Do you ever, ever leave?

Back to CA for occupational therapy this morning. Was fitted up for overnight supports for my hands, which are basically thermoplastic cradles moulded to the shape of my hands and forearms, with straps to hold me into them.


I also ran into two of the C-Series; First C1 (Never actually my physio, but knows me from accompanying a friend to his appointments) who opined that she thought I was at CA more often than she was, and then saw Glados, who wondered what’d happened to my knee and why I was wearing a support on it – She had been my physio for quite some time, so this shouldn’t have been a mystery to her.


J, the occupational therapist, couldn’t fit me for a knee brace, and says that I have to go back to physio for that. Physio had alreadt said that was her business, not theirs. She seemed unshocked that I was caught in a swings-and-roundabouts situation.


I also now have the date set for the delivery of my perching stool and grip rails. 13th of June.


Oh, and I’m still carsick from the buses. This is getting ridiculous.

A new GP, bloods, and democracy.

Today was a rough day, so I got the GM to come over and push me around in the wheelchair whilst I did my errands.

First stop – GP (My local practice, RL, the one that I’d complained about), to get the remains of the weekend sorted out; A new doctor (I’m going to call her Dr F) who was improbably young and made me think of Bernard Black’s Summer Girl, and was amazingly caring and listened really well and was happy to discuss muscle relaxants and antispasmodics with me. Agreed that diazepam isn’t appropriate long-term, but also agrees that taking something else prophylactically would be a bad idea. So she’s looking up to see if I can use what are usually prophylactic antispasmodics as PRN ones. I mentioned that Dr S had also mentioned that I might have a calcium or vitamin D deficiency that makes them worse, so she agreed to send me for bloods.


Best yet, when I explained that I wanted to be back at rheumatology to swot up on what I needed to know before my specialist referral, and to find out where CA’s knowledge gap was so that I could ask the right questions. She approved of this really, really well, and referred me straight back to Dr W at CA’s rheumatology.


So out I went, and managed to get an appointment to get bloods taken – In literally half an hour. Just enough time to nip down to the polling station and vote in both the Euro and council elections. Of course, the polling station wasn’t wheelchair accessible, and the actual polling booths were too small for me to fit the chair into, so I filled out my voting cards on a chair in a corner and just trusted that nobody was watching me. Seriously, there were the three major parties, and then SIX far-right/hard-right/anti-EU/racist/anti-immigration/single-issue fuckers. I worry, I do.


And then back to RL, picked up more diazepam from the pharmacy (Where the nice scottish pharmacist was very sweet to me, and came out from behind the desk to talk to me, asked how I was since he wasn’t used to seeing me in the wheelchair, and checked that I was aware that the diazepam might make me a bit woozy. I asked if it’d be a bit like the morphine, and he said it’d be a lt like the morphine, and we had a bit of a chuckle.


Then on to the phlebotomist, who only had ten minutes before the shuttlebus took her home, so she had to get the bloods out in double-quick time; usually a nightmare since my veins are really difficult to find usually. She tried my usual good vein (Back of the right hand) which failed, and then took from the left elbow with a vacuette, which worked much, much better than the usual long tubes. My previous shot at phlebotomy involved both wrists, both elbows, both ankles, my inner thigh and my hip just above the pubic bone. And no blood.


So, overall, a good day medically speaking. Tomorrow is occupational therapy, at CA again, where I should get a litle bit more of my awesome exoskeleton.


Current treatment status;

Physio: Discharged

Rheumatology: Referred

Hypermobility Specialist: Referred

Occupational Therapy: Under care

What on Earth are you doing, Percy?

Time has moved on. I’m a long way away from the worlds I lived in when my last few blogs died the death.

Nowadays, I’m ill. This is my blog that I’m going to post in so that my friends don’t have to put up with my constant whining about dealing with the NHS.

I have Joint Hypermobility Sydrome, still under investigation, and yesterday I got a letter of referral down to UCLH, under the care of Dr Kk, at the end of August. I’ve had 6 months of physio (Discharged in April) first with Mircalla (who was amazing) and then with GLADOS (Names obviously changed to faintly protect their identities; In real life they’re two of the C-Series, more on that later), one appointment with Dr W at rheumatolgy last August, an appointment with the pain team in April which was kind of amazing, really.

The day before that, I was in A+E, being manhandled by a consultant who firstly didn’t introduce himself, secondly thought that his two-second dekko at my legs (still under a blanket) gave a more accurate diagnosis of “Not a dislocated hip” than Dr S’s careful and through examination the day before which, in agreement with my previous physiotherapists, diagnosed “That’s a dislocated hip.” and thirdly who manhandled me with neither my consent or a chaperone; Damaging my hip even further.

This morning, I was at acupuncture (Provided by the NHS) which turned out to be the biggest waste of my time that’s ever been concieved. Two hours’ travelling, to get there for 9am, at which point I was treated to having to lie face-down with my head at a ninety degree angle and my shoulders hanging loose, whilst Physio D put eight tiny needles into my lower back (For funding reasons, she wasn’t allowed to treat my upper back pain). Ten minutes later, they were removed. Physio D then returned, and we agreed that acupuncture wasn’t appropriate for me – The travelling and the treatment were both too much stress for my joints to take (The problem being not the needles, but the lying very still). She then told me that she’d keep me on the register, but not make me any more appointments. Very much with the same nudge and wink as Dr L from the pain clinic had given me when prescribing me acupuncture in the first place (She too is a sceptic) that this was basically a way of making sure that the clinic didn’t end up being prescribed to people whom it’d really hurt.

This afternoon was a long, long letter and reasonably-long phone call to my MP – Of the opposite political orientation to me, but still apparently a nice bloke – in which he promised to sort out the problem with my GP’s practice (Or rather, the receptionists therein and the booking process; It’s always impossible to get an appointment).

And tomorrow, lo, I finally managed to get an appointment with a GP – not my GP, but a GP. It’s a start.

Friday is my second OT appointment – the first one set me up with wrist braces, and I think this one will get me measured up for knees and elbows.

I am in so much pain right now.


Current treatment status;

Physio: Discharged

Rheumatology: Discharged

Hypermobility Specialist: Referred

Occupational Therapy: Under care