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SandSurfSun

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to someone who doesn't have Fibro, or understand it? I have pulled many articles up for my boyfriend to read, which I will say he does because I read it with him ;-) . The problem I have though is when we go off for the whole day, I come home and have to nap, even if its just an hour, so I can make it through the evening hours (at least until 10pm). He doesn't get it, doesn't understand how exhausted I am.

There are days I work all day, then come home, take a hot bath and I'm in bed by 630. Fibro is new to me and he has dealt with a lot the past year.

He is trying to understand, but with me throwing hypothyroidism, sciatica now Fibro at him....Im really afraid of losing him. I try to control my emotions, control my exhaustion, and I refuse to complain to him about how sore/bad I feel. I just push through my days and try to smile.

I just feel lonely because I have no one to talk to who understands.
 

SulaBlue

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It's something that really is hard to understand.

The best way I've found to explain it is to tell my husband "Imagine you have the flu, with all the aches and pain. Now take away the stuffy nose and fever, but keep all the aches and pains and lack of energy from not sleeping well because you couldn't get comfortable. Think about how hard it is to go to work and do things while you're sick. Now imagine living with that every day, but without the obvious runny nose and cough that lets everyone know you're sick. It just takes me more energy to do the smallest of things because my muscles and my body aren't working right."
 

SandSurfSun

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SulaBlu, thank you. I've tried explaining that I ache like I have the flu, but maybe explaining in more depth the way you do will help. Im going to try it tonight :smile:
 

1sweed

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Hi there, I hope you feel better soon. I am no expert when it comes to tell others about fibro. but remember the most important thing is to be honest and keep the lines of commuication open. Chronic fatigue, is a fatigue that is never ending. Most of us look so normal on the outside that most husbands and boyfriends, can not understand how we can look so good, but be so wore out. Be sure not to complain to much in front of him, because it makes men feel helpless not being able to help you or make it go away. Try to do activities that are not stressful. Be patient and kind with him and do web searches with him on the topic's of chonic fitigue and fibromayalgia, just so he can see and read about the illness and so he can understand it :)better.
 

PegGinger

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I am so sorry you feel like you are going through all you are by yourself. It is very difficult, for I have had the same response from my husband many times, and it is very depressing. He has been going through some heath issues lately, due to him not paying attention to what his body was trying to tell him and attributing it all to growing older, which he has said to me numerous times.
The thing is, is that I have had sciatica since I was 18, and the Fibro and chronic fatigue diagnosed since 2001, hypothyroid diagnosed around 2003, but had symptoms for at least 10 years before......and just recently with hyper-mobility.

Now, however, since all the low levels had caused him to have a lot of anxiety and some depression, and feeling fatigued most of the time, he now knows just a little of how I have felt all these years. He has actually apologized for not being more supportive for all these years, but I still don't think he can understand it as much as I would like for him to.

I am trying to treat him the way that I would have liked him to have treated and supported him all those years, but sometimes is very difficult. Oh and also have death with anxiety disorder and depression since in HS also, so making it even more difficult to be comforting to him, but am trying very hard.

Maybe you can find a support group to support you since he cannot seem to be able to. As far as you losing him, I know you love him, but you should be taking care of yourself, and not worrying about losing him---because your conditions are NOT things you wanted or asked for, and even if he cant be supportive and understand, he should not make you feel bad that you have these things....and if he is worthwhile, he would not even think about leaving you...he may never understand unless he goes through even a part of it himself, so that may be asking too much.....unfortunately, it took this happening to my husband for him to understand even a little bit. So, truly you may have to get your support from others who are going through the same thing as you. Take care!
 

mariposa

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I'm not sure there *is* a good way to describe it to someone who hasn't gone through it, unfortunately. I think that the old saying "knowledge is power" probably fits here because the more your boyfriend researches (hopefully together with you) the more he'll feel that he knows what's going on exactly. He'll most likely feel terrible that he can't do anything to help you, but a little compassion from someone just understanding can go a long way.
 

PayasoHombre

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Explain it from a previous experience of the person you are talking to. if they've ever had chicken pox, tetanus, or malaria, explain it as that, but without the symptons such as runny nose and inability to breathe. It is simply just pain and aches, but without the usual symptoms
 

MercyL

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Apr 30, 2013
Messages
120
Diagnosis
01/1986
Country
USA
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CO
I definitely understand the difficulty you are having. Trying to explain chronic fatigue is like explaining taking a shower to someone who doesn't understand hot and cold running water.

Does your boyfriend play or watch any sports?

Chronic fatigue is like being that lineman, in American football, that takes big hits during every play. Now, imagine being that lineman but playing without the helmet and pads, then having to walk 10 miles to get home. NO break for a shower or to change out of the team uniform, you just walk right off the field and into that 10 mile trek.

That's just one example, but it gets the point across by creating an empathic connection between your condition and the person you are describing it to.

Does that help?
 
Joined
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I know it can be difficult to explain. I think some people can be a bit of a butt-head when they have a hard time empathizing with others. We don't have to go through something to imagine what it must feel like, but some people can't reach within themselves that far. The most universal thing I can compare it to is the flu (as someone previously mentioned). A lot of people don't get it when there's a difference between not being able to do something, and just choosing not to. I can't turn myself into a man, no matter how hard I try. It's bad example, but it's the same principle. When you deal with fatigue that bad, sometimes you just can't do whatever.
 
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