Humira Update: 10 weeks in!

It’s Friday! Like every Friday, I’m in a better mood than I have been all week. Today, though, there was an extra spring in my step, because (just like I have every fortnight for the last 10 weeks) I had my Humira shot. And it dawned on me that I’ve gone so long without writing a real blog post – so why not update you on how it’s going so far?

See, the thing is, I’ve been meaning to write this post for at least three weeks now. Longer, actually. I’ve been dithering so much that I even considered putting it off until the 12-week mark, just so I could publish a post at an actual milestone and not a random time-point. Luckily, I recognised that for the procrastination that it was, and sat down to write this post! But the truth of the matter is that so far, my Humira journey has been uneventful.

I had my first loading dose the day before I moved back to university, and I was surprised at how easy the injections were! Completely painless. The only sensation I can feel – and it’s a bit difficult to describe – is like the liquid going in, but even that sounds worse than it feels. My Humira nurse did the first injection for me, and I did the other three myself. Thighs are definitely better than stomach, in my personal experience. During one of my loading doses I pushed the button to start the injection at the exact moment some food moved through my intestine and gurgled, which was weird enough to put me off doing that again. Plus, I bruise more easily in the stomach – or at least it feels like I do – and the aching seems to linger for days. “Why does it feel like I’ve been doing sit-ups?” I complained, six hours after my first loading dose, only to pull up my t-shirt and realise that there were two neat bruises on either side of my belly button. No magically appearing abs for me, then.

Something I’m thankful for is that I don’t experience any post-injection side effects. I’d heard hundreds of stories from people that do, with experiences ranging from ‘mild headache’ to ‘completely useless for two days afterwards’ and I was… apprehensive, to say the least. But I don’t experience any. Oh! No, that’s a lie. I sleep amazingly well the night of my injection – I’m out like a light. Last time I ended up falling asleep without eating any dinner, which is not something I would usually choose. I’d been Skyping my parents, and we’d finished the call at about 9.30pm. I decided I’d just lie down for a minute and check Twitter (my grandmother had a saying: ‘never stand when you can sit, and never sit when you can lie down’ and it is my life motto now) and the next thing I knew, I woke up at 5am, still fully clothed, with a mark on the side of my face from my glasses and feeling extraordinarily well-rested. I’d slept so deeply I didn’t even have bedhead – that in itself was enough to make me sit up and take notice.

But is it working? That’s the big question, I suppose. The most honest answer I can give you is “I don’t know”. Humira isn’t really having any effect on the quality of my bowel movements. I haven’t had a solid bowel movement twice in a row for over three years now, and it’s really getting me down. Maybe I’m just picky – some doctors I’ve spoken to just brush it off with “well, your stools are still acceptable” like I’m supposed to just put up with it as The Way Things Are Now. But they shouldn’t have to be. They weren’t like this before. I really miss those days.

That’s not to say Humira isn’t doing anything at all. When the date of my next dose is coming close, I notice. Frequency and urgency increase exponentially, and leakage, too. That last fact is incredibly demoralising, and it’s the thing I find hardest to deal with. There’s something so degrading about knowing that you don’t even have control over your own anus any more, and not being able to do anything about it. It stops me from wanting to go anywhere, and I’m extremely anxious whenever I’m out and about – it’s something that really eats away at your quality of life. To look on the bright side, though… I feel like I have more energy, and my mental health seems to be stabilising. The parents say I’m a lot more cheerful, although that might just be because whenever I see them there’s usually a weekend at home and a hearty home-cooked meal involved, so of course I’ll be in a good mood! On a related note, my appetite is increased (to the detriment of my wallet) and I’m putting on weight – only a couple of pounds in three months, and I’ve still got to put on about a stone before I reach a healthy BMI again, but it’s still something. It just doesn’t feel like enough.

I have to keep reminding myself that it took years to create the damage to my intestines, so it’s unreasonable for me to want it all to be fixed in just 10 weeks. Even worse is the fact that I’m a hypocrite: I want the damage healed, but keep pushing myself harder than I should in every other area of my life to compensate for my illness, thereby putting even more strain on my body and, no doubt, increasing the time it’ll take for me to recover. It’s foolish of me, I know, and it’s because I’m tired of suffering quietly in my room in the name of ‘being patient’. I want to go everywhere, do everything, be the person I know I could be if I wasn’t hampered by this illness. But right now? I need that patience more than ever.