I dont think he understands!

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I dont think he understands!

Postby TNK* » Thu Sep 18, 2014 5:10 pm

Im talking about my hubby.

Dont get me wrong, i love him to bits and he does try his best but i just dont think he "gets it" and its really frustrating.

For instance, i could be in bed all day, get up for a bit in the afternoon, and then say im knackered ...and he will say "what still, you have been asleep all day?" or "you said you slept last night" ...that sort of thing, and then, if he leans on me or something and i wince because im sore, he will look at me like im treating him bad for wanting to cuddle me or like im over exaggerating with the pain response.

I know he tries to understand and he does a lot of reading into FM, but like the title of this thread says....im just not 100% sure he totally understands
A Dream Is A Wish Your Heart Makes When You're Fast Asleep ºOº


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Re: I dont think he understands!

Postby alice2411 » Thu Sep 18, 2014 5:17 pm

My bf was like that until he saw me in pain and realised ever since then he's been helping me and that. Have u shown him that you tube video?
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Re: I dont think he understands!

Postby TNK* » Thu Sep 18, 2014 5:29 pm

What you tube video?
A Dream Is A Wish Your Heart Makes When You're Fast Asleep ºOº


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Re: I dont think he understands!

Postby KATIEP59 » Thu Sep 18, 2014 5:35 pm

I feel the same my hubby says
He understands and wants to help but he thinks I should just try all the meds no matter what they do to me. I understand it's hard to really know what it feels like but wish I could explain more. If there is a video I would like to see it?
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Re: I dont think he understands!

Postby alice2411 » Thu Sep 18, 2014 5:35 pm

Fibromyalgia: explaining to your loved ones its in animae its really good though.
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Re: I dont think he understands!

Postby Tally1068 » Thu Sep 18, 2014 5:52 pm

:-) Linkie to the You Tube video

http://www.youtube.com/watch?v=hBcfhpwCOWU
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Re: I dont think he understands!

Postby KATIEP59 » Thu Sep 18, 2014 6:19 pm

If only they could walk in our shoes for just one day. At the moment I have burning feet shooting pains in my legs tightness down the back of my legs and I am drugged up!!
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Re: I dont think he understands!

Postby simshane » Thu Sep 18, 2014 6:45 pm

Im new to all this as my new girlfriend suffers quite badly at times and i want to understand and help in anyway i can but half the time i just feel useless!
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Re: I dont think he understands!

Postby Butterfly8588 » Thu Sep 18, 2014 10:19 pm

Hi everyone,

I can kind of relate in a small way. My boyfriend has days where he forgets and says the 'but you said you slept' line and I know it can be upsetting sometimes. He also wants to lean on me in bed and I just cant have it anymore. But I think it must be so hard being the partner to someone with an illness like ours, essentially I feel like I'm saying to him, don't argue with me cos it stresses me, don't question me all the time cos it stresses me and oh yes don't touch me either but please stay cos I need you.
Sometimes I try to put myself in my boyfriends shoes and I don't know how he does it cos I'm pretty sure I couldn't watch him in pain every day. At the very worst times I wish he would leave me almost as much as I want him to stay because I feel he deserves more from a girlfriend then what I can give him. I feel selfish for keeping him and I wouldn't blame him for going.

Simshane I take my hat off to you hun, it's lovely you have taken the time to try to understand your girlfriends illness. You are a rare breed and luckily for me, if not for him, I've found a good un to. My only advice to you is to just be patient, when she's moody try to understand it may not be her fault cos we stress so easily and the pain makes us snappy. If your girlfriend needs to sleep, try to understand her body is under enormous stress and she may not be sleeping well even if she's physically asleep. I could go on but I'm sure you get the gist. Just be there and be patient.

Gentle hugs to you all xxx
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
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Re: I dont think he understands!

Postby Sari mitchell » Thu Sep 18, 2014 11:46 pm

Hello Fellow Fibro Friends:
I know they, meaning people who don't have fibro, don't understand, I don't have to say "I don't think" because if people we love, or that supposedly love and care for us, have to doubt us, question us, put us down, be judgmental and everything else they do, then I have to at least let myself think that they really don't understand or get it. For that I can't be mad at them, however, my anger comes from what they do with us when they find out this is what we have and still can't get it or trust us that it is as bad as we say, Then I'm p :swear1: :swear1: d. Why in the world would anyone make this up?

To be honest with you, this illness is soooo very intense and comes from SO FAR outfield, that it is almost something out of a horrible movie and just not real. NOBODY CAN UNDERSTAND THIS UNLESS THEY HAVE IT ,,PERIOD..... It is just too much to ever wrap your head around, that one day we can all be having the greatest, quality of life filled with excitement and travel and jobs and kids and husbands and within a day even THAT CAN ALL GO UP IN SMOKE, like mine did. How does anyone get that? how is anybody supposed to understand and get it when the frigin doctors don't even get it. Now that's just scary. tHEN, EVEN IF YOU DO GET IT SOMEWHAT, WHAT THE HELL ARE WE, OR OUR FAMILIES, SUPPOSED TO DO ABOUT IT.

I'm guessing that as hard as it is for us to understand what is happening to us it is that much harder for others to understand or know how to react. I hope i'm making sense. I am not angry at people that don't understand, I am angry at people, including or especially loved ones, and doctors, who don't BELIEVE us that we are suffering from something so horrible. How can THEY imagine that this is what we all would have chosen to have or to live with. It must really suck for our spouses and children and others to have us change so drastically and quickly however, it's not our faults. wE DIDN''T ASK FOR THIS. If others knew just how bad it is, how much we hurt and hate and are sad, and feel like our lives are over, then maybe they would have more compassion and understanding.

What freaks me out is today, their is so much information and knowledge about this illness that you have to be a REAL FU-KIG IDIOT not to get it. But again, it's really out there and maybe just beyond what peoples minds are able to take in if they don't have it. Also, wHAT REALLY AMAZES ME, AND I MUST COMMEND OTHERS FOR, IS HOW PEOPLE STAY TOGETHER WHEN ONE IS STRICKEN WITH THIS MONSTER. It seems almost impossible to continue as is, when a family member gets this, It is a TRUE TEST OF LOVE and for all you sufferers who still have husbands and even wives that stick around when you are diagnosed with it, That is 1 thing you can be grateful for in the midst of all this. you should be so very thankful that you are not one of us who have lost almost everything due to this. LIKE I DID, tHANK YOU TO THE PEOPLE WHO DO STICK AROUND Thank you mom.. I love You.
Sari
Last edited by FluppyPuffy on Sat Sep 20, 2014 9:55 am, edited 1 time in total.
Reason: Removal of a potentially offending word and replacement with emoticon. Split into smaller paragraphs for easier reading.
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Re: I dont think he understands!

Postby JamesinLon » Sat Sep 20, 2014 3:54 pm

Common this I'm sorry to say. More of a problem when the consultant doesn't seem to understand. "Can you describe the pain?" I just say you know the Eskimos have 50 different ways to describe snow. Sorry I can't be that specific. I just concentrate on deflecting it. Only when you do have a bad attack in front of someone when they suddenly wake up to it. I wish you well!
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Re: I dont think he understands!

Postby Zia2014 » Sun Sep 21, 2014 2:28 pm

Yep, my partner is brilliant and loves me and I know he tries, BUT...honestly he needs to stop saying things like "so you must feel better cos you slept then" OR "I hardly touched you!" (bruise like a peach me and always have done but now it bloody hurts when he accidentally touches me) OR "you can't be tired, you've only just got up!" OR my personal favourite, "I've done all the cooking this week" :nono:

Half of it is joking around, we have always been like this and I have always bruised easily, not done much cooking, been lazy etc. But there are times when I am exhausted, emotional, and those comments are so NOT helpful! :-x

I do try and remember that he is not in my shoes, now would I wish him to be, and he does do a lot for me. But I don't tend to get soppy about it ;-) :mrgreen:
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Re: I dont think he understands!

Postby *Lisa* » Sun Sep 21, 2014 8:18 pm

simshane wrote:Im new to all this as my new girlfriend suffers quite badly at times and i want to understand and help in anyway i can but half the time i just feel useless!


Hi & :welcome:

My 18 yr old daughter has also been diagnosed with fibro and she has a boyfriend whom I always chat to about her as he has many questions. I try to make him understand the best I can or my daughter asks me to have a word with him if things are strained from the fibro.

If you need any advice you always welcome here to ask and we shall all try to help.

Although unless you have fibro I feel no one can really understand and its very difficault to explain.

I try to tell my daughters boyfriend that not only are her muscles very stiff (mentioned about giving her massages) that everytime she tries to mobilise and do things the muscles pull/burn and cause stiffness and pain like the sensation you get when you have come to the peak of an exercise and cannot go on any further.

I think for people its also the constant pain that's hard to understand as normals experience pain but never all the time which in turn causes extreme fatigue and muscle fatigue.

Then you have how the chronic illness effects ones life. Some people loose a lot of there life like jobs, hobbies and in my case my home and my kids as I became to ill to look after them. For some it can cause depression and anxiety so CBT therapy can help with techniques to control or make the persons life a little better. Then theres the financial side of things as people like myself have to fund there own treatment to gain any sort of mobility and learning to live off benefits as im too ill to work :( and to write those damm forms out :nono:

For the person with fibro its also a mental battle daily to keep ones head above water. Trying not to get the fibro to rule them, to push past limitations to be able to do the most basic of things. To live for each day and go by the minute as the pain can get worse and spread through out the day. To learn to pace and limit stress and anything else that maybe a trigger

Fibro is like having a full time job :crazy: :crazy: :crazy:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: I dont think he understands!

Postby Tally1068 » Mon Sep 22, 2014 4:56 pm

*Lisa* wrote:<snip>

I think for people its also the constant pain that's hard to understand as normals experience pain but never all the time which in turn causes extreme fatigue and muscle fatigue.

Then you have how the chronic illness effects ones life. Some people loose a lot of there life like jobs, hobbies and in my case my home and my kids as I became to ill to look after them. For some it can cause depression and anxiety so CBT therapy can help with techniques to control or make the persons life a little better. Then theres the financial side of things as people like myself have to fund there own treatment to gain any sort of mobility and learning to live off benefits as im too ill to work :( and to write those damm forms out :nono:

For the person with fibro its also a mental battle daily to keep ones head above water. Trying not to get the fibro to rule them, to push past limitations to be able to do the most basic of things. To live for each day and go by the minute as the pain can get worse and spread through out the day. To learn to pace and limit stress and anything else that maybe a trigger

Fibro is like having a full time job :crazy: :crazy: :crazy:

Wonderful post, Butterfly and Sari yours too. Fibro and the years that led to it which was incubating for years and years before diagnosis cost me my job and my marriage.

Loads of people, those close to you, don't and cant cope. I'm not sure if the boot was on the other foot, if I could either. I actually would hate to still be married because there's no way I could handle intimacy and why should my husband suffer?
But I take my hat off to the wonderful partners that do.

Simsham You sound so wonderful and caring. With your attitude she is one lucky woman.
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Re: I dont think he understands!

Postby simshane » Sat Sep 27, 2014 1:57 pm

This forums is so helpful! I work 7 days a week i cook for her i give her a full body massage 5-7 times a week, run her baths but there are still times when i forget and snap back at her and i feel awful for doing so.
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