Newest thoughts →

August 2023

For the first time in many years, I won't be (speaking) at the What Happens Now literary studies conference next week. Without remote participation, I can't attend events like this, because I have to have dialysis in Canterbury (or I die).

Thank you to everyone who has given me feedback on the digital preservation project so far. I will be amalgamating and responding to all feedback, but it may take me a little while.

Have had a rough few days healthwise, but am still chuckling to myself about the idea of turning up on Zoom to give a talk, from the dialysis ward.

"Hi, thanks for having me here today..."

Three months ago, for my birthday, I got a JU-06A. I've been too unwell since then to find the creative spark to try it. Today, I busted out the harmonicas, guitars, drum machine, and this new toy and made some chuggy downtempo funk.

Me, currently can't walk more than 2 minutes, wheelchair on order, googling "London marathon wheelchair entry".

Mrs Eve: I think you might be being a tad over-ambitious here.

Hmm. Bluesky seems to have started giving popup notifications on the mobile app... But I can see no way to disable it. Am I missing something?

Did 100% of the dialysis machine setup and patient (me) connection tonight... Without any nurse supervision or oversight for the first time. And it all looks good!

Another strange learning from haemodialysis. Dialysis seems to exacerbate infection symptoms. I do not normally get fevers etc. because my immunosuppression masks it. But I sure as heck do now I am on the dialysis.

This is NOT a moan about my employer but a note on my personal psychology.

I have needed quite a bit of sick leave this year, due to new kidney failure. But this then makes me feel guilty taking annual leave. However, the former is not a break/rest - it was spent feeling awful!

I gather this is quite common among disabled people who work - a constant sense that you need to catch up and don't feel you can take a holiday due to having taken sick leave, even though they're not equivalent.

My employer, as I note, is very good about this - and as a result I feel loyal to them and don't want to abuse it in any way - it's just the personal sense that is hard.

I don't give many talks these days as my health with kidney failure isn't up to it and I find it extremely tiring, but I am giving a number online in Sept for those interested.

6th: Digital Preservation Coalition
7th: Sheffield OpenFest 2023
8th: Lower Decks Janeway Conference

Your manuscript was reviewed by two expert peer reviewers and its editor. The full text of the reviews is included. Based on these reviews, we would like to accept your paper for publication pending a round of light revisions.

Stop. Party time.

BTW, if you ever doubt someone's need for a blue badge, the bloody application form is stricter and longer than applying for a passport or driver's license. Just another punitive measure against disabled people/people with disabilities.

For 6 months now, owing to stopping my arthritis meds, my ability to walk has gone radically downhill. I now require a stick and even the smallest distance is exhausting and very painful.

We can't go out and do things, really, because we know I can't walk (say: visiting the local wildlife park). I have been told that this will not improve until I have hip surgery/a replacement.

Still, at least some of them look badass.

I am, therefore, considering a wheelchair. This is quite a large psychological shift. Indeed, somewhat upsetting. I know it should not be and that wheelchairs are ENABLING. But no matter how much disability theory I know, I still *feel* another sense of loss for needing it.

This evening we watched _Never Look Away_, a fictionalised early biography of Gerhard Richter. Superb, even if quite a bit of historical revisionism re. knowledge of Heinrich Eufinger and Aktion T4. I loved the reworking of Herr Heyde, Uncle Rudi, Tante Marianne, and Ema.

The 2008 retrospective at Tate Modern was also incredible. I went twice and remember it vividly.

I saw something the other week that said that the true way to tell if you are hungry is whether you want to eat an apple, because "nobody just has cravings for apples".

Rubbish! Apples are about my favourite food -- especially stewed. I crave them often! https://t.co/1zapJGh1xP

God. This platform without "block" would really be the limit. The cesspit conversion would be complete. How on Earth could you think it "doesn't make sense" not to have your timeline overrun with abusive trolls?

The worst thing about the dialysis ward is that, suddenly, one day, people you've seen week in week out don't turn up.

"Where's Stewart?" you ask.

"I'm afraid he died last week", the nurses say. Age 35.

Sure, that's life. But it's at such a higher rate/intensity here.

A new Covid variant is on the rise – how worried should we be?

Some of this is quite good: "But for those who are suffering with long Covid, are immunocompromised or who lost a loved one... any news of increased prevalence... must be worrying."

https://www.theguardian.com/commentisfree/2023/aug/18/new-covid-variant-worried-subvariants-mutate

But it then goes on to note that while vaccines are the best defence, so it won't be so bad this time... "In Britain, only people over the age of 65 are eligible to receive a Covid booster this winter, which is disappointing"

Then ends with "there is a risk to crying wolf too many times".

We haven't "cried wolf". 2/3rds of deaths were disabled people. It's a deadly killer virus. Just because it doesn't kill able bodied people and right-wing psychos have skewed the narrative doesn't mean crying wolf.

Another bit of good health news: I misread 540k as 5.4m with an extra zero -- so my BK virus levels are actually the lowest they've ever been!

Progress with Luka update: he will now eat from my hand (if I am sitting) and will happily snooze next to me. He still won't let me touch him though and it scares him too much so I'm not trying. Poor little doggy. Small steps still.

Having spent all day yesterday on a drip in hospital, today, dare I say it?, I feel a bit... Better! Hurrah!

Now, mustn't overdo it and relapse.

I've said this before but surveys that ask "would you recommend this A&E department to a friend?" are nuts.

"If you are dying, then YES, I would recommend the emergency room."

Would you recommend chemotherapy?

Err, if you have cancer, yes.

I mean, what's the comparator? Would I recommend going to the ER instead of a trip to Disney World? No. Would I recommend going rather than dying? Often, yes.

Someone will now reply that they would prefer the ER to Disney 😂

A very old woman here was just given dioralyte.

Her verdict, at maximum volume: "that was fucking disgusting!"

Accurate.

Well, I've ended up in A&E this morning on the advice of my renal unit. Severely dehydrated, risk of steroid non-absorption (and subsequent adrenal crisis). On a drip in a corridor 😕

Horrific dialysis session today. Severe vomiting, massively upset tummy, chills like I have a fever. I'm being scheduled to see my consultant about this.

Great. I've been being really sick over the past week. Looks like it's opioid toxicity due to kidney failure/non-clearance. So now I can't even take the pain meds.

Never thought a cruise holiday would appeal to me, but given that all travel is now very difficult, *dialysis cruises* (I'm not kidding) suddenly sound quite good, if expensive. You can reclaim some of the cost, but the dialysis is almost £6k.

https://www.cruisedialysis.co.uk/package/norways-land-of-the-northern-lights-onboard-ambassadors-ambience-sailing-from-london-tilbury-essex-uk-20-march-2025-17-nights-from-1399-per-person/

Good incentive not to miss the boat in port: you die if you do!

Urgh. Echocardiogram today and then dialysis. But my central line - the tube in my chest - has started hurting when I breathe in. So I now have to see the IV access team to have it checked. #whatNOW

Ah yes. Because everyone knows that the best way to "catch cancers earlier" is to get rid of targets saying that you should, err, see patients sooner.

It is done. Final MS off to Stanford UP for production. Several years of work. I will now go collapse in a heap.

Revisions letter setting out changes in light of review. Phew.

And... It will be open access, as are my other 9 books.

This book was written under the most trying set of personal health challenges. Total destruction of my kidneys by BK virus & uncontrolled rheumatoid arthritis causing constant severe pain & nausea. The most serious of my thanks, then, go to @GiacoChiara & all my medical teams.

Despite massively reducing my immunosuppression my BK virus levels remain high at 5.4 million DNA copies per ml of blood. At this level we can assume the virus is continuing to erode my residual kidney function, while also blocking any transplant possibility.

The thing I find most depressing about reading Private Eye is that, every issue, they shine a spotlight on corruption. But it rarely seems to fix anything. Another example of mere information availability being insufficient.

I can always see why the taxpayer argument is used, but I've also always said that it's unhelpful because it excludes a huge proportion of non-taxpayer funded research, which should also be accessible. https://x.com/jessicapolka/status/1689661462074044416

Further, it plays into neoliberal discourses around taxation, where any recipient of any public funding must be subject to the most intense, almost punitive, scrutiny/transparency demands, in order to make this funding unattractive.

Suber is also worth reading on this, in more detail: https://dash.harvard.edu/bitstream/handle/1/4725013/suber_taxpayer.htm

Things the UK government is happy to spend £1.6bn on: a defective, "death-trap" (The Fire Brigades Union, 2023), legionella-infected barge to house/punish asylum seekers.

Things that are too expensive: protection for their immunocompromised citizens during a lethal pandemic.

Oh yeah! I'm now fully dialysis trained! I just need the plumber and electrician to do the house modifications and for my wife to be trained in emergency safety protocols and I can do it at home!

Pretty exhausted and nauseated upping my dialysis sessions from 3x per week to 5x during the training. But I am now a haemodialysis ninja, connecting myself, running the circuit, and unwiring.

At least one bit of positive news: we complained bitterly about the Spring booster not including those who live with immunocompromised people. That has at least been addressed.

Well, I thought "Subspace Rhapsody" was absolutely brilliant and hilarious. Nurse Chapel's "I'm Ready" a song highlight, only just upstaged by the Klingon R&B number 😂

A catastrophic decision for the most vulnerable, who rely on *population-wide* immunity, as they (we/me) can't produce a significant antibody response, even with targeted vaccines.

I am sorry to report (actually, I'm not sorry, I'm just having a good moan on social media) that my hip damage is also rapidly worsening. It hurts 24/7 and wakes me up in substantial pain 3+ times per night. Makes the most horrific noises too (crepitus) and walking is difficult.

This is the problem with rheumatoid arthritis that isn't properly controlled. Not only does the autoimmune inflammation hurt like hell itself, but it permanently damages the joints it attacks, leading to osteoarthritis and joint collapse. Double the pain/fun!

Today's dialysis did not go well and I was violently sick in the car on the way home. I also had chills throughout the session. That said, I think the former could be at least partly due to ongoing uncontrolled rheumatoid arthritis and extreme pain.

Day 5 of 9 of home haemodialysis training for me. Today's goal is to get from machine switch on, through lining and priming, via patient (me) connection, to HD session, and finally washback and safe disconnection, without any nurse intervention.

I did pretty well! Also learned how to change the dressing on my central line.

STAR TREK: THE NEXT GENERATION's episode, "Force of Nature", from 1993 - 30 years ago - is a powerful analogy for climate change. It turns out that warp drive damages subspace.

"I don't know how easy it will be to abandon warp drive. We depend on it."

"It won't be easy at all".

To build my AV fistula so that it can be used for haemodialysis, I have to exercise the hand, using this device. The advertising strapline is "grip of a warrior" and I find it impossible not to say in a Worf voice.

Day 4/9 of home haemodialysis training today. Almost halfway through and I haven't made any lethal mistakes in the wire-up yet...

Day 3 of home haemodialysis training for me. I've got loads of musical memory aides already. 🎶The "A"-line's connected to the saline🎵

Wired up

Training nurse today: "we're upgrading you to a one-way valve for when you do it at home, because otherwise, if you wake up bleary and disconnect the wrong line, you'll bleed to death".

Me: "that's good. It's been a longstanding ambition of mine to not bleed to death".

Today is day 2 of 9 on home haemodialysis training. 🩸

Aiming for less fluid reduction and hoping to avoid cramps, nausea, and headache.