My Tired is Not Your Tired

My Tired is Not Your Tired

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.

Teresa I. Wright-Johnson is a married Multiple Sclerosis Warrior and Congenital Heart Disease Survivor. She was born with a heart murmur and an Aortic Valve Defect. Teresa has endured multiple open heart surgeries and cardiac procedures. She was diagnosed with MS in November of 2014 and is under the care of an esteemed MS Specialist. Teresa knows there is a calling on her life and she fully embraces that. Teresa uses her illnesses as opportunities to further rely on her faith, walk in her truth, raise awareness and educate others. She believes that she is purposely on purpose. Teresa offers a solid background in Criminal Justice and Social Services. A graduate of Rutgers University in New Brunswick, NJ and a retired Sr. Parole Officer for the State of New Jersey, Teresa uses her life to empower and inspire others. She embodies community service, is a member of Zeta Phi Beta Sorority, Inc and is active with several other organizations. Teresa aspires to be a light that shines in dark places. Teresa is an author, poet, inspirational speaker and a community activist. She enjoys writing, reading, listening to music and spending time with her family and friends. Teresa acknowledges the unwavering love of her wonderful parents throughout her life and her supportive and loving husband Marvin who is beside her through every trial and triumph.
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Teresa I. Wright-Johnson is a married Multiple Sclerosis Warrior and Congenital Heart Disease Survivor. She was born with a heart murmur and an Aortic Valve Defect. Teresa has endured multiple open heart surgeries and cardiac procedures. She was diagnosed with MS in November of 2014 and is under the care of an esteemed MS Specialist. Teresa knows there is a calling on her life and she fully embraces that. Teresa uses her illnesses as opportunities to further rely on her faith, walk in her truth, raise awareness and educate others. She believes that she is purposely on purpose. Teresa offers a solid background in Criminal Justice and Social Services. A graduate of Rutgers University in New Brunswick, NJ and a retired Sr. Parole Officer for the State of New Jersey, Teresa uses her life to empower and inspire others. She embodies community service, is a member of Zeta Phi Beta Sorority, Inc and is active with several other organizations. Teresa aspires to be a light that shines in dark places. Teresa is an author, poet, inspirational speaker and a community activist. She enjoys writing, reading, listening to music and spending time with her family and friends. Teresa acknowledges the unwavering love of her wonderful parents throughout her life and her supportive and loving husband Marvin who is beside her through every trial and triumph.
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11 comments

  1. Rose Marie Kamenitz says:

    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.

    • Teresa Wright-Johnson says:

      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.

  2. sarahrivka says:

    …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

    • Teresa Wright-Johnson says:

      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.

  3. Betty says:

    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.

    • Teresa Wright-Johnson says:

      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.

  4. Sue says:

    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.

    • Teresa Wright-Johnson says:

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

  5. Barbara says:

    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!

  6. Tshandra White says:

    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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