London, as expected, was one long punishment. It was made up for by UCLH being brilliant, and by the restaurant that served amazing coconut chutney and dosas.
So this is a post of two halves;
First, THE BAD;
The night in the hotel was terrible – I had the choice between an incredibly room that would get no cooler than 22 degrees, and having a load of even noisier desk fans pointed at me. I slept for an hour and a half, finally getting to sleep at around 4.30 before waking up to watch the cricketers warm up at 6 (England vs India test, day one. Alastair Cook looked about as fed-up and over-warm as I felt, poor boy), checked out by 7am, and sat on the lovely breccia specimen in front of the hospital until about 8, when I met up with A who was going to help me through the appointment and getting to my train afterwards.
Yesterday was basically the hottest day of the year. It was thirty degrees by the time I got out of my appointment at eleven, and only got worse. I ended up hiding in the British Library cafe for most of the afternoon, in basically a dead faint under a table, and then in the First Class lounge in King’s Cross for the rest of the time. As we got from place to place, I did literally faint about every hundred yards, including once which resulted in me having to curl up in the foetal position around a dislocated hip in the middle of the new King’s Cross concourse (Gorgeous building, by the way). By this point, I needed the wheelchair, and the porters were not only unhelpful, but all of the worst stereotypes of interacting-with-the-disabled; Treated me as if I was insensate and incapable of making decisions, talked to A about me as if I wasn’t there, ignored my telling them that they had to be careful when crossing rough ground (And managed to injure me by trying to bump the wheelchair over the platform-edge studs).
But I got home safely (No porter waiting at Leeds, even though they claimed there’d be one), crawled into bed, and woke up this morning feeling like death – Spending so much of yesterday dehydrated means that today I feel utterly, utterly sick.
But THE GOOD:
Huge progress has been made, and I have been reassured greatly.
1 – An angry letter is being sent to CA, from the hypermobility clinic, telling them to take me back on for physio, and instructing them to give me a full programme of exercises to take home.
2 – I’ve been given licence to think of swimming, sauna and sports massage as Sensible Therapy rather than Decadent Indulgences, so I’m going to start doing that a lot more.
3 – The importance of pacing has been stressed, again; To not only stop before it hurts, but to stop long before I want to. Her exact words were “Write out your 52 week plan, then have someone less-motivated cut it down, then cut that in half, then cut that in half again. Then stick to it.”
4 – Dr P didn’t want to “test” me. My big worry was either hurting myself in demonstrating dislocations, or in baing hurt by being roughly manhandled. She was absolutely spot-on on the issue of consent, always demonstrated movements on my “good” side before trying them on my “bad” side, reassured me on things which I had which would be an advantage (Well-preserved foot arches, strong ankles and thighs, lots of muscle over shoulders and chest) and generally focussed on positives rather than negatives.
5 – I’m being given a “Physio pack”; a novel-length set of instructions, which I have been told to take photocopies of to every new physiotherapist, OT, GP and medic for the rest of my life.
6 – I’ve been told to pick and choose what information I listen to, base on instinct. Dr P said that I seemed to be good enough at critical thinking to know which bits of information from medics I should ignore, and which I should value. Making myself the co-ordinator of my own treatment seems to be a good idea, in her view. I agree.
7 – I’ve been referred to a local pain management physio, to help to manage my treatment here. I was offered one in London, every two weeks for ten weeks, but as I said, I couldn’t afford to pay something like £300 every fortnight to commute in.
8 – I was offered one-off physio for 2 hours in London, which I have kept open as an option.
9 – I have been put on the waiting list for Stanmore’s inpatient programme; One to three weeks of intensive physiotherapy, pool time, and generally alternating between hard exercise and bed rest. With doctors and orthopaedics and physios and nurses on-hand at all times to make sure that I don’t make myself worse. I’ve been told that it’ll be a long way in the future – Probably around a year’s time – but in my view that just gives me time to get myself into mint condition before I go, to really make the best of it.
10 – I have been told to look at Michael Phelps, or Stuart Broad (Two famously hypermobile athletes), and to aim to be in that kind of shape within three years. Dr P doesn’t seem to think that that is a particularly lofty goal, and thinks I’m in the best possible position to get into that kind of shape.
11 – Dr P thinks that whoever told my family to start putting me in the water at an early age basically deserves a medal (So, erm a very belated thank-you to Dr Wilson!) because it’s probably what’s kept me in good condition.
12 – I have been reassured that my symptoms sound all very, very normal for someone that’s hypermobile, and that the pattern of “Always been in pain, but it all really went shit-shaped after I stopped being a national-level athlete” was a story that she heard every day, and that the moral of the story was to keep exercising.
13 – She was genuinely upset for me to hear the number of times that I presented with hypermobility-related symptoms, and had my concerns dismissed.
14 – I now also have exercises to make my fainting-upon-standing less likely (Stuff to build up the blood pressure by moving the legs, and to squeeze the vagus nerve).
15 – And finally, honestly, just having someone acknowledge that being in pain every day is tiring, depressing and morale-sapping was a relief.
I have a lot to get on with.