If I had a dollar for every time someone met me and said "Wow! You don't LOOK sick!", I could probably afford to buy that Prius I've been lusting after.
That's the thing about MS - most of the time, I don't look sick. I might feel like crap, like I've been run over by several trucks, but to the casual observers, I look okay (maybe not great, but definitely not sick).
Here's the thing. I'm in pain all of the time. There isn't a moment in the day when I'm pain-free. Most of the time, the pain is minimal, kind of like physical white-noise. I know it's there, but it doesn't really stop me from doing stuff. Other times, like today, the deep ache in my arms and legs insists on being noticed, not ignored. On days like today, any plans I might have made (like driving to the library to pick up a book on hold) get flushed right down the toilet, because I'm too tired to risk driving the mile or so without risking an accident. On days like today, getting out of bed and throwing on a shirt and a pair of leggings is about all I can manage without needing to crawl back into bed.
Unless you've lived with constant, relentless pain, you can't begin to imagine how exhausting it can be. Even if the pain is the 'white noise' version, it drains away some of my precious energy reserves, which means I start every day with a kind of deficit that just can't be replenished. Even with the medication I take to counter MS fatigue, there are days when the pain wears me down so damned much I can't even unload the dishwasher, much less drive to the supermarket and carry bags of food into the house. Even those ridiculously simple, easy tasks feel like climbing Everest on days like today. So I know I'll end up in bed, propped up on pillows, trying to read a mystery or watch a DVD, but more than likely just sleeping, trying to recharge my energy-batteries enough that I can do something - anything - tomorrow or the day after.
And, of course, I HATE feeling like such a whiner, complaining and bitching all the time about how tired I am or how lousy I feel. I mean, I bore myself when I feel this way - I can only imagine how boring it is to everyone around me. Gack...
So once I've posted this wee rant, I'll find the pillow-armchair thingie that I bought when the first exacerbation smacked me around, grab a couple of books and DVD's, fill my water bottle with cold water, and crawl into bed for the rest of the day.
I guess I should be grateful to have a comfortable bed in a cool, quiet bedroom where I can rest as long as I need to, and most of the time, I am grateful, very grateful. But today, I'm pissed off and tired of being sick, tired of being in pain.
And if anyone told me that I don't "look sick" today, I swear I'd bonk them with my cane.