First read the introduction.
They finally referred me to the hospital.
I was finally referred to the hospital!
It was covid hell at the time, so my usual hospital wasn’t doing their usual thing. So I got referred to the hospital near work instead.
I sat down with the doctor in the rheumatology department, and in about thirty seconds she told me:
“You’ve got psoriatic arthritis. And that’s causing your joint pain too.”
And this was a slightly surprising moment for me because I never thought that my skin issues and joint issues could have been connected. I mean, I feel like an idiot now. Maybe I should’ve looked up my symptoms and tried to learn more about what I— but I always thought it was best to avoid letting the internet diagnose you.
But anyway, the doctor told me, “Your GP should have asked you about joint pain.”
And I guess they didn’t.
“Is there anything I can do to stop it?” I asked.
“Yes. We’ll start you on some m— metho— me—
Sorry, but even writing the name of that medicine makes me start to gag. I’m going to write it once, and then I’m going to refer to it via a made-up name to try to avoid the nausea.
The real name of the medicine is
methotrexatebut I’m going to refer to it as “medifate”.
“Yes. We’ll probably start you on some medifate. Today I just need you to do some tests.”
(Oh no, another blood test!?)
“And, um—”, I muttered. “What kinds of tests do I need to do?”
“Let me see.” She turned to her computer and started filling in forms. “First go to the blah blah department for a scan, then the blah blah blah department for some more scans, and then go to the blah department for some blood tests.”
(I’ve written “blah blah” because I can’t remember the long fancy names of those departments.)
“Uhh… Blood tests? As in… more than one blood test?”
Dr Gravy… not her real name.
Dr Gravy… tilted her head towards me, and she gave me a look that has now become familiar to me over these past four and a half years, with her eyes peering over her sunset glasses, knowing and sympathetic, with sharp pity, like she was about to laugh and sigh at the same time.
“You don’t like needles?” she asked, smiling sadly.
I spent most of that day sitting in hospital waiting rooms, and occasionally getting scanned and prodded.
The blood test was much bigger and longer than my first one. They took eight vials of blood, my personal record, so I was pleased that I had done that first one at the GP already, as a kind of warmup. And as always, the blood test nurses were patiently amazing.
And that was my first time getting a Subway at the hospital Subway.
“Mr Wilson, you’re back! Let me see it.”
One boy came to meet me at the classroom door.
“Oh no. It’s—”
He pulled a nervous smile and grappled with the morality of what to do with the bad news.
He paused and then pointed at my hairline.
“Mr Wilson. It’s still there.”
“Oh yes, thank you, I know. But no, I mean— Don’t worry. The doctor made a plan.”
The plan was to get the tests done, and then I’d get invited back to the hospital in a couple of months. However, when the scans came through, they came out so bad that they called me back one week later.
Apparently, my joints were looking ‘not that good’. And my vitamin D was at zero. It wasn’t low. It wasn’t just like, “You need to spend more time in the sun.” No, it was at artificially low levels, so much so that they couldn’t detect a single trace of it in my blood. The results sheet came back with lots of warnings. WARNING WARNING. And the doctor explained to me that my vitamin D was so low that they don’t even bother making a category for it on their system.
“But why?”
Well, psoriatic arthritis is an autoimmune condition. For some stupid reason, my own body decides that my own skin is an EVIL VIRUS or bacteria or something. My body thinks that my own skin is a foreign object that needs to be killed and removed. And the same goes for my joints! For some stupid stupid reason, my body thinks that my own joints SHOULDN’T BE THERE, and so it attacks them.
My own body attacks itself all over, and this is what causes the scabs and all the joint damage.
“Fighting my own body” uses up energy, and it uses up vitamin D. So if I do actually get ill, for real, then I won’t have any vitamin D left over. And that would be bad.
Back then, I needed to take Vitamin D pills, but not the ones you can buy at the pharmacy, no. They’re not strong enough, no. I had to get some stronger ones prescribed, just until the arthritis gets under control, that’s all. And I took them every day.
“It’s dangerous,” I said. “Because it gives me a bit more confidence with… you know… navigating through the health system and stuff.”
“Oh that’s nice.”
“Yeah.”
“Wait. Why is that dangerous?”
I had to do a long call all about medifate, and how it would help me.
You see, medifate is a strong poison, a cytotoxin. This is helpful because it can poison me, which stops my immune system from working. And that’s good because my immune system is causing me so many problems. But it’s bad because there’s a global pandemic going on and it leaves me immunosuppressed, so I’m more likely to catch illnesses, with less chance to fight them off, and I don’t work from home, no. I work in-person, in-school, because I work with vulnerable kids.
But that’s ok(?) because I get early access to all the new vaccines, and I got two covid vaccines before most people got one, and I also got a flu vaccine and a pneumonia vaccine, and I can get a shingles vaccine at some point in the future. But yes, I still get free access to covid vaccines to this day, even though they’ve removed it for everybody else, which is very silly because everyone should get it for free of course!!!!
And the instructions were clear: If I get really ill, I need to stop taking medifate until I get better again. And I need to take it once a week, easy. Eight pills, once a week, every Friday, easy. And I need to take folic acid once a week, a day before, to reduce the nausea, easy. Wait. What do you mean, nausea?
And again, Dr Gravy looked at me over her sunset glasses.
I took my first dose of medifate and everything seemed fine. I heard the familiar rattling of the bottle for the first time, and I downed the eight pills on a Friday, easy.
It had to be Friday because I was getting regular blood tests during the week, and they needed enough time to: (a) spot any effects from taking the medicine, and (b) tell me to not take it if anything went wrong!!
But all seemed fine. I was fine.
The woman at the hospital Subway began to recognise me.
It was the little treat I got myself after a blood test, six inch, hearty Italian, some vegan filling, a cup drink, “and a rainbow cookie?”
“Uhh. Yes please.”
It was part of my routine for getting stabbed in the arm.
After a month, my skin started to heal!!
And shortly after that, my joints stopped hurting!!!!
It was amazing. Everything felt so easy all of a sudden. It was ridiculous. I didn’t realise until that point how hard it had felt to just walk and function and do things like a ‘normal’ person, with all the pain that I was going through. Even doing mundane stuff like… doing the dishes, taking the bins out, and going to the shops… it all became easy.
I thought I was just lazy! But it turns out… all of that time… I’d been doing altitude training… and now I was finally back at sea level.
I have a theory: When you’re struggling with ongoing pain, it’s a kind of defence mechanism to deny that the pain is happening. I couldn’t acknowledge the pain I was experiencing, because then it would become unbearably real.
I realised how much I had convinced myself that nothing was wrong. But now that the pain was gone, I could feel the difference, and I felt so much better.
The end. Everything was solved. Right?
What could possibly go wrong?
Continue to part two.