I guess I have quite a lot to say about this video. This video was when I was on a psychiatric ward for Anorexia Nervosa. This is also the time when what I now know to be my Oesophageal Motility Disorder started. I was being sick after eating and was accused of purging although I genuinely wasnt, so eventually I stopped eating and drinking all together because of the pain it was causing me to do so. I was restrained by 12 people one of the times to have the NG Tube inserted, I wasnt sure whether I wanted the NG Tube or not because I battling with anorexic thoughts, my physical health and what I knew wasnt quite right. When I eventually fought past the anorexic thoughts I ASKED the ward manager to arrange nasogastric tube feeding for me because I managed it better on a previous ward I was on whilst critically ill due to being underweight and malnourished. The battle between what I knew in my head (that something wasnt quite right and did need to be done) and the anorexic thoughts telling me I shouldnt be eating I dont deserve it etc, it was entirely overwhelming. One day Id be screaming whenever they tried to put my feed through, another day Id accept it, it was a big circle that just went round and round until eventually the consultant believed that it was all fabricated, that I was eliciting care and on my 18th birthday I was diagnosed with Borderline Personality Disorder. This diagnosis cannot be removed and had essentially ruined a lot of my physical health treatment up until last year when I finally put my foot down, went into my GP arms loaded with information on Ehlers-Danlos Syndrome and said this is what Ive got, I need the referrals. It all made sense, I was sent for testing and eventually it was all confirmed as Kyphoscoliotic Ehlers-Danlos Syndrome and I am the 61st case in the world to be reported to this day. My GP was and still is absolutely incredible and so supportive. Im not entirely sure where Im going with this post, I guess I just wanted to point out that those of us that live with invisible, chronic, debilitating, life threatening illnesses have to go through physical and emotional turmoil until someone finally believes us. The best thing you could say to someone with any invisible illness is I BELIEVE YOU. Trust me, those 3 words mean so much to hear. Its torturous, its painful and it only gets worse, Ive deteriorated rapidly in the last 12 months. 12 months ago I could walk without crutches, today I struggle to walk full stop and when l go out I have to use my wheelchair. Thats just one of the things but there is a lot of gastrointestinal, cardiac, neuropathic, autonomic involvement now to name just a few. Please take the time to listen to us. We are still us on the inside, were just trapped in a body that works against us. Keeley. Xx
Posted on: Mon, 01 Dec 2014 14:04:58 +0000
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