I had a terrible time sleeping last night. It felt just like it did in my early years with CFS, but that's no longer normal for me. Ever since finding effective treatment for the sleep dysfunction in CFS many years ago (it was the first thing my doctor treated once I was diagnosed), I usually sleep soundly for 8-9 hours now, maybe waking once to use the bathroom. But last night, every possible type of sleep problem plagued me.
I felt sleepy when I turned out the light but couldn't fall asleep for over an hour. I got up 4-5 times to use the bathroom (as my doctor told me in the beginning, "You're not waking up because you have to pee. You're getting up to pee because you're not sleeping deeply.") The last time I got up, I noticed it was just beginning to get light out, and I laid in bed but could not get back to sleep. I got up to have a small bowl of cereal and take 2 valerian (a mild herb sort of like chamomile). That usually does the trick on the rare occasions when I can't sleep. Nope. Still awake. By then, it was almost 6 am, and I thought, "Great, I'll probably just fall asleep and then Ken's alarm will go off."
So, my next step was to move to my son's room since the kids are with their grandparents this week. Jamie's room is the darkest and quietest, so I grabbed my three pillows, my earplugs, and my dark sock/eyemask (I'm so high maintenance now) and moved. Finally, FINALLY, I fell asleep and slept right through until 9:15, but I kept having these weird dreams about my sleep being interrupted. I dreamed that Ken burst into the room looking for me and woke me up (he didn't). I dreamed that my neighbors were having a big party (they're actually very quiet, solitary people) and their visitors were in OUR backyard, yup, you guessed it, waking me up. The brain is a weird and wild thing, isn't it?
I felt OK after those last three hours of sleep and figured my after-lunch nap would revive me further. Guess what? I couldn't sleep again! Or if I did fall asleep, it was a light sleep and only for a few minutes.
As I was putting my contacts back in after my nap, I glanced at my bedtime pill reminder box and saw that Tuesday was still full. "Oh!" I thought, "that explains it! I forgot my medicines last night!" Then I realized that today IS Tuesday and I DID take my meds last night. See what happens to my brain when I don't sleep well?
Sleep is like this mysterious entity, so necessary but sometimes so elusive. I'd try to describe it better than that, but my brain is fried! Ironically, I did a research report on the science of sleep for my high school AP Biology class. At the time, it was all purely academic, learning about the stages of sleep. I had no idea that 20 years later, restoring the normal stages of sleep would become so critically important to me. And it is critically important, isn't it? Whatever else is causing CFS or perpetuating it, a lack of deep, restorative sleep keeps the destructive cycle going and makes all of its symptoms far worse.
I have no idea what happened last night. I've actually been feeling pretty good this week, so it wasn't a crash. Hopefully, tonight things will return to normal for me (if not, I won't hesitate to reach for the Ambien this time!) If you are still suffering from sleep dysfunction yourself, I urge you to talk to your doctor about treatment. It's not a cure, but it helps so much to get good sleep.
Night, night!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
11 comments:
Ugh is right. Here's hoping for a better night's sleep tonight for you, Sue. It makes a big since I found just the right combination of sleep aides. I still can't go far from the house but I'm not stuck in bed all day!
Sue
I would say you have a double portion of sleep problems with dealing with Lyme right now too. Die off will sometimes keep me wired but tired as toxins die off in my brain. it is frustrating. I have also slept so good for so long and now since 3 months after surgery I am waking a couple times a week and not falling back to sleep. I sleep too lightly.... even with my door shut, dark room etc. Bart and Lyme...and wild wild dreams come with die off too...so, it could also be Lyme or Bart? Not just CFS??
Whatever it is, sure hope it ends quickly for you....
Very interesting, Renee - thanks for the information. I hadn't heard that before about Lyme. I was definitely wired last night! (not so much this evening...)
Sue
Oh boy do I ever understand - most of my nights are like that, unfortunately. I hope that tonight treats you better!
I hear you - I have my sleep reasonable under control with a combination of meds for fibromyalgia - but occasionally I have that night or couple of nights that knocks me back into the misery of ten years ago... And then I get up and eat a lot of cereal too ;).
I'm sorry you had such a bad night. I have not been sleeping well for a while now but it has nothing to do with CFIDS and everything to do with the home I am in temporarily staying at. Lots of noise, loud grand-children, banging and slamming noise, and television noise. I'm thinking the sooner I can get into my own apartment the better.
I hope you get your sleep back on track because you are totally dead on when you explain how important sleep is ... especially for us!
Hi Sue,
I so hope you rested well last night. Nice to hear that you are otherwise feeling well. Hope you're enjoying your empty nest this week.
Hoping last night was different and you got that eight or nine hours of sleep.
The same thing happens to me Sue. I have medicine that returned my sleep rhythms to as normal as you can get with ME/CFS. Yet once in awhile, out of the blue, can't sleep--pull an all nighter, two or three in a row and then back to my "normal" sleeping again. Like you...I have not been able to figure out why, other than this disease likes to play with us.
Had to laugh about your mixing up of what day it is. I was just sitting over our calendar with my husband, and was writing today's "to-do"s. My husband pointed out that I was writing on yesterday's date. "Really, its Wednesday?"--that was my response and I slept last night.
Wishing you sleep Sue--soon.
Peryl - There's just something so comforting about cereal at night, isn't there?
Dominique - I know just what you're going through. I sleep horribly when I'm staying at someone else's house. That's when I pull out the Ambien! I'm thinking of you and hoping you'll be back in a place of your own as soon as possible!
Kerry - ha ha - glad I'm not the only one! If it weren't for those day of the week pill reminder boxes, I'd really be a mess!
Everyone - I wasn't taking any chances last night after the previous night's struggles, plus some pretty severe knee pain (from Lyme), so I took a half an Ambien...or I thought I did. After reading in bed for 30 minutes, I said to Ken, "Huh, I really expected the Ambien to help numb the knee pain a bit so I can sleep. I wonder why it's not working?" Turns out I only THOUGHT about taking it but didn't actually do it! Once I got back up and took my little half pill, the rest of the night was fine, thank goodness. The battles with brain fog continue!
Sue
I think I sleep in reverse sometimes, waking up more tired and sick than when I went to sleep, even after a solid 6 hours plus 3 hours patchy in the morning. Strangely, sometimes when I'm feeling a bit better I have more trouble sleeping. But even when I sleep for along time, I have my doubts about how much of it is restorative. The second half seems to be almost completely dreams!
Hope you can get rest again and the Lyme herx isn't too bad.
D.
Oh what a nightmare, if you'll pardon the metaphor! Interesting about the peeing. I sometimes get up several times in the night to pee and don't even realise I have. It's only because my partner gets disturbed by it that I know.
I've always been a 'light sleeper' and amitriptyline really, really helps. I think i'm on it for life now.
When things get bad in the night I eat too. A banana, a Kalms (valerian) and/or a couple of paracetamol usually works for me.
Post a Comment