Rheumatology reprise

Well, today was Professor D at rheumatology at SJ’s – Which was a surprise, since up until yesterday afternoon I’d been expecting Dr W at CA. So that wasn’t a bad thing, just a surprising thing, to be going to a new hospital.

Anyway, he was extremely helpful on most fronts;

-Referring me to a hip specialist, to think about surgery on the bad hip, since that specialist would also be the one who would want the MRI.

-Reminding the pain team that I exist and getting me shoved forwards in the waiting list for CBT for pain.

-Getting me back into physio. Yay.

He also reccommended topical NSAIDs for the right hand, which might work but will be expensive since they’re not on prescription.

And then on the way out, the porter managed to clang my recently-dislocated hip in a door. I screamed loudly enough to bring in the entire ward. He was very apologetic though. And then the taxi driver was incredibly invasive and pushy and unpleasant to the point that it felt like assault, so I ended up geting out of the taxi in standing traffic and fleeing into Emmaus. Wherein I bought a Big Book of Birds (With gorgeous illustrations by Arthur Singer) for two pounds, a new leather jacket (one of the nice double-breasted ones) for ten pounds, which fits me perfectly and feels like the kind of jacket that I will never want to take off, a black and white striped shirt – to go with all of my other black and white striped shirts – for fifty pence, and a collection of paisley silk ties for twenty pence each. Happy days.

I’m now back at home and dealing with the University, who seem to have dropped the ball a little bit, Everyone is still very much on my side, but oh dear.

Onwards and upwards.

Yesterday I had my first significant migraine in ages. Full on aphasia, dry-mouth, visual disturbances, sudden exhaustion, and in the end I just passed out for three hours on the settee. Mid-evening, the heavens opened, and with the sudden massive rainstorm (And enough morphine to floor a bongo) my head cleared.


So, today is a pretty good day.

After a long talk with a faraway friend, I managed to get into work today and make a few quid – Not enough to live on, but enough to mean that I’m going to postpone starving for another day or two. Going to work is always a huge achievement for me, especially after long breaks, so I feel like I’ve done really well, even though I didn’t do brilliantly in actual monetary terms.

I’m also now up-to-date on my German too.

So, two of the huge things hanging over my head are now, notably, smaller. The anxiety that I had been having over the upcoming week has been winnowed down to just one, which is to say “Will I get to this appointment, and what should I expect?”

I’ve also now got all but one of my first- and second- degree relatives’ Brighton numbers, with my direct maternal line turning in 6/6/7 (I’m the seven), my m-uncle and m-grandfather at 0 and my m-cousin at 3. So it’s pretty obvious where the bendy comes from. The lack of data for my paternal side feels much less relevant now that I know that there’s almost definitely bendy on the maternal side (Oh, and three cousins have needed to have their hips pinned or otherwise corrected as children). Effectively, I’m now no longer worried about having to go and have an awkward conversation with my half-sisters, whom I’ve never met.


Three days until I travel for London.


I had a rather lovely dream last night about having finished the doll I’m sculpting, and having cast her in concrete instead of resin. Meaning that she was a lovely cool-pack for when I had migraines and overheated. It might be a good idea, really.

Today, relatedly, was a migraine day, though I did get to finish my German homework (Or at least, finish the written draft of it). Tomorrow, I’ll record it, and that can be the end of it.

Four days to go until London, and I am cacking myself. On the other hand, more of my family have been handing in their Brighton scores, and they’re REALLY interesting. If I can get everyone’s permission, I’ll post them (anonymised) on here – It’s a really interesting tree.

Five More Years

Long day yesterday; Arrived at 10.30 for my 11.30 appointment, only to be told that it was going to be an afternoon session, and that I’d not even be seen until 14.00. Finally got in at around 16.30, and out by 18.00.

Phlebotomist was lovely (And gave me a warm bag to heat up my hands with, since there was no way of getting blood out of my arms outherwise) – Managed on the second needle site (Back of the right hand) using the smallest needle possible. It still took an age to get any blood out, effectively under gravity, but it worked.

Ward staff were lovely – Brought me pillows, medication when I needed it, and generally left me alone. One was a fellow Open University student, so we had a bit of a chat, but I wasn’t particularly pressured into being sociable.

Anaesthetist was lovely, not patronising but also not deliberately confusing, and she was happy believe me that I knew my own body’s trouble better than she did.

Porter was terrible – Undid the strings of my gown whilst I was kneeling up in  front of the whole ward, so they all got a flash of my arse, pulled my ear piercings, touched my tattoo without asking, nearly took my leg out of the socket by trying to unwrap it out of a blanket that I’d put it in for safety’s sake, quizzed me about how I got dressed and moved and generally lived with the general tone of “Oh, I can’t have hurt you, you’re not ill”, interrogated me about my self-harm scars, and then actually dislocated my shoulder in his zeal to help the anaesthetist find a vein. I ended up pushing him away and finding my own. He was not a nice person.

But everything went smoothly, I woke up back in the ward, a little bit sore, a little bit groggy, but after some tea and toast with surprise raspberry jam on it, and the statutory “We have to see you piss before you can leave” which is tricky when you’ve only had a small cup of tea all day and have given a urine sample already, I got to go home, and basically pass out on the settee for nine hours.


Today is the last day of cheap train tickets before UCLH, so I’m going to spend today arranging that, sorting out my German homework, having a bath, and maybe heading into town to pay in a payslip. It’ll be a busy-ish day, anyway, but not a stressful one.



Life Admin

This was supposed to be a really straightforward post.

I was going to talk about my DSA meeting on Thursday, which was nice and straightforward, and has resulted in my getting an “ergonomic assessment” – in which someone comes to my house, builds a desk over my bed, and hopefully gives me some cushions. She also asked me if I could just move house to make life easier – That understandably went down like a lead balloon.

So today I dug into my pile of letters to do a bit of life-admin; I thought I had cleared them all out but, lo, there were the two letters I’d been waiting for, and one that if I’d missed would have been a disaster.

First up: Gynaecology. My appointment is on Monday at 11.30. No eating after 7.30, no taking public transport, bring a friend. General anaesthetic. Not so bad last time, though that was just dental, and the surgeon (Mr G) seems lovely, so my only worry is the practicality of getting there. Best friend and his housemate has volunteered to be on hand.

Second: Rheumatology at the hypermobility clinic in London. Moved from 28 August to 17 July at 8.30 in the morning. Both my best friend and my sister volunteered to help get me there on time and in one bit – Best friend’s family are Londoners, so I could stay with them and then commute in. Sister has volunteered to stay in student accommodation with me 200 yards from the clinic. Both very good options. And I need to decide soon. With Sis, I’d travel down on the 16th and back on the 17th by train, which would be exhausting but would be on a train. With my friend, I’d be driven to Lincolnshire on the 15th, then London on the 16th, spend the night of the 17th in London, then back to Lincolnshire, then home by the 19th. A long time off work, long time around new people, but a much safer way to travel, with less opportunities to hurt myself. And not requiring any long walks around London.

Third and final: The Ombudsman. I need to fill out a complaint form by the end of the week to get this sorted and continue keeping the pressure on Robin Lane.

Also, the chapter delivering my prescription on Thursday was incredibly patronising and assumed that I didn’t know what the prescription delivery service was. I was actually asking him why he had only delivered my MST, and not the rest of the script. The rest arrives on the ninth, same day as my homework is due.

Busy busy busy.

And about the EDS support group

I’ve just realised that I never mentioned anything about the weekend – The EDS group, and my tutorial.


The group was actually really refreshing – I felt like the least middle-class person there, in fact like the only person there who was below the poverty line, which made me incredibly uncomfortable (All the stuff about middle-class vs working-class discourse very much holds true), but it was nice to be around other people who understand the nature of the beast and to be in a forum where there’s going to be discussion of EDS-related issues in a sort of structured fashion. Sadly, it’s all arranged via Facebook, so I’m not going to be as much a part of it as I could be, but it’s a start. There was also a bendy there who was at least 65, so I’ve also met my first older bendy, and that was quite a hopeful thing – On the one hand, I’m as ill as her, on the other hand, I know that it’s not guaranteed to be one long downhill slide.


Tutorial was also good – My tutor is really impressed with my work so far, and is going to make accommodation for me in the exam. I’m getting the Disabled Student’s Office to visit my house next week, to sort out exam arrangements and things. And I’ve bought a book and soon to get a boardgame about German grammar – I’m actually kind of sad that I’m coming close to the end of my formal German education again; It’s been three more years, after the first three at school many years ago, and I just feel like I’ve barely scratched the surface. I want there to *always* be someone setting me little problems to translate and write and play with.

Anyway, my right hand is tearing itself to pieces, so I need to take a break and maybe start on the Baclofen. Wish me luck.

And so, we wait.

My speech to text programme is basically saving my life right now, since without it I’d not be able to communicate at all.


I spent yesterday in bed, slipping in and out of conciousness (80mg of morphine, 6mg diazepam), incapable of function thanks to the sedating effect of the analgesics and the antispasmodics, but still in pain. Eventually a friend came over and picked me up, relocated my hips and shoulders, then my partner came home and fed me and spent the rest of the night looking after me.


Currently watching a programme about mobility scooters, and they’ve just mentioned “palliative care”. A woman in her sixties, saying that it feels wrong that she’s only recieving palliative care, and that that means she’s got nothing to look forward too. Another is in her thrities, more like me, vey depressed by her condition, but desperate to keep trying. I’m recieving palliative care too – the best they can do is keep me comfortable. Getting better is all down to luck, and remembering to do my exercises, and not getting too despondent. There’s an older chap as well, and he basically regains some indepenence by getting his mobility scooter, and that makes me kind of happy- That there IS something that can be done, sometimes.


Anyway, tonight (I’d nearly forgotten) is a meeting of the EDS society. If I go, it’ll be my first one. I’m currently a bit terrified to go, but on the other hand, it’ll be good for me. Probably. I don’t really know. I’ll report back, anyway.


Tomorrow is my Open University German tutorial as well, 9am at the local polytechnic. My tutor knows that I might not make it, but she’s agreed to send me the handouts and do an online tutorial for me if I can’t.


For now, I have homework to do.


Oh, and a bit of good news as well;


Just a reply saying “We’ve got your complaint and we’re going to look into it” but it’s a start.