The Knife's Edge

Monday morning, I woke up with a pain in my right big toe. Well, not exactly in the toe itself, but just below the bottom joint. I wiggled it, inspected it closely and then went about my day.

It continued to hurt, just at that spot below the bottom joint and it made me nervous. In 2004 when I ran out of my hoarded store of Vioxx and the RA came roaring back, it did so in the bottom joint of the big toe on my left foot. It started hurting and swelling just below that joint and within 24 hours there was an almost audible pop when the fluid filled the joint so much that it felt as if it was forcing apart the bones.

Granted, what happened Monday morning wasn't in what I've come to consider my canary-in-the-mine joint, the one that started the last, big flare. And it wasn't in the one that’s taken over, tendon problems having become the new sign that I’m low on Humira. So I checked other joints, went though a couple of moves and tricks that usually mean I’m doing well and passed all of them with flying colors. But the foot kept hurting, kept throbbing, kept being insistently there in a way I haven’t felt in years.

I didn’t tell anyone all day, because saying it out loud would make it real. In the late afternoon, I had my Mandatory Rest Period, but didn't rest much because of the pain in that toe.  I looked at my foot after getting up from my nap, noticed what I thought was a bit of swelling and then didn't look again, just being aware of how much I could feel my sandal around that area. Went to a meeting and was aware of my foot, came home, watched the rest of the Dancing with the Stars finale and was aware of my foot.

And then I told my mother and after some discussion, we agreed it was a fibro flare. And then I told The Boy and finally looked at my right foot, feeling safer having him there with me on the phone. And it had swelled some more, but sort of oddly, sort of on top of the foot. So I theorized a light sprain, but underneath all the logic was the panic screaming the Humira has stopped working and it’ll keep swelling and when I wake up tomorrow, I’ll be in a full flare and an incoherent constant moan of please no, please no, please no. And then I ended the call because I couldn’t focus on anything but the gibbering fear and tried to distract myself with season one of The Big Bang Theory, not really succeeding.

My attendant came around 10 PM and I transferred to the toilet, not feeling pain and you would be in pain if you bore weight on the foot, wouldn’t you, if it were the joint? I sat there, absorbed in the sensation of a buzzing throb in time with my heartbeat, looking at my feet, trying to see if the swelling was getting worse. Afterwards, I changed the way I sat, put my left heel on top of the right foot and it hurt and all of a sudden, I thought I knew what had happened. That maybe I’d sat like that for 2 hours during the parade and that maybe the cold and the position and being tense because of how mad I was at the idiots who cared nothing for other people’s views had strained my foot right there. That maybe it actually was a slight sprain. The ache pulling up my leg in a line from the toe by the ankle and towards my knee certainly felt like a sprain I’d once had.

That was the logic, but the pain was pretty bad and the throbbing was pretty bad and my foot positively cried out for an ice pack (impossible because there wasn't anyone there to hold it against the foot) and I freaked out some more and then, around midnight, it eased. Eased enough that I could ignore what was going on. Eased enough that the panic subsided.

When I woke up yesterday morning, there was no pain, not until I'd gotten up and moved around and that was a good sign. I saw my family doctor and after some discussion, we theorized a slight sprain. I am, however, watching it like a hawk and if it hasn't improved by early next week, I'm calling my rheumatologist. And in the meantime, I'm sitting on the panic.

All it takes is a moment. A moment of odd pain, a moment of the inexplicable - and not the usual inexplicable that comes with fibromyalgia - and you realize that your life is a house of cards. I may have talked about getting used to the meds working, that I've shifted from expecting it all to end any minute to believing that it won't and that I feel much more hopeful for the future, having faith that if one medication stops working, there are others. And then there's that moment where you think your medication actually has stopped working and it is nothing but blind fear. A screaming howl of panic that it is all over again, that it will be derailed again, that all this wonderful treasure of a life that you have found again will be lost. And what if none of the other meds work and what about the side effects and in a split second, the grief of losing your life is dropped on you like a freight train and it becomes impossible to breathe.

Having a chronic illness is like walking a knife's edge. The firm ground beneath you isn't firm and isn't ground at all. It is infinitesimally thin and you walk along it in a precarious balance. All it takes is a puff of air and you will be cut to pieces. 

I'm thrilled to be nominated in the Best Blog Post category of the 2011 Canadian Blog Awards for Sensitive to the D-Word. You can see all the first-round nominees in that category and vote here and all categories here. There are some excellent blogs on the list. You don't have to be in Canada to vote.