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September 2025

Yesterday I did a bit of walking with help. It was not far at all. Today has practically been a write off, physically, as a result. I have felt terrible all day. My legs are so weak that I have felt on the verge of falling. They are so weak that they feel painful. Learning to walk again is hard.

OK, a strange problem. I only have monocular vision. I see out of one eye at a time and have no depth perception. I can choose which eye to look out of. Except, today, something is going wrong and I'm getting involuntary switching and confusing inputs. I have a solution though...

Me wearing an eye patch, looking like a pirate. I'm a 40-year old bald white dude

Robyn decided that she would refuse to walk the last part of our walk this evening. She just lay down, rolled over and refused to go any further. So she got a ride in the support vehicle!

A picture of me in my wheelchair with a brown dog on my lap

A visit from @gbilder.com and Penny this weekend. Lots of scholcomms chat, thinking about LLMs and site scraping, and talking about Linux tooling. Perfect.

And we gave Geoffrey the festschrift that I co-edited. More on that soon.

A picture of me and Geoffrey Bilder sitting at a table

Me: PLEASE can we process these blood tests urgently? I have a guest coming, planned for months, and need to be discharged.

Hospital: leaves blood tests on the side, in the ward, for 3.5hrs.

For clarity: I am angry. I have been stressing the urgency of these blood tests for hours.

The hospital has been telling me that my blood results aren't ready for 3 hrs.

I just found out why. They had been left on the side in the ward for 4hrs and not even sent to the lab.

Starmer is flailing in the polls. Really disliked. Needs some policies that will give him a boost.

He goes for "National ID Card". Top politics there.

Not to mention that just as we're on the cusp of the fascists taking power, he wants to get everyone on a national register.

Amazing.

OK, I finally blew up over something in hospital. I've been waiting 8hrs to start this infusion and I finally saw a doctor to begin prescribing. He wanted a list of my drugs. And then he wanted to take my drugs away and give them to the nurses, for them to give to me.

This pushed me over the edge.

I have administered my own medications to myself every morning and every night for 20 years. Lots of them. Whenever they delegate this task to nurses, something is ALWAYS wrong. Plus, with pain relief, you ring the bell, then wait 10 mins, then the nurse arrives, then they prescribe it (30 mins).

You basically end up waiting almost an hour for pain relief. Complex meds, they have no chance of getting right. "I take this injection 3 times per week, when I feel like it, because it doesn't matter when." They ask "so which regular days do you take it?" When I say I take a med 0-3 tablets per day

They sometimes just decide for me how many I'm getting.

So, I blew up. I am not taking this patronising behavior. I am a grown man, with all mental faculties intact, used to caring for myself as much as meds go (I sometimes need help opening a pot of med, I admit).

But I'm not having them taking away my control of this, for the sake of one night in hospital. It's ridiculous in my case.

I can see that with some patients, this is crucial. But for others, it's infantilising and untrusting.

Apologies to the poor doctor who got an earful about this.

It is the intolerable wait for PAIN meds that bugs me most here. You're lying there, in agony, while they faff around for up to an hour, getting 2 busy nurses together at the same time to dispense a controlled med. At home, I just have them by my bed.

This.

Every time someone proposes a blockchain, I tell them that they could do the same thing much better with a regular database and decent organizational governance of the centralized point.

Interesting how many remakes there are in contemporary pop.

The hospital has the radio on and I've heard a version of Shakira's Whenever, Wherever and then some butchering of an awful original, Blue (Da ba dee da ba dye).

Great. Things were going so well, and then I get an emergency call from the hospital saying that my blood test results are massively off and I need to come in urgently for a blood transfusion.

Another day, another dialysis session. This time, I had an "error emptying upline tank" when running a chemical disinfection after a reverse osmosis machine alarm, which necessitated a call to the techs.

I wish I knew not what all these words meant!

There are, also, legal risks for organisations hosting articles in perpetuity. Every article published increases the risk surface ever so slightly. I wonder whether we might see time-limited publications mooted - to reduce publisher perceived risk. Would be terrible for knowledge.

The self sustaining nature of research publication relies on organisational persistence. If you take a one-time fee for an article to be published, forever, what's the future of your server bills? APCs then simply become a pyramid scheme, stacking deferred costs on future revenue anticipation.

So I guess the moral of the story is: if you're a cemetery get famous quickly

OK, so in the first three weeks trying to recover from the brachial neuritis I've regained maybe 10% motion in my left arm and shoulder. Disproportionately good progress and heartening. Is my left arm still basically paralyzed? It is. Am I working my socks off to get it back? I am.

Is physiotherapy absolutely exhausting and making me want to scream? Yes, it is.

Sample of corporate training: "You are about to leave the office. How should you behave?

A. Shout that you are leaving and not locking the door.
B. Leave the door wide open with your PC unlocked.
C. Lock your PC, lock the door, and leave quietly.
D. Grab a stapler and staple yourself to the desk."

I over-dialysed last night. Tried to pull almost 4L of fluid off and had horrendous cramps in the night. This is what happens if you get the calculation a bit wrong. And now I feel wiped out and sick. Not great!

Went out on a dog walk for the first time in ages. I just haven't been able to venture, even around the block, for at least a couple of months. New chair is liberatory.

A picture of me, in my wheelchair, with my dog, Robyn.

I love seeing some of the grants and fellowships available in other disciplines. Reminds me that some of our own must seem quite niche.

"The Lizard Island Doctoral Fellowships program supports field-intensive research at Lizard Island Research Station (LIRS) by outstanding PhD students worldwide"

Want this one:

The Forrest E. Mars, Jr. Chocolate History Grant has a special emphasis on uncovering and sharing chocolate’s role in global history as well as its influence on heritage and culture

My speaking engagements are much scarcer at the moment, owing to severe health difficulties, but I will be giving a keynote virtually at the First International Conference on Digital Humanities at Zhengzhou University, China on the 10-12 October. Topic tbd.

New dev machine setup continues. Got Atuin running on it this morning. An incredible project for anyone who uses the shell daily, across machines. Built by @ellie.wtf.

The inside of my new PC, with lots of rgb lighting Side view of new PC with watercooling

Using IKEA "click and collect" and the whole process is mysterious. Gives a time range for collection at some arbitrary supermarket car park 5 mins from our house, to which they couldn't deliver. Then says it will tell us when it has arrived. Seems very unlikely it will be there on time.

Blimey. It worked!

Probably the same kind of rig that temporarily brought down our Knowledge Commons infrastructure on Friday. Such a WASTE of technological capacity and our staff's time.

One of the major challenges of getting out of hospital is rebuilding the muscle mass in your legs that you lost from being bedridden for weeks. Every small use of these muscles feels like a punishing workout - and not in a good sense. Just standing up feels like a huge painful effort.

Yes - very sorry. We suspect AI scrapers, but they were forcing our entire infrastructure offline so I have had to disable profile pages for a temporary period. We're working as hard as possible to restore full service.

Today, we will see Cirque Eloize's dance-circus performance of iD Reloaded.

I am worried about my energy levels, going to this. Just getting to the theatre will take a lot out of me. But this kind of show feels so life affirming to me - it has its own kind of extreme energy.

A picture of Cirque Eloize performing, with 5 acrobats climbing poles and inverting their bodies in various ways

Today, I got my electric wheels. Headed, after work, down to the seafront for an ice cream. First time in a fair while that I have been able to venture so far. Then exhausted and had to lie down.

A picture of me in my electric wheelchair

Wow, someone at the AHRC has a brass neck for treating their own grantees as "research quality".

Each HEI’s formula score is determined by two variables:

research staff (within arts and humanities), this is a proxy for research capacity

AHRC grant income, *this is a proxy for research quality*

TEF is a structural monster, basically using crude metrics to club institutions. The disconnect between actual teaching and the TEF could not be clearer.

The thing that most upsets me about interruptions by illness is what they do to my writing and reading. Takes such a strong intervention to restart these practices when recovering.

And just because the world decided that my life didn't feature enough medical problems, the recent MRI showed up a lesion on my humerus, which they now want to check for cancer.

It looks as though arm abduction is the core function that I have lost. I've got lots of physio exercises to start trying to regain this. My word, they are ridiculously exhausting.

The wheelchair is such a bittersweet addition for me, today. It's a difficult balance between using the chair and using my atrophied legs. It should give me the freedom to get to London without collapsing. But I must try not to lose all my walking ability.

All UK HE news talks of contraction. Bronze TEF providers will be defunded. Research funding is to be more "targeted". Total continuation of the Conservatives' vision for HE, under Labour.

Today: iron infusion in hospital to correct anemia. Electric wheelchair delivery (!! 😁♿). Infrastructure work on Knowledge Commons.

Finding my feet again!

OfS is a disgraceful regulator, actively hostile to the institutions over which it has jurisdiction. It wields its blunt instrument, "TEF", as though at an amateur broadsword contest.

Does anyone have any good recommendations for speech to text software for Linux? The systems on Android work pretty well but I'd really like to use it on my desktop computer.

5 small pleasures in life:

* stroking your dog
* a cup of tea
* when the painkillers work
* reading kind messages
* autumn sunshine

Also, amusingly: a warning system decided to send me an error notification by email while I was off sick.

It did this 44,000+ times. 44k unread emails is new to me.

The physiotherapy has already been really useful for isolating what I can and can't do. I can, for example, with great effort, perform a bicep "curl", if the elbow acts as a pivot. I have some "abduction" but not much. But I just can't lift from the shoulder. Just won't move.

Last night, Mrs Eve and I contended with the dialysis machine set up while my upper arm is paralysed. Essentially, she wired it up under my instruction. Next session, I will attempt to see how much I can do solo. Hoping we can find a balance. It's a lot to ask someone else to take on for 2-3 years.

Indeed, a good piece.

I query one part of it. Says "even OA books must be legally acquired" - but if the books are CC BY-NC-SA, might not downloading, whatever the source, be a legal acquisition? Or perhaps the NC clause blocks that.

Just had the nicest email letter about my book, Warez. Can't say how cheering such letters are when everything else in the world seems destined to burn.

I'm on a 1L per day fluid restriction for my kidney failure. This is because dialysis can only remove a certain quantity of excess fluid per session and I don't pass urine anymore. However, this is not much: 500ml + 2x cups of tea and an apple. Just enough water to take daily pills. Pretty tough.

Long-term physiotherapy exercises for paralysis are the worst exercises. At the gym, you see progress. You pick up weights, then heavier weights, and all is good. With physio, the muscle twitches. Then it twitches a bit more. Oh whoop-dee-doo. So hard to be positive about such progress.

Sadly, you can't magically determine "quality" so easily in advance - and it does nobody ANY favours for UUK to sow the idea that "hobbyist" research happens in UK universities. Bah.

Today, I begin physiotherapy for the brachial neuritis. This is expected to take several years to restore function, although I am sincerely hoping for a result sooner than that. While my fingers and hand work, I can't lift the upper arm at all 😕

It shouldn't be so daunting, but I need to setup a complex, blood-toxin filtering machine every other night. Given that I currently need help cutting up my food, the chances of me doing this without help are not high. So I'll have to ask Mrs Eve, putting more burden on her.

I'm "out of hospital" but not "free of hospital". Just on transport back to hospital now for a checkup and dialysis in-center. Same on Friday. I'm so weak that I fell while getting into the minibus/ambulance. Saved/caught by the operative. Sigh, recovery will take a while.

I'm finally home from hospital. Phew. The arm paralysis is caused by a brachial neuritis - inflammation of the nerves in the neck - caused itself, most likely, by vasculitic inflammation, secondary to the rheumatoid arthritis. This will take years of physiotherapy to undo.

We want people who have complied with the letter and the spirit of the tax laws that they impose on the rest of us. So if you have a lot of money, you should pay a lot of tax and not use legal loopholes unavailable to others to pay less.

I am still in hospital with an uncertain path. The pneumonia and pulmonary edema are resolving and I no longer feel as though I am drowning when I breathe.

But there remains a huge problem.

My left arm is paralysed. My hand works but I cannot move the arm. At all. It's this dead, limp appendage. I can't cut up my own food or do anything that needs two hands. Extremely debilitating and also invisible - nobody can see that I can't use it! But it's useless.

The neurological examination led the neurologist to say she thought there was damage to my c4/c5 nerve roots but she hadn't seen the MRI, then. Having seen it, she now wants to speak to her consultant on Monday, which is ominous. Just hoping there is a physiotherapeutical path back from this.

Fascinated by the details of the Anthropic settlement. It's not training on works you own legally, but training on works you have pirated that is illegal. All 10 of my books are openly accessible, but they're also available to "pirate" on Libgen. Wonder how the class action will deal with that!

I think I agree with this. A major part of my adult self-education has been trying properly to understand statistics - because it holds the key to understanding much of the world.

This is what hurts me so much about those who refuse to be vaccinated on personal choice: my safety depends upon collective vaccination. As an immunocompromised patient, I get far less from a vaccine than regular folk. Hence, I need all others to be immunized to stop the viral spread reaching me.

Today I will have an MRI, at last, to ascertain whether I have a neck compression or a c4/c5 vasculitis causing the arm paralysis.

Upside of harsh fluid restriction: excuse for cooked breakfast, to avoid milk on cereal.

Downside of current situation of paralysis in left arm: I need someone to cut it up for me.

Imagine being brought to rage by an incident that did not happen, reported with fake evidence from a remote continent.

Response, sadly, is more likely to be "yeah, but that's the kind of thing they do", rather than remorse.

Oh dear. BMI now puts me at officially underweight. I was carrying around 7L+ of fluid that would normally be expelled as urine. No wonder I got fluid in my lungs.

A chart showing a BMI of 18.3, marked with a cross in the underweight area

I haven't said much about this, but, just before I went to ER, my upper left arm experienced extreme weakness to the point of paralysis. It's basically useless as I can't raise it at all, although my fingers still work. Could just be "frozen shoulder" but they want to rule out neurological issues.

Compared to not being able to breathe and feeling as though I were drowning, this seemed minor. However, as I get better, this is now a problem. MRI soon to have a look.

I've seen a significant rise in adverts for charity lotteries. Just had one for Muscular Dystrophy UK. Previously seen for Kidney Care UK. Unsure how these orgs can bear risk of potential £10k prizes. Suspect that some insurer has spotted a business opportunity for working with charities.

Oxygen levels are returning to normal. Dialysis fluid overload seems to be resolving. Breathing no longer feels like drowning. But I am still very dizzy and confused, probably from the ongoing pneumonia.