husband advice,please?

[vette]

Hi folks, i'm hoping that someone here may be able to advise me as to how i can TRY to educate my husband about FMS!

I feel as though he thinks i'm just "putting it on" or "malingering" or even "bone bloody idle" as my mum was so fond of calling me!

Have any of you any websites that you can suggest i send him to to try & get some understanding of what it is that we deal with?

Don't get me wrong, i love him to bits & everything, but he just doesn't seem to have ANY idea of what life is like with FMS & when i try to tell him anything he gets all "huffy".

Ah well, HOPEFULLY you can suggest some sites. There's no point telling him to read a book, the only books/magazines he reads are about computers!

Many thanks in advance!

Be well,

'Vette

[BrokenBladder]

Vette I really feel for you. My first husband was that way and it drove me crazy!! It sound like your husband likes the computer so why don't you do a search on fibromyalgia and then leave it up for him to read. I can't think of a website right off hand but I know when you google it you will come up with all kinds of information. Another suggestion would be to have him go to the doctor with you and have the doctor explain to him how FMS affects you. For people who don't have this disease it can be very difficult to make them understand how we feel. I'm sending you a big cyber hug ((((()))))!!!!!!!

[Tootsie]

In the old BT forums there was a posting of a letter called, "A Letter to Normals" which described what it was like to live with fibromyalgia. It was taken from a site www.fibrohugs.com. I haven't checked that site again but that is the name on the hard copy I printed. You might try and find it. Cheerio.

[Sandy58]

Hi vette,
My husband also have no idea concerning anything about ms. He is in denial and to be honest I feel right now that our marriage may not last. I do love him to pieces but how much can a person take of being looked down upon because of not being able to do as she done before she was diagnose. I suffer now with extreme fatigue and depression which I think may be related to my relationship.

[BrokenBladder]

Sandy,
Sweetie I understand exactly what you're going through. I was married to my first husband for 21 years, but when I started having health issues everything went bad. He was in denial and wanted me to do all the things I used to do. He also looked down on me and even told people that there was nothing really wrong with me........AND I had taken him to the doctors appointments with me so that he could hear the doctor and understand.
The disease that we have is enough stress on us, but to have someone who doesn't support you makes it 10 times worse. I'm sending you ((((HUGS))))!!!!
If you want to talk to be about this in private then please PM me.

[vette]

Oh, thank you all SO much for the replies... i actually feel as though i'm getting some support now! Just wish it was from my hubby! But your support makes me feel better able to handle this. I truly feel for you, Sandy, it's SO hard to get them to understand.

Be good to yourselves, and thank you again.

Be well xx

[Linda25]

I had to take my ex with me to a couple of doctor's appointments and he finally got it (somewhat)

the idea of finding computer websites to look at is a great idea

The Arthritis Foundation probably has some good info

all you can do is keep feeding him "authoritative" information, and also tell him how sad and frustrating it is to have a loved one "not believe you" or judge you for being sick. It would be like being angry at a diabetic for having insulin problems

good luck to you - this is a problem that many of us face, unfortunately.

Linda25

P.S. I added a bunch of websites to the "useful website" section - sorry the format isn't very good, but there is some excellent information on the sites

[ptlover]

hi Vette! I know exactlu what you are going thru. Iws diagnosed about 3 years ago and went thru many difficulties coping with fms and also with my hubby. It was a real nightmare! It took me a long time to understand the problem and I figured out that he was just as scared as I was....I left the house and considered divorce but didn't really want that. He was in complete denial, had more pain than me, told me I was lazy....took it all out on me. Then I slowly came to terms with my condition and of course so did he. He now has interest for it all, listens to me and even helps me when he sees I can't cope!
What I mean is that it takes time, you both have to come to terms with it all and with time I'm sure you'll be able to talk about it and even get some support. Be patient. My relationship has improved again since then, even if sometimes he gets angry at me for being sick because he also has to grieve (or do you say mourn) for many things. If you want you can talk to me on msn about it, I(d be happy to chat with you in private and share my experience in order to give you some hope. ptlover@hotmail.fr
Hang in there and don't hesitate to talk about it everytime you don't feel right!
Many hugs
PT

[fantasyworld_31501]

You post made me laugh..for the first time today. but anyway men are hard to educate, remember the affects of your tuff guy syndrome. we men don't cry so why should u..well my mom asked me one day she said, diane are u really as sick as u claim to be..Now that pissed me off..I think education on any disease is the answer to solving any problem. I made copies of my disease and gave it out to my family to read and if they didn't believe me I didn't care then..I knew I was sick , but a hubby should be more supportive and as time goes by u will see he will be. he is scared , one thing is that you have changed and ur no longer the woman he once knew..Try to take him to a dr. visit and allow the dr. to explain things too..be patient for it will be a real hard thing for both of you to come to term with and u being sick will make it harder on u..god bless you and good luck ..one thing is to remember, he loves you like no other, he knows you like no other and he will support you like no other...diane in ga.:)

[champgoof]

Hi folks, i'm hoping that someone here may be able to advise me as to how i can TRY to educate my husband about FMS!....Ah well, HOPEFULLY you can suggest some sites. There's no point telling him to read a book, the only books/magazines he reads are about computers!

Many thanks in advance!

Be well,

'Vette


I had brought my boyfriend with me to a few doctors appointment. He was always supportive, sweet and over considerate but it did help him truly understand what I was going through and how fustrating some doctors were
:mad: It helps them hear it from the doctors mouth, they can ask questions and appreciate it better. I also agree with the person who said just it affects our lives it affects theirs as well. Sometimes I would forget his life has forever changed as well...it takes time for both to accept , then for both to find a way of living with it together..;)

[BrokenBladder]

Vette I'm checking in with you to see if you have made any progress with your DH.

Sandy it sounded like you were at the end of your rope, were you guys able to get things resolved?

Wishing the best for both of you.

[Globug]

A Healthy Marriage Despite the Added Challenge of Fibromyalgia

The secret to a successful marriage—when both spouses have FM.

[ View Article ]

[Globug]

But You Don't Look Sick - The Spoon Story

Ever wished you could explain to others how it feels to be chronically
ill - with an invisible illness? Explain why some days you can go out ot
dinner and other days you can't get out of bed? Explain how you have to
ration every drop of precious energy - and the amount of that energy
can change every day?

Read this marvelous essay written by a woman with Lupus (another "invisible"
illess).

http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

[Globug]

A Letter To "Normals"

Having FMS/MPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident , most people do not understand even a little about FMS/MSP and its effects, and of those that think they know, many are actually mis-informed.

In the spirit of informing those who wish to understand......

These are the things that I would like you to understand about me before you judge me....

- Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

-Please understand the difference between "happy" and "healthy" .When you've got the flu you probably feel miserable with it, but I’ve been sick for years. I cant be miserable all the time , in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say , "Oh, your sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome. Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes ,or an hour. And, just because I manage to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of disease you’re either paralyzed, or you can move. With this one it gets more confusing.

-Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what FMS/MPS does to you.

-Please understand that FMS/MPS is variable. It's quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.

-Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/MPS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it cant be put off of forgotten just because I'm out for the day (or whatever). FMS/MPS does not forgive.

-If you want to suggest a cure to me, don't .It's not because I don't appreciate the thought, and it's not because I don’t want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped , all people with FMS/MPS then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/MPS, if something worked we would know.

-If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

In may ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning.

I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you .

...and, as much as it's possible, I need you to understand me.


--------------------------------------------------------------------------------

We would like to state that this "Letter to Normals" be used to help other people with FM/MPS as long as proper credit is given to Bek Oberin (Bek wrote the Open Letter To Those Without CFIDS)

[Globug]

Hope these help, I keep these current on my Fibromates Forum because someone is always needing them.

Something that I have used with many people to help them to understand is the "rock". I ask them to put a tiny pebble in their shoe and to not remove it no matter how irritating it becomes, but I ask them to go about their daily activities.

When the day is over I ask:
1) Did you think about the rock most of the day and the pain it was causing?
2) Were you able to concentrate well without thinking about the rock?
3) Did the rock control the way you did things all day long?
4) Did you at any time feel agitated or angry because of the pain
5) Were you able to "be yourself" despite the fact that this constant irritation was there with you all day?
6) Now can you understand a little bit about the constant, invisible pain that we live with every day of our lives?

Bug Hugs to All,

Globug