Living with multiple sclerosis is exhausting

I think I slept a total of 3 hours last night if I were to add up all the time I wasn’t lying in bed just watching the minutes tick by. Nights like last night make for some really interesting days. You will find me yawning in the shower, as I work, and even as I eat and I still won’t be able to sleep for a short afternoon nap. It’s crazy how that happens.

Multiple sclerosis can truly be exhausting, more for some people than for others. I know it definitely is for me.

My days seem to always be filled with the longing to go to bed and my nights are filled with my brain refusing to sleep no matter how exhausted I am. It just won’t stop talking, and the random things it chooses to talk about are crazy. “Why can’t you buy a bag of Oreo middles? Why don’t penguins fly? Where is that middle of the universe, really!?”

I guess you could say the little sleep I do get at night are really just a few naps added together. I know I nap at 2 o’clock in the early morning hours while I’m longing to actually sleep. There’s something special about the 2 o’clock in the morning time. 

When my body is screaming at me to slow down and take a break, I listen now more than I did in times past. Those pauses in my day aren’t me being lazy or a sign of weakness, they are simply a necessary part of me taking care of myself.

I can’t stop the impact of MS on my day, but I can do better at handling the exhaustion that comes with it. If that means falling asleep at random times in the day then I do it. No guilt. No shame.

Know that you are important enough to pause your day too. Life is moving at such lightning speeds and it seems to demand so much out of us that rest just doesn’t fit into our plans. Don’t buy into that lie. Rest is needed and more valuable than you may realize.

Press the pause button today, hang out the do not disturb sign, and make the choice to be still in the middle of the day. Just try not to snore too loudly…or drool.

8 replies
  1. Gale Vester
    Gale Vester says:

    ‘yawning in the shower, as I work’

    You have no idea how good those things sound, to those of us who can’t do them anymore. Well, I can shower, but with help, although working is becoming a more distant memory. 🙁

    Sorry for my complaints. I hadn’t meant to use yours to springboard into winning the ‘award’ for most MS complaints!

  2. Amber
    Amber says:

    I take melatonin, 4 Benadryl’s, 3 tizandine, zzquil, gabapentin and smoke weed before bed and I can sleep for 10 hours. But if I just do one of them at night I sleep for 2 hours. 🙄

  3. Janet Stanzel
    Janet Stanzel says:

    I constantly say “I am so tired of being tired ALL the time”.
    I too can’t seem to get my brain to shut off at night with the stupidest things running through my mind.
    Filling my head with to-do lists or honey-do lists as my husband and kids now call them. 😉

  4. bunny
    bunny says:

    good morning 🌞. well i’m a night owl 🦉 by nature which doesn’t help matters so i’m the queen of infomercials, can recite the pitches by heart: ” wait!!! if you order within the next 5minutes we’ll double your order.. just pay separate s&h” LOL 😆

    but seriously have you tried melatonin, cbd oil drops or cannibis.
    all three have been saving graces for me. i use each depending on the level of my sleep symptoms.

  5. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope have you tried sleeping pills like Nornison or something similar. I had that problem and taking 2 at night with the Baclofen helps me sleep 7-8 hours a night, I got sick of not sleeping and getting strange thoughts at 3;00 am etc. See your doctor and see if it may help.

  6. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    My cats love when I nap or try to. Looking at the fur piles on the bed in the middle of the night gives me hope that I too can do that.
    Be well. Time for a nap.

    • Gale Vester
      Gale Vester says:

      Thanks for that tip! I’ve saved it to use later today, when I’m likely to wake up in the night again. ‘Sleeping pill?’ my brain asks, ‘Who cares whether you took a sleeping pill or not?’


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