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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

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

  • JD67
    2 weeks ago

    After reading this I was relieved and kinda excited.
    And again have no relief or diagnosis of anything.
    Long story short. I’ve had many injuries from age 13 to
    42 of my head and spine.
    Also been recently told by a medical pain management that MS can develop from injuries. That was last year. Seen several doctors since and no one has confirmed that it could happen.
    I have all the same symptoms as read in this article, plus it get bad I can’t see or think.
    Can’t seem to get any help.

  • Janus Galante moderator
    1 week ago

    Hi JD67,
    I’m so glad that Calie’s article resonated with you, and that you found some relief from reading it.

    I’m sorry to hear that you have had all those injuries to your head and spine! You mentioned having seen several doctors and sometimes having problems seeing or thinking. Have you seen a neurologist at all?

    While we can’t give any medical advice (for your own safety) if you haven’t done so already, you might want to try a neurologist. Hopefully you can get the answers and help you need!

    Please keep us posted and let us know how you’re doing!

    Thanks for reaching out here….Janus

  • lk1234
    2 weeks ago

    It’s not worth telling anyone about my fatigue. When I say I’m tired
    I really mean it. I get “I’m tired too”but for me it’s Like when I get into my car after work I can’t start driving to go home
    Or when I get home I need to sit in car for 30 min because I cannot make it in the house it’s not just “tired” it is an all consuming fatigue And it’s not funny it’s frustrating to hear “it 8 pm past your bedtime hahaha “
    I gave 1000% to work. I’m done☹️
    No one is listening

  • vvxjr9
    2 weeks ago

    vaguegirl – I always said when I was struggling to walk that it felt like my legs were in blocks of ice or stuck in cement. I wonder if anybody “got it”

  • Janus Galante moderator
    2 weeks ago

    I sure hope so vvxjr9!
    It can be so frustrating trying to convey what’s going on in our bodies (or minds for that matter!) Janus

  • vaguegirl
    2 weeks ago

    i always tried to explain to people that walking (when i used to walk; ah, the good ol’ days) was like walking through really deep snow or carryiing huge globs of mud on your boots. remember as a kid trying to get through really deep snow, how hard that was? those of you who didn’t grow up in the cold parts of the world, well, maybe mud … anyhoo, i still am dealing with hauling around heavy limbs, but i don’t think they are the problem so much. after 3:00 in the afternoon i am pretty much worthless; sometimes even mt EYELIDS seem to heavy/ i feel for you, my friend!

  • Janus Galante moderator
    2 weeks ago

    I get this vaguegirl!
    After an all day marathon yesterday of going here and there trying to prepare for a winter storm/blizzard warning starting tonight, I was barely functioning by mid afternoon. So happy to have made it home before it got dark, (5:00 p.m.) and yes! Even my eyes. (I have more of a focus issue.)
    You’re definitely not alone! Janus

  • SherriLane
    4 weeks ago

    Ahhhhh! Accidentally posted that reply!How to delete it and retry?!

  • Shelby Comito moderator
    4 weeks ago

    Just fixed @sherrilane!! Thank you so much and let me know if you need anything else! – Shelby, MultipleSclerosis.net Team Member

  • SherriLane
    4 weeks ago

    I really do get it❣️
    Me‍♀️+(=)= ‍♀️
    …I was diagnosed In 2003, so 16 years ago… How do you know if you have progressed to SPMS? My Neurologist is hesitate to say.. or isn’t sure, so I have no clear answer. But yea, this sounds like me on the daily! I’m sorry- I feel you! #TheStruggleIsVeryReal! ❤️

  • pippa 67
    1 month ago

    Oh yes, Im there with you on everything you wrote so eloquently……………Ok gotta take a nap now zzzzzzz

  • Shelby Comito moderator
    1 month ago

    Thinking of you @pippa-67 🙂 Thank you for your feedback and for chiming in! – Shelby, MultipleSclerosis.net Team Member

  • Janus Galante moderator
    1 month ago

    Hi CindyLou,
    thanks for your post. They are all terrific questions!
    Hopefully these links will help to answer them:

    https://multiplesclerosis.net/living-with-ms/the-relationship-between-fatigue-and-insomnia/

    https://multiplesclerosis.net/symptoms/fatigue/

    If you have any other questions or concerns please know that you are welcome here anytime!

  • CornishJon
    1 month ago

    I find it hard to stay focused and awake after I’ve finshed doing my normal 9-10 hours a day at work to pay bills and that included going straight back to work after my 2nd round of Lemtrada , no body understands or cares apart from close Family and Friends that do understand , but it is getting harder and harder as time goes bye

  • Janus Galante moderator
    1 month ago

    CornishJon,
    it sounds to me like you deserve a medal! That’s certainly alot to accomplish. Especially after all of those hours of work, the Lemtrada, the day to day activities BESIDES having the m.s. and the fatigue, etc. that comes with it!
    I hope it will encourage you when I say that you’re not alone. I hear what you’re saying and get it! There are times that seem nearly impossible to get out of bed much less put in a full day at work!
    That’s what this community is all about. To care for, support, and listen to each other in a safe non judgemental atmosphere.
    You come back here anytime you want to, as much as you want to!
    Thank you so much for sharing your post. By doing that, you’re helping others that are going through similar situations to know THEY aren’t alone either.
    We’re with you!
    Janus

  • ColletteLeonor
    2 months ago

    I could not have said it better. Your analogies are perfect for describing my daily challenges. I am in the progressive MS phase and the fatigue is unrelenting. The tiredness is often so intense that it is painful.
    Thank you for the time and effort you into this essay.

  • Kathi758
    2 months ago

    I am so tired I will fall asleep sitting up, I go lay down and I am out like dead for hours and I had just got up a few hours before. I’ll sleep for 6-8 hours and then get up for awhile take my pills then go back to bed and sleep soundly for another 11-14 hours..

  • CindyLou
    2 months ago

    I have a question. Is your fatigue the same as an overwhelming feeling of needing to sleep, even though that doesn’t help either? I don’t know if the feeling of needing sleep is due to medication or is fatigue none of the above. I’m confused of fatigue vs feeling sleepy and unable to sleep. Any help out there? Thanks

  • Langston55
    2 months ago

    Thanks for your description of fatigue. It fits me perfectly at this moment.

  • Gmrobin13
    2 months ago

    You got it “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” We Need to Say the Above…
    Gail

  • Joan Williams
    2 months ago

    My fatigue is always there waiting for me to overdue. Knowing the signs helps me to back off a bit before I fall.

  • Sandee Hess
    2 months ago

    Have you used Modifinal? My neurologist has prescribed it for me and I have been taking it for 7 months now. It is for narcolepsy but has been found to help with MS fatigue. I was sleeping and exhausted all the time and like you it was my worst symptom. This medication is helping. I still have the fatigue, I still have to take naps most days, but I am getting things accomplished.
    Not a complete answer but helps immensely.
    I read recently that the research being done with Modifinal with those with MS is showing improvement in cognition.
    I think that may be the case for me.
    Anyway food for thought

  • Paula Bowman
    1 month ago

    I take that also and I wouldn’t get anything done without! However you have to make sure you take it in the morning or you may be awake all night.

  • Gmrobin13
    2 months ago

    Never heard of “Modifinal”.
    Do you have any Side Effects?
    Gail

  • Paula Bowman
    1 month ago

    I haven’t experienced any side effects and I’ve been taking it for 7 years!

  • Duf103
    2 months ago

    Trying to plow through fatigue caused me more harm than good. Dx in 1997 with RRMS then SPMS shortly thereafter. I have run the medication gauntlet, and multiple tricks suggested to keep up the pace. The only thing that helped was listening to my body. I stopped making excuses for why I could not do something (like driving when I was fatigued), I reluctantly ended my very demanding dream job. I started to stop pushing and started listening to me. If I am having a bad day then I adjust my plans. I stopped getting upset over these temporary setbacks and learned to go with the MS flow…Most of the time. This an on going process and I am still working on it.

  • Meowz
    2 months ago

    My fatigue is hard to explain as well. I just feel terrible but i try to disguise it in front of people. I feel it takes forever to complete tasks that before I would do in such a short time. I am overwhelmed with trying to clean up my cluttered house (when did that happen??) and when I feel like I get a lot done (which seems to take hours) my bf will come over and say ” I thought you were gonna clean the kitchen” or “what did you do today around here?” I just get so “tired”. I just feel mentally exhausted as well. I need frequent breaks. It is so hard to explain. And when you feel like that you have no motivation.

  • Emlivh
    2 months ago

    Unfortunately I have tried explained Ms fatigue but some still don’t understand. Quite honestly now I just say it’s the MS and leave it at that. My husband keeps saying “you don’t owe anyone an explanation if you feel like you can’t do it just say you can’t do it end of of discussion “

  • Emlivh
    2 months ago

    I know the feeling. I especially hate it when people tell me how can you be tired when you haven’t done all that much.

  • Mitch Sturgeon moderator
    2 months ago

    Emlivh, isn’t that the worst? I would like to think these people suffer from a lack of information, but I don’t believe I would’ve said something like that to anyone even before I knew about MS fatigue. I wish we didn’t have to spend so much time explaining ourselves to others, but we do you have this responsibility to inform them — sigh…

  • baggie58
    2 months ago

    My fatigue is present all the time, it never lessens, although it does sometimes worsen. I only ever have half a day available; if I can stay in bed in the morning and rest then there’s more chance of me being able to do stuff later in the day, usually after 2pm. If I know something’s coming up that I absolutely have to attend, like a family wedding, or a medical appointment the only way I can do it is to stay in bed all day for a few days beforehand, getting up in the evenings. Even then there’s a possibility that the damn illness could decide to rear up and bite me.
    I liken it to walking about underwater in one of those old fashioned diving suits you see in movies, with the big brass helmets and clumpy lead boots. When I’m trying to explain to someone how difficult it is to walk I tell them that it’s like the feeling you get in your feet and legs after getting out of the water after a lengthy bout in a swimming pool, but it doesn’t go away.
    Reading this post (thank you Callie) I’ve loved seeing everyone’s different descriptions, proves that it’s different for all of us.

  • baggie58
    2 months ago

    Ps – also, it’s made me terse, grumpy and tetchy. Everyone will know this feeling, when you’re so tired you can’t waste even one second on an extra word, written or spoken. I hate that it’s made me like this 🙁

  • Shelby Comito moderator
    2 months ago

    What a vivid analogy @baggie58! I really appreciate you sharing, as it can be such a help for others, too. Chronic fatigue takes such a toll on one’s physical and mental health, and although I’m not a fan of making excuses myself, I think it’s more than understandable to feel grumpy and terse. You are SO strong to be dealing with this day after day! Be gracious with yourself and know you’re not alone in this. This community gets it, and we’re here for you and cheering for you – Shelby, MultipleSclerosis.net Team Member

  • Toddlius
    2 months ago

    Yes, and like you said, “I’m just always tired,” so I just go with it. I just do what has to be done, not much more.

  • t.reyn
    3 months ago

    When they are looking to see what your going to do …. and you know it’s going to be disappointing because you can’t even think about moving

    It hurts to see what it does to everyone who needs me

  • bayard42
    3 months ago

    Well said.
    My whole life (73) went leaning on others to solve problem. No longer want this and it didn’t even exist anyway.. Now what exists is listening to bettering myself comes from People same , similar to me.
    Fatigue showed up last two years. Wasn’t on my list things that would happen to me.
    Again well is your writing.

  • m.Todd
    3 months ago

    Many times I feel defeated when trying to explain my MS issues with anyone. I always feel like they don’t believe me and always tell me what I’m doing wrong. None of those people have any experience with MS, but since they have heard about how someone deals with it, I MUST BE WRONG! So, I’m also learning to just say “I’m good, but I’m tired today.”

  • cal889296
    3 months ago

    I have to tell everyone that all of you actually get it. Feeling this horrible fatigue is painful (so to speak) because you have to work hard to try and help others understand what you mean. It’s horrible to hear “I’m tired too.” I get it. Everyone is exhausted and tired from their own daily lives. Totally understandable and I am not and would never take away from anyone. I describe this exhaustion as “my head is tired.” I tell them my head is tired from my chin up to the top of my head. I can walk for miles, but my head is just so tired, blinking is a struggle. Sleeping for more than 8 hours doesn’t even help. It’s just awful.

  • Calie Wyatt moderator author
    3 months ago

    @cal889296 your description is spot on. This kind of MS fatigue is awful! You’re not alone!

    Best wishes, Calie

  • janden520
    4 months ago

    The only comment I can add to this wonderful description is that MY fatigue feel more like I’m walking in a giant bowl of oatmeal. Only my head and arms are above it and I need my arms to help pull me along. It’s hard to pick up my feet so I shuffle them through it. And climbing up out of it is impossible. Even getting horizontal doesn’t fix it. And the only light is that I know it will stop. But I don’t know when. So if I wake up after an episode of this and I CAN pick up my feet it feels so wonderful.

  • Calie Wyatt moderator author
    3 months ago

    @janden520 love the oatmeal description! So accurate! So glad you shared with us!

    Best wishes, Calie

  • jt62952
    3 months ago

    I’m feeling it so bad today

  • Tonya Carter
    4 months ago

    For me I just stop fighting it if I’m in the middle of doing something I will stop take a break. If I am able to continue I’ll do a little bit more if not I let it go and attempted again another time. I stopped telling people that I’m tired, exhausted or fatigued. Therefore there’s no need for me to explain why I’m so tired and I’ve just gotten out of bed or just brushing my teeth put a toll on me I can’t even cook breakfast. It took time but I finally came to the conclusion fatigue will slow me down but it will not stop me.

  • Calie Wyatt moderator author
    3 months ago

    @loveyourself I feel the same, I won’t let it stop me!! Thank you so much for reading and commenting!

    Best wishes, Calie

  • esme2288
    4 months ago

    I describe my fatigue – exacerbated by ADD – as having a lead ball in my lap. I can have everything I need to do something productive, but as long as that lead ball is in my lap I can’t do anything. I can’t move in any direction, and my arms aren’t big enough to wrap around it so all I can do is sit and wish somebody would come and take the lead ball off my lap.

  • Calie Wyatt moderator author
    4 months ago

    @esme2288 that is such an accurate description! I understand completely how you feel. Thank you so much for reading and commenting!

    Best wishes, Calie

  • dvxl00
    5 months ago

    I also have tiredness most of the time. I have had M.S. for forty five years. The older I get the more tired I feel. Even in my wheel chair on a trip I am tired. So glad my husband of 49 yrs understands. I am tired of it

  • Calie Wyatt moderator author
    4 months ago

    @dvxl00 wow 45 years is a long time! I know you must be so tired of it. I too have a wonderful, supportive spouse. I know he can never truly understand, but he is so good to me! Thank you so much for reading and commenting!

    Best wishes, Calie

  • Victerglass44
    5 months ago

    My wife says she understands but I know she’s tired of hearing about my health issues. I do my best not to say anything about it. I also feel guilty for staying in bed so often. I truly hope things get better for you.

  • Calie Wyatt moderator author
    4 months ago

    @victerglass44 I know the feeling completely! I am blessed to have a wonderful husband, but I know he can’t fully understand. Thank you so much for reading and sharing with us. You’re not alone! I hope things get better for you as well!

    Best wishes, Calie

  • Victerglass44
    5 months ago

    I feel exhausted daily, so I can relate to this article. I hate this disease!

  • esme2288
    4 months ago

    I’m with you, Victerglass44. I hate this disease and I hate what it’s done to my life and I hate having to hear people tell me that “it could be worse.” Sure, it could be worse, things can always be worse, but it should be better. There is no upside to MS.

  • MoonGirl
    5 months ago

    I feel relived reading this.
    It’s been 2 months since i frist experienced the heaviness in my legs- EXXTREME HEAVINES.
    I feel as though i am carrying around dead weight with me all day long.

    I’ve not been infomred i have MS but the symptons ar exact! At this point i am not scred for that to be the case and just relieved to know whats the issue!

    I went through a 2 week period where my brain fog was BLANK- There was nothing there at all! I was at work and strugging to write a sentence together.

    I am going to the Dr this week and i will be mentioning MS

  • Calie Wyatt moderator author
    5 months ago

    @moongirl I hate that you’ve had to experience those symptoms, but I’m glad you found this article at the right time. You are not alone! I hope you find the answers you’re needing at your doctors appointment this week. ❤️

    Best wishes, Calie

  • doctp12
    5 months ago

    The fatigue is miserable for me, so very difficult to just get out of bed but a shower and a plan for the day, like work really helps.
    My neurologist prescribed Nuvigel which works wonders for me, not saying everyone should take it, ask your neurologist!!
    However, seems to get me to about 3 pm then I’m dead again!
    If I take another iR even half, I cannot sleep.
    Such a balancing act and different for everyone!
    But, ask your neurologist first!!!

  • esme2288
    4 months ago

    Have you tried showering in cool water, doctp12? It’s not as pleasant, but I’ve found that I’m much less drained, also that I don’t stay in there very long!

  • Calie Wyatt moderator author
    5 months ago

    @doctp12 I’m glad you found something that gives you relief from fatigue! It is definitely a balancing act!

    Best wishes, Calie

  • tracilogan
    5 months ago

    Thank you so much for writing this. I feel this on a regular basis and I feel no one understands, not even my husband. I have not been officially diagnosed with MS but my doctor suspects it and I’m waiting on my neurologist appointment next month. I’ve had two mri’s in the last 6 weeks due to extreme fatigue, partial paralysis and loss of strength and balance issues. I feel like I’m going crazy. It is effecting my work and daily life. I get the “ you don’t look sick,” and looks of I must be faking it on the few days I don’t have symptoms. I’ve gotten to a point I just don’t talk about how I’m feeling anymore and just feel guilty on days I can’t even get out of bed and just want to sleep because my husband thinks I am just tired and work through it. I keep telling myself that he doesn’t understand because he saw the athlete that competed in marathons, hiked 9 miles not to long ago, not to mention an avid hunter but can’t even hold my rifle anymore. I have tried to explain to him that if he is having a hard time dealing with that, image how I feel but it doesn’t help. I’m sorry for the rant but thank you for allowing me to.

  • Victerglass44
    5 months ago

    My wife says she understands but I know she’s tired of hearing about my health issues. I do my best not to say anything about it. I also feel guilty for staying in bed so often. I truly hope things get better for you.

  • Calie Wyatt moderator author
    5 months ago

    @tracilogan I’m so glad you found us! Your feelings are valid in every single way. Not understanding what your body is doing is extremely difficult, especially when you’re waiting on a definitive diagnosis. I am so sorry to hear that your husband doesn’t understand. Please know that we are always here for you with open arms! If you haven’t already you might ask your doctor about support groups in your area, and we also have resources to help you find one if need be. Finding those that understand is sometimes the most comforting thing. Please reach out anytime! Thinking of you. ❤️

    Best wishes, Calie

  • TraciDL
    5 months ago

    I have MS. This is my 1st time seeking out some understanding as I’ve only been aware of the diagnosis 1.5 years. Your description and so many of the replies nailed it. I am a writer by nature and would probably benefit from venting although i tend to see things cynically or humorously and not so sure i have a platform or where to find it. I sure have some brain fog stories that made me laugh at myself.

    I walk like I’m drunk and into things sometimes. I get the raised eyebrows a lot for my time consuming fumbling around for something simple, then dropping it at registers. I know there are days i should use the cane I have, but think “they will think I’m trying to get attention ” (“they” being family or friends) some friends if that’s true I guess. In all, it’s not always a disease people can see, so it gets minimized. I have had 2 heart attacks. I have had a stroke which contributes to right sided hand numbness and some other things, but the MS has kicked my butt the hardest. And the fatigue is endlessly frustrating. If I plan something, I either force myself to follow through, which never works out, or cancel. If I am feeling good and like I can do something I spontaneously reach out but its usually “sorry, need more notice” and spontaneity is misinterpreted as flighty more often than not. My husband is my greatest support. He has seen the non stop cleaning, full time working, do it all and do it right super mom turn into a very unpredictable mess. Every day in MS is a new adventure. God Bless my granddaughter for creating a whole magical busy world of pretend all while grandma lays on the bed or sits in a chair on the days I can’t play.

    I am learning to own this stupid disease but I don’t like that I have to. I’m sure like many others. Thanks for a place to vent.

  • Calie Wyatt moderator author
    5 months ago

    @tracidl thank you so much for reaching out and sharing your story! I hope you know this community is always a safe place for you to vent and we’re so glad you’re here! I wanted to invite you to share your story on our site here: https://multiplesclerosis.net/stories/. Thank you for reading and for commenting!

    Best wishes, Calie

  • Cherken9086
    6 months ago

    This describes MS fatigue very well. I’ve had MS for 25+ yrs and fatigue has always been extreme. I used to say I felt lethargic all of the time before I knew it was technically fatigue. I have used the description of being hit by a truck, the worst hangover ever, and the flu added to it.

    The only other people I found that understand it had cancer. One was my Dad when he was well into pancreatic cancer. I spoke to him about it the summer before he died from it in October. The others had breast cancer and were going through chemo. They have both survived. I don’t feel like I can say “it’s like having cancer & going through chemo,” but it is. Thank you for sharing your experience. It does help to know we aren’t alone.

  • Calie Wyatt moderator author
    6 months ago

    @cherken9086 I’m so sorry to hear your father passed away from cancer. The fatigue we endure is so difficult—and I agree, it’s comforting knowing we aren’t alone! Thank you for taking the time to share. ❤️

    Best wishes, Calie

  • Cherken9086
    6 months ago

    Thank you. ❤️

  • New to me
    7 months ago

    My frustration is everyone “assuming I’ll be to tired” and no longer ask or include me in anything, I used to be the “fix anything” dependable guy, my shop was a constant flow of coworkers vehicles, now I might not even open the shop door for weeks, put things off until I have a good day no longer works, I find slowing things down, taking sitting breaks even if I feel ok really helps, come up with a solid plan on how I am going to do something helps, even errands, getting outside (when it’s not hot) getting lots of fresh air vs sitting around inside the house, I wish I had a magic idea for you, maybe one day MS will be no more.. Take care

  • VickyA
    7 months ago

    Fatigue beautifully described. The thing I have found most helpful is Hyperbarric Oxygen Treatment. If you are in the UK check out http://www.msntc.org.uk there are centres all over the UK and as a charity run for MSers it is v cheap. Before I went I was NOT getting off that sofa anytime soon. 2 wks after I started going it was if someone had switched the lights back on. 8 yrs later I still go once and week and miss it if I don’t. Coupled that with Vit D3 and following the OMS diet (Dr George Jelinek) which is really effective. Good luck to you all hope you find what helps xxx

  • thellama
    7 months ago

    I wish I could say that I didn’t understand. And at the same time I wish those around me did. The worst of my battle is fighting the fatigue…..with a 13 year old son that is used to me being his little league coach and sports practice partner. And a wife that I feel guilty as hell when it gets so hard to do the things I used to do to help. All I ever wish is that this would go away….but it’s not. It is always good to hear that there are others that do understand and are in it with us. I hope we both have good days today…..

  • Jamielee
    7 months ago

    Calie, you are not doing this alone! I too know this fatigue.
    I say only “MSers really knows this fatigue.
    From a friend who try’s to stay out of quicksand and speaks and knows the “lingo.”

  • Calie Wyatt moderator author
    7 months ago

    @jamielee it’s always so comforting to know someone understands! Thank you so much for reading and commenting!
    Best wishes, Calie

  • sopht1
    7 months ago

    it is so true, u have to have it to understand it! Do u find even chatting with a friend or on facetime drains your reserves? I recently spent 4 hours with a lovely friend, just chatting, but really my limit is an hour, 2 hours absolute max, and i felt so ill and fatigued and headachy for 3 days afterwards..just shows how important it is to keep within our limits! xx

  • Calie Wyatt moderator author
    7 months ago

    @sopht1 I can definitely relate to this! Phone conversations and FaceTiming can be draining!! Thank you for reading!

    Best wishes, Calie

  • 1weclbc
    7 months ago

    Wow Calie, I could have wrote this for myself!
    It is almost impossible to explain to others about fatigue. I try and tell my friends and family it is like trying to walk in wet cement up to your waist. But your explanation does a very good job. Just know that I DO understand. I was diagnosed in 2008 and I am grateful that so far fatigue is my biggest challenge with MS. Take Care! Tammie L.

  • Calie Wyatt moderator author
    7 months ago

    @1weclbc Tammie, I love your description of wet cement as well! I am also grateful that fatigue is the worst thing I have to face!

    Best wishes,

    Calie

  • Kitsy
    7 months ago

    Great description! I have learned to pace myself in such a way that every few days I have almost normal energy and strength to do something I love, such as a bit of gardening or play with a grandchild. This confuses the people I’m with and they say things like, “Wow! You are so full of energy these days!” I let them know that I will need a day to recover, but it’s worth spending the energy on what I love. It’s sort of like using your savings for a wonderful vacation. Most people get it.

  • Calie Wyatt moderator author
    7 months ago

    @kitsy I also find that playing with my son and staying active helps me! I love how you said, “it’s worth spending energy on what I love.” I couldn’t agree more! Thank you for your comment!

    Best wishes,

    Calie

  • azboomersooner81
    7 months ago

    I noticed quite some time ago that I use the “I am just really tired,” explanation when I am asked “how I am doing or feeling?”
    Yes, my fatigue swallows me up and spits me out for months. I have been diagnosed with MS for 16 years and I still do not know how I beat it sometimes and others times it devours me whole.

  • Bkboo
    8 months ago

    Ugh the MS fatigue…Its debilitating to say the least! I wish it was from working hard, staying out late or even not sleeping! The many people that do not have MS tend to say oh me too I didn’t sleep well, etc…I just want to give them MS for one hour so they can feel what its truly like to have MS fatigue. Its hard for me to understand so I cant blame them, but they can learn about it.
    I use to go go go!! Now, I rest when I need to and take Armodafinil to get through the day.

  • Diann1
    8 months ago

    I havent seen light of days in years! I hate, i mean HATE to tell anyone because “I know how you feel” i just want to scream NO YOU DONT!.

  • pippa 67
    1 month ago

    Yes I know exactly what you mean, and add the “But you look so well” and then you think….”What’s the point of leaving the house”… and you don’t.

  • Shelby Comito moderator
    8 months ago

    I hear you, @diann1 and I’m so glad you reached out here. I’m sure many can relate to your sentiments and please know we’re here for you and there’s always a listening and supportive ear for you here. Thinking of you, Shelby, MultipleSclerosis.net Team Member

  • ss46sh
    8 months ago

    Well Calie
    I was diagnosed with MS in 1986.
    I am 67 years old and fatigue has been a part of my life for over 30 years. My wife and i raised 4 children and nearly every day i made myself do what needed to be done. As time passed it took longer to get things done but i did them in smaller segments. I also had my grown children take over some seasonal activities. I continued to work and coach until my children were in high school. I became a spectator at my children’s sporting events. My recommendation to you Calie is to maintain an active life in smaller time frames and fight MS with your reserve energy. Stay MS strong for as long as you can

  • mstini2013
    8 months ago

    I was diagnosed with MS 5 years ago. I’m 53 years old. I can honestly say that as I think back on my life, I have had it since I was a little kid. Three neurologists have agreed with me on this as well. Before being diagnosed, I’ve always known that something was wrong. I don’t remember a day in my life that I felt rested no matter how well I have slept. Until about 7 years ago, the fatigue was mild but then suddenly started to become worse. I changed my work lifestyle, went from working midnight shift as a RN to days, quit my second job thinking I was getting older and just needed to be on a more normal schedule. These things didn’t really help. I also started becoming more symptomatic with signs and symptoms, the cog dog, forgetting things, blurred vision and a few falls later I told my doctor what was going on and requested a MRI to check for MS. I was relieved to finally know that something real had been plaguing me. For so many years I could never pin point what my problem was and to be perfectly honest, at times I did wonder if I was a hypochondriac. I really think now that the reason my symptoms were kept at bay until I was so much older was because I was extremely active my whole life, I played sports in school, basketball and softball since I was in the 5th grade. I had kids very young and did alot of walking when they were babies, to walking and riding bikes, skating, swimming and teaching them how to play basketball and softball and always practicing with them. Yes, I was playing one on one or two on one (me being the one lol) with my girls until I was about 45 years old. That was about the time my youngest daughter went off to college so I went through the “Empty Nest ” and didn’t know what to do with myself without my kids. I became way less active than I’d ever been. That’s when It started really hitting me and I finally figured out that I was turning into a hot mess. I’m doing okay now, some days are really hard, but I have some really amazing friends, family members and husband to help me through. I’ve had to learn how to treat myself better. That Includes eating more vegetables than anything, saying “No” when I just can’t, Truly resting….in my jammies if I don’t have the energy to put my clothes on and laying around not thinking or doing anything but maybe watching TV, sometimes listening to TV if I’m too tired to open my eyes, or sleeping and sleeping. Going to bed at a normal time was rough, I have always been a night owl.Saying “No” has been super hard for me but I’m getting better at realizing that I can’t do it all, and its okay for ” me to take care of me” as my neurologist told me. I’m no longer working, so I’m much less stressed out, which I think really helps me overall. I take meds for the fatigue, I’m still never not tired though, but the meds at least help me get through the day. I went through extreme depression when I had to stop working back in December of this past year, but after a couple of med changes my outlook on life is much brighter. I try to meditate daily and do any type of exercise that I can do every day, even if it’s just a walk around my yard. It helps my frame of mind and some of the spasticity that occurs as the day goes on. Life isn’t perfect or always easy, but this is the life I was handed and I try to make the most of it despite my handicaps. I have to be as present as I can be for my husband, daughters and grandchildren, I may not always get to be active with them, but I’m Here, and doing what I can to help myself so that I can be Present for them however I can be. This site has helped me to gain some very positive insight to my struggles with MS, life is easier when you know that you are not alone. We are all Warriors in this battle, and we are stronger and better in numbers!!

  • chong61
    8 months ago

    Yep, I battle fatigue everyday. My legs feel at least 500 lbs. each. As a side note I weigh 98 lbs. and it is all in my legs.

    There is no way to convey how fatigue hits you unless you have MS. When I first found this site, the first post I saw was the one Devin wrote about fatigue. At that time I thought he was the only person on earth that knew how I felt. Now, I know it is something we all experience.

    I hope you have some good days.

  • mrsaristotle
    1 year 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
    1 year 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.
    2 years 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
    1 year 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    1 year 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
    2 years 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
    2 years ago

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

  • PrincessRita
    2 years ago

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

  • 1j62tpv
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years ago

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

  • potter
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years 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
    2 years ago

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

    🙂 Calie

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