Well, well, well.. I have not posted in a YEAR, how shamefully absent of me. Hilariously I'm in the same state as a year ago, struggling with the impending cold, in more pain and discomfort because of it.. still on my never ending diagnostic journey, still struggling to stay alive on what help I can get. I am further down the road of my diagnostic journey, finally having met the top Prof in the country and been, mercifully, taken very seriously by him. The wheels are finally starting to creak forwards alittle faster so I feel alittle more hopeful (ontop of shit-scared!) of getting some serious answers soon as to what in the holy hell is happening inside this jail cell, sorry, body of mine.
In other news, the silver ring splints film, looked forward to by you all with such epic patience I'm sure, is complete! Apart from my severe discomfort at hearing my own voice (especially in the earlier clips, the neurological problems are more apparent specifically the slur in my voice, as I was particularly ill that day) I'm very pleased with how it turned out, and how it will hopefully spread awareness of Ehlers-Danlos and of the availability of these amazing splints that can change a life.
http://vimeo.com/51048645
As for my own self, I'm coping quite well, working out alot (or as much as my health allows) and getting out as much as possible.. but at the same time I am always in so much pain and so, so, so very tired. People think they know what Fatigue is like and they havnt the slightest idea. Alot of the problem is actually enjoying myself once I get where I'm going, not so much the getting there, as might seem the first obvious hurdle. Pain and fatgiue bleed the joy out of even simple 'easy' activities, even sitting in a chair for more than afew moments or being somewhere abit busy and mildly shovey mean I am completely unable to enjoy myself and often don't stick around. Most of the times I'm having a "nice time" I'm fully faking that I'm ok to please everybody else and avoid any unpleasant attention, as even subtly feeling that anything is 'my fault' makes me feel like dogdirt I avoid even mild confrontation or making a problem of myself in any way, if at all possible. So, in the end, what happens is is that I cancel, I make an excuse, I avoid. Because the majority of people I meet have no conception whatsoever of what I'm going through, this behaviour alone results in me quickly being off the invite list for future occasions. It breaks my heart to think about all the chronically sick people out there in the same boat as me. I'm smart, sociable, friendly, generous.. and here I sit with few friends and even less plans to go out, simply for the lack of awareness or empathy in the average person's mind. Simply for the lack of people willing to listen or to imagine. I feel so grateful for the friends and family I have who DO listen, and imagine, and learn about Ehlers-Danlos, and pain, and spinal and neurological and nervous system disorders, without them there would be little meaning for me to hold onto as I struggle onwards, my time and thoughts dominated by medical appointments and all the other admin of being a sickie.
xoxoxox
