Last week I looked in the mirror, and saw an old woman.
It was truly startling, since I am not, in actuality, an old woman. I studied my reflection and tried to figure out what was making me look so old. My face is much rounder and heavier than it was in the days B.P. (Before Prednisone), but that’s been true for quite awhile. My body is heavier too, but there are plenty of heavy women out there who don’t look old, and anyway, I’ve been losing weight.
Then it dawned on me. I looked TIRED.
Beyond tired, really. Exhausted. There were heavy bags under my eyes, my skin looked dry and lined, and most importantly, there was no energy in my face. I looked at myself and realized that I AM tired. I think I’ve been trying to pretend for awhile that I’m not, but my looks tell the truth. There are other clues, too. My caffeine intake has been gradually creeping up. I had come close to giving it up completely, and didn’t even notice this reversal until my husband pointed it out. Of course, I snapped at him – another clue.
I read somewhere that people with RA need more sleep than other people. I also think I remember reading something about disturbances in the sleep patterns of people with autoimmune diseases, something that explains why we can still wake up exhausted after what seems like ample sleep. I would love to find these things and link you to them, but, well, I’m just too tired.
Fatigue is a ridiculous term for what we experience. It sounds so mild, so ordinary. It doesn’t describe the bone deep exhaustion that sometimes makes me unable to lift a fork to my mouth, or makes me forget things like my own address. It’s also a symptom that isn’t discussed much by doctors. It’s slippery, less treatable, something that isn’t always reflected in blood tests, something that doesn’t always go along with visible joint problems. There are also some articles about this, but again, too tired…
It’s also probably my number-one symptom, the one that recurs more often than the others. Sometimes I wouldn’t even know I had RA if not for the fatigue. Sometimes I’m going along, doing just fine, and it comes out of nowhere and blindsides me, destroying my plans for the day. And I don’t really know what to do about it.
Some people say (and I’ve generally believed) that symptoms like exhaustion are messages from the body, and we should listen to them – in this case, get more sleep. But how do you interpret the messages when they’re coming from a system gone haywire? Doctors used to treat RA with bedrest, and the patients generally ended up completely disabled. Now they tell us that we should stay in motion, try to exercise consistently even when the body wants to do nothing. How do we do something so counterintuitive?
I do think that I need more sleep. I think, in this particular case, that my body is calling me on my recent attempts to behave as if I don’t have RA and run around doing all sorts of “normal” things. I’ve been in a flare for the past few days, and seem to be getting worse. The exhaustion preceded the flare – a warning, maybe?
As you know if you read this blog regularly, I’ve been in an angry phase lately. When I’m tired, my anger descends into petty irritability. Instead of using it to spur change, or to move through the phases of grief, I start doing things like being snide with the girl behind the Starbucks counter. Not like me, and not productive. Didn’t make me feel any better, either – worse, in fact.
I’ve been thinking for awhile about my sleep habits. To be honest, they’re not great. A lot of this has to do with the fact that my husband and I are both night owls, with years of late-night habits behind us. He likes to work late at night, and I like to read. “Liking” to read is a huge understatement – I read the way other people eat. When I get into bed with a book, I can’t stop after one chapter – I have to read until some important plot point is resolved, or sometimes even until the end of the book. I also don’t like to go to sleep until my husband is in bed, and he has just as much trouble with self-discipline as I do.
However, we are now parents of a toddler. Like most toddlers, he likes to get up early. This doesn’t mess me up as much as it should, since my husband is the one who gets up with him and takes care of his morning routine. He does this out of consideration for my RA, since mornings are usually a bad time for me. I don’t know why the lack of sleep doesn’t affect him more, but somehow it doesn’t. It’s killing me, though.
So, like it or not, I think I have to fix this. I need to start going to bed earlier. I need to stop reading so much at night, or read things that are much less interesting. I like the idea of creating a bedtime ritual – maybe candles, music or a relaxation CD, moisturizer for my skin. I need to do this whether or not my husband is ready to join me. I need to accept that I simply need more sleep now, and do as much as I can to make it restorative. If I can’t do it for my health, maybe I can do it for my vanity!
There will probably be times when it doesn’t matter whether I do this or not – the RA will bring on exhaustion anyway. There will also be times when the RA brings its good friend Insomnia. But I think if I did this as regularly as possible, it might help. Anyway, it can’t hurt.
And then I can stop being bitchy to Starbucks workers. 🙂
Tags: Self-care
Oh, does this sound like me.
I am and always have been a terrible insomniac. Either I’m in too much pain to sleep, or my book is too interesting, or my mind is racing too quickly with the day’s thoughts. I have very few days where I’m not tired.
No matter how many times I vow to go to bed early, I never do. I’m a night owl to the core.
I hope you’re able to get some more sleep. Maybe I can learn from your example!
Changing a long-time night-owl habit truly is difficult — and the only answer is simply to force yourself to break it. I was just like you until a few years ago. Most nights I slept only four or five hours.
I finally decided, like you, that I had to break the pattern. I was seeing changes in myself I didn’t like very much — that irritability, the tired, older look, and in my case, a slow but continuous weight gain. At the time, my RA was still quiet, but I’d always been a night-owl. The RA pain only added to it.
The good news is that you CAN do this. Think of it as a gift to yourself, something that only you can give. (which is true) I’m living proof that the cycle CAN be broken. Sure, now and then, I get to reading and stay up half the night. I love doing it, but these days, I’m very aware of the price.
This graf: “So, like it or not, I think I have to fix this. I need to start going to bed earlier. I need to stop reading so much at night, or read things that are much less interesting. I like the idea of creating a bedtime ritual – maybe candles, music or a relaxation CD, moisturizer for my skin. I need to do this whether or not my husband is ready to join me. I need to accept that I simply need more sleep now, and do as much as I can to make it restorative. If I can’t do it for my health, maybe I can do it for my vanity!”
…is the one that spells how the how of it. Now, you just have to do it.
Wishing you the best!