My Tired Is Not Your Tired

Teresa Wright-Johnson avatar

by Teresa Wright-Johnson |

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Patiently Awakened
Fatigue. Most people with chronic illness – especially MS — experience this. My energy levels vary from one day to the next. I am tired of being tired (pun intended). There are days when getting out of bed is challenging, and times when I literally have to force myself to do anything. Chronic fatigue can be very frustrating.

What I often find disturbing is when people “diagnose” me, and proceed to tell me why I am tired. They say “you need to rest” or “you’re depressed,” and although there may be some truth to this at times, it fails to elucidate the correlation between MS and disease-related fatigue.

It seems that the majority of people cannot comprehend that MS-related fatigue is a totally different “beast” than just being tired. They don’t understand what it means to lay down all day and still lack the energy or the desire to lift your head. Attempting to explain the difference becomes tedious, so most of the time I allow the words to go in one ear, take what I need and allow the rest to exit the other.

Some people have good intentions. However, as many others have stated, they won’t “get it” until they experience it for themselves. Those of us with chronic illness speak the same language. When we say that we are tired, we are speaking of a realm that exceeds exhaustion. We are referencing a level of fatigue that can’t be appeased, or satiated by a nap or a rest on the couch. It often entails much more. Fatigue can be debilitating and it often interferes with our daily functioning. Normal tasks, such as everyday household chores and working, become arduous.

MORE: Read “Learning to Push Back Against My Relapsing MS” [Sponsored Post]

I’ve heard many people say they have been ostracized, have been called lazy, or told they were pretending and many other things that were offensive and hurtful. These words were spoken at times by relatives, friends and acquaintances. These remarks are insensitive and inappropriate, to say the least. Most people with MS and chronic illness often desire to do much more than we are physically capable of performing. I believe it is safe to profess that we are not seeking sympathy, and we are not willing to accept insults and/or directives about what we “need” to do, and what we should stop doing. In addition, we are not willing to accept anyone’s personal opinion on an illness they know very little about.

The National Multiple Sclerosis Society reports “Fatigue is one of the most common symptoms of MS, occurring in about 80 percent of people. It can significantly interfere with a person’s ability to function at home and work, and is one of the primary causes of early departure from the workforce. Fatigue may be the most prominent symptom in a person who otherwise has minimal activity limitations.” They go on to state that MS-related fatigue is different than general fatigue experienced by others, noting MS fatigue generally occurs on a daily basis. It can occur even after a good night’s sleep, tends to worsen as the day progresses, is affected by heat and humidity and has a sudden onset. I can totally relate, as fatigue and pain are two of my greatest obstacles.

I am writing this column for two reasons. First, I would like to encourage anyone with MS and chronic illness. I understand the struggle. We have to take one day at a time because every day is different. That is all any of us can do. Please don’t allow others to make you feel inadequate or guilty. Do what you can when you can. You are not lazy. You are not just imagining things. If needed, please consult with your primary care physicians and staff for recommendations regarding things that may help with chronic fatigue.

Second, for those who do not have MS or chronic illness, please refrain from deducing our situations and experiences to what you think they are or should be. You can’t begin to imagine all that we endure. Our “tired” is not your tired.

“I believe empathy is the most essential quality of civilization.” — (Roger Ebert)

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Rose Marie Kamenitz avatar

Rose Marie Kamenitz

This is so spot on. Noone really understands that our "tired" is not "their tired"
Fatigue is relentless in MS, on & off daily, but not the fatigue others feel. It is so hard to explain, so I sent this to my husband. He is very understanding, but if & when we go out, he doesn't understand my horrible walking, which is less & less each day b/c of my fatigue. It can come upon me suddenly, 1 hour I am ok & plan in my mind what I will do, then the next hour I am suddenly fatigued. So get nothing done. Next hour my stamina is back & the cycle begins again, even after a good night's sleep.........
Unexplainable, but yes it is true.

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Teresa Wright-Johnson avatar

Teresa Wright-Johnson

Hi Rose,
Thanks for your response and for sharing your experience. I so understand! Yes, the fatigue is relentless at times. I remind myself often that I have to take things one day, and lately, one moment at a time. Be encouraged.

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len avatar

len

Rose Thank you that sums up my world and I often feel so guilty
Thank you for your comments

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Danielle Rossow avatar

Danielle Rossow

It really is spot on. Thanks for this awesome article!

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sarahrivka avatar

sarahrivka

...so many of us experience that debilitating thief: FATIGUE
It's the on/off switch that causes the real problems and the inability to catch up so that we actually feel GOOD---NOT EXHAUSTED.

We push through each day doing what is needed(sometimes)---BUT NEVER FEEL ENERGETIC!
THERE HAS TO BE AN EXPLANATION---too many of us share the same story----fibrogarbage people have similar problems----what is the common defect----there has to be a clue in that commonality

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Teresa Wright-Johnson avatar

Teresa Wright-Johnson

Hi Sarahrivka,
Yes, many of us, with various chronic illnesses experience fatigue. I guess we have to keep on pushing when we can although it can be very frustrating. Thanks for sharing your thoughts. Best wishes to you.

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Betty avatar

Betty

I suffer from chronic fatigue, although not from MS. It's impossible to describe how debilitating it is and can be. Healthy, well meaning friends say things like, "oh I know, I'm tired too!" And I just want to scream in thier faces, "My tired, is not your tired!" How many times do I have to explain it to them?! They don't get it. Never will. It's very isolating and frustrating.

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Teresa Wright-Johnson avatar

Teresa Wright-Johnson

Hi Betty,
I understand your frustration. On most occasions people are well intended. It is just difficult for them to really understand what we go through. I am learning to ignore the comparisons because our situations are not the same as the average person. Best wishes to you.

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Sue avatar

Sue

I agree and I take the advice of my world renounced neurologist who warned me to give up the "shop till you drop " way of life. We need to rest before we hit the point of exhaustion. Pace ourselves. Otherwise it's more difficult to recoup.
Weather conditions such as heat and humidity wipe me out. I know I need to stay in an air conditioned place to avoid turning into a rag doll.
Caffeine breaks help me with the fatigue. There are also medications such as Provigil, which help some of us with fatigue.

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Teresa Wright-Johnson avatar

Teresa Wright-Johnson

Hi Sue,
Thanks for reading the column and for your response. Also, thank you for sharing your suggestions. Best wishes to you.

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Barbara avatar

Barbara

If I could get up the energy to take a daily shower, dress and feel alive after doing those things, life would be so much better! At least I would look more alive! Lol!! It's sad when I realize it has almost been a week since I took a shower! The brightest most exhausting thing in my life is my new grandson who is 3 1/2 months old! He comes before anything for me! He is the light of my life!
My daughter, his mother lives with me, so It's the 3 of us. She also is disabled due to having Dysautonomia which has many of the same symptoms as MS. So between the two of us being exhausted but determined we will take care of our little love bug, anyone that comes to the door finds us in our pjs or nite gowns! If any of the people that said we stayed tired because of depression, I would love to have them see us! We laugh and giggle with our precious child God gave us to raise! But we are still tired!
But we have to push on for this child that depends strictly on us!

Thanks for the article, "My Tired is Not Your Tired". I couldn't have described it any better!

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Tshandra White avatar

Tshandra White

Thank you so much Teresa! This speaks volumes for not only those with MS but those with all sorts of chronic and hidden illnesses! I myself have some sort of undiagnosed brain thing I guess. Won’t say it’s MS yet because it’s not in my spine?? I already have gone through 5 brain surgeries for a brain aneurysm. I guess I’d think that would be enough for one person??

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Christine Challinor avatar

Christine Challinor

Wow! It's taken a while to find this and reading exactly how I feel is priceless. I never want sympathy, but I'd love people to learn more and be understanding. Fed up of good friends & family advising me to get more sleep or that my body must have needed a long lie in.
I usually wake around 8a.m & take 30 mins to bee motivated in getting up, then the energy to get to my bathroom, sit down to remove night wear, huge struggle to dress. From removing slippers, putting on underwear,then a slip over dress takes an hour and a half. Leavng my bathroom, I prepare cereal and then begin to fall asleep whist eating!
You'll all know exactly how it feels to plan ahead, often leads to cancellations & my family have to cancel too.
Someone recommended Biotin tablets in a high dose of 3x10mg. It helped me for a while, I felt good & I was happy. A plus side is my hair grows quicker and stronger, likewise with my nails.
Really enjoyed the Column and at last have more understanding and how to explain PPMS fatigue. Many thanks, Chrissie

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Alexis avatar

Alexis

I have been struggling with MS for a short 4 years... This post literally made me cry. My husband gets so upset when the day is over because all energy I had if I had it is gone. It's like I have no time for him. I do my best honestly...to clean, care for our son and our animals, and care for myself but at the end of the day he wants more and I am beyond tired. I do not know what to do and I hate myself often because I only wanted to be a good wife and mother my whole life and turns out I am not that great.

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Deborah Lake avatar

Deborah Lake

Alexisi, I think "struggling" is an appropriate term, a definition for this word is : striving to achieve or attain something in the face of difficulty or resistance. I was diagnosed in 1983, had some relatively easy years and then the primary progressive MS began. My marriage has lasted 43 years with my husband still having trouble understanding all that MS is. try defining for your husband that sometimes the wind is at your face 90 mph's [like a "wizard of Oz storm". you struggle with all your might and sometimes the wind calms down enough, you get things done. Sometimes it picks up out of control - certainly out of our MS control. Our desire to defeat the storm is always there, but can we control the wind? No.He could jump on Dorothy's Bicycle and help you take care of what the wind didn't let you do that day. Then instead of thinking you are a poor mother or wife, Let him know he can be your shelter in the storm. And let him know on days the wind is at your back you are happy to do ALL you can for your family, on windy days you 'struggle' and maybe he needs to jump on the bike again. TEAM WO RK. I think most husbands love their wives and can see benefits for the family sharing the struggle or acknowledging the effort you make on very windy days. YOU will have more peace of mind keeping track of the good days when they come. {try to review how acceptance of MS or other auto immune diseases can improve how we can learn to have Great days even on bad ones} I now have permanent progressive MS {I think that's what they call it now} and I enjoy helping children of friends with surprise gifts and stories, treasure hunts, pretend safaris. Life is what you make it.

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