Fatigue is hands down the most difficult MS symptom to experience and explain. While all invisible symptoms defy description, finding words to convey the feeling of this type of exhaustion is not easy. Because everyone thinks they understand “being tired,” it is particularly helpful to draw a line of distinction between that and this experience. So I will try to do that… words are my greatest ally, after all.
When I was first diagnosed in 1988, long before any disease modifying drugs were available to treat MS, I knew full-on fatigue. This neurological experience isn’t anything like being tired. It consumes you in its grip. It’s long fingers wrap around you and suffocate your being- robbing you of your sense-of-self. Each and every cell struggles to endure and with that, is a disconnect from all that defines you. It lives in you no matter what you do. It doesn’t even require physical movement to take hold. Just sitting and reading a book or playing scrabble- any level of concentration would be fuel for exhaustion. My memory of my time with fatigue is not one I care to revisit. It was a time with no hope, filled with fear of what role this thief of my personality would play. Trapped in side my worn-out body, I could not imagine what would become of the effervescent me.
And to make matters more challenging, I was surrounded by people who tried to tell me that they “get tired too” making me more isolated and angry than ever. Living with MS is a tough ride, but having to constantly explain yourself, defend yourself even, makes it even harder. Copaxone has allowed me to live life mostly free of fatigue, so I was caught completely off guard last Sunday when it reared its ugly head.
That day I pushed myself hard. Not by working out, or riding the Lifecycle at the gym of which I wish I was a member….. just by going to the local art fair searching for that elusive hand-crafted mug. Walking around Art in the Park (ing lot) at the Montclair Art Museum was enough to do me in.
But let’s talk mug… a welcomed distraction! This mug of mine needs to be special. It’s the one that feels perfect as I wrap my fingers around it and support it with my palm, warmed by the contents. The one that deserves to bring that ideal cup of java to my anxious lips. Yes.. I wax poetic here. I love coffee… and I need my perfect mug to have and to hold. My last victim found its fate as a hippity-hop was flung across the yard and tore it from my hands, tragically taking that rubber vehicle’s life with its own. The shards of mug sliced through it in a feat of physics I would love to replay in slow motion. A sad day for both me and Madeline. 😦
So, I excitedly arrived at the fair, the very one that brought that perfect predecessor to my home. With walking stick in hand; daughter, sister, nephews and parents near by, I descended. I had it all planned out. I would do a quick jaunt to assess where my new coffee vessel would be adopted and rejoin the family. Of course in spite of separating myself from the group, I couldn’t quite achieve the speed and agility I hoped for, and couldn’t put my finger on the ideal mug. I ran in to the posse just in time for shirt-painting, tie-dying, music-listening, food-wanting, gift-buying, bathroom-going, arm-tugging, constant-whining and thus my chances of finding my soul-mate-mug were diminishing by the second. But my family was on board. They knew how important this was. They each were given a description of said item and an assignment of what to do if they found it. Cell phones are very important in this type of mission. Phone messages with pics of mugs from across the park were employed to avoid excess travel! Anything to shorten my trip was appreciated.
Finally I found one and though it wasn’t perfect, it was close enough. I bought it and took one more trip with Madeline to get her friend’s birthday present, and then a second stop at the bathroom, and finally to meet the rest at the gang at Applegate Farm stand for that much desired-dairy-destiny. (can’t resist hyphenated alliteration!)
Unfortunately my effort to get there was thwarted by the entire physical breakdown of my overly-taxed body. To the outside observer I must have appeared to be a cast member of the Night of the Living Dead; dragging my leg, lunging myself forward to find a momentum. I suppose holding a walking stick and Madeline’s hand helped to dispel that image. But from the inside it was all black eyes and decaying body. I dragged myself to the chair that all ushered me to, and sat.
And when I got home, I sat. Unable to think or even be… stifled under the greatest of exhaustion that compromises my entire self. Sleep and depression weren’t far behind…. a delirious slumber filled with the fear of what I will be when I wake up.
Luckily with Copaxone fatigue is only reached when I push myself far beyond what is reasonable- it is no longer the MS symptom that underscores everything, found after walking 20 feet. Instead it is only found when I expect to be able to do more than my body will allow. Usually that is a lot more than 20 feet, but it falls short of a trip around a festival, a museum or around the park. (and you can forget the Bronx Zoo!) You’d think I’d know that line of demarcation by now… maybe it’s my optimism, maybe denial. Whatever the case may be, I often find myself in this zombie like state disappointed I can’t do something that seems like a “no-brainer”. And thus, I am left with the realization that there is a solution for these scenarios- and it’s that next step that I’ve been avoiding for some time. Can a scooter be as empowering as my walking stick is? I hesitate to type it, but I believe I know the answer.
When I awoke I realized a change of scene would do me good. So I called my neighbor to join her for a coffee. Her kitchen is adorned with mugs that feel great in hand and reinforce this journey with a line drawing and simple message – because in spite of it all Life is Good! That and the great conversation she always supplies is just what the dr. ordered, Thanks Susan! 🙂
Thanks for reading.
ag
MS~LOL: Multiple Sclerosis a Life Of Learning 
I have written about the fatigue myself. I know what you mean about people always saying, “Oh yeah, I get really tired too.” Ok, does it nauseate you and make you feel like if you don’t find a bed in the next ten minutes then you will collapse? It’s so unpredicatbale for me too. One day I’ll feel great and full of energy and the next day my whole body aches and my eyes will hardly stay open. I hate that feeling…
It’s truly amazing how many unique stories living with MS provides. I think of all the symptoms, fatigue is the most varied. I’d love to hear more about how people experience this symptom. Each version provides new clarity for how it is nothing like “being tired” and is the ultimate validation. I think I’ll invite others from different site forums to post here. Please spread the word!
Thanks for your continued readership and insightful commentary!
~Amy
I find that the fatigue is a tell tale symptom that I am headed for an exacerbation. The last few weeks I have been feeling fatigued. I wake up in the morning feeling like I never slept or haven’t slept in a week. Now I am actually having an exacerbation. My left arm started to feel weak and painful yesterday and now its both and my back. I am also stiff all over and have 2 lovely fever blisters on my mouth. It even hurts to breathe. I have to say that the fatigue is one of the hardest parts of an exacerbation to deal with. I could sleep all day and all night and still be tired right now. I called my Dr today and they told me “You need to see soemone”. My thought is duh! I told them I needed medrol dose pack and they told me to ge to the ER. Frustrating dealing with MD’s who do not understand that when you’ve lived with this as long as I have, you know what you need to get out of an exacerbation. I have learned to live with the falling and cold sensation in my feet and occasional fire feet. But the fatigue kicks my butt every time!
I’m so happy to hear that … I’m not alone. It’s tough having to explain almost daily why I’m so tired. Just yesterday I had a great day, maybe I played with my three year old too much who knows? Today I’m so exhausted, it’s hard to explain the muscle pain & I can’t concentrate, so I must take a nap.
I did become distant with those around me, it angered me @ first. Just don’t think about it … is what I hear most often.
I’m a tough lady I don’t use pain meds I think I have a high tolerance for pain. It’s the muscle spasms, weakness and
my vision that at times, although I know it’s MS, still wonder why, and how does it effects me on certain days.
Eva
Sharon and Eva,
Here I am almost 2 years after this post- lost in fatigue and rereading it to validate my deep sadness for feeling this way. Re-reading everyone’s response puts the comfort levels off the chart.
Thanks you both for being part of that healing experience. I’m going to bed!
Best,
Amy
Dear fearless mama:
HAPPY MOTHER’S DAY, diva!
I’m glad I saw your posting. Thank you for the tongue in cheek, in your face reflections. I appreciate you and your thoughtful prose.
There are no words for obliviousness, are there? Sometimes, I try to ramp up the tit-for-tat comparisons by stating: My mother and I have the same aches and pains but she’s an octogenarian. Yeah, I was a ‘surprise’ pregnancy. Do you feel like your mother? Mine has RA with a dose of diverticulitis and slice of gout. But I’ve got her beat with my macular degeneration and nerve pain. No, I DON’T HAVE DIABETES. f’ing morons!
Here’s wishing you well — you rock — you always do.
Peace,
R
Thanks Rach! I always appreciate your energized response… it’s an energy shot in the arm! Yeah… I love being compared to others in the senior sect. I speak about my apprehension or hesitations of getting a scooter… and people tell me the stories of their grandparents and how they missed out on so much because of those issues. I’M 40!!!! Why isn’t that obvious that type of analogy can only make me feel worse about the decision making process!
Always great to hear another insider perspective. Thanks for that!
xo ag
My Mom has MS. She has had it for 25+/- years now. She calls the Fatigue symptoms her “Zombies” She would be fine one minute, then the next she has been hit by a zombie. My dad has to help her to bed until it passes. or she will have to “nap” in her “buggy”. The Zombies completely take over her. She can’t talk, can’t hold anything and is weaker. It could last for days, or hours. Every time is different. It’s slowly getting worse. I can’t believe the strength this woman has. She has overcome many obstacles in her life. She will overcome this as well! I am totally in AWE of my Mom. I fight for her.
Hi Karen.. Thanks for your response. I love that she calls them her Zombies and I quoted Night of the Living Dead. Makes me realize that there is some universal aspects of this varied diagnosis. Sounds like she has some intense challenges and is an amazing person. She is lucky to have you rooting for her.
Unfortunately, just fatigue doesn’t cover it. There’s mental fatigue – your thought processes slow down and you just can’t think straight. There’s muscle fatigue – feels like there are weights on every muscle in your body. You feel like your moving through water. Then there is the ever-elusive-hard-to-describe plain old fatigue. The best I’ve come up with to help people understand is “imagine having the same feeling of being tired when you have a bad case of the flu. Now have it 24/7”. Even that doesn’t seem adequate.
It is sooo hard to describe, especially when you can be fine one second then wham! you’re exhausted the next.
Thanks Jennifer,
Very well put. There are so many variations and I believe I can relate a number of those you describe. I appreciate your additions. The more examples, the more clear it is what we are coping with… and how its not easy for everyone else to understand.
Thanks for adding your mark.
~ag
Good commentary, nay—Great! You ARE optimistic, and that is what has gotten you thus far in such good form. It is fortunate that Copaxone has relieved the worst of your fatigue. But in describing your day at Art in the Park, I could see what was coming even before you got there.
Yes, I KNOW you are only 40, BUT for the active life you live, I truly think you need to obtain a lightweight break-down scooter. Have it on hand to load up for those forays that you KNOW would be too much for you (the zoo for instance). Do not cheat yourself out of fun with family and friends just because of what might feel like “giving in” to your condition. You are NOT. You are adapting.
Furthermore, I am certain Madeline will thoroughly enjoy helping you “pimp your ride” so to speak, making it a reflection of your personality and artistic sensibility! (When you get one, include pictures, please)
With summer temperatures looming, fatigue will become an even bigger factor. Go with the scooter for ease of living, doing, going……that cane and the lurching gait is going to produce a big splat one of these days, and am reasonably sure you do NOT want to go there!
LOL! I love it Connie…. and I look forward to Madeline “pimping” a ride. I was very close to getting one a few years ago, and the process took longer than the summer, and thus I did a big nevermind. Easy to back out. I greatly appreciate your clear articulation of how I’m cheating myself out of good times. And I will take that adaptation all the way to the scooter store! (Have you ever seen that movie-Adapation?) Okay.. back on topic. Thanks for adding further power to my practically made decision. Now I just have to wade through the red tape… and plan a trip to MOMA to reward myself. Thanks for your ongoing encouragement!
xo
ag
OOOH, I want MOMA! Sadly, that is NOT in my future, so I shall have to be satisfied with your report of the trip !
I really enjoyed reading this and I am so glad I saw it on facebook. I was dx in 9/08 and the fatigue is my biggest challange right now.
I have posted my question on several groups in facebook looking for opinions on how to deal with it. For years I have had periods of fatigue and have always just pushed through them because I had no choice (have to have a paycheck…). Now that I know it is the MS I am trying to figure out if I listen to my body and rest or push through it like I always have.
Common sense tells me to rest but it goes against the grain. It seems there is a part of me that feels that if I rest I will somehow be “giving in” to the MS and things will progress at a faster pace.
Any thoughts on how to figure this out?
I’ve been trying to explain how fatigue feels, especially to my 12 year old son, but it’s hard to put it into words. I think you people have made a very good job of explaining it. There’s both mental and physical fatigue and I experience them every day. The physical kind is the flu-like type where all your muscles are exhausted and you feel like sleeping for a year, and the mental kind is the type where you just can’t gather your thoughts because your head is totally “foggy” and you just want to bury yourself under the cover until the fog lifts.
The worst part about this symptom is that it’s invisible on the outside and as many of you mentioned, you often get the comment: “I’m so tired myself”, “You look so good” or: “You always seem to have so much energy!” I’ve even gotten the comment: “Are you sure you really have ms, you seem so normal!?”
I always feel that I have to keep going. I can’t just go to bed or take a nap, because there are always things to do and my son doesn’t seem to realize that I’m sick. I guess he’s in that hormone-state-of-mind where everything revolves around him 🙂 I’m still a student (mainly because I’m afraid my brain will “die” if I don’t keep exercising it) and I have a part-time job, but it’s a struggle and I don’t know how long I can keep it up.
To sum it up: fatigue is the invisible monster that keeps us from doing all the stuff we used to do – without even thinking about doing it…
Hi Amy – finally the fog is lifting a bit and I just read your post on fatigue. R u a writer? if not you should be – your description of what it feels like is so right on – i loved the sentence – “Trapped in side my worn-out body, I could not imagine what would become of the effervescent me.”
I too did a “fair” type thing with my parents this summer – within 1 hr i felt like I was sinking into the ground. The fatigue comes and goes – warning signals are when my leges and feet start to “buzz”. It seems to overcome me or intensify in situations with alot of activity – which is sooo hard to avoid because I am a social being and love to adventure. That’s where the frustration and depression sets in. All of what you said was intense to see on a page – thanks for putting words to it.
[…] to this one resonate the most. So, I’m taking a moment to invite more of you to read this post, discussing what is perhaps the most challenging MS symptom to live with and explain to others. The […]
Amy, so glad you posted this on FB, certainly helpful to read more than once. 🙂
Here is my favorite passage, “This neurological experience isn’t anything like being tired. It consumes you in its grip. It’s long fingers wrap around you and suffocate your being- robbing you of your sense-of-self. Each and every cell struggles to endure and with that, is a disconnect from all that defines you.”
I often tell myself that I wouldn’t necessary know I have MS if it wasn’t for the fatigue that never goes away. Other than that I have very few MS problems. The fatigue doesn’t go away though, I’ve adjusted to it, but it sure feels good to read about how hard it is to handle, from someone able to present the info so well. No wonder it is so hard on me. lol
Thanks for the great writing!
Dar
Seldom have I read as succinct a posts on how it feels to live with MS without being able to describe it fully. Thank you for doing me and fellow MS sufferers a great favour! My only regret is the fact that people without the disease won’t read about it and will remain in the dark.
Please, do not ever lose your sense of humour, it will carry you through the tough times.
Karin
It’s interesting I walk with a cane daily. When I have to go to mall or anywhere I have to walk further than an aisle in the grocery store I’m in a wheelchair. When people see me with out my chair they say wow you are feeling great today! When I’m fatigued I just need to try harder. I just shake my head. If only they knew!
Reblogged this on MS~LOL: Multiple Sclerosis a Life Of Learning and commented:
I sitting here with 7 other people with MS at Kessler’s MS Wellness program talking about MS fatigue and reflected (in my head) on this post…
Part of the hardest lesson I learned by having The Disease is that actually, we don’t have “infinite energy.” And just as “actually,” we never did. We were always able to do so well at pretending that we did. Sometimes successfully. But we don’t. And now… we can’t pretend any more.
“Fatigue taking the ‘doing’ of things that I still can do” is hard. Being told by people I trust that “Well, it’s rest that your body needs right now, whether you want to give it that or not, it’s gonna take what it needs, so might as well go along with it” isn’t necessarily helpful. Being true doesn’t make it easier to hear.
But then again, that’s one thing we’re all tasked with, on the Neurological Highway… to stop making things hard.
Robert, your words are so eloquent… and spot on! Thanks so much for taking the time to respond. It’s so significant to share these “understandings”. Best to you~ amy