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Fatigue Factor

tired

Trying to explain what MS feels like is like trying to explain what the color pink tastes like.

Even if you give an exact description of your symptoms and flare-ups most people still don’t understand the nuances of the disease. Illustrating the various sensation distortions and twinges to someone can make you feel and sound wacky. I usually just say Multiple Sclerosis is like an uninvited stranger who enters your house and slowly destroys everything.

The most significant symptom that I try to get across to people is the fatigue factor. For me it is my biggest enemy and lately it has been getting worse. I never used to get this tired. Some days I’m fine and other days I don’t physically have the energy to stand up. It’s as if my lesions are sucking the life right out of me.

The other day, after saying goodbye to my husband, I was so tired after closing the door behind him I laid down in the foyer doorway until he came back 15 minutes later. He almost hit me with the door when he entered the house. He asked me why I was on the floor and I quickly said I was cleaning something I had spilled. I doubt he believed me but luckily he really didn’t make a big deal out of it. Unfortunately these types of episodes are becoming more and more common for me.

Multiple Sclerosis is an insufferable disease and I am beginning to realize that its effects are out of my control. Despite that fact I will listen to my doctor, continue on with my life and pray for the best. It’s just one of those things I’ve been handed and can’t change.

We all have burdens in our lives I just wish mine didn’t come with a fatigue factor.

62 thoughts on “Fatigue Factor”
  1. Anastasia McP 18 August, 2013 on 2:02 PM Reply

    I am a cancer patient, but I finally feel like I have found a home among the MS sufferers on this page. I have read several of the blog posts and comments and keep feeling shocks of recognition.

    First, for the bone sapping, soul crushing “fatigue” that does more to downgrade the quality of life for those who are ill than anything else. Getting people to understand the difference between fatigue and energy for a normal person and a sick person is uphill work. Most people seem to think that a sick person is normal….only sick.

    I am a cancer patient who has been upgraded from terminally ill to chronically ill, though to get to this state I have had to lose half of my stomach and pancreas, feet of intestine and big chunks of liver. I live with chronic pain and fatigue and I never know what my health will be like from one day to the next, sometimes one hour to the next. It is frustrating! I am also in the odd position of being a caretaker/support person as my mother and step-father are both chronically ill as well and I am the person who is responsible for taking care of them.

    Lately, even my fortitude is flagging. I keep telling people that I am in trouble, but I have always been so strong that nobody seems to hear me.

    I came here from a link to the book Chronic Resilience, which frustrated me further. Perhaps my illness is more toward the terminal than the chronic, because all of the helpful little hints about how to get organized really got me on the irritation and envy fronts. I don’t need to be told to “make a cup of tea” or how to organize or even how to make life goals that reflect my new reality. I was living a successful life before I got sick. I have organizational skills – and emotional skills – even coping with the depression that illness brings. What I don’t have is health, strength and energy to put these things into practice. I have the goods, just not the means to distribute them. As I am requested to review this book, I did some googling to make certain that it was written by an actual sick person because it sure didn’t read that way. It mostly read like a series of platitudes from somebody who had heard of illness by rough description.

    Has anyone else noticed that it often isn’t mind over body, but body over mind? I have had my darkest moments when things were worst physically. From what I read in the posts and the comments, I am not the first to discover this fact. Bad for us that it is the opposite of the prevailing view of human psychology and physiology. Willpower uber alles, right? Not so much.

    That said, I do think that we are still “us” and still valuable and can still contribute to the world in a positive way. Nicole – the fact that you have been so honest, even about the less than pretty stuff is both brave and helpful. I have a saying: “You can always go forward from the truth, no matter how ugly. It may not be where you planned to go or want to go, but the truth always opens up some kind of path.”

    Thank you for telling the truth about not just MS, but the experience of illness.

    • Nicole Lemelle 20 August, 2013 on 11:29 AM Reply

      Anastasia McP, welcome to this site. We are happy to have you here. as it so happens if we are talking about the same book I’m featured in chapters 6 of chronic resilience. I believe it covers more types of illnesses than ms. Well welcome anyway and I hope to see you again soon.

  2. Ch Johnson 13 August, 2013 on 1:35 PM Reply

    I am fairly new to this disease, but tired is an understatement! They think I am transitioning into PPMS. I struggle to give up to my present reality, unfortunately the whole mind over body idea does not apply to those with MS. I am about to begin a new job on a part-time basis & am nervous about whether or not my body will participate with this new schedule & whether the symptoms of fatigue will allow me to get through the day. I can only hope for the best & give it a try. I exercise, monitor my diet, & take B- complex vitamins, but this only seems to delay the inevitable. Trying to explain my MS symptoms has become a new challenge. Thanks for the reference to explaining “pink” – made me smile 😉

    • Nicole Lemelle 13 August, 2013 on 2:20 PM Reply

      Ch,Yes yes you are right, for its such an understatement! and it’s so annoying when someone tells me it’s mind over body! good luck on your new job. Remember, do what you can.

  3. Robert Parker 31 July, 2013 on 1:34 PM Reply

    Man, is this reassuring to read. I’m definitely living the sucked-dry-by-fatigue life too. (And Jo, it seems I’m also a PPMSer too, which adds its own “challenges.”)

    It’s very interesting how differently we treat the experience of “fatigue.” If you’re hungry, you need to eat (even if you don’t feel hunger, which I don’t, you still need to eat). If you’re thirsty, you need to drink. These take time and energy. But somehow, we don’t feel like that time or energy has been “stolen” from us. (“Oh no, I have to spend SO much time having breakfast every morning!” Nah, we don’t say that.) Body needs food and water, so we give it what it wants. No problem.

    But fatigue… we’re still living in the very-dutifully-practiced world of delusion, the delusion of “infinite energy.” That wanting or (as we tell ourselves) “needing” to do something is all that’s required to have all the energy we need.

    Well, it doesn’t work that way. Even non-MSers need to have enough energy to do stuff. And they sometimes run out of energy, but they can delude themselves into thinking that there’s still plenty of energy available if we only want it enough.

    Nice delusion, that. I had it myself, for years.

    I don’t anymore.

    So yeah, if your body needs food and drink, give it what it wants. Your body needs rest, so give it what it wants. And what’s wrong with that? An old Zen saying, beloved of Joe Straczynski: Eat when you are hungry, sleep when you are tired. Do this and you will confound your enemies.

    Not bad advice, MS or not.

    • Nicole Lemelle 1 August, 2013 on 2:18 PM Reply

      Robert, you sound just like my husband. I guess I fight going to sleep or simply lying down just like a child.

      • Crystal Heckel 4 September, 2013 on 12:44 PM Reply

        me too! I’m so used to being active, and lately i feel like a wet blanket. I am pretty sure i need to find a counselor to help deal with changes, but the physical fatigue is so hard, dealing with a young child (4yr old). i think i’m going to add vitamin b to my vitamin d daily regimen and see if that helps any.

  4. Jo 31 July, 2013 on 10:42 AM Reply

    Theses are such timely posts. I have been so challenged by fatigue of late. It’s so frustrating you know with this ‘only one life thing’ so you tell yourself ‘come on ignore the inconvenience get going’ but then your body has other plans and you cannot even read!! It drives me nuts. You all sound very wise and experienced. I am wondering if you can give me some advise? I have had PPMS for years and my approach to others was considered long ago. Just recently I have grown fed up with hearing people telling me how tired they are with self-diagnosed illnesses such as chronic fatigue,when they live an active life style I can only dream about. I’m finding it hard to be polite. Then there is my busy family who although they understand have their own lives to lead which makes me nervous to ask for help as I find stress makes fatigue worse. So to confront or not? Love to all

    • Nicole Lemelle 1 August, 2013 on 2:23 PM Reply

      Jo, I can hear the frustration in your words. Hopefully you and Robert can contact each other some way, if only through this site. he has his own blog too the gifts of MS. it should be listed at the bottom of the screen. take care

  5. life well lived 31 July, 2013 on 8:17 AM Reply

    I can relate to this post. I am finding it harder and harder to accomplish everything I need to get done every night. By the end of the day when the kids are in bed, I am bushed. I still have to walk the dogs, hook up a night time feed, clean dishes, and unhook the feed before bed. It’s so very little compared to my wife’s complete day, but knowing this doesn’t make it easier or me less tired.

  6. Stacy 30 July, 2013 on 5:43 PM Reply

    The really hard part of fatigue is the different degrees in which it hits you. For instance, some days it can just be the need to nap a little after doing some chore, or it can be the complete opposite…the need to sleep all day & not feel able to do anything. Sometimes it can occur after having a few days or a few weeks of completely normal activity…and it hits so fast that it takes you a minute to realize that the sneaky little so & so is back!

    This is the aspect of this symptom which so hard to explain to others. Saying you are “fatigued” can also be used as a substitute to some people as “lazy” and it just isn’t so.

    And, if you can believe it, sometimes my fatigue can be a blessing. It’s true…I’ve been an insomniac since I was 11. When this symptom hits, sometimes it follows a period of months of little to no sleep; for the 1st few days, this can be a relief. If the symptom persists, then it can hamper activities. Then, meh, not so happy to have it around.

    • Nicole Lemelle 30 July, 2013 on 6:19 PM Reply

      Stacy, you’re right they are varying degrees of it. I do find I have to constantly be aware of my activities

  7. Deb 30 July, 2013 on 5:39 PM Reply

    My family doctor says he gives his MS patients Methylphenidate = the generic form of Ritalin, for their MS fatigue. So I said “Give me some of that!” And he did and it works-! It only last for 5 hours for me, but I get to take 2 per day and it gets me thru the day. After having MS for 25 years and this Extreme Fatigue for only the last few years, I have found a good solution. Good luck to everyone.

  8. Tim 30 July, 2013 on 3:21 PM Reply

    Hi Nicole,
    Sorry to hear that you’re experiencing fatigue to the extent you are and the “hitting the wall” description for fatigue best describes my experience with fatigue and it sucks! The most relief I’ve found since dx in 2006 is the loss of 125+ lbs since last August along with a radical change in exercise. I definitely have a lot of energy now but when the MS fatigue beast hits me again at least I know that I’ve done everything that I can to prepare myself physically for such times. Hope you feel better soon!

    Tim

    • Nicole Lemelle 30 July, 2013 on 3:46 PM Reply

      Tim, thanks for understanding. I remember you had lost a lot of weight. but then they’re still the fatigue.

    • Vinessa Johnson 19 August, 2013 on 8:02 AM Reply

      Hey Tim, Would you mind to provide additional information regarding your ‘radical change in exercise’. My physician recommends three things to help with my MS symptoms…. healthy eating, daily exercising, and plenty of rest. However, no suggestions are given for the ‘exercising’. What are you finding to be helpful in your exercise routine? Thanks Much, Vinessa

  9. Micelle 30 July, 2013 on 1:48 PM Reply

    I love this topic. I think if I could cure one symptom, it wouldn’t be my blindness (Car eys long gone!) and it wouldn’t be my inability to move without a chair or walker nor my total imobility in tus hot Texas weather. I could cope ifI didn’t have to deal with mind-numbing fatigue. Saying a prayer for you, Nicole!! Thanks for the post.

  10. Barbara 30 July, 2013 on 1:03 PM Reply

    You are all so right. Grocery shopping can destroy me. I went shopping yesterday and
    “hit the wall” 3/4 of the way through. Two high school boys helped me to my car. I was near falling. One of the boys said “You look like you’re in trouble,boy can I help you? My Mom has M.S. and I do this all the time for her” , they literally half carried me to my car. I sat for about 10 minutes until I got a bit of rest. Then got myself home. I’m going to have to come up with a different strategy. But God bless those two boys.
    I didn’t start out too tired, but boy did I get there fast and when this happens to me my legs stop working. When I got home that was it for the day. Do any of you get a concentrated muscle fatigue as well as the overall “pall” whole body fatigue

    • Nicole Lemelle 30 July, 2013 on 3:50 PM Reply

      Barbara, you’re right thanks for the kindness of others! i will willhave gotten myself into plenty jams

    • Laurie 6 August, 2013 on 6:02 AM Reply

      Barbara,

      I definitely have concentrated muscle fatigue. I was always a pusher “just one more step”. Since my dx, that one more step can mean a fall, so I try not to push anymore. I go to my gym and work with a personal trainer every week (except for last week as I was exhausted!) where I have noticed sometimes I just can’t do another rep as my muscles just won’t allow me to. After some rest I am okay though.

    • Vinessa Johnson 19 August, 2013 on 8:12 AM Reply

      Barbara, I can understand exactly what you are saying. It was a several months ago when I went shopping with my d-in-laws. We were in one of the stores, and all of the sudden my legs felt so weak that I couldn’t stand any longer. A sales clerk helped me to a chair before I fell. She asked what was going on, and I explained to her that I have MS and that fatigue is one of my major symptoms. I tried to explain that this type of fatigue is more than a ‘tiredness’… It is more like ‘having a blown-up balloon, and someone takes a pin and ‘pops it”…. No pre-warning, and no reviving… so hard to explain to anyone who does not experience this …. Hope you are doing well. My motto” If God brings me to it … He WILL carry me Through it”…. and He is and will continue to do so!!! Hang in there….

  11. Melissa Hinkle 30 July, 2013 on 11:48 AM Reply

    I don’t think it should be described as “fatigue”. It’s an attack, an episode, no different than a seizure to an epileptic. I think that because it is labeled as fatigue, everyone sees it as us just being very tired. And that isn’t the case. If it were, then sleeping would resolve it. It frequently does not, but just takes an edge off so we feel like we can at least sit up. We have to take medication to control it, no different than any other diease that produces attacks. Even then, there are times when the meds just don’t work.

    I see a response to the FB post about exercising. This is a prime example of what I mean. The writer says it will build your endurance. This type of fatigue has nothing to do with that. While exercise will make your overall health better, and therefore, increase your endurance when you are not MS fatigued, it won’t touch that, as others can attest. This is why I think it needs a different name and a different approach. It would make it much more acceptable to the ‘straights’, anyway. Just my two cents’ worth.

  12. O. Darlene Wood 30 July, 2013 on 11:40 AM Reply

    Just recently I added an Adrenal complex to my daily routine. It is not a stimulant. Dealing with the stress of MS Living can deplete the adrenals. It makes a huge difference when you feed they for awhile.

    • Nicole Lemelle 30 July, 2013 on 3:53 PM Reply

      Darlene, yes I are to take any meds for fatigue. they actually work sometimes.

  13. Amy 30 July, 2013 on 10:12 AM Reply

    I am so feeling your pain here. 4 months ago I said that I was going to change this and I totally changed my diet, added exercise, and have lost 34 pounds. While that’s all great, you would think that I would “feel better”. But I don’t! I used to blame my diet and lack of exercise on how I felt and now I really know that this stupid MS has got me cornered in the fatigue category.

    It’s quite overwhelming.

    • Nicole Lemelle 30 July, 2013 on 10:57 AM Reply

      Amy, you are right. I found for me that I had to curtail my activities.

      • Cynthia 4 August, 2013 on 11:41 AM Reply

        I’m not sure if anyone can hear me this way, but I need to share with someone who understands. My husband tries. He tries so hard to understand what I’m going through. But he just can’t understand the difference between “I’m tired”, and “I’m so exausted that I’m going to fall down”, and ” I’m so tired I can’t follow the conversation, or make my eyes focus, or even sit up”. He doesn’t seem to understand that I’m not lazy. But as much as he understands, and as much as he loves me, he can’t “fix” my problem. I’ve been housebound for almost 2 weeks, and I’m too tired to keep myself entertained. Not sure what to do.

        • Nicole Lemelle 4 August, 2013 on 5:07 PM Reply

          Cynthia, Hi its me Nicole. Yes its hard for others to understand. Sometimes I’ll say I’m tired from holding my head up all day.
          Cynthia.I’m here and i understand.

  14. Muff 30 July, 2013 on 9:03 AM Reply

    Nicole, I could have written this post, and I’m sure that at one point I probably did. I listen to other non-MS people try to commiserate, but they have no clue. When it hits me, I cannot move one more inch. After a shower, after I dress, even after I eat, I feel I’ve expended so much energy that I can’t put one foot in front of the other. Thanks for sharing this.
    Peace,
    Muff

    • Nicole Lemelle 30 July, 2013 on 3:55 PM Reply

      Muff, I’m sure you have! told my husband can no longer do dinner and movie!

  15. Linda Burke 30 July, 2013 on 8:21 AM Reply

    Nicole,
    I can relate to today’s post — I have found that my fatigue gets worse in the summer, and this summer has been brutal for me. I am not sure what else to recommend other than staying in the AC and the things you mentioned — prayer in particular — but just wanted you to know that you are not alone, and at least autumn is coming…..
    Please take good care of yourself.

    • Nicole Lemelle 30 July, 2013 on 3:57 PM Reply

      Linda, yes it is worse the summer. Unfortunately down here in the boot we don’t get much of an autumn

  16. ellajean forbes 30 July, 2013 on 7:48 AM Reply

    So glad the door did not hit you! I know the feeling, and I thought that this drain came with the “pms” symptoms, but as I enter the menopause phase I quickly realize that it must be something else. Maye the “ms ” symptoms?? The first memorable time when fatigue hit me like a mack truck I was making my bed.. started at about 9 in the morning and did not finish until well after 3 in the afternoon. And mind you I was not changing sheets,just making it up. I felt like I had run up a hill, and dragged down the other side of it.. It makes me sad when I get this fatigued, as though MS has gotten the best of me. And all that with the bed just to crawl back in and go to sleep…

  17. Diana 30 July, 2013 on 7:36 AM Reply

    I am so so sorry to hear you’re feeling fatigued. What do your doctors say? Also, why don’t you want your husband to know you’re not feeling well? I mean, I get it because men don’t handle this as well as we do but maybe hiding how bad you feel is making you worse. I really hope you feel better.

    • Diana 30 July, 2013 on 11:18 AM Reply

      PS. Sorry if I sound preachy. Didn’t mean to be. xx

    • Nicole Lemelle 30 July, 2013 on 4:02 PM Reply

      Diana, I don’t think that you sound preachy at all!

  18. Arletha 30 July, 2013 on 7:17 AM Reply

    Hi Nicole.
    OMG! I am so fatigued right now that it’s a challenge just to type this post. I sure understand what you mean. Sometimes lying down does absolutely nothing to relieve the dreadful feeling. It’s even fatiguing just to talk or breathe. It gets frustrating but I always make it through it. Thank you for reassuring me that I’m not alone. I always look forward to reading your posts.

    Take good care!

    • Nicole Lemelle 30 July, 2013 on 4:06 PM Reply

      Arletha, Yes she is the name of our game. thanks for reading!

  19. Judy 30 July, 2013 on 6:51 AM Reply

    Coincidentally, on my Feedly list, your post came right after the following article. I cannot speak to the efficacy of this and as they say it is a small sample, but with your medical background and condition you might find this interesting. BTW, if you don’ t know of it already, Multiple Sclerosis Research is an excellent website for an ongoing an survey and analysis of MS research worldwide.

    http://multiple-sclerosis-research.blogspot.com/2013/07/thiamine-for-fatigue.html

  20. Mary Alice 30 July, 2013 on 4:54 AM Reply

    You NAILED it once again. Fatigue is debilitating for sure. I am a speech therapist working with preschoolers in a public school district. We have been off for the summer and return to work this morning. I will soon come face to face once again with the fatigue monster!! I love your analogy of trying to explain our symptoms like trying to describe the way the color pink tastes…..impossible. Over the past few days I have had family and friends tell me it will be okay once work starts up again that you’ll just be tired. How do you respond to a loved one that dishes out their best encouragement and that is what you get??? Ahhhhhhh, think pink.

    • Nicole Lemelle 30 July, 2013 on 6:27 PM Reply

      Mary Alice, I try to remember there is only so much they CAN do and understand, I just received their well wishes.

  21. Joanne 30 July, 2013 on 4:12 AM Reply

    One of the first things or lessons I had to learn is that although people have the best intentions, they simply do not understand. At first I tried to explain what was going on with me but now I just say I am not doing the best (unless a specific question is asked). I was tempted in the beginning to get frustrated with responses like, “Oh, I know what you mean, I get really tired too some times.” I know they had good intentions but it still is difficult. This is not just really tired. I wish it were that easy and simple. Really tired can go bed and be rested, but MS fatigue is never satisfied. Really tired can still push the gas pedal in the car. Really tired can still carry a load of laundry out to the line. Really tired can still sweep the floor. Really tired can still form a real smile on their face. MS fatigue does not have enough strength for a smile :( :( and people think you are grumpy :( :( [I assume this happens to others??] My mouth can go up a little to start a smile but the whole rest of my face fights against it and stays in a ‘frown’ position. When I am like this I do not even like to go out in public because I do not want others to think I am grumpy.

    That would be a good blog post ‘poem’: really tired vs ms fatigue

    Some days I start off all right (still not 100% but functional) and then all the sudden I get a funny buzzing or vibrating all over inside my body and I can feel the fatigue coming on. I know that within a half hour or so I am going to be dysfunctional. It sweeps over me in a very obvious way.

    Anyway, thanks for sharing. For what it’s worth, it’s always encouraging to know I’m not alone.

    God bless you.

    • Char Elizabeth Lamm 30 July, 2013 on 10:07 AM Reply

      Joanne, You described my fatigue to a tee. It is so hard to describe to normal people. Thanks for sharing. I took nuvigil, and for a while it helped; however, I quit because it quit working.

      • Nicole Lemelle 30 July, 2013 on 6:37 PM Reply

        Char, the same thing happened to me.

      • Joanne 7 August, 2013 on 5:37 PM Reply

        Char – I have not checked in to any of the medications for anything … frankly, they all scare me. Maybe some day I’ll believe differently, but for now this is how I am.

        I just do my best to eat right, get plenty of sleep, water, exercise (when I can!! even if it’s a pathetic attempt!), reduce stress, and so on. These things seem to help but I keep finding more and more things I need to ‘weed out’. Stress seems to have a way of poking up its ugly head in the strangest of ways; ways I never even thought of before but now I am seeing a whole new side of things born out of desperate necessity.

        Shalom.

    • Micelle 30 July, 2013 on 1:39 PM Reply

      I love how you describe ttired and how different it is from fatigue.

    • Becky 30 July, 2013 on 2:08 PM Reply

      Your post is so true,so many timesI don’t want to venture out for the same reasons.

      • Nicole Lemelle 30 July, 2013 on 6:40 PM Reply

        Becky, I have my good days. I have my bad days. but I refuse to let MS keep me set inside.

    • Nicole Lemelle 30 July, 2013 on 6:35 PM Reply

      Joanne, I know what you mean. these days I can to excuse those who are simply trying to help. I usually follow,” I’m so tired.” with today I have to hold my head up all day long. that tends to end the conversation.
      here’s my email address. I meant to give it to you before:nicole@mynewnormals.com

      • Joanne 7 August, 2013 on 5:34 PM Reply

        Thank you Nicole – I appreciate it. It’s a blessing to have others in my life that can relate.

  22. patricia 29 July, 2013 on 11:25 PM Reply

    it is so comforting to know someone understands. My son takes me shopping, asks me how long I want to stay; I enthusiastically say 4 hours. He comes back in 10 minutes and says are you about finished. I say yes. It was easy for him to find me; I hadn’t the energy to move from the spot I was in. I am sure security was watching this deranged lady closely literally pawing over merchandise. My son has learned a lot of my weird ms signals; he sees my exhaustion before I admit to it. I don’t know why I keep up the charade of my pretend life.

    You are one of my highlights. Too tired to type.

    • Char Elizabeth Lamm 30 July, 2013 on 10:10 AM Reply

      patricia, You are so blessed that your son gets it. My two adult children live out of state and really do not get it. So that’s one plus for you.

      • patricia 30 July, 2013 on 3:02 PM Reply

        I am lucky, but they don’t really get it. what little they do get has been an uphill struggle of trying to communicate when I am too tired to do so. My son works with acquired brain injured adults now, so is understanding more than he used to. He doesn’t live in the same city as me either. I think I present my pretend life to them, I pretend I am not dead inside from fatigue, I live on the fringes of their real lives, I smile, hopefully at the right times.

        It is a blessing that they don’t understand this disease because we both know that the only way they could really understand would be if they had ms and that would kill me. I am Just happy for the bits they try to understand. thanks for commenting

    • Nicole Lemelle 30 July, 2013 on 6:46 PM Reply

      Patricia, it sounds like you and your son have a good thing going. My husband can usually see my fatigue coming on as well. Denial gets in the way all the time.

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