The trip down on Friday was hideous - five hours on trains, two changes and a missed connection left me feeling very cross and fidgety. Didn't help that hubby's back is really bad at the moment (his GP thinks there might be some nerve damage) so there was him hobbling along on his crutches and me in the wheelchair (I'm sure people must have thought we'd been in a serious accident
) harrassing the poor station staff into helping with suitcase and chair.
I got put in the wheelchair space on the long train trip from Darlington to Birmingham, as I thought it was booked for me, and then someone got on at York and the space was apparently booked for him
. So my chair wound up sitting in the aisle with people huffing and puffing every time they wanted to get past it (never mind that it was blocking exit for people in an emergency).
But the appointment itself went really well. Prof Grahame said that I shouldn't have had to have referred myself and that it's odd that the hospital said they didn't have the funding to pay for it - as they don't have to. Funding comes from the PCT. But it was well worth the money - I got an "official" diagnosis of EDS and am being referred all over the place. Prof G is writing to my consultant and my GP with a list of things that I need, from pain management courses to a physio that actually knows about the condition. From what I'd said about my previous experiences with PTs, he said my joints just can't handle that amount of "pummelling" and I need someone sympathetic to the condition. I am also being referred to a professor who specialises in the "neurological" (at least I think it was neurological.. it was a big word starting in "ne") side of EDS as I had a high score on the list of other symptoms (i.e. mental and physical fatigue, dizzy spells etc), so I might end up spending a couple of days in hospital in London (not a happy thought - I don't cope too well in hospitals and freak out at having to be alone, but if it helps it will be worth it). I'm also being sent to a podiatrist for advice on ankle supports.
All in all, it was a really good appointment. We're going to try to get hubby referred to see him soon, as we're all fairly certain now that he has the same problem, and my mum is going to keep an eye on my younger brother who has shown some hypermobility tendancies and has spent years complaining of "growing pains". So definately well worth the hassel and difficulty of getting there, and my mum paid for the appointment itself
.
) and I wondered if anybody has been to the Hypermobility Clinic since it changed location. Anyone know which is the nearset tube/train station to use?
) and there has been a bit of confusion over my referral to Stanmore. Hopefully a lot of these issues will get resolved tomorrow.