Tuesday, 4 December 2018

The Last 72 hrs

When I started this blog all I was trying to do was raise some awareness of the condition I suffer with, the frustration of getting nowhere with doctors or benefits. I wasn't trying to be anything but me but as time has gone on and the lack of sleep over the last 72 hours has given me the time to ponder trying to take my mind off the fact I can't sleep, with the discomfort I've been having the fact that I've not been able to find comfort has given me time to contemplate what it is I'm willing to do to bring awareness of our condition while remembering the anxiety that lurks in the background. I've been lucky enough to have met some lovely people who in their own way understands chronic conditions and who have been advocates for their own conditions this has given me the drive to do whatever it is I can do for my own. I keep wondering how many people out there suffer from this condition how many people out there that needs a voice to get the condition to be recognised as even though it is said to be a rare condition many people around the world suffer from some form of the condition, but how many people out there are left in the dark by being miss diagnosed by there doctors as I've said many times before the research on the condition is very small and we can't expect our doctors to know everything about all conditions so the big question is how can we spread awareness how can we get help for those who are struggling to get a diagnoses but like myself how can we get people the support and management to control the condition and to answer the many questions we all have. 

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