I hate afternoons. Maybe that seems severe, but it's a consistent low point for me, every day. I was just lying on my bed after my nap, trying to find the energy to get up and write a more in-depth blog post on another topic, and I just...couldn't...do...it.
I know everyone with ME/CFS is different and many of us have different high and low points, but my daily rhythm is the same, day after day.
As long as I get enough sleep (at least 9 hours, 10 is better), then I usually wake up feeling OK. Morning is my productive time of day. Once I've had breakfast (I wake up starving, thanks to low blood sugar) and my medications, I usually have some energy and can get some things done. Sure, I have bad crash days like everyone else, but with my current regimen of medications, I can often function almost normally in the morning. I spend some time on the laptop, make phone calls, try to work a little, and can even usually manage some errands.
Afternoon is a whole different story. Once I've had lunch (again, usually starving by noon!), it's all downhill. I learned early on in my illness that preventative rest is very important for me, so I take a nap every day after lunch. No matter how good I feel during the morning hours, I am ready to lie down and rest by early afternoon. I do actually sleep during my rest time, and my entire family (and my kids' friends!) know this is a sacred ritual for me. I take two Valerian (a mild herbal sedative) to help me relax, darken my bedroom, and cover my eyes. I usually read for a little while first in bed, but then I close my eyes and almost always fall asleep (another thing that helps me fall asleep is to put on warm socks - I read somewhere that warming your feet helps you sleep and it's true!).
As much as I need that nap, I usually wake up feeling groggy at first. During that post-nap period of late afternoon (worst time of day for me), I have no energy. I feel like my limbs are filled with wet cement. Even when there are urgent things I need to do, I can barely motivate myself to do anything. I just want to lie in bed with my book or on the couch watching mindless TV. My brain, which was lively and functioning well hours before, feels sluggish and slow. I have learned not to schedule anything in the late afternoons, so I can just go with the flow and rest. This is the time I generally set aside for visiting blogs and for writing my own blog (which explains why I haven't been keeping up with them very well!).
By dinnertime, I am usually starting to perk up, though I often have to force myself up off the couch to make dinner. Once I eat dinner, I usually feel OK again; I don't have the high energy of morning, but I am able to enjoy my evening (this is why we often eat dinner very early, at 5-6 pm). By about 8 pm, I am wearing down a bit and glad to spend an hour or two relaxing with a movie or TV show with my family. I go to bed about 10 or 11 (in summer) and start the cycle all over again.
Despite feeling so rotten after my nap, I know I am even worse if I skip it. Several times on vacation, I wasn't able to take my nap until 4 or 5 pm, and I really suffered for it! By 3 pm, I can hardly keep my eyes open, and by 4 pm, full-blown crash symptoms are starting to creep in.
So, I know the nap helps, but I still dread the late afternoon.
Oh, shoot....it's almost 5 pm. I'll have to drag myself up to get dinner ready soon.
How about you? What's your daily rhythm? Do you also dread afternoons or do you have your own slump at a different time of day?
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.
ahh a good tip about socks! Shared with dd and she will give it a try.
ReplyDeleteLove Leanne
Hello,
DeleteMy name is Caroline. I am so happy to read about your blog because what you are describing is exactly what I experience everyday. I was wondering if I was the only person going through this "crazy" rhythm. Just like you, I can't plan anything important during the afternoon, I avoid taking trips, appointment's because I always pay the price. If I don't nap, I get a really bad headache later during the day. My family has also learn to adjust with my illness. I also suffer from fibromyalgia. I find it very frustrating to not be able to accomplish everything I want to do during the day like most people can but at the same time, I know that I need to learn to accept the fact that napping is part of my life. Even my doctor jokes that I should move to Mexico since everybody naps there.
Hi Sue,
ReplyDeleteIt's mornings for me:( I simply can't get up with any ambition for anything. It takes me a couple of hours to get ready to face the day. I try to be thankful for each new day, but mornings are so hard!!!
I love the tip about socks. I don't like the feel of them in bed, but I always have cold feet. Have actually used the electric blanket a lot this summer:(
Hang in there. Hope your naps help!
Blessings,
Elaine
I have a daily rhythm too but it's different from yours. I wake up feeling unrefreshed no matter how well I sleep. So, mornings are always hard for me. I usually spend them in or on the bed, catching up with computer responsibilities -- checking blogs, posting my own piece at Psych-Today, answering emails.
ReplyDeleteBy noon, my body collapses (this is why I can never eat lunch with others). I nap for 1 1/2-2 hours and then have my best time of day (so my best time is your worst time -- ah, this mystery called CFS!).
So, sometimes in the afternoon, I go to the corner espresso place (my home away from home) and read the newspaper or work on a blog piece. By 5:00, I begin to run down (so just when you're perking up, I'm about to enter the worst time of my 24 hour cycle).
By 7:00, I'm in what I refer to in the book as "stun-gun state." I lie on the bed and watch TV -- maybe finish off time on the computer although I shouldn't -- I can feel myself using adrenaline to do it. There's no such thing as my going out in the evening in the Bernhard household!
So, that's my day. I think the hardest part is that it's always the same. I know that that predictability has a lot to recommend it (I know when NOT to plan things) but the lack of flexibility is a challenge -- I can't, for example, agree to have lunch with someone.
I wonder, Sue, why are daily rhythms are almost just the opposite. Thanks for sharing this. I'll be curious to read others' responses.
I have the same problem. Afternoon slump. If I forget to eat a snack around 3pm that gets coupled with blood sugar crash and I turn into the wicked witch. While I don't need to sleep I do need to lie down/recline and do something really mindless like watch TV.
ReplyDeleteMy day goes something like: 11am up, eat breakfast at noon, do something (make dinner in the crockpot or go to the doctor), snack, afternoon relax time, dinner, more reclining time, slightly more energy after 8pm so I can read, talk with hubby or write, more TV until bed at 3am.
The monotony is getting to me! But I don't have the energy to do anything about it.
Glad everyone likes the sock tip! It's too hot in the summertime to do it, but it works well for me the rest of the year. I usually kick them off during the night, but starting off with warm feet helps.
ReplyDeleteToni -
That is odd, that our days are exactly opposite of each other. I know many people have trouble with mornings. I do feel lucky to be able to meet friends for lunch (as long as it's early!) or to sometimes manage an early evening out for dinner or book group. I'm the same way about evenings - I try to stay off the computer because I know I don't have the energy for it at that time of day, but it's hard to resist sometimes! Oops...speaking of that, I better get myself off to bed :)
Sue
Just a quick note on the warm feet thing...
ReplyDeleteBe careful not to get your feet TOO hot - it's bad for OI, draws the blood down to your feet rather than circulating to heart and brain. So, I usually avoid heating my feet up too much (like my mom bought me these heatable sock-things, but I thought that would be too much).
So, as with everything, pay attention to how you react and adjust accordingly!
Now I'm really going to bed, I swear...
Sue
I'm still trying different medications so my sleep/rest routine has changed a lot recently...whether it's for the better or worse, I don't know yet.
ReplyDeleteI find meditation mid afternoon helps (as I usually can't nap).
I love your idea of warm socks, I currently use a wheat bag which I put at the end of the bed each night which combined with wearing socks seems to help. It warms them up initially but cools off so they don't over heat.
I love hearing your me/cfs coping tips .
:) Thanks, Kiwikchat.
Interesting post. As I was reading it through, I found myself agreeing with everything you wrote. Afternoons being the absolute worst, having difficulty getting up to make supper, mornings the best and evenings good too.
ReplyDeleteThen when I was reading through the other's comments, I was in agreement with them about mornings being the worst. If I have to be somewhere in the morning, it's a struggle to move quick enough to be ready on time.
As I think about this more in depth though, I guess I see a combination of these rhythms. Before I was sick, I was most definitely a morning person. I've always functioned better in the morning and less so in the afternoons. When I first got sick, it almost killed me to not be up and at it first thing. Eventually, I got used of that and viewed my day as a train going uphill...slowly gaining momentum to be able to work (as little as it was) in the afternoon and evening. Even then, evenings were better than afternoon.
As I make improvements though, I'm finding a slow switch back to my natural rhythms. Mornings are best, afternoons are the worst (late afternoons being terrible) and evenings are good too.
My daily rhythm is almost exactly like yours. That afternoon nap is critical. If I miss it, it throws me off for several days. A couple days of no nap or a short nap and I am in a full blown flare where I feel like I have the flu and do nothing but sleep all day, getting up occasionally for small snacks.
ReplyDeleteI have had CFS since 1988, but only in the last 5 years have I experienced this severe loss of energy, along with brain lesions and cognitive changes necessitating my retirement from my academic position.
@Baffled -
ReplyDeleteAh, good point about the afternoon snack! My blood sugar plummets then, too. If I remember to have a small snack with protein after my nap, I do better...but I'm trying not to gain weight and it feels like I just had lunch! It's all such a balancing act. Oh my gosh, I could never stay up till 3 am! I used to be a late-night person, but now I'm like an old lady - early to bed and early to rise. I'll have to do another post about sleep rhythms!
@Kiwichat -
I know I should meditate more. I learned TM when I was 16, so I'm somewhat of a lifetime (though lapsed) meditator. But like Toni mentions in her book, I find I have trouble meditating now with CFS. Harder to keep my mind focused. Also, I have learned I must lie down to rest and that I feel awful if I don't actually sleep. Glad to hear meditation helps you - I should try it more.
@Jake -
Yes, things definitely change over time, don't they? Early in my illness, I needed even more sleep and had trouble getting up in the mornings. Since I need to get my kids to school early 9 months of the year, I have to go to bed very early - it's the only way I can manage the mornings. But that seems best for me now, anyway, because I can't sleep much in the morning - once it gets light out (even with a very dark room), I;m wide awake. Frustrating.
@Kathleen -
So sorry to hear you seem to be in a downward pattern and are getting worse. I am very grateful not to suffer much in the way of cognitive dysfunction. Have you been thoroughly tested for Lyme disease and all of the other tick-borne co-infections? They cause neurological problems, including brain lesions and worsening cognitive dysfunction. Just a thought.
Sue
Sorry Sue -- I just noticed my comment got posted in my son's account (Jake the happy snake). He must not have signed out of his account...and I didn't notice it. Anyway...it was from me...not Jake.
ReplyDeleteI wake up in the morning feeling yucky. I have a simple routine that I follow, and I start to "thaw out" sometime during it. I rest about 11 am, and then I feel my best between 1 and 3 pm. I then take my afternoon rest. I'm still OK after that, but I start to fade for good around 7 pm. So, my energy levels follow a pretty consistent bell curve.
ReplyDeleteSue - exact SAME exactly. And if I get a fever it's afternoon and I feel MUCH sicker in the afternoon.
ReplyDeleteI've tried to eat at like four to see if that will bring on the evening's slight improvement earlier - but no go.
Upnorth -
ReplyDeleteI completely understand. My family and friends think we are crazy for often eating dinner so early, but I find it does help me a bit. And waiting to eat a late dinner (as happens when I am with my extended family) really makes it worse!
Sue
I love hearing the specifics of everyone's schedules. I too have to keep to a strict schedule or I feel awful. The best thing I can do is sleep till I wake up, usually between 8 -9. Then mornings tend to be pretty good; by 12:30 or so I need to take a nap. I generally don't actually sleep during my "naps" but I need to be in bed, eyes closed, shades drawn, for a half hour to 45 minutes. Then I get up and eat lunch -- after that I usually have a good couple of hours before fading around 5:30. Then again I have to nap, before making/eating dinner and having a few more good hours.
ReplyDeleteI've had Cfids 20 years now -- and can count on my hand the number of days I've missed nap times. I avoid it at all costs because I just get progressively more exhausted and miserable. At least having a strict schedule gives me some predictability.
I'm also struck by how different my crashes are from yours, Sue. Crashes for me last anywhere from a week (rare) to 3 months. I can be in a good state and have a bad day or two, but nothing like a full-blown crash. If I'm in a good state and stay within my boundaries, sometimes I can feel positively close to normal! But in a crash, no matter how much I rest, I still feel awful -- limbs of lead and an achy, exhausted constant stress -- like the only way anything gets done is pure pushing adrenaline. Even lying in bed in the dark I feel utterly exhaused -- it's almost like I'm too exhausted to rest, crazy as that sounds.
Phew, I didn't think I'd go on for so long. This disease is so weird that I have such a need to explain to people who understand. Thanks for listening!
Well, my crashes don't usually last as long as yours (except for a 9-month long one last winter), but what you described is exactly how my bad ones feel. No one could understand unless they'd experienced it!
ReplyDeleteSue
I've enjoyed reading about everyone's schedule. I dont have one and am thinking that it may help. I get up when I want and lay down when I get tired. I used to take provigil to help stay awake but stopped since its so expensive. I may have to go back. I really can't think of when my best time of day is. It seems to vary. I have to sleep at least 9 to 10 hours or I feel awful. Usually in bed by midnight.
ReplyDeleteYour routine is exactly the same as mine.
ReplyDeleteMade me feel so good I'm not the only one really helps reading things like this.
Reading this in 2017 but so thankful: I' m experiencing exactly the same.
ReplyDeleteSo sorry to hear you experience the same thing, Annelies - I am in that afternoon, post-nap slump right now in fact! But I am glad you found your way here :)
DeleteYep, almost exactly the same here. Up at 8, takes 90 minutes to be up to doing anything. Most days I am lightly active until 1130. Lunch then nap till 3. Feel tired but ok when I first wake up then by 4-430 just awful and completely useless. Eventually able to get some food around 7pm then feel actually quite good until bedtime 10-11pm. It's actually hard to not stay up later because I feel alright but if I do, it throws everything off. It took years to accept this is the best I can do and to learn that no matter how awful I feel every afternoon, it will pass.
ReplyDeleteSame here - I used to be a night owl - now I know that no matter how late I stay up, I will be awake by 8 am, so it's lights out by 10:30!
DeleteNice to hear there is someone else with my schedule - most with ME/CFS don't get going until afternoon!