I crashed on Monday because I found myself doing loads extra to make up for what I hadn’t done after the holiday because I was ill again.
Then I found some safe=pace in the mid-week but yesterday I was struggling with everything, shivering uncontrollable and feeling horrible.
So. I need to do something.
I’ve come across a lot of people on the forums of Phoenix who have managed to arrest the downward trend of their illness. Some people have even manage to improve and I have been offered stories of those who have gone into remission.
So far I’ve hit a wall every time my lovely GP has referred me to some kind of “specialist”. While my heart problems are getting worse the results of my tests have vanished. There is no record I even had the ultrasound. I knew this would happen.
The cardio dx costochondritis even though I have no symptoms of it. I have chest pain that radiates into my arms, back, neck and jaw, not localised. Worse still the bloomin’eejit dx it by pressing on the fibro trigger points and asking if it hurt. Of course it hurt!
Meanwhile I was referred to a lung specialist. I waited well over 7 months and then had 3 minutes with him. He didn’t bother to ask much. I had a test and guess what? He wrote over a month after the test saying “you have asthma and you’re overweight.” REALLY? Perhaps if I could walk and wasn’t up to the eyeballs in steroids…and as for the asthma I’ve known about that since I was knee-high!
I had to cancel the next appointment for tests because I was back on antibiotics and steroids. I haven’t even had an acknowledgement, let alone a rebooking.
I can’t even have the correct bloods done on the NHS.
So, basically I am on my own.
I have been warned by fellow sufferers who know first hand what can happen, that if I don’t find a way to ditch a lot of activities I could end up bed bound. Scary prospect.
There is a POTS/dysautonomia specialist locally but I can’t face asking for a referral. Anyway, so far it’s all gone to the wall.
I have an appt at the epilepsy clinic in October and I can easily predict (no crystal ball required) that there will be no help there either. It’s really frustrating and made worse by the fact that there could be treatment if the doctors could just be bothered (or able) to spend more than a couple of minutes with the patient!
Bottom line then? I have NO IDEA what to do, and my circumstances mean I don’t know what to stop doing either.
I know there are people out there, sicker by far than I am, and who receive no medical care at all as they are too sick to go in search of it. I know I should be grateful for GP who at least has tried to help, but honestly, there is no excuse for the shoddy care the NHS offers. There was even an all party parliamentary document issued around 2009 demanding better care – and nothing has changed.
Loads to offer up though :))