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Tschmo posted:
Hello, I was diagnosed with fibro about 4 months ago. I started taking Lyrica about 2 months ago. I can tell when I get up in the mornings if its going to be a good or bad day. I am learning to recognize the signs of when I can and can't do things. My problem is my husband...he gets irritated if I say I'm having a bad day that day or if I tell him I ache. He doesn't seem to believe that I have something real. I have shown him the articles on fibro and tried to talk to him about it. I get frustrated as I'm not a lazy person and work out on good days and I work full time. I get the feeling he thinks I'm trying to get out of doing things and/or doesn't believe I hurt. Has anyone else had to deal with a partner that doesn't seem to believe? I love my husband dearly but feel no support here.
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missist responded:
Hi so sorry to hear that. I think it is common--although I'm new on this website so don't know many people to compare with. I've had this for almost 30 years and there is almost nobody in my family I can really talk to about things without feeling just that way. It is what it is.

In time, my husband got a little better, and I think a few others are as well--but this is a lonely thing.

Hopefully someone here has some good advice for you--I'll be listening cuz I'd love to hear it.

For me, it seems better if I can try not to talk about it, ask for help where I need it. Still I have brought the topic up with family but its pretty obviously not a good topic for anyone.

I wonder how many people with fibro wish they had something else-- cuz there does seem to be a very unfair stigma.
 
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franr responded:
Dear Tschmo
I was diagnosed 20 years ago and back then there was little known about fibro. I took my husband back then to fibromylgia support group meetings. This really opened his eyes and gave him a better understanding of the disease.Some of the stories were so much worse than my own. So if he would agree maybe he will go to a meeting. Good luck and keep us informed. Fran
 
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dollbug responded:
Hello Tschmo and welcome....MiMi in NC....dealing with the wrath of the dragon, aka FM is a very challenging journey each and every day for a lot of us. Actually I can honestly say that I do NOT think anyone actually understands what we, FMers, are faced with....unless of course you have it. For the most part we, FMers, do NOT look sick. We look *normal*. FM is not like most kinds of illnesses. A lot of us have chronic fatigue and even other multiple health issues as well. We have pain and we get tired, but we still do not *fit being sick*.

I would suggest that you tell him to do some research on FM and just how it can affect people. Sometimes I think people believe that we just *make up feeling bad*. But to me that doesn't even make any sense at all.

I use to be able to do so much more than I can now. I use to love to shop until I dropped and keep us with everything and still have energy to burn. There are days now when I do not even feel up to taking a shower. I no longer shop, unless I just have to. I no longer wear make up because it irritates my skin and I do not wear jewelry since it bothers me as well.

I hope that you are able to share things with your DH and get him to understand. I think it is great that you can still work full time and work out on good days.

I would encourage you to be sure and ask your doctor to check your Vitamin D level....which is important to a lot of people these days.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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Tschmo replied to missist's response:
Thank you for your reply. I too am finding this to be a lonely disease. I am hoping that with time my husband also will become more understanding. I try really hard to not complain and just get through my days. I am happy to now put a reason on why I feel so bad, but get very frustrated sometimes with it. I wish you well with feeling good!!
 
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Tschmo replied to franr's response:
Thank you, I will look to see if there is a group in my area.
 
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Tschmo replied to dollbug's response:
Thank you for responding to me. You are correct life can be very challenging now. Sometimes just to get through a day. I have moments where I have to really force myself to do things when there is no energy in me to do, or I hurt so bad I just don't want to do. I am very blessed to have a great doctor who ran a through serious of tests and vitamin D was checked. It was found to be low and I do feel better now that I am taking it. I have been taking Lyrica and that too has helped. I am finding this is a day at a time or sometimes moment to moment illness. I will continue to do more research and appreciate all the info I can get. You too take care and best of luck to you. May we not concede to the horrible forces of the wrath of the dragon!!
 
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Anon_10089 replied to Tschmo's response:
Hello and sorry for what you're going through. The board is quieter now that it has in times past. The topic you brought up is a hot one and I thought you might want to search through some old posts to read more comments.

There can be hope. It seems like some spouses never understand or even try. But many spouses who are a little skeptical at first will come around. We are baffled and frustrated by FM so it follows that they will be too!

This is a great place for support. This is the only place many people here get support so come back often!
 
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missist replied to Anon_10089's response:
If I were you-- advice-- cultivate an interest -- for me gardening is a nice one- then find a friend that shares it. I pray-- that would help--if you are someone who is spiritual. after years, I have a friend who not only loves gardening and thrift shopping-- she has the same diagnosis and we both have long years in marriages we've been the emotional givers in. We're OK provided for--but as you know, money is not everything--it does help--but friends are good to have outside the home-- so anyhow she and I are getting together monday and that gives me something to look forward to. a small start to a garden is a big mood lifter.
 
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jillylin responded:
Hi,
I am sorry you are not getting support where you really need it. My husband believes I have Fibro but he just doesn't understand or choose to understand the impact on me. If I say I am having a bad day and am in pain, then he is in more pain. One thing that did make an impact on him was getting him to read The Spoons theory.
Hugs
Jilly in the UK
 
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debrabrooks1960 responded:
Dear Tschmo,
I am sorry to hear about your husband. I had the same experience with my husband. He seemed to understand at first, but as time went on he started getting impatient with me. He would tell me I was too delicate. He started making fun of me. Then he found himself an online girlfriend that is 33 years old. So now we are getting a divorce. I am so much happier now. It is so much better being on my own. I now have so much less stress now.

I am not saying you need to leave your husband at all. I am just saying sometimes the worst thing that you think might happen can turn out to be the best thing for you. Education for your husband is the best thing. Maybe have your FM doctor talk to him. If he really loves you he will get it one day. Just remember to take good care of yourself in the mean time. I will pray for you and your husband. I wish only the best for you.

Debbie
Your not over the hill until you are under the hill.
 
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agrapina replied to debrabrooks1960's response:
It seems that some level of denial is necessary for husbands to be able to deal with chronic illness. It's scary for them too or, unfortunately, it's terribly inconvenient.

I know mine would let me work until I dropped without intervening.
It's up to you to set boundaries and keep them, if explanations are going nowhere.
Where oh where are those knights in shining armor? In a lot of cases they are only in fairy tales which have nothing to do with
everyday horrible daily pain and exhaustion.
 
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missist replied to agrapina's response:
Knights in shining armor. ah yes.
I have to admit mine works very hard, earns a good income and does many things himself rather than pay someone--work on cars, the house, etc.

I'm glad he does these things--but I also know he will never really be able to understand that doing the dishes requires a rest afterward!

His mom is also a physically strong person who is never ill & always busy so most likely he has nothing to compare me to.

All that makes it tough. I think for me believing this to be in God's plan for me--for my good somehow-- has helped. I figure it is not the worst thing-- its a life sentence not a death sentence.
 
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dollbug replied to agrapina's response:
Hello Agrapina.....I had to respond to your reply about the *where oh where are those knights in shining armor"? I think there are a lot of things in life that are just illusions....or so it seems. I know that as I grew up I had a very different view of life and what it should/was/is supposed to be. As time went on I decided that actually there is *nothing as it seems*.....but I have also found out that *life is what you make it as well*.

My DH is a cancer survivor and we have been through a lot. There was a time when no one knew whether or not he would survive. I thought that him being this sick that he would understand what I was dealing with more so than someone who has never been there done that. The doctors told him he would never be strong enough to work again. He proved them wrong. He is a very strong person though. I do think that one reason people do not quite understand us FMers is the reason that we do NOT LOOK SICK....my husband looked like *death warmed over*. He lost 90 pounds. His entire body sunk in. He gradually got better and began to improve the way he looked as well.

I often wonder if people just think that we like dealing with the wrath of the dragon, aka FM and all of the challenges that we have to face. I truly think that no one can fully understand this illness unless they experience it. I think this is why we all enjoyed Dr. P so much....because he truly knew what we faced along our journey of life each day.

I do think that a lot of people think life should be like a fairy tale or Hollywood life.....where nothing is as it seems.

Take care and I hope you have a good week.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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agrapina replied to dollbug's response:
Hi Dollbug. I totally agree with you. I don't think I even came close to making myself clear. I am old enough to remember the old American dream, like from the 50s, lol, when women thought that to be happy one should find a good mate and have 2 1/2 children and maybe someday a house in the suburbs.

Although I was well-educated and sought to break out from that mold, I was somewhat affected by it anyway.
What I really wanted to say is that it's so often our own projections on another person that we see, rather than who it is they really are. It's merely human that we do this and men do it as well.

I don't believe we should be putting men in that shining knight position either because they are just humans struggling with the same issues as we do.

WE should be responsible for our own happiness. Once we realize this, it is easier to take responsibility for our choices, setting boundaries, etc.
What I was ruing in my first post was not that men have let us down but rather that because of role-playing expectations of our culture, we get trapped into thinking of 'woulds' and 'shoulds' in thinking there might even be such a thing as a knight in shining armor. I was confessing that I have fallen into this pitfall a few times until I finally 'grew up'.

Life is so hard sometimes and it is so tempting to want to lean all over someone or just collapse into their arms and say,
"You take care of everything."

I guess I believe one reason that we are here is to help each other. If we would just follow The Golden Rule nobody would need superheroes anyway.

Hugs,
A.


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