Mr. Sandman Bring Me A Dream

To live, literally to be alive, humans must sleep. I’ve read that the brain flushes itself when we are sleeping, a little housekeeping, if you will, while we are in dreamland. I can only assume that without this sleep, and no housekeeping, the brain becomes a toxic wasteland. Again, I’m assuming…I don’t actually know. What I do know is that when you can’t sleep the body starts to freak out a little, like code red alarms and the whole nine yards. Makes sense to me, the body does an incredibly miraculous job at keeping us alive. Here’s the thing, yes there’s always a thing, with Chronic Fatigue Syndrome, our sleep patterns can go whack-a-doo. I’ve read that it can be a symptom, but I’ve yet to hear of a person with CFS who doesn’t have sleep issues. Now stick with me here because it’s all a little ironic. We are exhausted to the core of ourselves and yet our bodies aren’t able to sleep as we once did. Crazy huh? And just to clarify, for me, this happened over night. One night I was healthy and slept great, the next night I was up at 3am for hours. People have said things like, “Oh you are just lying around all day of course you aren’t tired”, or “if you’d just close your eyes instead of sitting on your phone you’d go back to sleep”, or, and this one is my all-time favorite, “just relax your mind.” I thought I’d take a moment to explain the answers here (in the real world my answers are usually silence as I’ve given up trying to explain this illness to people) to those commonly heard statements and then close with how I actually do handle my quiet time.

To address the first comment I’ve heard, yes, sitting around all day does take less energy, but we start our days with less energy so really by bedtime we are just as tired as a well person, likely much more exhausted. Personally, if I can ignore the Restless Leg Syndrome and the pain I’m often asleep within moments after my head hits the pillow. Additionally, I don’t get under the covers during the day so my body knows when the covers come up, the lights shut off. It’s later when I awake, usually around 3am. I am awake anywhere from an hour to a couple hours maybe even a few on rougher nights and then I sleep again for a few hours. So the fact that we are ‘sitting or lying around all day’, in my opinion, has nothing to do with the insomnia. I had a doctor once tell me that our Circadian rhythms are disrupted but he didn’t provide any further explanation of why.

That leads us to the most common second and third comment I hear. So once again, in my opinion, when the blood volume in the body is low, the body begins to panic.  Low blood volume is a common symptom in CFS. Your guess on why the volume is low is as good of a guess as mine. The body doesn’t have a message that says low blood volume, like your instrument cluster in your car, instead it starts just panicking.  Sending red alerts, sirens, bells, whistles…you get the gist. So our bodies are always in red alert mode, we frequently are getting feelings of urgency, just like anxiety, our adrenal glands are working overtime constantly.  Remember the last time you had an adrenaline rush? Whelp, can you imagine immediately lying down to sleep? Or waking up from a dream like that and expecting to fall immediately back to sleep? Folks, it doesn’t work. Anyway, when your body is constantly feeling low on resources…blood and energy and subsequently oxygen…your body has a hard time resting or feeling peaceful. My brain wakes up around 3am. I have no idea why this is, it wasn’t like that when I was well. Some nights are better than others but some nights are miserable. Miserable because of painsomnia. When the pain is so bad you cannot drift off, and there is no comfortable position, and the seems in your clothes hurt, and the weight of you body on the bed hurts, and you toss, and you turn, and you bargain with God or anyone to help ease the pain, when all of that is happening it’s a stones throw from places you’d never want to be. I tried in the beginning to read books but my mind doesn’t retain the information so well anymore, I tried to clear my mind, to count my blessings (this actually does still help), to meditate, to be still, to breath, but the honest truth is what calms my brain is redirecting it visually, which for me is my phone. Email, Facebook, Instagram, Pinterest, and games are the things I turn to to relax. I fall back to sleep much quicker when my brain is relaxed and preoccupied than when I just lie there focused on the fact that I can’t sleep. That’s actually kinda torturous, at least for me.

How I Spend My Early Hours Quiet Time

As I mentioned before I was a great sleeper until CFS, so I had to do a little soul searching to figure out the most loving way to handle not sleeping at the designated traditional sleeping time. I watch people on social media trying remedies, pills, sleep training and a variety of different techniques. I keep my eye out in case something seems to be of great help or I think I might like to try it, so far, my way works best for me. So what’s my way? I no longer worry about getting back to sleep. In fact I don’t think about it at all. I consciously try to enjoy that it is deliciously quiet and peaceful in the wee hours of the morning. I stroll around my phone, I’m connected with people from all over the world, so there’s always someone posting. And then I play games, that usually relaxes me and I eventually drift off. Also I drink chamomile tea before bed. I’ve tried eliminating that step and that’s a no-go for me. I was wired. I want to heal and I know that I must remain peaceful to do that. I know that ruminating over my sleep or lack thereof isn’t healthy for me. There are so many things I cannot control with this illness, but lying awake having anxiety about not sleeping is something I can control. I will add that I have the good fortune of not having to get up at any particular time, so I’m allotted this luxury of sleeping until whenever I awake. My heart aches for those who still must rise after little sleep and then push through the day.

The brain is a fascinating part of the body. When it’s ill and nobody really knows why, it becomes an enigma, but caring for it the best you can is really the best you can do. Everyday I try to oxygenate mine, feed it healthy food, give it lots of hydration, rest and peace and quiet.  I try not to overstimulate it and when it gets anxious I try to redirect those thoughts to more logical places. This brings me to one of my favorite quotes:

Do the best you can until you know better. Then when you know better, do better.

MAYA ANGELOU

Thank you for stopping by, please feel free to share your thoughts, even if you think I’m way off base!  Oh and one last thing! The movie Unrest is now on Netflix! That’s exciting news for those of us with CFS as this illness has been so misunderstood for so long and we are finally getting the research and exposure to find a cause, and hopefully a treatment and a cure.

To follow are a few more of my little paintings from the last week.  I’m still following along with World Watercolor Group’s daily prompts on Instagram. All skill levels are welcome and it’s a fun, supportive group.

19 thoughts on “Mr. Sandman Bring Me A Dream

  1. That is a great quote my dear. Ty for sharing. Also ty for explaining more about CFS. I have started the movie unrest, had to pause it tbh because I hate crying. I haven’t resumed it yet because of the bridal shower etc this weekend, but it is streaming until the 23rd. Gentle hugs my dear friend

    Liked by 1 person

  2. As a borderline narcoleptic, I feel your pain – literally! I’ve been fortunate enough to get relief with medications, but lack of sleep is detrimental no matter the cause. Wishing you peaceful nights 🌙

    Liked by 1 person

  3. Oh my, I cannot imagine how hard this must be to deal with. I have recently started to listen to podcasts, which helps me fall asleep. Perhaps you could try that out if you have not already?
    I personally don’t have insomnia, but don’t get refreshing sleep in general, because my brain is really active. >.> Which is really hard to explain. People think: resting + sleeping = energy. Trying to get it across that it doesn’t work that way for you is super hard ^__^”. So I totally sympathize with you for having to explain that counting sleep isn’t the cure all for insomnia.

    Liked by 1 person

  4. I love that quote! It’s quite freeing. I’m really hard on myself for knowing enough or making what I perceive to be poor decision in retrospect, so it’s a nice reminder to not beat myself up.

    Insomnia is really rotten, especially when you are unwell. I’ve struggled with it most of my life and it’s a completely different beast when you are chronically ill. Missing days of sleep when I was healthy still didn’t have the effect missing a few hours when I became sick! Luckily I slept really well now for the first time in my life due to the right medication. I hope you find peace and rest too.

    Liked by 1 person

  5. People with FM/CFS often experience “alpha intrusions” which disrupt their sleep. Think of everything you’re doing as eliciting brain waves, with a different kind of a wave for when you are intently focused, deeply relaxed, just mind wandering, in deep sleep, etc. As you may have guessed by now, alpha waves are not the waves that happen when you are deeply relaxed or asleep, and when they intrude upon the sleep waves, it disrupts the sleep state. (Big surprise! 😉 ) If you care to read more on the science of sleep disturbance in CFS, you may find this an interesting read >> https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3501671/

    In other news, I have found out too that when I can’t sleep, the best thing to do is to not TRY to sleep! If I read, or watch tv, or play on my phone, or really do whatever else, I will sometimes eventually relax back into sleep. But actively trying to sleep just stresses me out more because it never works, and pushes me into this vicious cycle.

    Liked by 1 person

  6. Sleep is a contentious issue for me, and it still bugs the heck out of me when others comment on it or how to “feel less tired”. I don’t sleep well at all, especially at the moment. BUT even in the past when I’ve had periods of decent enough sleep, I’m still tired. Tiredness that’s pervasive. I also notice the difference between sleep tired and body tired (that overwhelming fatigue and exhaustion that’s in your bones). I loved this post!
    Also love the paintings, so cute and delicately done 🙂
    Caz x

    Liked by 2 people

    1. Yes, lack of rejuvenating energy caused by illness and being ‘sleepy, tired’ are just not the same. But it’s so much energy to explain it all to other people.😐 Thank you for reading along and for your kind words!🌸 Really hoping that rest finds you again. To have lack of sleep on top of all the other symptoms plus bone crushing exhaustion is a heavy weight to shoulder. Hoping today gives you reasons to smile.😊

      Liked by 1 person

  7. Emma (Not Just Tired)

    Ah yes, not being able to sleep is so frustrating. In the first couple of years of the illness I was a terrible sleeper. The pain kept me awake, and then like you once I dropped off, I’d then wake a few hours later and be awake for ages! Feeling so exhausted but not being able to drop off is a total pain!! I’m also a very light sleeper (always have been!) so that doesn’t help! Since having my son, I actually sleep better for some reason – well when he does! I’m glad really, as he wakes early and then that’s me up and on it for the day! I still have nights when I can’t sleep though, and I really struggle with those as it impacts so much on how I feel the next day. I think your relaxed approach to it is a very good idea. Hope you’re feeling a little better x

    Liked by 1 person

    1. I’m glad to hear you sleep better now especially since you aren’t able to sleep whenever. My heart goes out to you moms with young ones. I’m doing a bit better but it’s slow going. I had labs two days this week and for some reason that leaves me so weak. Actually have 8 more vials to go but waiting for next week. Baby steps. Thank you for reading along and hoping you have a nice weekend!🌸

      Like

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