What I Really Mean When I Say

What I Really Mean When I Say ‘I’m Tired’

I was talking to a friend last night, and when she asked me how I was, I answered with my usual reply; “I’m good, just really tired.” It made me realize how often I say that. I mean, it’s my usual reply for when anyone asks me how I’m doing. It’s my everyday life, this whole being tired thing. It’s become something I say without even thinking, because it’s just always looming there in the back of my mind. It’s not a matter of lack of sleep, laziness or anything of that sort. I try to do everything in my power to stay ahead of it, but one false move and it takes me down. HARD. While reading the other night, I came across this quote, and it explained the fatigue so accurately for me; “The only thing she consistently felt was the exhaustion. It was like a weight in the center of her bones, pulling down on her. The heaviness consumed her.”

Fatigue has been my biggest demon

Fatigue has been my biggest demon since being diagnosed in 2004. And, one of the most difficult things for me to explain to others is my level of fatigue. I know others relate to this miserable feeling, and I understand the frustration of telling someone you’re exhausted. I feel my friends and loved ones do their best to understand, but its not one of those things you can just easily explain. Most days when people ask how I feel, I want to just blurt out, “Oh I feel like I’ve been hit by a dump truck, have the worst hangover of my life, and have the flu. And all of those things are simultaneously fighting against each other, making my mind and body feel like a complete wreck”, but since that seems a little intense, I just simply reply with “I’m good, but I’m tired today.”

I don’t expect others to understand

When I say I’m tired, no offense, but unless you have chronic fatigue, MS, or something along those lines, I don’t expect you to fully understand. I know others may feel like they can relate when I say I’m tired, but its not quite the same. The fatigue we deal with isn’t the same as being tired. And even to say I’m exhausted doesn’t do it justice. Like that quote said, my fatigue and exhaustion consumes me. It does weigh me down from the center of my being. The only thing I can think to relate it to is, it’s like I’m sinking in quicksand. The weight of it is pulling me down, and some days it’s all I can do to keep my head from going under. Every attempt to function properly is altered by the heaviness. Every move and every thought takes effort and the little bit of strength that I have left.

Being weighed down

Physically, it feels like I’m being weighed down by the vicious pulling of the sand. Its of substantial strength and it hurts and I have to fight the pressure to keep from sinking. Not every day is like that, but after an emotionally stressful last few weeks, I’m feeling the weight of my fatigue in full force. It’s a daily battle to get out of bed, and no matter how strong I think I am, each attempt to do something is met with resistance. The fatigue is something I have to maneuver through to complete whatever it is I’m attempting to do. It’s on these days that every bit of energy I have is used to complete simple everyday tasks, and by the end of the day, I feel spent and don’t have much left to give.

Fatigue is like quicksand

The best description I’ve read about fatigue says, that being tired and exhausted can be overcome, fatigue is there to stay. Again, it’s like the quicksand. I know you probably haven’t ever personally dealt with quicksand (or at least I hope not), but you’ve probably seen it in scenes of a movie or TV show. Someone ends up wandering through the desert or the jungle, and they come upon this sneaky sand that easily blends into their surroundings. They aren’t expecting it, so when they come upon it, it quickly tries to swallow them whole. They fight their hardest to try and step out, but it’s not that simple. You can’t just simply walk away from it. The fighting and resistance makes it worse until they have no choice but to succumb to it. The best thing I’ve been able to learn is how to function with the fatigue the best ways that I know how. I try to fight it, but most days I just go with it, because that’s the only way I know how. Some days are easier while some are harder. I despise it, and I long to be free of it, but like the quicksand, I can’t just walk away. I’m stuck.

It’s been exhausting

I needed to vent on my fatigue today, because it’s been, well, exhausting. Some days I find peace in knowing that I don’t go through this alone and someone can relate. Every time I go through these episodes of severe fatigue I long for the moment it will end, so I can go back to my sort of normal. So, now I want to leave it to you…does your fatigue tend to swallow you whole for months, like mine does me? What do you do to beat it?

XOXO,
Calie

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Comments

View Comments (40)
  • mrsaristotle
    4 months ago

    Fatigue.

    Someone says to me you should read this book about how to cope with MS. Really they have no idea how I feel.

    Just writing and reading is exhausting. The more tired i am the worse my spelling and comprehension gets its like my brain switches off. The more tired I am my eyes will start to see double, and I can barely look at the computer screen as it makes them so heavy and then the pain will start in my eye. I hate that.

    Talking.
    Is EXHAUSTING. I have had to tell my brother i simply cant talk to you anymore as i am struggling to catch a breath. I start to yawn copiously and feel rude but i cant help it.

    To me fatigue is like being encased in concrete boots and trying to walk forward is just a huge effort. I have finally succumbed to my idle electric wheelchair. I swore i would never use it, but lately i have too. Putting one foot in front of the other is getting harder and harder. My days reclining on my recliner longer and longer. The invisible concrete boots have been replaced by my comy socks.

    I used to be uber fit worked 60 hours a week easy.

    Now i struggle to eat, drink, breath and pee. I am constantly getting a uti because i am way too tired to get up to the toilet, if i could have a bottle i would pee in it, that is how tired i get now.

    I HATE it.

    I agree with iluvdogs, what is the point of wasting energy to try and explain to people unless they have it they will never understand.

    I can say to my sister I am exhausted today, she will just say, well we all get tired at our age………. like its a normal thing. So why bother to waste energy answering.

    Typing this is exhausting. I am sick of being tired.

    What is so weird i dont think it has anything to do with how much sleep we get.

    I can have the best night sleep and the worse day, and vice versa. I almost hope i will have a bad night as to have a good one is like HELL for me as I know my recliner is going to feel my knackered body on it nearly all day.

    Eating.

    Fatigue is so bad you cant bother to cook or eat. Its beyond us. I have nearly choked on food because i am just too darned tired to chew it.

    My fatigue is definitely activated by heat, hell i darnt have a shower because it wipes me out for at least 2 days. Just stand down wind of me you will be ok, now thats fatigue. Heat ugh. Give me cool days my body loves it.

    Tired now i slept well…………………..oh dear………..

  • Georgie5952
    4 months ago

    Best description I’ve ever heard. I too have described it as walking through wet sand. Everything and thought can be such an immense effort. There’s no spontaneity of “hey! Let’s hop in the car and just go…we’ll buy what we need for the weekend where ever we decide to stop…oh wait, I can’t. I gotta go pack my meds and grab incontinence supplies. And I’m not sure if I’ll be okay with just crutches or do I need the transport chair.” Even thinking about and typing all of that made me tired.

  • joddl.
    8 months ago

    Callie, I’ve been living with MS since my early teens. I am now 53 and I have to say you’ve explained fatigue better than I ever could. My mother in law just left after a 5 day visit from Brooklyn. We reside in Utah and yesterday was the worst since all she wanted to do was eat out breakfast then dinner. Don’t get me wrong, we enjoy her company but yesterday I gave my husband that look. He jumped up and advised I go to bed ASAP. It was only 7 pm, I bid her good night and crashed. This morning I feel a little better but not as good as my usual self. I’m at work right now and I’m logging off since my neck is starting to tingle. Thanks for your input.

  • Coby
    7 months ago

    Wow! You’re a better man, then I! I couldn’t deal with in laws for 7 days. I’m 49 and I’ve had ms since I was 26. It’s a terrifying disease. I always wonder though. Are RA, Lupis, other autoimmune diseases, diabetes as terrifying as MS??? Can they relate?

  • michclaud
    8 months ago

    Callie, your explanation is the best one that I have ever heard! When I was working I had to walk the till drawers for the registers in a grocery store and at times I would be walking and the pain & the weight of the fatigue would make me have to just stop until I could get my legs to finish what I had to do . Not all of my fellow employees knew about my MS so they would just stare at me lol but life goes on. I had to retire & go on SSDI so now I am home & deal with my daughter who I am living with doesn’t understand but I just have to say I to certain activities because of the fatigue or the heat exhaustion & the pain!

  • HeartThing
    8 months ago

    I was diagnosed in 1998. Ease and self compassion is the only thing that has really helped with the extreme fatigue…coffee doesn’t even help that much. Calie, I appreciated your vulnerability. HeartMath Institute tools have helped me to stay “neutral” and manage any projections I have… the heart focused Attitude Breathing has helped me manage my emotions during tough days.
    Take care, DanB

  • marsha.kreho
    8 months ago

    I have MS too, and I totally understand your struggle!! Over the past two years I have realized that thoughts are things. We have to be conscious of what we say. Like when replying to someone asking how we are…we can reply;”I am doing well and very thankful for_______.” Instead of focusing on the fatigue, I try to focus on what IS going right. I had a baby in October and am not on ANY medication because I’m breastfeeding, but I started paying attention to what I say and what I focus on because my body really listens to what story I’m telling myself and others!! And having a newborn on top of MS fatigue isn’t an easy feat! So, the fatigue is still there but not as prominent (it is also the biggest thing I struggle with because of MS). It’s tolerable now though because of what I say and feel! I would like to recommend a book that helped me a lot!

    https://www.amazon.com/Heal-Your-Body-Louise-Hay/dp/0937611352

    Best Wishes,
    Marsha

  • DJDave
    8 months ago

    I too was diagnosed in 2004, and Fatigue has likewise been my biggest struggle, especially because I am still working full-time (+ overtime). Its like you said, no amount of sleep seems to make it stop. I constantly have this sensation that my neurological system is running at high-idle inside me, even while not in motion, which I think leads to the frequent and rapid fatigue all day, every day, even if I do make sure to get plenty of sleep. I do feel the fatigue is eating me alive, and I wish I too knew how to beat.

  • Tracey
    9 months ago

    All I can think of to say is, “WOW”…not good, not bad, just WOW. I was diagnosed in August 1998 and this is the first time I have ever responded to anything. I want to add to Calie’s quicksand analogy. For years I’ve been trying to explain the way fatigue feels on me. Calie came pretty close!

    For me, it’s like every step is getting out of a swimming pool. Inside the water I feel free and can move easily…almost like before, but the second I step out of the water gravity kicks in and pulls me down. Every step I take is like that. When you throw in the imbalance it’s not a good feeling.

    Thanks for sharing, Calie. It’s validating to hear others know what I mean!

    Tracey

  • CatMom
    9 months ago

    Calie, your descriptions are spot on. Living with fatigue is grueling. I have days where trying to form a thought, let alone a sentence, is nearly impossible. Thankfully, my furbaby doesn’t care! I no longer stress if I didn’t wash the dishes last night or about making sure everything is dusted/vacuumed/etc in case someone stops by.

    I’m one more who can relate.

  • Coby
    9 months ago

    I have one question-
    I have to manage my fatigue before I am swallowed by quicksand but I also have to run a household and of course, exercise.
    I know the importance of exercise, I just find that going to the grocery store and maybe cooking dinner for my starving family is all I can take. Let alone, attend my sons baseball game and be social. I need the latter to have more quality of life. What gives??

  • messeeone
    2 months ago

    Coby. You wrote this 8 mo. ago and I’m just now seeing it, but I just had to tell you I was you several years ago. My kids are grown now, but my advice is: 1, set daily expectations low. It’s now “giving in,” it’s “working with what you got.” 2. Prioritize: Which is most important today–shopping or going to the baseball game? (It’s amazing what you can find already in the cabinets/fridge to feed the family), 3. Keep coming back to this forum for support and to know you are NOT alone!

  • Nancy W
    9 months ago

    I came here today because I am frustrated by my fatigue. It is the first warm day of spring. Here on the East coast, it has been cold, with snow just a few days ago. Today it is in the 70s. I forgot that just a little heat has a great effect on my energy level. I should have stopped and rested but I wanted to do “one more thing” For me, fatigue affects my ability to think straight as well as being tired.

    So I decided to finish taking my winter ceramic houses down to the basement. Unfortunately that was a bad idea, because when I went to put them in a box, I knocked one on the floor and it smashed to pieces.

    The hardest thing for people to understand is how much effort I put into NOT getting fatigued. I look good. But, I try not to put myself into situations where I get fatigued, because it can be dangerous because I can’t think straight and get anxious.

    Yesterday, I was at a friend’s house when her husband came home with the groceries. He is in his 70s, long retired and does all the grocery shopping. He goes to several stores, cuts coupons and shops for deals. I could never do that. I get my groceries by ordering them online and picking them up. Getting them in the house and put away takes enough effort.

    This is just one example of how I need to adapt to my fatigue. When I am out and about, no one can see it and I don’t go out when I am feeling that way.

  • Coby
    9 months ago

    I can totally relate! I’m going to buy my groceries online now. Every little bit helps.

  • PrincessRita
    9 months ago

    NICELY PUT ! I can relate and you have described this Ms fatigue better than I’ve ever heard it. Good job.

  • 1j62tpv
    9 months ago

    Tired? Tired is what I was after an allday hike in the muddy boonies with an US Army Infantry Battalion carrying weapons, batteries, radios and your personal gear ruck sack. MS is a different tired in my case. I have always fought to take one more step but after MS I lose the fight all too often. If I can stand each step is thought through as I remind my legs and feet what they are to do. Then a simple dizzy step or sudden black out of the lights and I am down on the floor or ground. A simple squat thrust would get me up and going under normal conditions. But with MS it is normal to say I can’t. The legs won’t untangle, the knees will not bend, if I manage to eventually roll into a position sitting on both ankle I still can’t recover because telling my leg muscles to push up and straighten is inpossible. The commands fail to reach the muscles. I reach for and try to grasp stationary items I can pull up on with my arms. Sometimes I succeed but my legs remain bent hanging uselessly unable to straighten and hold weight. Add a few rounds of dizzyness and I am down for 10 to 15 minutes. Rain or shine.
    By the time I low crawl on my belly to a stable fixture to pull up on, that old infantry hiking fatigue kicks in again. But this time the fatigue is dominated by frustration and some anger that I cant get up by myself.

    I suppose the frustration acts as an invisible exhaustion multiplier if not an exponential notation. on the fatique scale. I often sit on a scooter or in a chair thinking about how easy it should be to stand, walk across a few feet and pick up the tyrash can to empty. But I know I can’t possible accomplish the task so I resign and sit watching someone else doing what I should be doing.

    Then there I am seated on a plane when an elder passenger is struggling with the overhead storage bin. I garner evil looks from others because I am seated knowing if I could stand lifting the weight would topple me on my face in the aisle and I’d be holding up impatient passengers trying to scramble onto or oout of the plane. They can’t see why I don’t rise and help. There is no empathy except for the senior citizen trying to use the overhead bin.

    Tired or exhausted. MS is much more like exhaustion to me. Compounded by frustration and embarrassment.

  • Nancy W
    9 months ago

    So true about how we look to others. I have a hard time asking for help because I look good. Last time I went on a plane, I preboarded. I probably got dirty looks but I try not to let that get to me.

  • re4upd
    9 months ago

    So agree with this description. I fight MS fatigue with exercise- not too much, not too little. Sometimes it is difficult to know how much. I also try to eat non processed foods and avoid simple carbs. I felt worse cutting out gluten, better adding lots of green leafy veggies and vitamin d and magnesium.

  • 16wq1h4
    9 months ago

    This article describes how I feel everyday. It’s exhausting trying to explain the level of fatigue I feel to my loved ones. It’s great to hear I’m not the only one. That’s what is so great about this online community. Thanks so much for sharing!

  • tejay
    9 months ago

    Now I need to share this article with all of my loved ones. Thanks for explaining it so well!

  • potter
    9 months ago

    I don’t have unrelenting fatigue like other MSer’s but I do have a limit on my energy. If I go grocery shopping and put them away, that is all I can do. I usually have to pick up a pizza because I will be too wiped out to cook. Right now my house needs vacuumed and dusted, but I wanted to water outside today so it waits. It is 2.30 in the afternoon and the watering is finish but so is my energy level. I think I’ll be able to make dinner. For the MSer’s who have heat fatigue carry your water in a cooler using frozen water bottles as ice. They have saved my life when I have been overcome with heat. Just put them on the back of your neck until the blood going to your brain has cooled. Potter

  • Calie Wyatt moderator author
    9 months ago

    Hi @caninemom6142!

    I don’t think any of us necessarily feel the need to explain our fatigue, but want to at least try and help our friends and loved ones somewhat understand. Will they ever truly understand? No, probably not. Of course no one understands what it’s like unless you have MS yourself. But, I wrote this because I do find comfort in knowing I’m not the only one feeling this way. Its exhasting, in every sense of the way, and just knowing that someone else “gets it” helps me get through it! I’m sorry your fatigue seems so much like mine, I wish we could all get rid of it.

    Wishing you the best, Calie

  • LuvMyDog
    9 months ago

    Thank you. But from what I read on here, every time I logged on, someone is saying that they find it so difficult to “explain” their fatigue, pain, etc… People DO try to explain, no getting around it.
    When I was a small child, my father always told me, “look at things the way they really are, not the way you’d like them to be.”
    I am a very realistic person.
    The world is not the way we’d like it to be and neither are people.
    Trying to explain to anyone, whether it be a friend, a doctor, anyone at all, the agony and aggravation of living with MS, is a lost cause.
    As I said, you can’t for a second understand what it’s like falling off of a mountain, unless you have fallen off of that mountain yourself.
    If you’ve never experienced a broken limb, a broken nose, a serious car accident, you will never ever truly understand what that experience is like. To you, those experiences are just stories.
    I will never try to explain what MS is like to someone who doesn’t have this disease, it’s a waste of precious breath.

  • LuvMyDog
    9 months ago

    I honestly do not understand why so many people feel the need to EXPLAIN fatigue and pain and all else that comes with this disease. People who do NOT have MS are NEVER going to understand and furthermore, I don’t think they care to. It’s not them, why should they.
    I was diagnosed with MS 36 years ago and having this disease all of these years has allowed me to see more of how phony people really are.
    Would they change places with you if given the chance?
    Would they take the pain and fatigue for you?
    No they would not, not on your life.
    So all the “oh, I’m sorry you’re not feeling well” or “get some rest” or all the other comments made are merely automatic, like someone in the grocery store says to you, “Hi, how are you today?” They don’t really want to know, it’s something too many people are programmed to say because they think it’s the “right thing” at the time.

    What “I” really mean when I say I’m tired…..I’m drained, I’m exhausted, I feel like I haven’t slept and yet I just slept a solid 8 or 10 hours! I have no energy. My house is a mess, I can’t clean the way I used to, I can’t do much of anything I used to. I want to but the energy just isn’t there.
    Is someone going to give up their time and energy to come in and clean and straighten and mow the grass and plant my flowers and feed the birds and squirrels and do the dishes and all else on a daily basis??
    No….but they will say, “sorry you’re not feeling well, hope you feel better tomorrow.”

  • msisme12
    9 months ago

    Callie, After reading your article I finally felt that someone else understands how I feel. There are days that I feel like I can’t move. My extremities feel as if they are made of lead and my head feels all fuzzy. I will just tell my family that I HAVE to go to sleep, or I will not be able to function. Although I know that there is no solution (yet ), but it’s nice to know that I am not alone.

  • Calie Wyatt moderator author
    9 months ago

    @22qv0hx I hate that you also can relate to this, but I’m thankful to have others who truly get it! Thank you so much for commenting, it’s nice to have other people who understand.

    ❤️ Calie

  • nancyprn
    9 months ago

    The quicksand analogy is spot on. Still, trying to explain this tired we have is almost an exercise in futility. The only ones who get it, are those who have experienced it! Nothing ticks me off like saying I’m tired and having someone say “me too”. What I wouldn’t give to be their kind of tired!! Just venting. Carry on.

  • Calie Wyatt moderator author
    9 months ago

    @nancyprn, I completely understand where you’re coming from! I often feel the same way when someone says “me too”. I’m glad we have someone we can vent to who truly understands!

    Best Wishes, Calie

  • ms carrier
    9 months ago

    Calie, I to have fatigue/tiredness. I also have wondered at what point do I stop telling people that I’m tired since I am tired 24/7. It has become my normal.

  • Calie Wyatt moderator author
    9 months ago

    @11ayddn it has become my normal as well. All we can do is help our loved ones try to understand. We know they love us, but sometimes I think It’s hard on them not being able to help. They hate we’re goinf through it, but can’t do anything about it just like us. This fatigue is vicious that’s for sure.

    Thank you for commenting!

    Calie

  • LuvMyDog
    9 months ago

    Yes, it IS your normal, as it is mine. Why do you feel you have to explain to people? I gave up on that a long time ago. If you have never fallen off of a mountain, you will never know what it’s really like now will you. The same goes for the person with MS and the person who doesn’t have MS. You cannot fully understand what you have no personal knowledge of. As far as I’m concerned, it’s like talking to a door knob.

  • messeeone
    9 months ago

    Calie, you are in good company, though it often doesn’t feel that way. I’ve been trying to explain/understand/describe/live with this feeling since I was diagnosed in 1993! I once led a support group for moms with young kids and we agreed there needs to be a new word for “fatigue,” but we never came up with one. To cope over the years, first I’ve had to accept that it is disabling, not just laziness or not trying hard enough. It’s real and you have to respect it. Second, I stopped trying so hard to explain it– too exhausting, like you said. Finally, what’s really helped is articles and blogs like yours where we can help each other–and our friends and loved ones–understand, connect, and feel we’re not alone.

  • Calie Wyatt moderator author
    9 months ago

    @149sgo0 I couldn’t agree more on everything you said! Thank you for commenting and helping me feel a little less crazy. Some days I tell myself to suck it up because it can’t be “that bad”, but the truth is, it is…It’s a constant battle for sure.

    Best Wishes, Calie

  • Girl
    9 months ago

    Bandmom, there indeed needs to be a new word. I read this post where MS-related fatigue was described as “pathological exhaustion”. Read Article here https://www.linkedin.com/pulse/meeting-ms-patients-point-unmet-health-needs-dr-mario-weiss/

    Indeed, the testimony of others helping one know they are not alone is a potent help. Thanks for sharing.

  • scoop944
    9 months ago

    Calie, you are definitely not going through this alone! I despise this theft of my life also. Sometimes I want to scream, if I wasn’t so fatigued. My fatigue and exhaustion consume me.
    Your description of the fatigue sounds all too familiar and I am so sorry you have this unrelenting symptom also. I also have fatigue that alters my daily activities for many months at a time, especially after having any type of cold, flu, or even a minor injury. Stress doesn’t help nor does the subtropical climate where we live.
    The quicksand comparison is a very good one. A description I’ve often used to describe the fatigue is that I feel like my batteries have been depleted, removed, and I’m just running on empty. And I can’t find any way to recharge them, and there are no charged batteries to be found. Sadly a good night sleep does not resolve this fatigue. On the contrary, I feel worse upon awakening.
    Occasionally I start feeling an increase in my energy level in the evening. And that makes me want to accomplish whatever I can. But I always feel like I’m playing catch-up. I’ll try to do too much and then have to pay the “MS tax.”
    Sometimes I’ll stick my head under the faucet running cold water in the laundry room just to alter the strange feeling in my head. At times that helps the fatigue for a while. I only take cool showers and try to stay inside during the hottest parts of the day. The constant heat and humidity do not help my fatigue. If I do need to go out into the heat, I make certain to have a bottle of cold water with me and occasionally take an aspirin before going outside. Thank goodness for AC.
    When I get up I do some light stretching exercises. At least it forces me to start moving. There’s a FaceBook page I recently found titled “The MS Gym” geared to people with MS that is very helpful. Trevor Wicken is a well trained and certified physical and sports medicine therapist. Check it out!
    I remain hopeful, though, that every tomorrow can bring a better day and I hope you have better days heading your way!

  • Calie Wyatt moderator author
    9 months ago

    @scoop944 thank you so much for commenting! I try to play catch often as well, and seem to over do it 99% of the time. So frustrating! Thank you for your recommendations, I definitely appreciate it. And, like you I always remain hopeful!!

    XOXO, Calie

  • Judy
    10 months ago

    Totally get the fatigue. The thing that I notice is the months of debilitating fatigue happen at the change of seasons, especially from winter to spring, for me. One thing that totally frustrates me is when well meaning friends or family keep asking me if I want to do something during this time, and they don’t let it go. How many times do I get to say “no. I don’t have the energy” before they get it? I just want them to leave me alone and let me get through my day, the only way I can, by doing what I have to and resting. I love them for loving me, but I’m just sayin’ 🙂

  • Calie Wyatt moderator author
    9 months ago

    @jpdzme I feel the exact same. It’s so nice to know they care, and we love them for it, but sometimes it’s frustrating knowing they can’t quite understand.

    Wishing you the best, Calie

  • moorecattales
    9 months ago

    Here is how I describe Ms fatigue. I have a small bank account of energy. And when it’s gone it’s gone. I have to pick and choose what I want to use it on. There is very little energy in the account to start with. Yes, I too have been turning invitations from friends to do things

  • Calie Wyatt moderator author
    9 months ago

    @16y09e3 I love your description of fatigue, very fitting! Thank you so much for commenting!

    🙂 Calie

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