It’s the unpredictability that gets to me.
Which, given that I've lived with not knowing how I'm going to feel the next day for over 40 years, seems a fair indication that I just can't be taught. To be fair, I know how to live with a certain amount of unpredictability - the daily kind, the one that varies within a certain set of limits. It's my reality and I live with it (sometimes, even halfway graciously). Of course, it explains why I'm an unmitigated control freak - when your body has a will of its own, you attempt to control what you can. A lot. Although I'm getting better at controlling (!) the urge to run other people's lives. Personal growth, y’know. Anyway, it’s this other unpredictability that’s driving me ‘round the bend.
Also the tired. I’m tired of the tired.
This new adventure with Humira hasn’t exactly worked out like I expected. At the start of February, things went well – I was riding the tail end of the Enbrel that remained in my body, while having started Humira and let me tell you, that was fun. I got my sense of humour back, became more patient, started laughing and as a friend of mine noted, the "death warmed over vibe" was gone. The energy levels were pretty spectacular, too - I started cleaning out the piles that had accumulated while I was busy getting through the days and began a large project to digitize my music collection and create more room on my shelves. Then, as the Enbrel vacated the premises and I started experimenting with the dosage and schedule of my injections, things changed. A third of the time, I felt pretty good, another third, I felt a range of mediocre and then? The bloody arthritis came back with a vengeance. In 12 hours, I went from sorta fine to fucked.
It felt like falling off a cliff.
The funny thing is that I'd forgotten what a real flare feels like. In the last couple of years, so much of my pain has been mostly from muscle and tendon issues, with a helping of the arthritis muttering irritably in the background, but this? This was very much Not Fun. I'd forgotten that a real arthritis flare feels like you're being wrapped in an old soggy, lead-lined comforter, making every parts of your body incredibly heavy, that somehow, it manages to raise counters and tables everywhere in your home so you can barely make a cup of tea. I thought I knew what stiffness was, but had no idea about that, either.
And then I disappeared again, after having re-emerged from hibernation briefly to initiate all kinds of get-togethers because now I had energy to do something other than getting through. Which I then had to cancel. Again. This disease is hell on relationships.
Things are a little better now – although I’m still getting to know Humira, a pattern is gradually emerging. I get my shot, feel like a wet dishrag for a few days while I mainline orange juice and drink gallons of water in an attempt to beat back the flu-like state that is the immediate aftermath of the shot. Then I feel pretty good for a week and then things start ebbing away and certain joints – the toe next to my left big toe (what's that called? The index toe?) is my canary in the mine – start telling me to exhibit Humira-seeking behaviour Or Else. But still, between the medication and the arthritis, most days, I’m somewhere between pretty tired and exhausted. And I want to get back to my life (and that massive clean-up project littering my livingroom), instead of spending half my time catching up and the other half having just enough energy to sit and drool while the days blend into each other and the months slip through my fingers. Although, it does mean I get to watch a lot of reality shows and other kinds of very undemanding entertainment. If I wanted to be fair about it, I’d acknowledge that there are tiny, infinitesimal improvements. But I’m not in a mood to be fair, because I am sick and tired of being sick and tired.
I have a fantasy. In it, the arthritis is sitting in the middle of my couch, looking nervous and intimidated. I am positioned in front of it, levelling my index finger in a determined and aggressive pointing gesture. In a stern, take-no-prisoners voice, I say “You may share my life – I will accept that. But you may not control it!”. And the arthritis cowers.