What Does “I’m Tired” Mean to You?


For some, saying the words, “I’m tired”, may indicate a lack of sleep, or perhaps the end of a long, exhausting day. However, for those living with MS, these two words can mean so much more. Fatigue is one of the most common, and one of the most life-altering, symptoms of MS. Of the many issues associated with MS, fatigue is one that can have the greatest impact on daily life and an individual’s ability to do the things they love. We recently published an article titled, “What I Really Mean When I Say, ‘I’m Tired’”, where our contributor, Calie Wyatt, compared MS fatigue to sinking in quick sand. Cali vividly describes her ‘biggest demon’ as her unrelenting tiredness, and how it brings her down every day. She also tells us how difficult it is to get others to understand what it means when she says she’s tired.

In response to this article, we asked our community members to help explain what their fatigue feels like to them, and the response was overwhelming. Continue on for some of the great responses we received.

Mental and physical exhaustion

Feelings of extreme mental and/or physical exhaustion are some of the most common descriptors of MS-related fatigue. Many of our community members shared how debilitating this experience can be each day.

“Living with fatigue is grueling. I have days where trying to form a thought, let alone a sentence, is nearly impossible”
“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”
“I am tired 24/7. It has become my new normal”
“It is a weight pulling you down! Mentally and physically”
“It feels like your body is shutting down and it’s too weak to hold you up”
“I try so hard to forget my fatigue & be active & fun, but it ALWAYS drags me down. My mind knows I’m fun, but my body just won’t let me. I must constantly fight my body & pick my battles to do the most important things”
“I would often say it is like I am being dragged to the ground which eventually swallows me up”

Frustrating

Others who aren’t living with multiple sclerosis, or who don’t have fatigue that comes from a chronic condition, may struggle to understand MS-related fatigue and the ways it limits activities. This lack of understanding can be incredibly frustrating. Not to mention the frustration that already comes with the fatigue on its own.

“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!!”
“I am frustrated by my fatigue. For me, fatigue affects my ability to think straight as well as being tired. The hardest thing for people to understand is how much effort I put into NOT getting fatigued.”
“Sometimes I want to scream, if I wasn’t so fatigued! My fatigue and exhaustion consume me. I also have fatigue that alters my daily activities for many months at a time. Stress doesn’t help. 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”
“The fatigue is dominated by frustration and some anger; compounded embarrassment”
“It is frustrating to try to explain to people that yes, I look tired but getting more sleep won’t fix it and is harder than it sounds!”

Physically cannot move, talk or breathe

MS-related fatigue can be so intense, that it may feel like quick sand physically pulling the body down. This feeling can impact a person’s ability to carry out basic functions, such as moving, breathing, or talking.

“I’ve felt like I am too tired to even breathe”
“I say I feel like a melting ice cream cone”
“I would often say it is like I am being dragged to the ground which eventually swallows me up”
“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 have days that I feel too “tired” to breathe, talk, move…. it’s gotten bad though, I know, when I just don’t feel like it’s worth trying to say anything. It just seems like the thought of talking is overwhelming…and I take constant big breaths because I don’t feel like I am getting enough air”
“I feel constantly tired and dealing with that heaviness and sinking in quick sand feeling. And don’t really care to have others understand anymore because they simply never will”
“I feel like gravity is 15X greater over my body right now”
“MS fatigue requires all my energy for blinking and breathing”

It’s quite clear that MS-related fatigue is not only debilitating and real, it’s also unique and unrelenting. Our community members did an excellent job trying to describe this frustrating experience, however, it’s hard to fully understand this phenomenon unless you are living with it every day. MS-related fatigue can be a constant struggle, and the words “I’m tired” often don’t even scratch the surface of what’s really going on. These two words can take on a whole new meaning for those struggling with MS-related fatigue.

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Recovering from ‘Overdoing It’

Recently, one of our community experts wrote an article detailing how she recovers after a day of “overdoing it.”  Whether overdoing it means doing too much physical activity, traveling, or just pushing yourself past your limits to take a shower, so many of our community members could relate to this feeling.  Whether this occurs frequently or only occasionally, you are not alone!  So many people responded with what overdoing it means to them, how it frustrates them, and they you recover.  We received so many wonderful comments, we wanted to feature several to share with everyone!

The Overall Frustration of Overdoing It

“For me, overdoing it brings foot drop, a very bad mood, balance issues and trouble getting things into words. Oddly enough, reading books gets hard too……my mind just can’t seem to concentrate”

Overdoing it is rough and what might get you one day, might not be as bad on another day. You never really know until you’ve done it. And dealing with those who have no idea what it’s all about only adds to the problem”

“It stinks when ‘overdoing it’ consists of walking my child to the bus stop so she can get to school, coming home to make myself a bowl of cereal, and going all-out and brushing my teeth immediately after eating!”

Overdoing it can take on many forms and can be caused by completely varying triggers, causing much frustration and agony.

Attempting to Avoid Overdoing It

“I try to pace myself and not schedule too much for one day, but I also want to live as much as I can while I still can.”

“It is important to pace yourself which is why it’s important to put some breaks in between long days. But even doing that I’m still exhausted”

“I’m trying to make sure I eat healthy and pace myself, but it’s really difficult once I try. I’m still looking for a balance between work, classes and personal life”

Even the best laid plans and precautions can still lead to exhaustion later.  If this sounds like you, you are certainly not alone!

What to Do Once Exhaustion Sets In

“For me, the fatigue is the hardest hurdle because you can’t navigate around it. It must be recognized, respected, and my body rested. Always when it’s the last thing I WANT to do. Surrender. But meditation and focusing on releasing that anxiety from being forced to stop is an ongoing practice”

“I’ve been getting OT/PT and they made me keep a log of activity. I can do 1 to 2 activities a day. We practice taking breaks. Breathing between steps. Sitting before it’s too far. Laughing more”

“Try everything you can imagine to pull yourself through this maze. Exercise at home if you can’t get out. Don’t feel bad if you can’t accomplish tasks as you once did”

“Today I went in my room and took a nap. I explained that I had to. When I got up I apologized and told them I really had to take that nap”

“Sleep, shower, sleep, sleep, and sleep!”

Everyone handles their exhaustion after overdoing it differently.  Whether it’s distracting yourself with a good book or movie, getting some exercise, shifting your mindset, or just getting some good, old-fashioned rest, you know best what your body needs!

Let us know how you overcome the exhaustion after overdoing it.  Your advice may help someone else in the community who finds themselves struggling with this experience!

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