How do you explain malaise and fatigue?

Discussion in 'Fibromyalgia Main Forum' started by Michelle_NZ, Apr 21, 2006.

  1. Michelle_NZ

    Michelle_NZ New Member

    Hi folks

    One of the hardest things I have found with having CFS is the feeling that nobody really understands how truly horrible I feel most of the time. I've tried to explain how it affects me physically to those close to me.

    It's easy enough to talk about pain, nausea, headaches etc, but how do explain the nature of true fatigue - you know what I'm talking about - the horrible bone crushing, unbelievable fatigue where you feel your whole body shutting down. How do you explain that to people?

    Also, the whole concept of post exertional malaise - that unbelievable feeling of sickness and fatigue mixed together that you feel - for me this is probably one of the worst symptoms - when I get it really bad, I honestly wish I could just die to escape it.

    How do you explain that to people?

    Am i unrealistic in my questions? Perhaps I just need to accept that I can never really explain it to people who have not experienced it.
  2. Jen102

    Jen102 New Member

    who was awake every night, and how they felt as the mother when needing to get up for the 6th time of the night (night after night) at 3:00 a.m. That's the closest I can come.

    I have been so fatigued that I can't chew food--lost 60 lbs. Blah. Jen102
  3. KateMac329

    KateMac329 New Member

    I don't know!

    I was just trying to get my therapist to understand JUST YESTERDAY how tired I really am!

    She just couldn't get it.

  4. KMD90603

    KMD90603 New Member

    Michelle, I struggle with this as well. Because I can explain to people, including my husband and my parents, until I'm blue in the face, and they will never truly understand that I'm not just tired. But I'm physically exhausted to the point that I feel even breathing takes too much energy out of me.

    What gets me mad is when someone asks how I'm doing, and I say "oh, not well. I'm feeling really tired today." They say, "oh yeah, me too. It was a long day..." blah, blah, blah.

    So to answer your question, I don't think it's really possible to explain it fully to other people. Because no matter how you phrase it, it still just sounds like we're just complaining about being tired, which is something everybody feels. But the kind of "tired" we feel is excrutiating, painful, and feels like we haven't slept in 10 days. I saw my infectious disease doctor today. I explained to him that I slept for 10 hours last night, and still woke up feeling as if I had absolutely not even an hour of sleep. I woke up and went straight for the couch and proceeded to doze back off again.

    You are not alone in your frustration with this. And I don't think the name CFS does any justice. I think as long as researchers are now proving our disease is real, they should further that by finding a name for it that actually fits.

    Gentle healing hugs,
    Kim <---fellow CFS sufferer
  5. hugs4evry1

    hugs4evry1 New Member

    There's a wonderful story here somewhere that explains what we go through every day.

    I don't remember the title completely but if you type "spoons" in the search feature, you may be able to find it.

    I just did the search and bumped it up to the top for you.

    Good luck,

    Nancy B.
    [This Message was Edited on 04/21/2006]
  6. Shannonsparkles

    Shannonsparkles New Member

    "Tired" is to CFS
    as "Drowsy" is to coma.
  7. Michelle_NZ

    Michelle_NZ New Member

    I appreciate your comments... I think I have to accept that they will never truly understand. The best I can hope for is compassion and to be believed.

  8. NyroFan

    NyroFan New Member

    I do not explain anymore. My life is my life. If I want to doze off---I will do it. There's nobody to see it and if I am asked why by phone I just say it is because I am sick.
    I just tell it the way it is this way. Needless to say, my cicle of friends has disappeared. Fine with me.
  9. Shelbyeatenton

    Shelbyeatenton New Member

    that a good way to describle it someone that doesn't have a DD is to say "think of the most exhausted you have ever felt in your life, multiply it by 10 and that may be getting close to what its like with these DD's"

    I have FM and have found that this helps some people understand on my days when i wake from a 12 hour sleep feeling that i never had a wink.

    Hope it helps,

  10. bossco

    bossco New Member

    Everyone can understand the relation the flu, since most have had it. The wiped out feeling that goes with the flu is how I "try" to help people understand. When you have the flu, you are knocked out for days, with cfs, the feeling is permanent...
  11. lenasvn

    lenasvn New Member

    The Spoon Theory
    My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

    As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick.

    I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

    I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

    As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand.

    If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
    At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

    I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

    Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point.

    I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

    She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
    I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons".

    But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet.

    I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

    I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late.

    You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet.

    Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about.

    You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

    I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons".

    I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

    We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently.

    Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
    When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely.

    Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

    I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it.

    I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”
    Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration.

    I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy.

    It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
    After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine.

    I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

    Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too.

    I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

    © 2003 by Christine Miserandino

  12. code34me

    code34me New Member

    I keep telling my husband "I have hit a brick wall!" That is the way I feel when I am done I guess? But to discribe the general feeling all the time I guess that is hard! I say I am in the twilight zone alot. Nothing feels real like I am in a bad dream that wont end :(

    I guess you can just do your best at explaining and then try to let it go after that? I am just getting to where I dont care much if people dont understand. The longer I go on with this the more I let go of careing. I am not sure it that is a good thing or not?

    Take care of you Michelle! Codey
  13. mjwarchol

    mjwarchol New Member

    Hi Michelle:

    I tell them to try and remember what they felt like when they had the flu, the achey tired feeling, and tell them that that is what I feel like every day.

    M J

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