Yesterday was a long and busy day. I had three hospital appointments to attend, fortunately all in the same hospital and then an interview for a documentary. Which is probably why I was grey, shaking, whining and sporting a heartrate of 120 whilst sat down by teatime.
I saw the hand physio and specialist hand OT yesterday to get another custom made splint and decide upon the supports we need to order for my wrists. The physio and OT are concerned about 'joint preservation', in layman's terms making sure I don't destroy my joints 50 years before their 'use by date' The NHS spends a fair bit of time and money on this kind of thing, the understanding that money spent early to save more later having worked well in some services. The problem is, whilst the NHS is spending all that money ensuring my condition deteriorates at the slowest possible rate, all our hard work is undone by the lack of support in the social care sector, which means, however hard I or my NHS therapists try, there is only so much we can do to preserve my future function without practical help on a daily basis.
The main appointment was Freak Clinic. Dr FC has been my doctor since just after I was diagnosed with EDS. He's not a rheumatologist, but in the absence of continuity of care in that specialty he has overseen my care, and despite claiming he knows nothing about EDS now has a better understanding of it's impacts and how to deal with it than most rheumatologists do. But he's always had an EDS specialist he could call upon if needed, until now. Since Professor Bird retired there have been rumours of a dedicated EDS clinic in the north, but they still remain rumours. Dr FC feels, quite understandably that as a district general hospital they are out of their depth attempting to manage a patient like me, without an expert they can more readily call upon.
It was a depressing appointment. So depressing I don't want to talk about it, as that'd be acknowledging the reality of what was said. I like it better in Egypt. It's warm and they know how to throw a good revolution so I'm staying there. Writing about it to the entire interwebs however weirdly remains in the Nile territory and so is acceptable.
The words 'there is only one way this can go' were uttered. The look on my face must have prompted the clarification that actually there could be a second way, one where we keep things stable. I like that one better so we're all sticking with that and no comments to the contrary please. I explained that I'm having choking episodes more frequently and that I point blank refused hospital last time because I was scared A&E won't know what to do. An opinion that unfortunately my consultant agreed with, they won't have a clue. I could see how nervous that was making Dr FC and so that made me nervous. My reassurances that if worst came to worst I can hook out my larynx and put it back myself didn't seem to improve the mood much.
So we agreed upon a plan. The reason I haven't been seen on the three monthly review basis my new rheumatologist wanted is because the PCT (Primary Care Trust) have been refusing to fund three monthly reviews, since long before the election. The drive is to push care back on the GP's, regardless of whether the GP's have the expertise to cope, and the logical conclusion of that policy may explain the lack of funding. Maybe. My GP cannot cope with this, nor should he have to. He does a great job of being my GP, keeping track of my general health, prescribing and referring as needed while he oversees the situation. My consultant doesn't feel he or the hospital can or should have to cope alone without specialist input, he is not trying to push me off to be someone else's responsibility, the local hospital will always care for me, but they need back up to do so, even if that backup is only advice at the end of the phone. The plan is that Dr FC will talk to my rheumatologist and they will see if they can find anyone else to advise and work out some sort of plan for A&E to follow should I have to be admitted. They will also investigate whether anything is available for me to use at home, the neighbours most likely to be called upon in a breathing emergency are medical professionals and had enquired about the possibility of using something like IM diazepam to reduce the spasms. The potential problem with that is that it relaxes me so much none of my muscles work and so I stop breathing that way so specialist advice is desperately required.
And now you see why I'm planning on staying in Egypt. It really does look nicer there.