First off thanks for allowing me on this site…I have had fibro since I was 15 and I am 31 now…I got so mad at all the docs I seen for it that made me there genuine pig for all med fibro but told me I was to young for and pain med, but when I got older they would give me some. I have tried to control my Fibromyalgia for 3 years on my own and now I can’t even get out of the bed…I told y’all a little of my story so it might help u help me lol…I just got engaged last week and I told him in order for this to work I need him to read on and try to understand a little of what I go though…he doesn’t get not being able to get up and clean he just thinks I’m lazy he don’t understand how u could be sick all the time…I can’t get mad at him I can make him aware…so can y’all help me with some good site or p,ace on this site that might give him the most insight on what we has fibro patients have to deal with…thanks so much and I look forward to getting to know people because I feel so alone right now…thanks again
Uuuuuunh, Stormymyst, I suggest you don't get engaged at this time. If he thinks that you are being LAZY instead of being in PAIN, then this dude aint for you. You don't NEED someone in your life that is going to brow beat you & NOT TRY to understand what you live w/! I have been alone, but NOT lonely for close to 11yrs. It is easier to be boyfriend-girlfriend than to get a divorce!!! I was married for 7mos before "Mr Wonderful" decided married life wasn't what he'd thot it would be, I spent the next 11yrs trying to get a BLEEPING divorce!!! Just take a deep breath, give him some references to read or go thru, if he still doesn't know what is happening to you, then you need to reassess this relationship you are in w/him. ((((((((((HUGS)))))))))) Maggi
Hi Stormymyst,
Congrats on getting engaged. The best advice is for him to start going to the Dr with you. There is the spoon theory, letters to normal, and even this web site. However, seeing you, how it affects you, your pain levels, and everything that goes with your life with Fibromyalgia should be enough, I would think. I hope that there is a firm understanding of how this condition affects you, and limits you. Sounds like you still have some work to do! Compassion is difficult to teach, it's usually learned through life's experiences.
Wishing you the very best,
SK
I hate to give life altering advice...so I will not. However, I will suggest that you pause and re-read what Luna01 wrote to you. Relationships are hard enough without FM. I was married for twenty years, 99% of them with FM. It was tough in the beginning when FM was new to us but as the years wore on, I acquired other conditions that made home life and parenting rather uneven. She ultimately resented me for that even though I did nothing wrong (in my opinion). The relationship deteriorated and despite the fact that I loved her more than ever, she couldn't be my caretaker anymore.
I did not ask to be sick, or to not be able to contribute as much to parenting or maintaining the house. I will tell you that it takes a very strong person who truly understands the role of the spouse of someone with FM. My ex-wife also has a disability and has had it the entire length of out relationship. She also works in the field of disability so she truly understands the pitfalls of being in a relationship with somebody who has FM. And yet, this wonderful woman was unable to maintain the love she had for me. My disabilities did me in and to be honest (and after years of therapy) I totally understand where she is coming from.
Oh, and a side note. After a few years, I took the plunge and began dating again. I fell in love with a woman with whom I was in a relationship for twenty months before that ended. She said she would never leave me because of my disability. Eventually, that is why she left me.
Okay, that's enough of my past. I guess the point is that relationship are hard in the best of conditions. Fibromyalgia is a tricky speed bump and my suggestion is that you are both on the SAME PAGE before making any major life decisions. Getting married is easy - $45, a document and an "I do" - ending that marriage is so much harder. please, consider what Luna01 said.
Welcome I joined just a week ago an I feel alone to I know how u feel no one can believe who I’am today this isn’t me. Before fibro no matter how sick I was I would get up an go now I can’t I have a hard time excepting it an then when you don’t have people who understand what you go through an think aw just get up an move well it’s not that easy but some people just don’t care to know they are to wrapped up in their own self an that’s who I live with ?because I’ve taken care of him an everyone else in my life but now it’s hard enough to take care of me .Hang in there hugs melissa
Hi Stormymyst, WELCOME & CONGRATS on the engagement !! However you said a few things that are true red flags ! struggles in the relationship now will only get worse after you get married, I’m not saying its a lost cause, because you for sure see the flags… Kudo’s for that ! I think it takes a very special person to stay committed in a relationship when one person has a disability… And fibro is without a doubt a disability( the federal government claimed it is last year)
I often think about how I would love to have a husband that loved me enough to take the time to really try and understand what I’m going through. Before you say I do, sit down & read him the spoon theory , print out love letters to normals by Claudia marek , and give it to him. If he says he is willing to learn about this, that is a start, but he needs to understand this has absolutely nothing to do about being lazy.
I worked full time for 24 years, went to school full time, raised two children alone, took care of my house, my parents and everyone else that needed help. I had tons of friends, went horse back riding every week, church, shopping, gardening, and replaced my own toilets. Lol, . Fibro hit … And BAM !! Can’t work, can’t shop, can’t ride, can’t clean my house, and some days can’t get dressed… No it’s not about being lazy…I loved my life… It’s been 3 years and learning to accept my limitations has not been easy, it was way easier to work and be active ( pre- fibro) he needs to understand that most of the time we feel like someone has hijacked our body and we have little control. It’s a daily struggle to just get up and face the day, knowing that tomm may be worse, but we have to have hope it will be better. It has taken great effort to learn what helps and what does not, fibro & frustration go hand in hand. I’m glad you are looking for ways to help him, I think he needs to understand a lot more than he does. You deserve it & so does he !
I think getting him involved with your dr. Visits are a great idea, I would say counseling, but it would have to be with someone that understands fibro… That might be hard … So sad to say that .
I’m sorry you are having such a hard time, are you in a bad flare, or have you not found what works best for you, had I not spent the last 6 months researching how to manage this, I’d for sure be in bed everyday.
Pain management is part of it, as well as diet, exercise, warm pool therapy, massage, stress control, supplements and connecting with others here on LWF!! It’s a full time job managing this !! And still I have very limited energy… But have learned to pick & choose how I use that energy. Having fibro as long as you have, I’m sure you know all this, but perhaps you can share this glimpse of my life with your fiancé.
Hugs & blessings
dee
Thanks yall for all your advice it means a lot…I was married for 10 years and my ex never cared to try to understand what I was going though…so when my soon to be husband said he would read about it and try to make himself aware of it that in it self meant a lot…there is lots of people that aren’t aware of how painful this is…now if he is made aware of fibro and he still don’t believe me then yes that won’t work…I feel my job is to educate people on fibro and I didn’t even understand it until a few years ago…thanks for looking out for me it means a lot
Dear Stormymyst,
Maybe a good route for you and your fiance would be to have an extended engagement, instead of rushing into marriage, so your fiance can see first hand how life will be with you and your illness. Your fiance does need to understand that your body IS NOT under your control, just as Dee said, and it has been hijacked by fibro, just as Dee said. You could explain to him that fibro is an "all over the body" illness, in that ALL of your body is being affected. ALL of your body might hurt, maybe in sections but still, all of it might be in pain.
And you probably will NOT be able to do the normal amount of chores, like all of the housekeeping, etc. Having children will also be more challenging, but not impossible, as many here have kids and find ways to cope. If your fiance truly cares for you, he can learn to compensate for these things by either doing them himself or else hiring someone else to do them. Or bringing in a family member or friend to do them. Because fibro is a life-long thing and you will need extra help due to it.
I think it'd be enormously helpful for you to print out some of the conversations we have about pain and coping with limited physical and emotional capacity. If he sees how many of us are affected (our site has tons of members) and the things we say in regards to the illness, it just may become more real to him. I certainly hope so, as that's a pretty important thing for a finance to understand and accept.
I'm wishing you and him the best of luck and i hope things work out in both of your favor. Although you're ill, you're worthy of being loved. That is one thing that won't change.
Gentlest of hugs,
Petunia