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July 2023

Well, day one of home dialysis training was a mixed bag. I did the setup all myself just fine - which was good! But I think we took off too much fluid, because I felt awful afterwards - and my rheumatoid arthritis flared horribly. Feels like one step forward, two steps back.

Exciting. Day 1 of the useless Thanet Parkway station. Nobody got on or off.

This ultra expensive new station is in the middle of nowhere. You can't get to it, except by car. There are other stations nearby. If they expect new homes to pop up around it, locals are worried that we don't have the infrastructure to cope (doctors for example) 🤷🏻

Tomorrow, I begin 10 days of intensive training to do haemodialysis at home. My AV fistula isn't ready to use yet, sadly, so not sure what they'll do to train me to needle myself - I'll have to use the central line in my chest for now.

Head of vaccine task force in the UK confirms that the reason vulnerable people in the UK weren't given Evusheld - and thus had to stay shielding, their lives wrecked - was because government didn't want to spend money on us. Disgusting when they bunged so much to their cronies.

Another good example of bad email handling: Google Scholar uses your Google account. If you change the address on the Google account, as I have, you can't view alerts set to the old email... But they still go to the old address, not the new one. You can cancel these though.

This weekend I will mostly be: reading a PhD thesis; finishing final edits to my book; and completing a secret programming project.

Just learned that tramadol is to become a banned substance in pro cycling. Tbh, if you can cycle on that stuff, you deserve some kind of medal.

Every time a celebrity dies and there's suddenly a massive social media contest to show to whom they meant the most, the cynic in me wonders why I haven't seen any previous posts from them about said celebrity. I think we should celebrate more people while they're alive.

Though I'm probably only thinking that because I'm grumpy on dialysis

Fatigue is among the debilitating symptoms of rheumatoid arthritis, but it's virtually impossible to explain to those who have not experienced it. People think it's "tiredness". It's not. It's far far worse. Reality-shaking exhaustion. And you can't sleep or rest to solve it. https://x.com/edyong209/status/1684549675318231042

The best I've managed for describing it to non-sufferers is that it's similar to how wrecked and exhausted you feel when you have flu - because your body is mounting an immune response, in both cases. It's just that, in RA, the immune response is against your own body.

Home from hospital at last. Lots of things I should try to catch up on, but am shattered, so will settle down with @jeffjarvis's new book...

Sadly, this is what rheumatoid arthritis does. It causes misery, illness, and awful pain through active autoimmune inflammation. That inflammation, in turn, erodes/destroys the joints permanently. Which also hurts. A lot.

I have been lucky to go this long with severe disease - almost 20 years - before incurring such damage. But it's another thing that will, once more, make life harder for me.

Had rheumatology today.

My hip is permanently damaged, with visible joint erosion, and active ongoing severe inflammation. It needs surgery but, as the consultant said, now is not a good time for this, given the new dialysis and we will try to delay.

Finding this actually quite a difficult thing to deal with, psychologically. Even if we can get the active autoimmune inflammation down now, I will also have to deal with a damaged hip -- which hurts 24/7 already -- and the prospect of replacement surgery.

Today, I'm off to a London hospital for MRI scans of my neck, back, and hip. The first looks very deformed after a year of serious rheumatoid inflammation. The lower back is also screwed. And the hip is clearly damaged given the noises it makes and pain it causes.

Then it's BK viremia tests to see if I've made any progress clearing this - the first step towards any transplant possibility. Finally, I'll round off the thrilling day with a rheumatology clinic.

Consistently bewildered that people put so much weight on the affordances of social media platforms, when really it's the network effect/number and quality of people in your network that makes a platform good or otherwise.

Of course, moderation matters too.

The bad news: I have to go to hospital on 12 of the next 17 days. The good news: I should be equipped to do dialysis at home after this training.

I didn't realise, before I started dialysis, what the hard bits were. I think I thought you just sat there and that was it.

If only. Vomiting, diarrhea, headaches, severe muscle cramps, hypotensive drop, fatigue all very common. It's not great fun! But it is lifesaving.

I have changed 170 account emails today as I migrate my primary email. I still have 150 to go. There has to be a better way than the ongoing hell of "please enter the SMS verification, your email verification & your memorable date. Actually, now please call customer services."

The Uxbridge election going to the party that campaigned against environmental issues (ULEZ) is a clear indicator to me that democracy is seriously incapable of saving our species from catastrophic climate disaster. We're so screwed.

I've used Google Workspaces for years and associated the domain email with many external service logins. Some sites do this well and link to the Google ID. Some, though, link to the _email_, which is a serious security risk if you rescind future control of the domain.

I know it has security implications, but the fact that there isn't a common API for changing profile details is a huge pain. I need to change my primary email everywhere and it's going to take... Ages. If only a password manager could do it in one click...

I really hope I will have moved to doing it at home by then, because, otherwise, Christmas Day is looking fun

Yay!

My next book has been unanimously approved by the Stanford faculty editorial board. I should have the final MS ready next month ready for production.

A guy at my hospital has been on and off dialysis since 1977! He's had 4 transplants but is still going strong. He's been really helpful in teaching me how to set everything up, but says he regrets there hasn't been more progress in renal replacement therapy over this period.

I mean, I really like The Chemical Brothers, but I think I'll pass on the £165 hoodie, t-shirt, slip-mat, vinyl bundle for the new album...

Now I am become @gbilder, destroyer of closed infrastructures.

With thanks to @ernestopriego for the photoshop.

Mm, yeah. Proofing time this weekend. Coming out later this year, open access, in a Orbit special issue on Percival Everett.

"On Monday, the Mail also carried a story about a woman who married a Victorian ghost announcing her divorce. No wonder the paper is keen on steering its readers away from degree-level education" - most amusing from Research* playbook

Wow. The latest Ithaka report reads like a hit job on open scholarly communications. Really disappointing. Allowing "global" equitable participation is a threat to trustworthiness? According to "some observers" (it uses this shadowy deflective language throughout).

Such a transparent move to reinstate the polytechnic/university divide. Cultural studies only allowable to privileged applicants. Everybody else just gets to be trained for their station in life. https://x.com/RishiSunak/status/1680848107708338177

The irony is that if people can't get jobs after their degree, it's more likely because the Tories have wrecked the economy, not because the courses are "low value".

A good example: my university has a weird prestige status. Very well respected in research circles, but not necessarily well known in the public eye. So we might be branded "low quality" by Sunak... Yet I validate the MPhil degrees at Cambridge as external examiner. 🤷🏻

The basic fact is: because the academic labour market is so tight, wherever you go in UK HE, you will be taught by top experts in their fields, with PhDs and published books. Variation in prestige is mostly due to historic wealth of universities, not quality of courses.

It's a mirror of the historic class system to which the UK still clings. Hierarchy must always prevail. Subversion of said hierarchy must be punished.

Can't wait until I can do dialysis at home and get my afternoons and evenings fully back on Monday, Wednesday, and Friday. Hopefully not too far off.

This week, @gbilder is coming to visit. This is the last time we met. I'm sure it will be a very sensible few days of serious work.

I always thought Barbie was a terrible anti-feminist icon that encouraged unhealthy body image and traditional harmful gender stereotypes. Now it's been ironised for rehabilitation though?

Some days, I despair of rheumatoid arthritis. Things were all getting better. Good trajectory with new immunosuppression. Then, today, out of the blue, my neck and shoulders are on fire with pain again so bad that I'm being sick. Hard mentally to handle the randomness of attacks.

And today - a vast improvement, for no discernible reason. But I'll take it!

The new Crazy P presents with a @hardway

Then there's this very nice Glok EP from Andy Bell...

The new Crazy P presents with a @HardwayBros track remixed by veritable duo of HWB meets Monkton Uptown (Duncan Gray)

Electro blues outfit Skeewiff performing a classic Herb Alpert track

And, bought pre-scandal, the anniversary reissue of Rammstein's Sehnsucht.

Exciting stuff in the post today as Raphael Kabo's book is out, in the New Horizons in Contemporary Writing series, which I edit.

This AM I went to the cinema for the first time since the pandemic began. Heavily masked and with only a few other people in the room, I enjoyed the new Indiana Jones film. Particularly liked the representation of Operation Paperclip/von Braun in the Jürgen Voller character.

A new policy at @CrossrefOrg: "Crossref now offers unlimited sick time off to all full-time employees. We trust you to take the time you need in caring for your health... and family... For you to enjoy a good work-life balance and be productive, your health must be a priority."

I am especially grateful as I've had the roughest 9 months of health in my life ever, just as I kicked off at Crossref. But they have been nothing but supportive. And it gives me a sense of loyalty to the organization. I want to do good work for them, because they treat me well.

This is such a humane policy. Of course, you need to have some HR contingencies, but starting from a culture of trust -- and recognizing that employees are people, with health needs beyond their control -- is really positive.

I should say that since I have had permanent jobs in academia, I have also had great kindness and support from academic institutions -- and I can't fault them. But it's got to the point where I am having to work from hospital wards so much that teaching was nigh on impossible.

It's a good job we have The Sun to protect our country against the sexualisation and exploitation of young people

Had the technician around to appraise our house for home haemodialysis today. We passed the home check! Next steps: custom electricity and plumbing to wire the machine in.

I can't explain it, but have just heard that my article in BOOK HISTORY was the most downloaded piece of the year. But not by a small margin. It was ~10x more downloaded than the second article. That it's open access must have some bearing but can't be all https://muse.jhu.edu/article/872063

I wonder if it was posted to reddit or something?

This looks like a brag - but I'm actually curious about what has happened here and why this should be the case.

Oh yeah! My first time wiring everything up myself on the dialysis machine. Success!

🎶The red line's connected to the... Out flow. The out flow's connected to the... Dialyser. The dialyser's connected to the...🎶

A decent research appraisal system would value negative results when they came from sensible hypotheses that would have advanced the field significantly if correct.

That is: radical but plausible hypotheses that turn out, nonetheless, to be wrong should be valued.

I seem to have returned from holiday to some 90s timewarp where everyone on my feed has either been to a Blur or Pulp concert last week.

I've had a really refreshing week off. Predictably, I didn't feel great for much of it and I was quite limited in what I could do in my current state. But I do now feel mentally recharged after it and am full of enthusiasm for my next projects!

Had a dream last night in which I wrote a long blog post about how transparency is the opposite of trust - because if you trusted, you wouldn't need transparency. That said, transparency can also engender trust. https://t.co/WsOzi7JbpW

Whenever I shave my head (since I had cyclophosphamide I'm patchy and bald when I grow my hair) I remember a scathing comment @Rachael_Gilmour once made to me about preening academic men who think they are Michel Foucault. Just need the winter turtleneck. 😂#feelingguilty

Me in light of OPPENHEIMER: so few of us leave a legacy. But it may be better to leave no trace than to have done damage.

My friend: imagine being the person who created this meme. A legacy. "As I pass away from this earth, I can know that I created: HELLO / YES. THIS IS DOG"

A question that I'm sure will be tested in court: what's the legal difference between a search engine ingesting in-copyright material to build an index and then to show users summary information about it and ingesting the same material into a machine learning model?

Exciting* stuff tonight. I'm beginning the training to learn how to do haemodialysis myself, at home! Easy at this point while I have a central line... A bit trickier when I have to IV cannulate myself in a few weeks. Wish me luck!

* for me

Probably the last person to say this, but running to Zuckerberg's platform, because you don't like what Musk's is doing, doesn't seem a great fix?

Two months ago I was in grade 3 hypertensive crisis with a blood pressure of 186/116.

Yesterday, after dialysis: 87/50. Whoops! Too low. Amazing, though.

Decentralisation, federation, and fragmentation always seem to lead back cyclically to centralisation, to make systems usable. Social media is in a chaotic fragmenting phase of the cycle at the moment.

Whenever you praise the NHS, there's always some neanderthal troll who pops up to criticise it being a "cult". But under a US-style insurance system, I'd now be bankrupt and probably dead. So those people can go do one.

Happy 75th birthday to the NHS!

One of the nurses on the dialysis ward has baked all the patients cupcakes.

We must make sure that this humane institution, that treats on need rather than wealth, lasts at least another 75 years.

Today we went to @theowlcamber - and they were totally amazing. Once they heard I was vulnerable, they gave us our own isolated area and asked what else they could do. And the food and drink was really superb. So good!

And Luka enjoyed it, too!

So the totally surreal part of this first holiday in 4 years is that I've had to be driven back to my usual haemodialysis centre for a session. In future, I might be able to go to a remote centre if travelling. For now, it's the usual place - and then back to the holiday...

Nice looking restaurant where we had a booking now say "oh, sorry, we stopped serving food outside a few weeks ago".

Me: "could you do it for us as a small one-off adjustment? I have kidney failure, rheumatoid arthritis, and immune deficiency and can't go inside".

Them: "no".

I should say: they did offer a reduced "graze" menu... But why, if you're doing this already, can't we just eat the full menu outside?

Sending solidarity and sympathy to US friends hurt by the SCOTUS rulings this week. It's not my country - and heaven knows we have enough of our own problems here in the UK - but it is heartbreaking to see what progress we had so reversed, globally.

Bowie tourism insisted upon by @artofile - apparently the site of the video for "Ashes to Ashes" - at Pett Level.

Looks a bit Q

The problem with using religious belief as a reason to discriminate is that it undoes all characteristic protections and trumps everything else.

"I believe disability is a sign that God is punishing people and so will not serve them."