By Jules Bonds
For anyone with fibromyalgia, there are so many different symptoms that can, and do, affect your life. For me, lack of sleep is my number one enemy. I can be so tired throughout the day, staring mindlessly at a computer screen or unable to keep focused on my drive home from work yet, when I actually lay down at night, my eyes are wide awake and my brain kicks into high gear. I toss and turn like a fish out of water, trying to find a comfortable spot. Even with a new mattress, there are nights when I feel like I’m sleeping on a bed of rocks. My back aches, even though I sleep with two pillows under my knees to keep my spine in a neutral position. My neck and shoulders get knots in them, even though I sleep on an orthopedic pillow. God forbid I should roll over and sleep on my side. It feels like I have pins and needles driving through my hips. They throb and stiffen and some days, the bones feel like they’re going to puncture the flesh. And let’s not forget my feet, for they hurt, too.
You would think I spent the night wrestling with gladiators the way I wake up. I’m groggy, cranky, stiff, muscles with that “weighed down” feeling like I’m dragging around bags of sand and some mornings, I wake up with a headache. Great way to start the day, don’t you think?
Then, to add insult to injury, I constantly hear people tell me I look tired. Oh, here’s my favorite: “You look delicate today.” Delicate? What the hell is that supposed to mean? Of course I look tired; I am tired. I think it’s difficult for people to understand how I could go to bed at 10 p.m., wake up at 6 a.m. and still be sleepy. Why, that’s eight whole hours! I should be rested, relaxed and ready to go! What they don’t understand is deep sleep. This is the sleep that restores and repairs your body; the sleep that gives you energy to start a new day; the sleep I desperately need but cannot get! It was only when I started tracking my sleep with a Fit Bit did I truly see just how little deep sleep I was getting. Right now, on average, I get two-and-a-half to three hours of deep sleep. So tell me, if you only gottwo-and-a-half to three hours of deep sleep every night for months and months on end, wouldn’t you look tired, too? Wouldn’t you feel tired, too?
I wish I could be honest with every person who asks me “How are you today?” and give them the answer they need to hear: “I’m tired. Yes, again. I didn’t sleep well. I’m fatigued. I’m running on empty. But gee, thanks for asking!” Most of the time, however, I find it easier to just say “I’m OK” and keep on going. I reserve my real reply for the few who I sense actually care about my answer. They’re not just asking because it’s polite. I can see it in their eyes. They truly want to know. To these few, I thank you. It is most definitely not easy to share intimate, difficult feelings with someone, especially when you’re wondering if they even believe you or if they’re thinking you’re just a big, fat drama queen, seeking attention. It’s even more difficult when it’s hard to articulate your words because, from a lack of sleep, the words in your brain feel like they have to go through track and field hurdles just to get out of your mouth. This is another reason why, sometimes, it’s just easier to stay quiet.
I guess what I want people without fibromyalgia or sleep problems to understand is this: Do not assume I get a good night’s sleep. Do not assume I’m being lazy because I sleep for two hours after getting home from working four. I’m tired, in the truest sense of the word. I am not faking. I am not being dramatic. I have an honest-to-goodness condition that severely impacts my ability to get deep sleep on a nightly basis. Some days, my exhaustion and frustration is so bad I feel like crying or laughing like a mad woman. There is no magic herb that will remedy my problem. A two-week vacation will not make my fibromyalgia magically disappear. This is my new reality. Please do not judge me or make me feel worse than I already feel on my own.
So, to all my fellow fibro fighters out there who deal with the struggles of getting a good night’s rest… I know your pain. I know your frustration. Please hang in there! I wish all of you as many good nights as possible.