Really this should have been my first ever post as it explains why I am writing this blog;
My story is long and the journey to diagnosis for both vasculitis and dystonia was a battle and difficult. Not only for me but my family – watching my body progressively get worse with no answers. When the doctors told me I was fine, despite deep down knowing they were wrong, I tried to be ‘normal’ and learnt tricks to compensate for things I couldn’t do. If one hand struggled to hold the object I would use the other ( as a left-handed person it is amazing how much I use my right hand now by instinct), if standing I would lean against something, tremoring hands were hidden but it became harder to hide as my body fought back. It is hard to hide a voice which falters, misses words and refuses to say simple words in sentences and a body slowing down to sloth speed. I struggle even now , after years of medics saying “the results are normal so you are fine” and being left to get on with it, to admit to people even close family how I feel. I can be experiencing pain to the extent I am holding back the tears, trying to hide the fact my muscles are fighting each other attempting to contort my body into mind-boggling positions or I can be trying not to fall or be sick , and declare ” I am fine” when asked. Even times I have ended up in A and E with suspected strokes, I have declared previously I was OK, just tired. This blog is so I am not hiding anymore. This is about how my life being wobbly and doinky really is. This is me!