Filed in the ‘you just couldn’t make this up’ catagory.
I received an appoitment to see a doctor today. I phoned up beforehand to see who he was and why I was seeing him and was told quite clearly that he was a specialist in ME. I was over the moon (stupidly) – could hardly believe there was a doctor who had chosen to specialise in such a disrespected illness.
I had reached the end of the road as far as doctors are concerned but this silly appoitment raised my hopes. (very stupidly)
Turns out the doc is not a specialist in ME. In fact he isn’t even aware of the research developments in ME/CFS/FM. He basically told me the illness was a non-illness and that I just needed aerobic exercsie and CBT. I pointed out I had done the exercsie and now can’t even walk to the end of the road. He said – do it all again and have CBT.
He practically laughed at the notion he was a specialist in ME because who would bother with that? I said I had noticed that no one did. He said that doctors kept referring CFS/ME/FM patients to him and he didnt really know why! Bearing in mind he hasn’t any knowledge of the new research I don’t know why either.
Hoping beyong any hope at this point I tentiviely raised the question of Gaberpentin and whether it would help me with the twitching and jerking. He didn’t know but then he knew so little about the illness that I had to explain that amitripylene is use as pain relief.
I am afraid I cried on the way home. But it has helped in one way. I will not be returning to the doctors. I will not attend any more hospital appoitments and I will simply manage.
Fortunately I am pretty strong willed and I have coped well over the last 10 years – so I will continue to cope. No more doctors. No more let downs.
I am gradually getting more disabled and sicker but I am sure I will find ways to deal with it. After all in the olden days people had to as there was no medicine. As it is clear the NHS makes medieval approaches to medicine look good, I will experiment and see what helps from natural remedies.