is based in TN, the other two are NJ based charities which I always like to keep my roots back home in NJ. Will keep you posted when I expand to the other two charities. Again, thanks for reading.
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