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An exhausted figure walks up to a large looming maze.

The Maze

Each day, I wake up, and I begin a maze. I start out navigating through the maze pretty confidently. I feel like I can make it to the end without incident. It isn’t until I’m in the middle of it that I begin to lose sight of the end. I’m stuck in a rough place, and I start to try to find my way out, but each place that I turn, I hit another wall. I keep trying to get through it, but I begin to feel the walls closing in on me until it’s too much. I’m so exhausted trying to keep up that I feel defeated, and I just want to cry. It seems impossible to find my way out.

The fatigue hits in the afternoon

I wasn’t really just speaking about a maze; instead, I was speaking about what it’s like living with debilitating fatigue every day. I do wake up each day ready for the day ahead of me. I’m tired, yes, but it’s nothing I can’t handle yet. Each day, I wake thinking maybe today is the day that it won’t hit me as hard. Then the middle of the day comes. For me, this is around one or two o’clock in the afternoon. It hits hard, and it hits fast. It’s a wall of fatigue and exhaustion that only those with MS can understand. I hate that I know what it feels like to be so tired that I cry. It begins to feel impossible to get up and finish the rest of the day. Once that fatigue hits, you know that there’s no turning back. There is no amount of caffeine in the world that could even think of touching this amount of exhaustion.

The fatigue is always there

When I get this tired, I imagine myself like in an old-timey cartoon. I picture that there is a hook on the bottom of each eyelid and attached to these hooks are large weights that are dragging the ground. The bags under my eyes feel that heavy. It takes extra effort to get up and just walk to the next room. I could sleep twenty-four hours straight, and this fatigue would still hit me like a wall of bricks at the same time every day. Some days it’s better and not as intense, but if I’m honest with myself, it’s always there. Some months, it’s every day, and then I can go weeks before I know that the next month will be full of fatigue. I’ve compared it to quicksand before, but lately, it’s felt more like a maze – the most challenging maze possible.

I’ve tried what feels like everything

People know how terrible the flu is; well, try living with the fatigue that comes with the flu every single day. I don’t think there is any perfect way to combat MS fatigue fully. I’ve tried what feels like everything. I’ve been on medication, I’ve changed my diet and exercise, and I’ve attempted to rest as much as possible. It doesn’t matter what I do, the fatigue still persists. Sometimes things like medication help it ease up a little bit, and diet and exercise have helped give me a tad more energy, but overall, this fatigue just can’t be beaten. It comes in full force when it wants to, and nothing seems to touch it.

I keep pushing

I’m actually writing this at just before two in the afternoon, and as I write, the fatigue is hitting me. I’m fighting to keep my eyes open. If I had it my way right now, I would lay down and go to sleep. But, if you’re like me, that’s not always an option. So, we keep going. We keep trying to find the end of that dreaded maze. Fatigue is my most difficult symptom. It can make life much more difficult than it should be, but I keep pushing. It’s a struggle, but I use my inner strength to make my way out of that maze each day I come to it.

What are your tips and tricks to combat fatigue with MS? I would love to know.

XOXO,

Calie

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Contalita
    3 months ago

    Hello, Calie, I love your spirit, and the fact that each day you’re putting forth your personal best! Calie, before I was diagnosed I remember feeling so tired and I can actually recall thinking I’ll be back to my old self when my mind comes back(at that time I knew that something must be wrong, even though I did have a medical doctor and had discussed these things with her) I was working 9 hours a day and had an hour-and-a-half commute buy a regular bus and sometimes dozed off to sleep a couple of times on my way to work and once on my way home slept my stop, thank goodness a neighbor woke me up before the bus left my community. The one thing I can’t suggest I don’t know if you’ve tried it is I would splash cold water on my face at home, & while at work or anywhere else I’d use ice cubes and start by pressing the ice cube underneath the wrist and then applying them left and right of the foreheads temple.(& of course I know with MS that may not be the part where your body can receive the actions that the ice cube can make, so if that’s the case, the solution is easy, simply apply ice cube’s wherever you feel the most reaction from it and a bonus is it actually helps also if you’re feeling overheated. Calie, I hope this helps you,if; you haven’t tried it already and also that’s the best I could do is simply would not want to suggest what I was doing in the past which was drinking a lot blk. of coffee. Wishing you well, Calie☺!

  • mickims
    4 months ago

    Tricks to avoid- hmmmm. Can’t help you there – but, I have found that giving in to it helps. Came home from grocery shopping yesterday and too tired to put away groceries. So, went to bed, took a power nap, about 30 min and moved on.

    Maze is a great word. I get to the point where I simply feel like I’m outside of my body moving through the next thing. I wonder sometimes, what the checkout clerk thinks about me when I can’t get out a sentence and am too tired to laugh at myself.

    The best I can do is make all app’ts and meeting in the AM as much as I can control. Make lunch and then the dogs are bouncing around waiting for me to lie down – they must have MS too. Love their afternoon naps.

    I’m sorry you are feeling this way but, thank you so much for your words. You did a great job of explaining how most of us feel. Hard to explain to folks but, will be using “maze” to help. Feel good today.

  • Calie Wyatt moderator author
    3 months ago

    @mickims thank you so much for reading! I loved your advice to do as much as possible in the mornings. Thank you for sharing with us!!

    Best wishes,

    Calie

  • joshremus
    4 months ago

    Excellent article! I completely understand — mine hits more like 3pm but still…
    I do take Ritalin which I think helps some, load up on caffeine, etc.
    Do you find when you’re out and around and HAVE to be doing something it’s the same?

  • Calie Wyatt moderator author
    3 months ago

    @joshremus Thank you for reading and commenting! I find that loading up on caffeine also helps some, I just suffer with crashing even after that. It does seem to be significantly worse when I really need to get things done, funny how that works.

    Thanks again for your comment!

    Calie

  • SiouxH
    4 months ago

    Hi Calie,

    Thanks for writing about the maze. I have definitely had the 2 pm crash over the years. Thankfully like all of my MS symptoms it too waxes and wanes.

    One thing that has been helpful is to combat my own low iron, borderline anemia with Ferramax 150 mg daily. I was so low in my iron stores that I had to take 300mg /day for several months. I had thought that I was dragging my butt all the time because of the MS fatigue, but when my GP figured out that I needed iron and I got enough in my system, I was amazed to find myself feeling alert and competent through the whole day (just like I used to be…sigh).

    Iron pills don’t cure MS, but it’s an easy thing take control of the extra stress of low iron.

  • Calie Wyatt moderator author
    3 months ago

    @siouxh thank you so much for sharing what helps you! I can imagine that must have helped you greatly!

    Best wishes,

    Calie

  • mS1940
    4 months ago

    Hi Callie,
    Just read your post about the fatigue, when I started doing yoga I noticed I was experiencing fatigue less and less until I stopped experiencing it. It did not disappear overnight, I don’t even remember how long before I stopped experiencing it.
    Hope this helps,

    dori

  • Calie Wyatt moderator author
    3 months ago

    @ms1940 Dori, thank you so much for sharing! I absolutely love yoga and staying active! I have actually written about yoga in the past. It is so helpful!

    Wishing you the best,

    Calie

  • Irina
    4 months ago

    I have read and tested it first-hand that yoga helps for fatigue.

  • Calie Wyatt moderator author
    3 months ago

    @irina I love yoga!! It is very helpful!

    Thanks for the tip!

    Calie

  • Jamielee
    4 months ago

    Flu like symptoms! That was the phrase I’ve been needing, to explain to others about my fatigue!
    Thank you for sharing, I can relate so much too. As others said you put “words to my voice.”
    And we will keep moving further on, further in, one cup of coffee at a time!

  • Calie Wyatt moderator author
    3 months ago

    @jamielee so glad you found that helpful! Sending you coffee cheers from afar!

    Calie

  • RebeccaD’Annunzio
    4 months ago

    Yes, fatigue hits me hard at 4 pm every day! I’m already exhausted when I wake up, but 4 pm hits, and it’s like I’m having an out of body experience! Everything is moving/talking in slow motion. I, like you, keep going because if I don’t, fur babies won’t get fed, supper won’t be made, and homework won’t get done. I’m starting a new medication soon, hopefully it will alleviate some of my symptoms! Thank you for sharing!

    Rebecca

  • Calie Wyatt moderator author
    3 months ago

    @rebeccadannunzio I am wishing you the best on your new medication! I hope it really helps!!

    Best wishes,

    Calie

  • prenticestudio
    4 months ago

    I have had MS for 25 years. Fatigue, by far, has been the most difficult symptom to live with.

    Over the years, I’ve tweaked my regimen and what follows is what is working best for me at this time. My day starts at 5 AM but I’m toast by somewhere between 11 AM and 1 PM. I am very strategic in how I use my time. First, I figure out what my priority for the day is going to be. I can typically manage one “big” thing a day: grocery shopping one day, cleaning one day, etc, etc. Whatever the one “big” thing is, it has to be accomplished in the early part of the day.

    Second, I say “no” to a lot of things. I am very, very choosy about what I will do and when I will do it. For example: I meet friends for breakfast or lunch, not dinner. I rarely entertain anymore but if I do, it’s brunch or breakfast. Being tired so much of the time is very limiting. I accept this, more or less. I’m still not entirely comfortable about those limitations and I doubt I ever will be.

    Third, pills and potions. I am reluctant to talk about this because what works for one, will not necessarily work for another. I have tried many pills, potions and supplements over the years. The ones that I know have helped me up to a point: caffeine, one of my best friends. Adderall, but there are side effects. High dose biotin 600 mgs day, plasma exchange every three weeks. A moderate paced walk is more energizing to me than a cardio blowout. Copious amounts of vegetables and fruit ala Wahls protocol. Vit B12 injections twice a week.

    With this regimen, on some days I actually have days where I have enough energy to get through the entire day. Still, I am a long way from “normal.” But compared with where I was 25 years ago, I am actually quite a bit better!

    Also, I have (more or less) let myself off the hook about what I “should” be getting done or about meeting the expectations of others. Have I missed opportunities? Plenty. Have I lost friends? Yes. It’s part of the territory, alas.

  • Calie Wyatt moderator author
    3 months ago

    @prenticestudio I think every single thing you wrote are wonderful pieces of advice!! Thank you so much for sharing!!

    Best wishes,

    Calie

  • Christa
    4 months ago

    Ugh! I feel ya! Fatigue is my most bothersome symptom, and of course extreme fatigue can make my other symptoms worse. It would be so wonderful to wake up in the morning or after a nap and actually feel rested! I do my best to stay as active as I can, you know the saying “a body in motion stays in motion”, but it’s definitely not easy!

  • Loopyone
    4 months ago

    OMG Calie that’s exactly right.

  • jo70jn
    4 months ago

    Hi all , I have had MS and or Lyme for over 22 years. I’m
    Now 76 and fatigue continues to be my main symptom. I’m retired from work and much of life. I stay in bed for 14 plus hours a day. Many of the thins I have tried including coffee And other stimulants and other meds I have tried work for a little while and then not at all. Maybe I will try Ritalin as it seems to be working for you. I wish you and all the people with MS or anything else for that matter in their lives the best of luck. And if you believe in it praying to God has been proven it to be helpful for many people for many different. things.

  • missusms
    4 months ago

    thank you Calie…. it’s like you read my mind, those words that I can see that won’t come out of my mouth, or I cannot type because of my cognitive issues.
    Yesterday from 1230 on I was in bed …. I hate those days when you just can’t function…PERIOD…
    like you, early afternoon is always a downhill slide. Some days are so bad, like yesterday all I want to do is cry. Thank you for sharing, and reading my mind ❤️

  • TheFLogJournal
    4 months ago

    Never give up on your diet! Food-flammation is real and a contributing factor to all symptoms. All symptoms are real and can defeat us. Know your limits, your will and you faith in yourself. Xoxo

  • dawn1267
    4 months ago

    Callie, you have described my day…most every day. Mid afternoon I am struggling to stay awake. I have been on different meds like Ritalin, and straight amphetamines to help. It can help for a while but then my body laughs at me and says, “psych!” Caffeine does nothing. I get a 6 shot Americano and people always look at me like I am nutso…lol. I buy it hoping it will help. I work out in the morning when I feel more awake, or it wouldn’t happen. I too would like any suggestions to give me more healthy energy. If you find it, please share.

  • Kevin
    4 months ago

    I’ve had MS since ’96. I’ve had some fatigue on and off since it’s onset. I am now battling metastatic melanoma for the second time. First time was no big deal. This time it is more aggressive, so we’re on IV chemo once a month. WOW! Talk about fatigue. Not only is fatigue one of the chemo side effects, but it has kicked the effects of the MS up as well. I completely get it when you say that you just don’t feel like you can make it another minute. Chemo started back in Feb and I think that I’ve left work early 2 or 3 times. I’m a bit hard headed. I don’t want to give in and let it win, so I keep pushing on! Fortunately my management is very understanding. But I just feel like it is something that I must push through. Otherwise, I wouldn’t be working most of the time!! Hang in there. We can make it through this!!

  • RebeccaD’Annunzio
    4 months ago

    Prayers for speedy recovery! You’re right, gotta keep on gettin’ it! I’ve been through cancer 7 X and the MS flare ups are unbelievable during treatment, then throw in some radiation and watch the blood flow (literally!). It has been very trying at times. I’m 52 and a year away from my Bachelors! If I can do it, anyone can! Contact me anytime if you need to vent (478-795-0485)

    Rebecca

  • marthakayfrye
    4 months ago

    I started taking Ritalin about 4 months ago, I was the same way that you are. My Neurologist suggested that I give this medication a try. I will suggest this to anyone who is fighting fatigue. I’m up at 7 in the morning and I would always lay back down at 9. After I started taking Ritalin, I very rarely take naps or feel fatigued.

  • Karen2
    4 months ago

    OMG! How timely is this post. For the past 2 day’s I could barely keep my eyes open. Regardless of rest. My cognition is horrible. Forgetting day, time of day, my production value is null. I think it’s a change of season thing. Any other MSers in similar circumstance?

  • Shelby Comito moderator
    4 months ago

    Hi @karen2, I’m sure many here can relate with you, and although it pains me to hear what you’re going through, I’m glad this article provided you with a little solace. It’s comforting to know you’re not the only one experiencing this. Thinking of you and we’re here for you! – Shelby, MultipleSclerosis.net Team Member

  • messeeone
    4 months ago

    I thought I was tired of reading about MS fatigue (pun intended), but Calie, you said so many things I’ve been thinking! The feeling of having the flu is right on, as is feeling so tired you must cry. Or trying everything and realizing “this fatigue just can’t be beaten.” All I can add is, sometimes it’s OK to say “I can’t fight anymore today–tomorrow I will try again.” I’ve learned to just go with it instead of fighting a battle I can’t win. It feels somewhat depressing but it can be freeing.

  • Shelby Comito moderator
    4 months ago

    Hi @messeeone, I’m so glad Calie’s article resonated with you so well – well, not “glad” but I hope it provides a bit of solace knowing that you’re not alone. I love your advice and that you give yourself permission to just stop and rest on the tough days with the hope of better days ahead. Thanks so much for taking the time to share.
    – Shelby, MultipleSclerosis.net Team Member

  • Contalita
    4 months ago

    Hello, Calie, Sorry that your not feeling your best & I wish you well! I don’t know if this will help… before I was diagnosed I just thought I always had really long and busy days and would try to keep on going( lots of coffee, morning noon and night-& still could sleep through the night) Calie, now that I’m more aware of the symptoms that can be brought on because of of MS, when I have a fatigued a. day week or even month, I just ride it out, however; when my energy is normal, that’s when I use the energy to do the things I may not be able to do tomorrow or the week,or month ahead. I simply think of the fatigue time, as a planning time, & thanks to technology, no matter how tired, I can speak the notes, sometimes I even plan something fun or silly to do give me something to look forward to when I feeling better Calie, I know it’s hard when you have others depending on you however;please don’t beat yourself up just keep in mind it’s just the ebb and flow of MS…or on the sillier side…its just membership dues to be long to the Exclusive Ms Club☺.

  • Alina Ahsan moderator
    4 months ago

    Thank you so much for this sweet note of encouragement! I love your suggestions of ways to creatively use or get through the “downtime.”
    -Alina, MultipleSclerosis.net Team Member

  • StephanieEVC
    4 months ago

    I repeat over and over in my head as I move around a sentence that will push me back. I gotta get through this! Do you mind! I was beating myself up! This to I shall pass! God never promised an easy journey only a safe return! I grind my teeth shake my head put my shoulders back (painful when it’s in an MS hug) and keep doing it. The way I see it, I only have this one life it has its goods and bads pay no attention to the ratio AND look to the end. I look at it like what I will say when he says to me “what did you do?” I don’t want to say to him “well I tried drug trials, medicines and diet recommendations to overcome the pains and problems you gave me! Yes I knew of the risks… ” I’m a caffeine addict I don’t gamble I do as I say and read the word everyday. And yep the hard part is seeing the shortening list of things I could do, to what I can do. But hey at least I’m not a big loss to the working world.

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