I actually thought I was going to make it through a whole month without having one episode. It would be the first time in 20 years that, that has ever happened. I would have considered that a miracle. Of course it was not to be. This odd, mysterious, quirk in CFIDS/FMS still happens several times a month. Every month.
With only one day left to the month, I thought I was in the clear, but last night proved me wrong. As bad as I have been feeling for the last month and especially the last several days in which I have been wiped out from this virus, I would have thought that would have been a sure indicator that I would be able to sleep soundly once I turned in for the night. Yet, as I tiredly dropped into bed at around 10pmish last night, my brain did that magical click, and voila…
I am wide awake! How to explain to someone that you are so completely exhausted you can’t see straight, but the previous night, you were unable to sleep one wink because you body suddenly decided it was time to be wide awake. Sigh. Head shake. 
This has to be the craziest symptom of CFIDS/FMS. I have often tried to figure out why my body would do this, but I am just unable to fathom any plausible reason for it. And for my brain to switch from sleep mode to wide awake mode the night before I need to go grocery shopping in the midst of a crash and a bug, that is so unfair.
But here I am having now not slept one wink for the past 24 hours. Usually, when this happens, I get up and clean house and do all the little things I normally can’t get done in one day. Sometimes, that will ‘reverse’ the awake mode and I can go back to bed at 6 a.m. and sleep for a couple of hours. At other times, I end up being up for 48 hours straight with no sleep whatsoever just buzzing along. Again, my mind struggles to figure out why my body would think this is a wise thing to do.
The other odd thing for me is that I really do feel wide a wake. I usually have more energy, my concentration is better, and I am more cognitively able to adapt! To be honest, I usually embrace these odd nights with joy because I know I am going to get somethings done I would otherwise not be able to.
For me personally, I usually have several of these awake nights a month. I use to have many more nights likes these when I first got sick. In fact, I would have periods of weeks where my brain would switch and I would be wide awake at night and sound asleep during the day. That has lessened over the years and I now only have a handful of them every month. I am not sure if that is a blessing or not? But I do get a lot done on these nights. Unfortunately, I also end up crashing really good for a day or two afterwards.
What would be really cool is if I could flip that switch at will! Now that would be a handy little blessing in the midst of this illness! 
I could decide to flip the switch whenever I need to clean house, plan a party, go out with my friends. Oh the uses of such an ability! If I could figure that out, I could make a lot of money selling the secret to all those who have CFIDS/FMS. 
Okay, I’m being slightly facetious, but wouldn’t it be great to have the ability to do that? I mean really? The control I would suddenly feel! The empowerment! Oh, that would be better than a whole pint of Hagan daz pistachio walnut ice cream!
Back to reality…
I will use this small window of awake-ness and get some things done today. Who knows how long it will last this time. I have learned to never look a gift horse in the mouth. I suppose of all the symptoms I have to deal with in these odd illnesses, becoming sleepless in Tulsa, is a minor irritation compared to some of the other challenging symptoms.
In addition, it afforded me the rare opportunity to be wide awake when the sun came up this morning. Now that was priceless!
Determined to continue forward,
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“Sleepless in Tulsa” almost sounds like the title of a song. Do you have the lyrics to go with it?
It must be a weird feeling to be so tired and be unable to sleep. That would drive me crazy.
.-= LD Jackson´s last blog ..Italy convicts Google executives =-.
Larry – Ha ha! No but I do have the movie (Sleepless in Seattle)!
Weird feeling…Yup…I would agree with that statement!
I hope the family is recovering and resting. I am praying for them.
I am sorry you are in that very tired but very wired state of mind that CFS/ME likes. I know you are into herbs and supplements ~ has melatonin helped you at all? The body gets so mixed up at times with CFIDS.
Sending warm hugs your way for a good day and a really good night’s sleep.
.-= Renee´s last blog ..In A Bit Of A Tizzy =-.
Renee – Melatonin doesn’t work for me but I take Formula 303 and that usually works except for these particular times. So I try to sleep through the day until the clock switches back.
Thank you.
I recognize that feeling! For me, it usually hits on a night when I know I need a good night’s rest for something biggish the next day. I lie in bed, trying to fall asleep, noticing that strange energy, and I think, “Where have you been all day?” For me, melatonin has been VERY helpful. I also love Ambien, but I haven’t had any for awhile.
Good luck getting some real rest tonight!
.-= Shelli´s last blog ..Rollercoasting =-.
Shelli – Yup! Totally relate! Ambien and I do not get along well. Really bad reaction. My brain will eventually reverse back to normal, hopefully tonight.
Thank you.
I too know that “wired but tired” feeling. Like you I cannot take Ambien. It’s as if I’ve taken a pill for the purposes of increasing all my CFS symptoms! So, Ambien is out for me. I’m sorry you didn’t make it through February, but at least you got to see the sun rise. Take care.
Toni – I did get to see the sun rise!
I hope all is well with you Toni.
Hi Dominique,
How are you feeling now? I hope you are much better. One thing that keeps bringing me back to your site is your motivation and doggedness to turn things around to work for your good even in pain.
what you need to do is as follows:
Get something to eat
Get some sleep if you can and if you cant please rest a bit
and i will say a prayer for you.
take care and God bless
Ayo – Not much better although I do think the Sambucol is working. Funny thing. All three of your suggestions are actively being pursued at this very moment!
Thanks for the great suggestions! Yes, I am determined! One day at a time! Thank you for the prayers. They are coveted!
I am amazed how CFS expresses itself somewhat the same and so
uniquely different for each individual. Being exhausted and
not able to sleep and the tired but wired is so familiar to me.
But even though the switch over to wide awake at night happens
I don’t get extra energy and I’ve never been able to sleep
during the day no matter how sleep deprived. Getting up to
do stuff and going back to bed in the am has never worked for me.
I’d be really bad off if I did not just stay in bed and rest
until sleep comes around 2 or 3 am and then I’m awake at about
7 or 8. The next day I go about my usual routine very sleep deprived hoping I’ll
sleep better that night. The one thing I’ve improved on is
not getting so anxious about not being able to get to sleep.
Often I use the time to pray or think of pleasant things knowing
eventually around 3 am my body will go to sleep. At least laying in bed even if unable to sleep rests my back muscles where I carry
most of my muscle fatigue. Well yes
we are so different and yet the same. CFS is one WEIRD disease.
Patricia –
I agree wholeheartedly with you.
Wow Patricia and Dominique,
As I read your comments about the sleeplessness, I keep thinking, “Man! I wish I had found these ladies years ago!”
I understand completely what you are saying and I have to agree with Patricia. I’ve had to force myself to stop being frustrated on those nights I can’t sleep.
When I have something important to do the next day, I try to take valerian (a very stinky herb) or even a benadryl (also known as diphenhydramine, and found in Advil PM and Tylenol PM) to help me sleep. I used to take prescription sleep aids, but I would have a hangover the next day.
In regards to the shopping, you probably already do this, but when I cook, I always make lots extras to freeze. That way, I’m covered on my really bad days. Also, a lot of major grocery stores deliver to your home. If you find the store’s website, you can shop online and even pick a delivery time. Maybe there is something like that in your area, Dominique.
You are in my prayers daily,
April
April – It is so good to have you here! I actually just found a co-op who will deliver for free and it is all natural and organic food so I am in the process of transitioning this month. I still will have to get a few foods from Whole foods every month but even cutting down the time and amount is helpful!
It is amazing how we all can relate to each other, huh! I love that about this process/journey.
Hi Dominique,
You’ve inspired me to start my own blog. I have so much fun reading yours and some of the others I’ve found. I don’t really know if I’ll stick to it yet, but I’d like to give it a shot. If you’re interested, the link is http://brightsideapril.wordpress.com/. I’m still working out the kinks and want to add more links (hey, that rhymed!).
Hugs, April
April – Wow! That is awesome April! I think you will be very good at it! I will check it out as soon as I can. I am still in bed with this bug I caught.
I’m really proud of you for taking a chance. You never know where this might lead you!:-)
Ohhh the good things and bad about not sleeping. After I had my son my body changed and he is going to be 6 and I could not sleep. There were many years that have passed when I would be up for days and many were 4 at a time, then I would crash. The doctors were amazed and could not find an answer to it and wanted to medicate me but I am not willing to subject myself to any meds that I absolutely don’t need. This is a result of being in and out of hospitols most of my life from allergic reactions to various meds. Anyway it is only recently within the last year that I have become better with not sleeping but now I find myself being tired all the time lol. I just can’t win.
Ohhhh I had a moment today…..I took my dog out and there was complete silence….Nothing…Zip….nodda it was amazing and it is the only time in my life I have ever experienced such an experience. Ever have one of those mornings?
Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising which tempt you to believe that your critics are right. To map out a course of action and follow it to an end requires courage.
– Ralph Waldo Emerson
Bog Hug
.-= Kimberly´s last blog ..Team Hoyt =-.
Kimberly – Wow! You are amazing! I just had a neighbor tell me I was making the wrong decision about the pugs and that they would not survive! I told a friend of mine I just didn’t get why people do that! And then here comes Kimberly with another quote that speaks to that very issue! AND Ralph Waldo Emerson is one of my top favs!
You Rock Kimberly!
I’m glad you had such an incredible morning! That is amazing when that happens isn’t it?!
Okay…I have to ask. What is a Bog Hug?
I hope by now you’ve been able to get a little sleep, Dominique! It is a paradox how the more we need sleep, the worse we sleep.
Are you treating your sleep dysfunction? I sleep “normally” most nights now and so does my son, thanks to effective treatment to correct the underlying endocrine imbalances. I wrote a blog post about it, but I think it was before you joined the CFS blogging crowd! if you’re interested in reading it, just use the search box in the left column of my blog to search for sleep dysfunction – it should be the first one that comes up, titled, “Treating CFS Sleep Dysfunction.” This treatment has helped us so much! And on those rare nights when I’m so sick that I still can’t sleep well, I take a half an Ambien – works great!
And, hey, I didn’t know you lived in Tulsa! For some reason, I thought you were on the west coast. My husband is from Oklahoma and grew up in Enid and Oklahoma City. His parents live in Edmond (just north of OKC) and we visit them twice a year. In a very strange coincidence, my best friend from high school (in Rochester, NY) ALSO married a guy from Oklahoma (Tulsa) and now lives in OKC, which works out well since I get to see her twice a year! Small world…
Hope you have a better week!
Sue
.-= Sue Jackson´s last blog ..Just Coasting… =-.
Sue – Yeah, isn’t that true. (The more we need sleep the less we do it).
I take Formula 303 which actually works 80-90 percent of the time. Ambien is a drug I won’t take. I had to get professional help to come off it as I got addicted to it. It was horrible. The withdrawals alone are something I never want to experience again. I will read you article though. I would be very interested in learning about how they treat it now.
No way! I know exactly where Enid is! Oh my gosh! Wow! It is a small world. Who knows? Maybe we will run into each other some day! LOL
I am working on doing a lot more resting as I did this weekend. Hopefully, this bug will let go soon.
I only take Ambien rarely – when I travel and once in a while if I’m severely crashed and in a lot of pain – and even then, I only take a half of a 5 mg pill, so I haven’t had problems with addiction. If I’ve taken it for more than a day or two (like during a vacation), then I come off it gradually – a quarter of a pill, then none – and there’s no problem for me.
Most of the time, my other medications (not sedatives) work effectively to fix the root cause of the sleep dysfunction.
I’ll wave the next time we drive through Tulsa!
Sue