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On January 8, the day I’d been waiting for to read the final book in the epic fantasy series The Wheel of Time, I got sucker punched with a nasty case of the flu. I was in bad shape for a week. While reading A Memory of Light
I was grateful that the flu had struck me mid-month, because I had no looming client deadlines. (Oh wait, I take that back. I had one. And it was taken care of the next day after I got sick.) But even though I’m over the flu now, I’m still recovering. Because the physical stress the flu caused on my body triggered a CFS flareup. And chronic fatigue syndrome does not want to let go as readily as the flu did.
I’ve been sleeping a lot. I mean a lot. Or maybe I’m sleeping the right amount of time, but it just takes me more time in bed to accomplish that. Here’s where I confess that I haven’t been getting out of bed until after 11:00 most mornings for the past few weeks. People seem to take “sleeping in” as some sort of character flaw in today’s society, but believe me when I tell you that I could not drag my body out of bed a single minute earlier than I have been. I’m upstairs in bed by midnight each night, although I’m usually reading for another half hour to an hour after that, but I can’t fall asleep for another two hours, even with medication. (The meds make it possible for me to get refreshing sleep; they do not make me sleep or otherwise guarantee I will get any sleep.)
My alarm goes off at a time when most people would already chastise me for being “lazy,” but these past few weeks, I’ve been unable to get myself out of bed for the entire hour the music on my clock radio plays, and I’ve been falling asleep again before the music shuts off. When I do wake up again, it’s physically exhausting just to take that first step out of bed… and it’s my bladder that’s forcing me to do even that much.
It’s barely 3:00 pm as I’m typing this up, and as I get TJ’s snack ready for his impending arrival via school bus, I realize I’m going to need to use my cane the next time I get up from my desk. Yes. I’ve been using a cane to help me walk for the past two weeks. I’m lucky I even have one, although I do feel a bit self-conscious carrying it around the public library and Walmart… You see, I bought it as a prop for my costume when we went to NY Comic Con back in 2010.
You may not be able to tell in the picture, but the cane is capped with a weathered silver skull. If you’ve ever played anything in the Warhammer 40,000 universe, you know that everything is grim and gritty, even when you fancy yourself a merchant space captain. Which made perfect sense with the costume, but not so much when you’re wandering around the library wearing a Soft Kitty t-shirt and jeans.
But despite my discomfort – which Tom says is silly, because he tells me it makes me look epic – the cane has been invaluable. It wasn’t until I’d noticed how tired my right arm was one day that I realized how much I was depending on it. It’s provided a lot of much-needed support. There are times when I literally can’t feel my feet, although a lot of that can be blamed on the icy cold draft under my desk through our poorly insulated exterior wall. (I’m experimenting with a new type of insulation down there today…stuffed animals draped with a fleece blanket to block the draft from my feet.) Other times, there’s a weakness amount my feet and legs that I’ve just never experienced before. I didn’t understand when my mom started complaining about weakness in her hands that made her drop things. But I get it now. Sometimes your body just doesn’t do what it’s supposed to do. Suddenly, and without warning, muscles that were behaving properly can just give out. This happened to me when I was walking down the stairs last night. One of my ankles bent awkwardly when my foot decided not to support my weight anymore. Thankfully, I had my cane in one hand, and the other hand was holding onto the railing, so I didn’t tumble down the remaining five or six stairs.
I can’t get past the fact that I’m not even 35 yet and walking with a cane, though. I’m not a military vet. I haven’t been in a car accident or had any other catastrophic injuries. My body is just not responding the way it should for someone my age.
I’m still hoping this walking thing is a temporary glitch. This is a flareup that’s just lasting a bit longer than most. But what I fear is that this is going to become my new normal. In bed for 11 hours a day, and only able to walk unassisted for 3 or 4 of the remaining hours. I’ll make it work if I have to; I mean, it’s not like I’d have a choice. But I’m still praying I’ll get better again. I worry like this every time I have a bad flareup.
And here is where I reach out to you. Have you ever struggled with weakness in your legs? Were you able to build your strength back up? Any physical therapy exercises anyone can recommend that wouldn’t overexert me? (Looking for casual, not medical advice. I won’t sue you!) And if I do need to stick with my cane, where do you buy nice-looking canes from? I found some online, but I didn’t know if I had any brick and mortar alternatives that weren’t limited to the ugly but practical selection at the pharmacy. Thanks for your suggestions!
That’s me: Christina Gleason. I’m a writer, editor, and disability advocate. I'm a multiply disabled autistic lady doing my best in this world built for abled people. I’m a geek for grammar, fantasy, and casual gaming. I hate vegetables. I cannot reliably speak, so I’ll happily conduct business over email or messaging instead.
