Denial, I was suprised to learn that even the IBS was related.
I am 99% sure I have sleep apnea. I had a sleep study, and when I went to see the consultant, they only had the ECG and echocardiogram results in, I have an enlarged heart, he didn't mention the mitral valves so they must be ok.
I got a call today from someone in the hospital offering me an appointment on Wednesday to go and get a machine and a letter for the DVLA, as a result of the sleep study, of course she can't tell me if I have sleep apnea as she is not a consultant.
So it looks like I have to get the machine that forces air in your airway now and I will loose my driving licence until they consider me safe. I don't really understand how this works, I have just had a bit of a google about it.
I am not supported, I am a lone parent (Dad scarpered when the diagnosis came through) and me and my dc are not fully fit having EDS and all!
I have some more test results to come through.
Should I ask my GP to refer me back to Prof Grahame, I missed my last appointment (long story), so I am probably off the Pof's list now.
I am a little worried about this machine as so many people don't seem to understand EDS in the medical profession, many haven't heard of it or are embarised about not knowing they pretend and it is so obvious they are clueless!
It is a case of having to get on with it, if a Dr needs to be Dr Wonderfull they don't get the kicks from EDS as there is no treatment or cure, so there is no value in seeing someone with EDS if the Dr has "God issues" they can't make you better, so don't bother with you or the symptoms.