I just signed into here for my wife. She's the df part and she has fibromyalgia. (for about 4 months now) What can i do to both support her in her efforts to cope and to motivate her to learn how to? I've read some books, but would appreciate knowing what is really important on a day-to day basis.
First of all, your wife is lucky to have such a caring and supportive husband. Most of us on here are not that lucky.
Most husband don't see to "get" it.
I think the most important thing is encouraging her to listen to her body, learn to know her limitations. (they will vary from day to day) and not to overdue it. Also, when she tells you she is unable to do something, you need to accept that. She may look fine, but inside is a different story. She needs to learn not to feel quilty for her limitations, she didn't ask for this. You need to make sure you don't blame her or take frustrations out on her over this.
Treatment for fibro. is really a matter of trial and error, what works for some won't work for others. What works at first may stop working. So she needs to be patient and accept that this is an ongoing battle.
Also, any changes she should see a doctor even if you think it's just fibro. The doctor needs to know.
Feel free to ask as many questions as you like.
Fibro is a life long thing and depending on your wife you are either going to get sick and tired of it over the years or you won't hear much about it from her. It is a tough spot to be in for you because you don't want to provide a crutch yet be supportive. I think if you are already a caring person and take the time to ask how are you doing today and is there anything I can do to help you today...that would be helpful to just about anyone. You don't want to make her dependent on you so giving her a hand is great...pretty much just being a caring, loving, understanding person is really all she will need. More than anything I think focusing on positives is the best approach and saying things like....you are looking great today, or you did all that by yourself gosh that's great! just little things/words. Learn all you can and be informed and if the doctor she goes to over the years to isn't helping her suggest another(sometimes we have to change docs because of a move or something) ...not all doctors believe in this disease but pretty much it is treat the symptoms as they turn up. I have found a simple injury takes sometime 3 times longer to heal or to get better from so just listen and use the words "I'm sorry" goes a long way. Nothing you can do and nothing she can do it just is so kind words and hug are sometimes all we can do. good luck.
I agree, she is a LUCKY lady! My husband "gets it" as well and I am so very, very blessed to have him. Having someone who loves her and is understanding is a huge deal - at least for me, as stress can cause a flare like nothing else.
I would do what you are doing - become educated about Fibro and like the other ladies have said... just be there for her when she needs a little pick up or physical assistance with something that might be too heavy, repetitive, etc.
I too am one of the lucky ones who's husband "gets it". It sounds like your wife might be one of the lucky ones too. All my hubby of 28 years knows is that I am 10 times more sensitive than he. That covers everything from temperature, humidity , PAIN, PMS, ect. We don't talk about it much anymore after 10 years of fibro., but evey morning, when I finnaly get up, he always asks " how do you feel today"...but he waits the appropriate amount of time before asking. Not when I'm getting up and moaning and trying to get going but after I've had my meds about a half hour. If you put these two things at the top of your list you should be sailing. Oh and when friends ask us to do things, if it's not real important he always says, " We'll see how my wife feels, and if she feels up to it, we'll be there." If it is important, I decide if I want to go and then it is up to me to see that I am rested and arrange my meds around so that I'm feeling the best I can on that day. You will slowly learn when her best times are and work your schedual around her a bit. Good luck and hope some of this helps
I commend you for asking, for putting yourself out there in order to help your wife. My advise: when she talks to you about it....listen. You can always tell when someone doesn't want to hear about it. You can see their eyes kinda go dull and you know they're thinking about something else, like, 'I wonder if my game's started yet'. If she knows you really listen to her, she'll feel confident in your support. She'll know you really care about how she feels. After she tells you and you listen, ask her what you can do that would make her feel better. Maybe it's just a hug when she needs to cry, or an 'I love you'. Okay...this is important. Do not ever, ever ask her if she would like you to vaccum, do the dishes, run to the store, etc. Just do it. If you ask her first, she'll feel guilty that you have to do what she used to do. Guilt...not a good thing, and she'll have plenty of it with Fibro. If you do something without asking her first it will make her feel like the luckiest girl in the world. (Well, I would ).
dfruss, I commend you for signing on here. Has she herself signed on, and found help and support here? This is a wonderful place for both of you to seek help, and answers. I have found so much help, and friendship here. Your wife is lucky to have you, just by coming on here, and asking us, shows us you are a supportive husband who is looking to find the real answers, and we all can help you. There are some wonderful people who have had fibro for 20 plus years, and can offer some great advice.
As a wife, and mother, who has had fibro for about a year, along with other illnesses that come with it, I have had my share of marital problems. These illnesses have been sort of a curse for me, since I became sick, since last September, my marriage has gone downhill, and hurt me unconditionally. I have not worked in years, we decided I would stay at home with the birth of our first son who is 5 now, and although since not feeling well I still take care of the boys, it has hurt us financially by my doctors appts, my prescriptions, and traveling to see doctors. We have great health insurance, thank god, but it all adds up. My husband tries to be supportive, but I am sort of left on my own. He supports me financially, but our marriage, closeness, and companionship is gone. My husband has printed off everyone of these posts that I have written for some reason. I have needed this wonderful online place to seek advice, help, and friendship. I have written the truth, and needed advice on what to do or how to handle things.
So, as I write to you, I am crying, devastated about my life, my marriage, my husband. I am so greatful for our boys, they are my life, and keep me going. Everyday I keep the hope, and love for my husband, and pray that it will turn around. Not only am I hurting physically everyday, my heart is broken, and I thought that my husband would be there for me.
I am so glad that your wife has you, she needs to know that her pain is real, you will take care of her, and that you love her no matter what. You will never leave her, and she can come to you. She might have days where she cannot move, and she needs you to take care of her, and your children.
Good luck, and love her. Do not ever push her away, it will make her worse. Stress, and anxiety is like a breeding ground for more pain. There are going to be days where she is not going to be able to keep up with the house, in the end, it will work its way out, and it is not that important.
Good luck, God bless you, and I have you in my thoughts and prayers. You are a wonderful husband.
JC - you are a fine husband for asking!
With the relatively new diagnosis, your wife will be struggling to define where fibro fits in her life, what parts of her life have to go (and there absolutely will be things that have to go), what parts are absolute musts to keep, how she can balance everything while keeping as healthy as possible. My husband says the hardest part for him is seeing me in terrible pain, and feeling helpless and unable to do anything about it. Accept that fibro is here to stay. You will work out strategies together, little signals that mean "I can't right now", or "let's go for it". It's a little like you are teaching her to ride a bike for the first time. Be alongside her, not behind pushing. Be there to pick her up if she falls, but allow her to find her own way. It takes a while, but you'll get there.
It's clear you view this as an issue for both of you to manage together, and that is the most important thing.
It always does my heart good to see a supportive spouse on here. It actually brings happy tears to my eyes. You are on the right road to helping her... keep it up!
I agree with what others have said, the two most important being....understand her limitations and believe that it is real.... and from your post, I gather you do believe. When a spouse starts doubting then that brings up trust issues and a marriage without trust is not a good thing.
How refreshing your post is! Have you been to the doctor with her? That would be helpful. A couple of good books to read are "What Your Doctor May Not Tell You About Fibromyalgia" by St. Amand, and "From Fatigued to Fantastic" by Teitlebaum.
Thanks to all for the gracious responses. My wife hasn't actually used this site yet, & I'm still pretty green at it. Can I reply individually by clicking on the post#? I would like to do that. Anyway, I have another question & I hope I can pose it in the right light...My whole adult life has been based on the primise that if you work hard enough, you'll eventually see some sort of result. Now, with this new challenge in our lives, regardless of the effort put forth, nothing gets better. It's really easy to see how frustration could lead to a downward spiral in a hurry if left unchecked. I understand that most symptoms won't get much better, but that they won't get much worse, either. (Glass 1/2 full or 1/2 empty).
So, is it possible, or even advisable to attempt to set goals, or to track progress (progress could be something like trying to have scheduled nap times, etc.) as we try to put some sort of normalcy back in our lives? A little success would go a long way around my house!
(Hang in there, Kass, You got game!)
If you were here right now I would pinch you really, really hard to be sure you're real. Wow!! I can't even begin to tell you how impressed I am with your level of compassion. It's obviously an extremely rough road to travel in marriage regardless of who the fibro monster has control of. The one having to watch the destruction it causes has to be in a living hell of their own not easily understood either.
I'm actually crying now at the mere thought of someone so thoughtful they would make the efforts you clearly are. My situation is very similar to that of our friend Kass in this group. I've lost any hope that my spouse will ever make any effort to understand fibro and what it does to me.
Regardless, please pat yourself on the back, give yourself a big hug from all of us - and treat yourself to your favorite food, ice cream, milkshake, etc. - or something really special for being such a "special" guy!!!!
I too am very fortunate to have a husband that is very understanding. I used to do all the house work, laundary, cooking, mowing the grass, snow shoveling, etc. He now does at least 50% of it, even more when I am not feeling well. He is very considerate.
He understands that I have my good days and my not soo good days. One thing I learned is to do things in moderation. I limit the amount of time I spend doing one project by taking many breaks. So if I am weeding my garden, I'll weed for 20 minutes then take a break for and hour and then go do some more.