Sleep through the night? Are you serious?

“So you say I can feel rested if I just go to bed early and get 8 hours of sleep each night? Really?”

That’s my response to people who ask me why I’m always so tired even after getting a full night of rest. You see, they don’t seem to understand that our full night of rest is more like a trip to a baseball game on a sold-out night.

It goes something like this…

You find your seat and settle in for the game with your team shirt on, a foam finger in one hand and a bag of peanuts in the other. “Play ball”…the game has begun, but since you are in the third seat on your row, everyone has to step over you to get to their seat. Your toes get stepped on by the first person coming by, you get smacked in the head with the next lady’s purse, and elbowed by the person after her.

You endure constant commotion and movement as people carry drinks and food up and down the row. One person even spills part of their drink on you. Then, just as the game is getting good, the person next to you starts talking so loud that you can’t even hear your own thoughts anymore.

You are stuck listening to everything about their job and the problems they are having with their boss…things you didn’t need to know, but now do…and in the process, you miss the epic play of the night. You were there the night a world record was set, but have to watch the replay to find out what really happened. You simply wanted to enjoy the game but it seems like there’s more going on in the stands than on the field.

That about sums up a night of sleep for me with MS: pain, dizziness, tossing and turning, muscle spasms, and an overactive brain that won’t shut up.  A night of sleep…I wish!

When someone tries to rationalize or downplay your fatigue, it can hurt. Many times it seems like the more you try to explain how tired your tired is, the more they try to fit it into their little perception box. Understandably so, they aren’t the ones living with it, but sometimes you just wish you could give them a taste of what your fatigue really feels like.

If only they could understand that your muscles are worn out, your brain can’t process thoughts clearly, your words keep getting mixed up when you talk, your head is spinning even while sitting still and the numbness throughout your body has intensified beyond explanation.

Most of the time I try so hard to press through the worst of those moments, but over time I have found that it’s important to give myself a break. Listen to my body…slow down and rest. Naps are my friend now. They are good for too.

I know the world is buzzing by at hyper speed and it tries to force you to keep up with the pace it sets, but MS has a new pace for you. Besides, most of the buzzing about that the world wants you to do isn’t really important anyway. Hold onto the things that really matter and let the rest go. Simplify your life. You’ll be glad you did. Your fatigue may never go away, but you will have less collapsing kind of moments…and for that you will be grateful.

8 replies
  1. Donna Evans
    Donna Evans says:

    I find if I just potter thru out the day, I can get most things done. Do a little bit like make bed, stop and rest, put dishes away, stop and rest. That sort of thing. Once I get into bed every muscle decides to let me know were they are , then bladder decides it needs to be released every 2hrs or so, but of course it won’t let it all out, just enough that you have to get up again 2hrs later. 8hrs uninterrupted sleep is a dream come true.

  2. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thank you Penelope. I use 5 baclofen and 2 Normison at night and that gives me 6-8 hrs sleep. I usually wake up feeling rested but I still have the odd times that cause upsets to my sleep, but they are getting fewer and that is good. I can alter the mixture and get more or less times, it depends on what I need to do that day.

  3. Caroline BURRELL
    Caroline BURRELL says:

    No one understands when I say I’m tired . It’s like “well you’ve been in bed 7 hrs “ , they don’t get it . I wake up feeling more tired than when I went to bed . No one gets it .. and that’s hard to deal with .

  4. Peggy
    Peggy says:

    So much like myself. But thankfully my husband does understand and let’s me sleep or nap! He too needs naps given his heart problems.

  5. Heather S.
    Heather S. says:

    I wake up every night after a few hours of sleep. All of a sudden I am wide awake. Nothing is bothering me except that I am awake. It takes hours to fall asleep again and many nights I don’t. Yes, naps are my friend. I can’t get by without them.

  6. Jackie A Burris
    Jackie A Burris says:

    Penelope, this resonates every day with me. My husband of almost 38 years gets upset when at the end of the day I say that am at the end of my rope. He works 10 hour or more days and is exhausted when he comes home so I understand his frustration, just wish could get him to understand mine. Poor guy is totally clueless but he is so lucky his “fatigue” is the “normal” kind like ours used to be once upon a time. 🙁

  7. Mary E Slavik
    Mary E Slavik says:

    Thank You Penelope!! I needed this today. I feel like that many days. Beside dealing with my MS, my husband has Alzheimers. Is very trying at times! Your column really helps encourage me. THANK YOU!!


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