Sleep? What’s that?

I can’t tell you what a good night of sleep feels like because I don’t remember the last time I had one. Most nights I either toss and turn due to insomnia, continually wake up because the pain is relentless, or I actually sleep for hours yet still have the ability to wake up without getting any sleep. The kind of tired I feel on a daily basis just can’t be explained in a simple word: exhausted, ready to drop, fatigued, sleepy, run-down, pooped, worn out…nope, they just don’t explain my kind of tired.

The description I have of Multiple Sclerosis fatigue is the way someone feels after they’ve not slept in two days straight and then hiked 50 miles up the side of a mountain while carrying a backpack loaded with rocks on the hottest day of the year. But who in their right mind is going to attempt that kind of journey to truly understand what my tired feels like? It just doesn’t seem possible to feel tired like that every day. But then again, my body does a lot of things that don’t make sense.

For those that may have forgotten, my body is in rebellion and has turned on itself. That’s what Multiple Sclerosis is. My immune system has become overly charged with super power strength and sees my Central Nervous System as the enemy. It’s an amazing fighter, my immune system, it’s just fighting the wrong thing. It’s attacking what my body needs most to function properly.

And if you should think the Central Nervous System isn’t all that important, I would challenge you to find one thing in life that you can do without it. Our nerves are a part of everything we do from seeing, to walking, to eating, to sleeping, and even to yawning, blinking and sitting still. Have you ever had a pinched nerve in your back, leg or shoulder? Yeah, that didn’t feel so good, did it? Now imagine nerve problems like that which can’t be fixed with an adjustment or a pill because the nerves aren’t simply pinched…they are chewed up, and many times unrepairable. I would love to be able to simply un-pinch my nerves in order to feel better.

I’m yawning as I write this and can feel I need a nap already and I haven’t even gotten out of bed yet. I look forward to the day I wake up and Multiple Sclerosis is no more. That’s my dream…and I’m sticking to it.

MS Gets on My NervesMS WarriorMS Superhero  

About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

34 replies
  1. Dawn Theresa Anderson says:

    I really appreciate everyone’s honesty of what is going on in your lives & knowing I am not alone with this disease & very HAPPY that I can come on this great pg & just know I am not as crazy as I think.

  2. Ann Radabaugh says:

    I went through April on 60 hrs of sleep, and started taking Trazodone to establish the sleep cycle that Seroquel pretty much removed. I am re-establishing a cycle, but, my entire job, every day–all day–is trying to stay awake! With Fibromyalgia, CFS, OA, and Depression and Anxiety, adding a sleep deprivation has been devastating. But, progress is being made on the cycle…someday, I’ll be able to sleep, AND have a quick nap, as well. For now, I must fight the overwhelming desire to sleep every minute. Prayers for you, Penelope!

  3. Anna Simons Empson says:

    I feel the same way a lot I’m 37 yrs old with a husband a 10yr old son and a 2 yr old baby girl oh plus 3 chows I often feel like a 70 yr old more often an exhausted something or other. Any tips on not being exhausted and maybe an energy boost would be stupendous

  4. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    That sounds too familiar to me. I don,t have much pain thankfully but my fatigue levels are over the roof. This is what makes me exhausted doing simple tasks like doing the fishs or or making some drinks for the others here (and me)
    Some some of my Central Nervous System is working ok but some has sucke tha life out of my way and left me for good (or bad)
    I like your description of how to recreate fatigue. It rings of familiar to me as well.

  5. Sarah Johnston says:

    Positive is not always laughing and joking. It’s talking about the tough times and sharing the realities of life with one another in a safe place so everyone can see that we all have tough times. If we are expected to smile all the time, that would be a lie for the perfect people to feel comfortable. No, we share truth and in that truth we find positive support that we are not alone.

  6. Karen Harris says:

    But why is it so hard to sleep with ms?pain can wake me up ,but I have not slept in 3 nights again.I never had insomnia until a few years after diagnosis.I feel so tired when I go to bed I feel ready to sleep…..

    • Briana Lynn McKitterick says:

      Your body is constantly trying to repair itself, therefor not allowing you to rest. MS is not just MS. MS, in most cases, comes with a lot more issues to deal with such as insomnia, restless leg syndrome, and many more disorders that can leave your body restless.

    • Briana Lynn McKitterick says:

      That is very strange! One of the biggest symptoms of MS is crippling fatigue. Of course, as you said you hadn’t experienced it before, MS is not only not just MS but MS is also an ever changing disease within our bodies. In the course of two years, I developed a LOT of new symptoms and disorders after being confirmed with MS. I definitely do not feel the same way I did when I was first diagnosed and it is like that for mostly everyone. So, you shouldn’t be surprised if you get new symptoms or disorders along the way. Our bodies are just trying to figure out how to control itself, even though it’s our bodies themselves who is preventing our body’s control.
      The best advice I can give you is to look for a Multiple Sclerosis specialist. They are the ones who went to medical school, found MS and became passionate about helping people with this disease. An MS specialist will be able to confirm or not whether a symptom of yours is common with MS patients and the specialists have all of the new and fully updated information about MS. When I was first diagnosed, I was incredibly lost. I had no idea how I got MS, what MS was, what to expect, why I never felt normal, why nothing was helping me – my neurologist saw me TWICE before shooing me off to see the specialist. Neurologists go to school to fix brains, not to treat un-fixable ones. Getting an MS specialist on my team and really delving into his endless supply of information was what set me on my course towards understanding the changes of my body.

      I wish you the best of luck and I hope you find some sort of relief soon. There are drug store medications you can try such as Melatonin and Z-Quil, both of which you should consider the possible side effects of. Other than that, there are other non-medicinal ways of finding sleep. I urge you to utilize the internet for “Do It Yourself” or “At Home Remedies” and try some things out that may work for you. Again, wishing you the best of luck!

  7. shari
    shari says:

    Thank you for giving us the okay to vent every once in a while, I have days when it all comes crashing down on me, I feel as if I just need to tell someone how tough things can be. I guess that is what it is to be human and in reaching out to another it not only lightens our load for a little while, it gives others the permission to do the same, so I thank you for your post today. I know from all your other posts that you truly had a rough morning today, so I just want you to know that I hear you and wish you a better tomorrow.

  8. Sandy Jones says:

    Three different alarms, frequent changes of venue (recliner, couch, bed…) and two dogs who think their names are “snooze” and “not now.” I’ m considering becoming nocturnal…

  9. Nancy Pierce says:

    Or like hello stupid here- forgot to take her meds for her bladder that has spasms for a couple of days and was up all nite in pain with a bladder that felt like it was trying to pass a stones the size of a softball- before the med finally kicked in- BOY I won’t forget to take it anymore———– 🙂

  10. Karen Grant Grocock says:

    Such a perfect read for me this morning, my sleep patterns-lack of sleep, and fatigue have been immense of late, and this helps me to know, that it is not just me, and I am not alone! Also, a person can not be positive ALL of the time xo xo <3

  11. Mary
    Mary says:

    It’s like you’re talking about me. Although I feel terrible that you hurt. It is comforting to know this pain is not my imagination I wish I could fix us both.

  12. Marie Caruso says:

    It’s positive because we see we are not alone in our struggles, the encouragement I have received just by reading other people that have been through the huge variety of symptoms makes me smile that I’m not crazy, or mean or losing my mind like some drs have tried to convince me of. Love this, and it is positive not because we don’t talk about these things but because we do

  13. Christie Jo Klump says:

    i might add that it is positive and healthy to to vent and and be there sharing support , silently bearing it all is negative as is saying its not positive obviously . it IS positive to be forthright and support one another through this disease thats very different for each of us and caregiver. it isnt always humor making it positive.

  14. Christie Jo Klump says:

    Being positive is a bigger struggle through fatigue
    You maintain yours with grace and humor. Thank you for helping me us with keeping up humor , joy , and balance on the most seemingly impossible days that we can still do this. Xo

  15. Stephen
    Stephen says:

    argh! getting in to bed at night doesn’t have the same lure it used to. taking prescription sleep meds and still not sleeping is the worst. like the song says, “i’m so tired, i haven’t slept a wink…”

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