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,