I have seen more than my fair share of doctors over the last ten years or so, and very often I have been astonished by just how awful many of them are. But the last couple of appointments show that things don’t have to be that way.
My GP surgery is very good, and as I’m quick enough to blog when I get cross with doctors, I should be equally quick to be thankful. On Thursday, having spent three or so days struggling with my breathing I decided I’d had enough and phoned the surgery, “Can I just pop in and use the nebulizer?” I asked expecting to have to jump through many a bureaucratic NHS hoop. But no, the receptionist said she would inform the duty doc I was on the way.
I got there about 20 minutes later and was taken straight through to the room and plugged into the nebuliser within a couple of minutes! I then saw the doc who gave me a script for steroids and other stuff, and so I can now breath nicely again. Lovely.
I had an appointment with the Rheumi at the hospital today. I do try and avoid mentioning FM when I see doctors now, but as FM comes under Rheumi it’s difficult to avoid. She did immediately ask if I’d had pychi referrals for the FM. I said no, as I am not depressed (thankfully) She then mentioned GET and CBT as having good outcomes. Actually it doesn’t, but I didn’t mention I’d read all that research. She was a good doc though, and did listen to what I said and did a good examination.
The consultant came in at the end and asked me where I wanted to go with this problem from here. I explained that I was managing it fine and that as I am well aware it isn’t getting better, and is getting worse, and as he pointed out there isn’t much in the way of medical support for it, that I can continue to do that. “My body is doing this and I can’t do much about it,” I said, “I just get on with life and accept this is how it is.” I think I’ve known for a long time now that there is nothing doctors can dare to do to help those people with fibromyalgia, or ME (CFS/CFIDS).
Machines might be big, white and expensive, but they are extremely limited and this is before the limitations of busy (and often poorly trained) doctors get hold of them.
Ignorance prevails and even though the two doctors who spoke with me today were both polite, good people, they are hampered by the politics, money and amazing egos of those who could help, but are too arrogant and have blocked any hope of proper care and treatment, let alone a cure for fibro.
As I jump through the hoops I know I am facing an eventual joint dx of FM and ME. I will resist to the end. Sadly having a dx of either FM or ME let alone both is simply a ticket to nowhere useful. Sixteen years after the publication of Osler’s Web (which I must review) we are not much further forward in even gaining basic respect for patients. Until there is a massive change in attitude, egos, politics and financial mismanagement, people with ME/cfs and FM are going to be left not just seriously ill, and dying, but treated with utter disdain.
I am grateful for the hard work and genuine care of the doctors I’ve seen the last couple of times. Their good professional approach does not cost more than the rude approach; and it can made a difference to how the patient feels about the medical hoops we are told to jump through and the horrible personal costs of the disease we battle every day.