Discussions By Condition: Medical Stories

How do I get my wife and kids to understand fatigue?

Posted In: Medical Stories 6 Replies
  • Posted By: Dr. Tired
  • May 12, 2010
  • 08:16 AM

"If you really wanted to spend time with me, you would find a way to get off of the couch." My heart sinks whenever my wife, whom I adore, says that to me during a bad stretch of fatigue. I live for the "good" days, when I have energy and don't feel like my body is a giant blob of inflammation. The "good days" are predictably eroded by first a sore throat, followed in a day by ulcers on my tongue, and then a crippling fatigue made worse by intractable joint and muscle pain.

How do I explain that my fatigue is not an issue about self will? How do I get a loved one to understand that I am not choosing to sleep 12 hours in order to have 3 or 4 good hours in a day?

I have been following the B12 thread closely and am on my second day of taking supplements to bolster the health of my mitochondria. I suffer from chronic PMS: Punky Mitochondria Syndrome. At least I try to find the humor in this. I am hopeful that these vitamins will turn things around. However, in the mean time, any insights on helping those I care most about understand the "bad days" would be terrifically helpful.

I agree with what someone on this site wrote: unless one has experienced it themselves, no one can understand the fatigue we suffer.

I hate feeling misunderstood.

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6 Replies:

  • Sorry to hear that your wife is so not understanding to your condition. i hate to say this but ive found there is no way to make those who dont understand actually understand unless they are willing to listen to you or another about your condition. (Most really dont want to know). Be aware that the "misunderstanding" can come from many sources.. i've found in, esp. in those close to me, it is often a denial thing as they just dont want to truely know how sick you are esp when it comes to things which cant be easily fixed.. Denial (if that is your wifes issue) is the hardest thing to change. My nanna pushed me to the point of collapsing in a shopping centre (when she insisted i take her shopping when i was really having an unwell day), then she paniced and wanted to call an ambulance when i ended up on the floor unable to even sit or talk. To this day she insists it was "a once of thing", "you must of been sicker than normal" etc. i HATE these comments as i was about the same as i often are, the only difference was she talked me into taking her shopping and insisted i walk everywhere and then was about, to see the consequences of it. She still tells me i just need to exercise more and it will fix me :mad: Maybe you can try to go to counselling with your wife over it all. Maybe she would then take you more seriously? (I usually stay away from those who just dont understand). i like your name for the condition :rolleyes: , anything is better than what it is currently called. i'd like you to know that regular B12 injections (I have 2 injections per week) over quite a long time has helped my condition immensely and i can now shop without consquences (I have CFS). The injections thou were noticable short term with my memory.
    taniaaust1 2267 Replies Flag this Response
  • "If you really wanted to spend time with me, you would find a way to get off of the couch." My heart sinks whenever my wife, whom I adore, says that to me during a bad stretch of fatigue. I live for the "good" days, when I have energy and don't feel like my body is a giant blob of inflammation. The "good days" are predictably eroded by first a sore throat, followed in a day by ulcers on my tongue, and then a crippling fatigue made worse by intractable joint and muscle pain. How do I explain that my fatigue is not an issue about self will? How do I get a loved one to understand that I am not choosing to sleep 12 hours in order to have 3 or 4 good hours in a day? I have been following the B12 thread closely and am on my second day of taking supplements to bolster the health of my mitochondria. I suffer from chronic PMS: Punky Mitochondria Syndrome. At least I try to find the humor in this. I am hopeful that these vitamins will turn things around. However, in the mean time, any insights on helping those I care most about understand the "bad days" would be terrifically helpful. I agree with what someone on this site wrote: unless one has experienced it themselves, no one can understand the fatigue we suffer. I hate feeling misunderstood. I find this aspect rather interesting, it is because your illness has not been validated with a diagnosis. I have no definite answer for this problem. The best I can think of is to compare this to someone with a terminal illness - I read somewhere that people with CFS often suffer fatigue that is comparable to cancer patients and those with end stage AIDS, but it isn't recognized as real. The fact that she thinks you just aren't trying hard enough is VERY typical of how this disorder is misdiagnosed - there are whole fields of psychology where they have decided that low energy = depression, i.e., low motivation, the very thing you are being accused of. Has your wife ever been wiped out by the flu, or pneumonia, or something similar, often people getting better might get it some if you compare how you feel to that. It is interesting though, because I myself saw my fatigue as 'not feeling like it' for years, you can't really put into words that what it means for it to feel like a chore to walk up a flight of stairs, or to bend over and pick up something that has fallen on the ground. I've recently switched to describing myself as low energy. Just thought of another analogy I read on a website that helps others with chronic illnesses describe how their condition affects their daily life - there was a story about which basically describes energy as money - so a typical person has $100 dollars to spend each day, a typical day might cost them some percentage of that, say $50, but rarely if ever does it cost the whole $100, someone with CFS will have less - depending on their level of energy it could be $0.5 or $5, thus a typical day will put them well over their limit always. Thus, once your $5 is spent, it's spent and anything beyond that will actually harm you and lead to a further reduction in your $$$$, or energy, available for the day... Good luckVelha
    velha508 321 Replies Flag this Response
  • "If you really wanted to spend time with me, you would find a way to get off of the couch." My heart sinks whenever my wife, whom I adore, says that to me during a bad stretch of fatigue. I live for the "good" days, when I have energy and don't feel like my body is a giant blob of inflammation. The "good days" are predictably eroded by first a sore throat, followed in a day by ulcers on my tongue, and then a crippling fatigue made worse by intractable joint and muscle pain. How do I explain that my fatigue is not an issue about self will? How do I get a loved one to understand that I am not choosing to sleep 12 hours in order to have 3 or 4 good hours in a day? I have been following the B12 thread closely and am on my second day of taking supplements to bolster the health of my mitochondria. I suffer from chronic PMS: Punky Mitochondria Syndrome. At least I try to find the humor in this. I am hopeful that these vitamins will turn things around. However, in the mean time, any insights on helping those I care most about understand the "bad days" would be terrifically helpful. I agree with what someone on this site wrote: unless one has experienced it themselves, no one can understand the fatigue we suffer. I hate feeling misunderstood. hi they cant understand no matter what you say, there is story called lupus and spoons.i got my family to read it in the end cause they just dont get how fatiqued i am. it helped good luck.ps can anyone tell me are you allowed to put links on this site?,i was gonna put the link one in for the spoon web site.
    nicci-c 6 Replies Flag this Response
  • Thanks for your replies and suggestions. Yes, you can put links up as they can be very helpful. In reading over the comments to my post, I wonder if my wife sounded worse than she is. She is more patient with me than I think anyone can be. Sometimes she gets tired of me being tired. Those are the tough times - especially if I am in a bad phase. I like the analogy of the fatigue one feels with illness as she has experienced that form of fatigue before. The money comparison is also a good one. Thank you all for taking the time to lend me some advice. May you all have only good days in the days to come.
    Dr. Tired 4 Replies Flag this Response
  • "If you really wanted to spend time with me, you would find a way to get off of the couch." My heart sinks whenever my wife, whom I adore, says that to me during a bad stretch of fatigue. I live for the "good" days, when I have energy and don't feel like my body is a giant blob of inflammation. The "good days" are predictably eroded by first a sore throat, followed in a day by ulcers on my tongue, and then a crippling fatigue made worse by intractable joint and muscle pain. How do I explain that my fatigue is not an issue about self will? How do I get a loved one to understand that I am not choosing to sleep 12 hours in order to have 3 or 4 good hours in a day? I have been following the B12 thread closely and am on my second day of taking supplements to bolster the health of my mitochondria. I suffer from chronic PMS: Punky Mitochondria Syndrome. At least I try to find the humor in this. I am hopeful that these vitamins will turn things around. However, in the mean time, any insights on helping those I care most about understand the "bad days" would be terrifically helpful. I agree with what someone on this site wrote: unless one has experienced it themselves, no one can understand the fatigue we suffer. I hate feeling misunderstood. Come on over to the b12 forum where this will be read and answered.http://forums.wrongdiagnosis.com/new...reply&p=233219Read the basics, and post to the first listing all your symptoms and compare to the list provided on basics.http://forums.wrongdiagnosis.com/showthread.php?t=62327
    Freddd 3576 Replies Flag this Response
  • My exhusband used to make comments about me "always being sick" or "you always hurt" etc. It was quite hurtful. And I agree, unless you've been ill, or been through something similar no one will get it. I though, agree with the one poster who suggested counseling. If counseling sounds a little too extreme, try going to see a mediator, or perhaps take your wife with you to a doctor's appointment. Sometimes the nurses are able to explain things a bit better than the docs but not always.
    ferretlady 7 Replies Flag this Response
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