Psoriatic Arthritis and Fatigue

I’m still not well enough to tackle the reader request posts, but I thought it might be interesting for me to explain why I’ve not been well enough for a few weeks to keep up a regular posting schedule, and also why I might have seemed down if you follow me on social media. I have a relatively common illness, but one that’s not particularly understood by people who don’t have it, so I thought maybe some people might find a post about it interesting.

In 2011, I started getting excruciating back pain. It was intermittent, but so bad that at some points if I walked more than ten metres or so, or stood up for more than ten minutes, I’d get pain in my back so bad that my leg muscles spasmed along with it and sweat would pour off my face. I went more or less overnight from being someone who would think nothing of walking five or six miles to someone who at times literally had to crawl up the stairs when I went to bed, because I couldn’t stand up long enough to walk up thirteen stairs.

However, I am fat, and so like all fat people with a health problem I was told that I was just too fat, and that I should just take paracetamol and lose some weight. And when I started to get stabbing pains in the joints in my hands, I assumed that was RSI, because I literally spend all day every day typing at a computer, I have bad posture anyway (I have the same low muscle tone that many autistic and dyspraxic people have) and I type in a ridiculously heavy-handed way using different fingering from the norm, so it made sense I’d get RSI.

So it wasn’t until Christmas 2015, after my foot literally swelled up to three times its size, which can also be a symptom of severe heart disease, that this pain which had had me in agony for four years at that point was actually taken seriously by a doctor. At that point, after various tests, they came to the conclusion that I probably had psoriatic arthritis.

(I say “probably” here, because in a couple of minor ways it presents slightly differently in me than in most people. But on the other hand, I have the major symptoms, I don’t have any of the signs that would be present with the other things that cause those symptoms, I have psoriasis — and people with psoriasis have a one-in-three chance of developing psoriatic arthritis — and it first manifested in my early thirties, which is about the normal time for it to turn up.)

Psoriatic arthritis is a form of arthritis which comes as part of the skin condition psoriasis. For those who don’t know, psoriasis is an autoimmune disease — basically, your immune system starts to attack your own skin. It’s very painful, and irritating, but luckily mine is more-or-less under control with steroid creams these days. But for years in my twenties it was so bad that I actually fantasised about getting my legs amputated so they wouldn’t itch so badly.

(Incidentally, for those for whom steroid creams *don’t* work, the one other treatment I ever found that worked as well for me was a mixture of liquid vitamin E and honey).

In a little over a third of people with psoriasis, your immune system decides that it’s *so* desperate to have a fight with something that it won’t just fight infections (like it’s meant to) or your skin (like it’s not meant to, but it does with normal psoriasis), but it’ll also have a go at your kneecaps and backbone and knuckles as well.

Basically, my immune system is an utter bastard to me, and wants to make sure I can’t walk or type or anything, and that I’m itchy all the time. But the worst thing about psoriasis and psoriatic arthritis is that it causes massive amounts of inflammation.

Now, you probably know what inflammation means in a general way — although you won’t understand just how appropriate the “flam” in inflammation is until you’ve had an inflammatory illness for a while, and you realise that you can actually feel the heat radiating off the affected joints from a good distance away. But inflamation is itself a bastard. It’s an immune response, and it’s basically designed to last only a short term while you’re killing off bacteria and viruses. But long term it raises your blood pressure (I have had hypertension since around the same time my arthritis kicked off, and this is not a coincidence), and massively increases the risk of cardiovascular disease and of diabetes.

It also gets much worse when you’re stressed, which is unfortunate, as when you have a stabbing pain in your back that means you can’t even walk up the stairs without being in agony, and you need to go up the stairs to get the cream you use to treat the itching that’s making you want to tear your own skin off, and you have a blood pressure headache, you often feel quite stressed.

Now, the pain from my arthritis can be dealt with, now that I know what it is. I take a dose of immunosuppressant drugs every day, and they keep it down to the point where I can walk a reasonable distance with a stick (I can do as much as half a mile on a good day before I need to sit down, so long as I take it easy). I was able to deliver leaflet rounds again for the 2017 election, which I hadn’t been able to do much of for 2015.

But while these things lessen the inflammation, they don’t stop it altogether — and it’s an immune reaction, so it kicks in whenever I’m ill, and since Christmas I’ve had three or four mild colds.

And while the physical aspect of inflammation is bad, the mental aspect is what affects me worst.

First, inflammation affects the brain directly, and is one of the leading causes of depression — there’s some evidence to suggest, in fact, that *all* depression is an inflammatory response — so whenever the inflammation affects me particularly badly, I develop all the worst symptoms of my depression. I’m even less sociable than normal when it’s hitting me, and so I’ve spent a lot of time recently turning down invitations from well-meaning friends.

But even worse than the depression is the fatigue.

Arthritic fatigue is something I *wish* I had known about sooner, even more than any of the other symptoms. I spent years in work suffering because of it, and I blamed it on my sleep conditions (I have sleep apnoea, and also probably have Delayed Sleep Phase Syndrome). But for a long time I was so tired when in my last job that there were whole days when I couldn’t get any work done at all because literally all my attention was spent on not actually drooling — no exaggeration at all there.

Those of you who don’t have diseases that cause chronic fatigue won’t really be able to appreciate this — you may understand it intellectually, but not truly grok it — but there is a level of tiredness that is literally life-destroying.

You might remember that when you’ve had the flu, you have felt extremely tired and wanted to do nothing but sleep for a day or two. That’s part of the same immune response that causes inflammation — your body is flooded with chemical signals (cytokines) that tell you to do nothing at all and not move, to conserve energy that your immune system is using to fight off the infection and repair damage.

When you have arthritic fatigue, your body is constantly flooded with those signals. *ALL THE TIME*. For days, weeks, months, or years on end. You’re exhausted, you can’t do anything, and sleeping brings no relief whatsoever — you wake up just as tired as when you went to bed. You begin to have a very visceral understanding of the phrase “burned out” — you feel, literally, like your insides have been burned out and that you’re a hollow shell, uninhabited by a human mind (you even feel as hot as the phrase implies, thanks to the inflammation). In my case I become aphasic — I lose words, as if I’ve had a stroke (luckily, I have a very large working vocabulary, and can often find a synonym even if I can’t find the most appropriate word — I can imagine this being truly disabling for anyone who is less verbal than me to start with). I also lose what little short-term and working memory I normally have — I can literally have a conversation and then forget it ever happened within five minutes.

Anyway, thanks to those colds, that’s how I’ve been feeling for the last month. Many days I’ve not been able to do basic things like shower or walk the dog (don’t worry, dog-lovers, he’s had at least one walk every day because my wife walks him too, but we try to give him two walks a day and sometimes I can’t do my share), I’ve had to order takeaway because I’m too tired to cook, I’ve been incapable of doing anything other than binge-watching Deep Space Nine on Netflix. I don’t even *like* Deep Space Nine much, but it’s at the right intellectual level for me when my brain’s not working (the last time I binge-watched it was when I was recovering from a severe illness in 2016). And I’ve spent long periods literally just staring into space, feeling hot and tired but otherwise not feeling anything at all.

I’ve been in no state to write much in blog form — I’ve been able to produce some stuff for the second edition of the Monkees book, because the work I’ve done on that this month isn’t creative work, it’s mostly gap-filling, chasing down references, fact-checking and so forth, which is a lower-level skill than more creative writing — but I think I’m finally starting to get better (and at least now I know that “better” is a possibility in the future — for several years before my diagnosis I didn’t know if I could ever do anything to get rid of the fatigue).

So anyway, if I’ve been more flaky than usual since Christmas, that’s why. I should be better soon.

And for any of you who have psoriasis, if you start getting tired all the time and develop lower back pain, don’t let the doctors tell you it’s your weight. Insist on a referral to a rheumatologist, and you might be able to avoid ever letting it get as bad as it has for me (and it’s nowhere near as bad for me as for some — I’m a minor case).

Oh, and one more thing — this kind of thing is another reason why I get so annoyed at the research priorities of autism researchers. There is a *huge* overlap between people with psoriasis and autistic people, and I think you can tell from this post which one actually affects quality of life more. Rather than spending millions on stopping us flapping our hands so much, maybe look into this kind of thing? Just a thought…

This blog post was brought to you by the generosity of my backers on Patreon. My various stress-related illnesses and disabilities make this the way I support myself, and I’m more grateful than they can know for their backing,

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Autism, Empathy, Solidarity and Intersectionality

First, I want to apologise for the lack of posts this month. I’ve been very unwell since Christmas, battling fatigue and inflammation constantly (it’s hard to understand how literal the “flam” in “inflammation” is until you start suffering from a chronic inflammatory condition and can feel the heat radiating off your joints), as my immune system has been repeatedly hit by minor infections. I’ve managed quite a bit of writing since finishing The Glam Rock Murders, but most of it has gone on the second edition of Monkee Music, which sould be out next week, so not much has turned up here this month. I’m sorry.

I will be getting round to the various blog posts I’m committed to writing as soon as I am physically able, but today, even though I am not really well enough to write, I want to vent about something, and that is the constant bigotry against autistic people which even supposedly progressive people feel perfectly entitled to engage in.

In the last week or so, on Twitter I’ve seen:

A nasty group of transphobic shitheads producing an “education” pack aimed at teachers full of anti-trans bigotry. One of the things in it was “trans people are X times more likely to be autistic”, where X is some big, scary, number.

Trans people arguing with this shittery, but in doing so saying “only five percent of trans people are autistic so stop trying to scare people”. So, you know, thanks for implicitly accepting that being autistic is something to be scared of.

Disability Lib Dems retweeting stuff from Autism Speaks, and also having some fucking horrible ableist language about us on their website, including the claim that we have no empathy, no ability to make friends or understand other people, and that we are “being appearing [sic] to be stupid or thick”. They’ve since apologised for the tweets and started following and RTing some actual autistic Lib Dems, but the ableist stuff about us is still up on the website.

A left-wing sex-workers’ rights campaigner doing a long blog post about the alt-right’s influence in nerd spaces, saying in the middle of it “One of the main symptoms of Asperger’s Syndrome is a pronounced inability to empathize with others” and then doubling down on this and making herself out to be a martyr under attack when called on this.

(The worst part of this, incidentally, is that she says this immediately after saying ” If you’ve never experienced any form of oppression, it’s easy to dismiss threats of violence or racial/misogynist slurs as “for the lulz.”… If you’re not in a group of people that has been targeted for genocidal extermination, then talking about throwing people in ovens and gas chambers means you’re just defying uptight PC culture.” Disabled people were literally the first group targeted for extermination by the Nazis, and Hans Asperger worked under the Nazis and sent disabled children to Spiegelgrund, a facility for exterminating disabled people. But apparently his view that we lack empathy still takes priority over our statements that we don’t, because no-one’s more of an expert on empathy than someone who kills disabled children to enforce Nazi racial purity laws…)

A load of other people who are normally on the side of the oppressed, like Brooke Magnanti, retweeting this hateful shit with approval.

Joyce Carol Oates saying autistic people “are said to feel no empathy w/ others; often don’t make eye contact or even seem aware of others.”

Honestly, at this point, there is literally no excuse for anyone to still be making this claim . Anyone who spends two seconds on Google before running their mouth off about things they have no knowledge of would find things like this post by Oolong. I don’t agree with everything they say there, and could probably write a post as long as this one picking nits with bits and arguing with other bits. But that’s to be expected when any two people discuss a subject that actually matters. But Oolong’s post, or the thousands of others by actually autistic people, show clearly that we are not lacking in empathy.

At some point when I’m more well, I’m going to talk in more detail about what causes neurotypicals — who, on aggregate, have far less empathy than autistic people in my experience, though as with everything there are a few honourable exceptions — to believe that autistic people have no empathy. There are reasons this belief persists, but it’s utterly incorrect.

What I’m concerned with now is that it is completely acceptable among even otherwise progressive people to dehumanise autistic people in this way. The claim that we are lacking this basic aspect of shared humanity, made with no evidence other than the prejudices of the neurotypical in question, goes utterly unquestioned. Even among people who would be horrified at other commonly-expressed bigotries like homophobia or hatred of immigrants, it’s apparently fine to spout eugenicist rhetoric about autistic people.

I don’t claim we are the most hated group — there are plenty of bigotries that are still acceptable, and trans people, immigrants, and fat people in particular are often dehumanised in very similar ways (and often by the same people, which is why it hurts all the more when members of those groups choose to throw autistic people under the bus). But anti-autistic bigotry is definitely among the current acceptable prejudices, and in particular calls to eliminate us from existence are entirely too accepted.

I’m just… I’m just worn down by seeing this stuff retweeted unthinkingly, sometimes by people I would consider friends. I’m sick of not being able to assume that someone else who I agree with will recognise my shared humanity and act accordingly towards me.

Since the Brexit result, and with the Trump election, it has been increasingly clear that Britain and the US are heading towards fascism. In times like that, solidarity between marginalised groups is absolutely necessary for any of them to survive. People of good will need to oppose attacks on immigrants and sex workers, transphobia, Islamophobia, anti-semitism… I have always been a supporter of intersectionality on the basis that it’s the good and moral thing to do, but now I’m more convinced than ever that we need to take an intersectional attitude from a purely practical point of view — if we don’t hang together we may well hang separately.

And so I am asking people, even if you think that autistic people like me are the emotionless, unempathic monsters you claim us to be, stop saying so. Stop doing the work of those who want to pick off the marginalised groups one at a time for them. If you really have so much empathy than I do, you can show it by showing at least as much solidarity as I do.

This blog post is supported by the incredible generosity of my backers on Patreon. Why not join them?

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Welcome to the Multiverse Free For A Week

Over on Mindless Ones we’re celebrating ten years of that site’s existence, with a mixture of classic old posts and new ones, so for my contribution I’m giving away the short ebook Welcome to the Multiverse, a look at Grant Morrison’s Multiversity which I originally serialised over there back in 2015. It’s free for a week, so just click on over there to get it.

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Reader Request Week Next Week

I’ve been having problems getting posts up here the last couple of weeks. Between getting The Glam Rock Murders published, reformatting my ebooks, working on the second edition of Monkee Music, and being ill (I’ve been ill more days than not since Christmas) I’ve not had much space in my brain for blogging.

But it’s more than that — politics has nothing in it to inspire me to post right now. Everything is bad, but it’s a tedious, predictable, kind of bad — like being trapped in a two-second loop of Moe poking Curly in the eye over, and over, and over again for two years straight. At some point there’s just nothing else to say — my country and my wife’s country are both engaging in national acts of self-harm unprecedented in post-War history, everyone knows that’s what’s happening, but nobody in power is willing to do anything to stop it because it might disturb their own plans for short-term gain. There is no hope of anything other than more of the same, and nothing any of us can do about it. There’s only so many times you can say that. I’m working on some posts about The Good Place, but those are taking a while to come together (they’ll be worth it when they do though).

So, since I’ve not been inspired to post, I’d like suggestions from people about what I should write. I’ve got two book reviews I’m planning on posting soon — a book by Matthew Rossi and an anthology that Lawrence Burton put together — but those require a slightly different kind of mentality than the depressed state my brain’s currently in.

So, with the proviso that I’ll get those two done as soon as I have spoons, and that I may just have nothing to say about the subject you choose — what would you like me to write about here next week?

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Apologies for Continued Lack of Posts

I’m a little burned out after completing The Glam Rock Murders, and I’m also working on the second edition of Monkee Music (which should be out in a couple of weeks), and have been doing a lot of admin stuff with my books — I’ve moved the ebooks from Smashwords to Draft2Digital, and have been fixing all the formatting of those (Smashwords has — or maybe had? — terrible formatting standards that made for a poor reading experience. D2D is *much* better), and in two cases I’ve also fixed the actual text — in the case of the first Beach Boys book there were quite a few egregious typos which somehow got past four different people’s proofreading, while in the case of my book on the Kinks I used some phrasing which I didn’t realise when I wrote it is a mildly transphobic phrase, so I’ve fixed those.
(It’s funny, actually — a lot of the comments I got on that book were about how it was full of that political correctness gone mad that they have nowadays, but checking over it I winced slightly).

Any posts I do make in the next week or so will be on Mindless Ones, as we’re doing a Mindless Decade celebration of the site’s tenth anniversary this month, but once I’ve stopped having to do this big chunk of writing-business admin and work on non-blog writing — probably next week — I’ll have more blogpost-writing energy. I’ll try to get some linkblogs up between now and then.

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New Post for Patreon Backers Only, on The Monkees’ Good Times!

I’m currently working on a second edition of Monkee Music, my book on the Monkees, which should be out by the end of the month. Obviously backers at $5 or higher will get their free copies, but I thought I’d give all my backers a teaser of the new material, which won’t be posted to my blog itself.

This is the entry for Good Times!

Be warned… it’s much longer and more discursive than the entries that make up the bulk of the book — this one’s over 8000 words long, and has a tangent talking about Umberto Eco’s description of postmodernism…

If you want to read it, remember that Patreon-exclusive essays are available to all backers, at even $1 a month.

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Linkblogging for 10/2/18

Sorry for the lack of posts in the last few days — I’ve been working on moving my ebooks over from Smashwords to Draft2Digital, because Draft2Digital is better in every single way, both for writers and for readers (I’m going to leave the Beatles book and Four Stories on Smashwords, because the Beatles book is embarrassing and everything in Four Stories is also in the longer collection Ideas and Entities, so there’s no point porting those over). This has required recreating all the epubs, which is taking a while when there are about twenty proper books plus a bunch of individual short stories.

I’m also working on additional chapters for the second edition of the Monkees book, which is taking a while (the entry on “Good Times!” is currently over 5500 words and I’m only about 70% of the way through it). I’ll have another Batpost on Monday, and I’ll probably get some more posts on politics and stuff up next week, but for now — have links.

How to design social systems without causing depression and war

The fragility of body positivity

The Institute of Gremlins 2 Studies (warning, contains flashing-light gif)

A prime number that is also ASCII art of a giraffe

The Twenty-Nine Stages of a Twitterstorm

The place for radical Liberalism in the twenty-first century

Orson Scott Card: Mentor, Friend, Bigot

Charles Stross on why he doesn’t read much SF any more

Andrew Rilstone on Tim Farron’s nonsense article about how the politically correct brigade have made it so that you can’t even say you’re a Christian any more these days.

And also by Rilstone, a review of Doomsday Clock #3

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