If your spouse doesn't understand FM . . . .

Discussion in 'Fibromyalgia Main Forum' started by LindaLoonyTunes, Jan 4, 2003.

  1. LindaLoonyTunes

    LindaLoonyTunes New Member

    I read this at Cloud's Online (FM support group) and gave it to my husband - it appears to have had an effect on him as he has been much more caring the past few days. I am going to give it to my father in law - my mother in law has rheumatoid arthritis (the crippling kind). I think he needs to read it. I hope the husband who wrote this won't mind my sharing it with all of you.

    This is from a spouse's point of view, they may vary, but this is mine.

    Ladies going through this on your own this may help your family and/or friends understand. When the wife started with the "I don't feel good, and my shoulder hurts, and my knees hurt, and my back hurts," I was a little skeptical at first and also noticed that I was starting to take on more of the every day chores. Trips to the store, taxing the kids here and there, etc, etc. I did this extra work no problem. I could see that she didn't feel good but did she really feel that bad. I kept saying this was all going to pass because all the tests were showing that nothing serious was going on with her and there was no large growth on the side of her face that we could see.

    Well of course it didn't stop and now she is starting to miss work and her RN hours started to drop (well you know). At this point I am still keeping it together but becoming very frustrated. Now I am thinking to myself “when is she going to start doing what she use to.”

    But it just gets worse and now she is missing out on a lot more of the kid's daily activities. What is going on? - nothing is what it used to be and everything is becoming more stressful and is really starting to wear me out.

    I love my wife! I just want it all to be the way it was, why can't she do what she did the day before!!!
    Why cant she remember anything, she forgets to mail the bills and forgets to pick up the kids would go to the store and not even bring back what she went for.
    Well now its time for me to take over everything all the bills and shopping everything. As a man I will say that my wife has always taken care of our finances for the last 19 years and did a very fine job, better than I am. Now I have to stress over all finances too and every time the kids need anything, she always says go talk to your dad, I cant make that decision. I don't feel good leave me alone.... Ok this is it, she has never done that to the kids before. We are now on a very fast downhill slide, I never know what is going to happen from one day to the next.

    OK, does any of this sound familiar? It's now time to think back to when everything was just the way we wanted it; what has changed and why.

    I stop and do some real soul searching, thinking, and a lot of praying.

    I think that somehow over the years I had let our marriage turn into a routine. You know what I mean, everyone has their own part and that was just the way it was. (Remember the daily goodbye and how was your day kiss's - are they still the same).

    The good old routine and when the wife became ill it changed that routine. When this all started I had ask myself did she really feel that bad. I didn't know - I was not sick. I was not in her shoes. Was I more worried about the changes in our lifestyle and ignoring the health changes in my wife? I am truly ashamed of myself, the answer was (YES).

    Is she still the beautiful, caring, and loving woman that I married, the same woman that had given birth to three beautiful baby girls and one very handsome son (YES). Is this the same wife and loving mother that would spend every extra bit of her time with our kids and that loved her job, gardening and oh yes shopping with the kids and walking the mall for hours (NO). This is not like the woman I fell in love with and she really is getting sicker by the day.

    Now what should I do?

    Do I continue to blindly ignore my wife's illness, all the pain and depression? Please don't get me wrong I love my wife and have been helping her a lot, but my stress and aggravation at times is very noticeable.

    I can only imagine what she was going through, not only was she getting sicker, but also I know that my frustration with her at times would make her feel like she was a burden. How is it that sometimes we can be so cold and heartless and not realize it.

    Should I just walk away from everything that I love so much because it is just too much to deal with? Well I don't believe that running away is even an option. But if I am not willing to make a lot of changes, then I should just leave. There is no need in making her more miserable than she already feels.

    Ladies, when it comes to a man trying to keep up with these rapid changes in health and lifestyle, well it's not easy. And I can honestly tell you that it can be very, very frustrating. Just too many changes. I can never plan to do anything like I use to. Life is becoming just a day by day thing, and I just never know what to expect. But then again, neither does she.

    And I think that with all said, this is the true test for the relationship.
    So what's it going to be!! It boils down to only two choices!

    1. Give up and walk away, just try to forget everything. All the good times. all the memories and what it was that drew us together. What if the roll was reversed and I was the one being slowly eaten up with this invisible and very debilitating illness.

    2. I have chosen to take care of the one that has given me so many happy memories. And I will be the first to say that this is not at all easy and has required me to make a lot of changes.

    And there is no grey area here it is all or none! Stress plays a very big part in this illness and I do not need to be adding to the stress that this invisible and very real illness puts her through on a daily basis.

    What are the things that I can do to help with her stress. I think that the first thing is to lose the attitude and then focus on complete and total understanding of what my loved one is going through.

    The ATTITUDE; They notice it and we know it. Do any of you think that if we are understanding only part of the time, that this should be enough?

    Ok lets think about this and say that we are very supporting for a few days here and there. You know what I mean, a smile instead of a frown, a “do you need anything while I'm up”, “no problem I'll make supper tonight.” “do you need any thing while I am at the store”.
    When this is happening it is obvious that she is very thankful of the support and help, she is looking a little bit happier (you know, there that smile is that I so rarely see anymore).

    But then for some unexplainable reason we start with the attitude again. I am not going to talk about the ATTITUDE, we already know exactly what it is. What do you think this emotional roller coaster ride is doing to our very sick loved ones? Remember there is no grey area here, it is all or none. And once again, what if the roll were reversed and I was the one being slowly eaten up with this invisible and very debilitating illness.

    This is how I am trying to help my wife or should I say help myself to help my wife. I put myself in her shoes. I listen when she says that she is hurting. When a new symptom starts in, I will find out as much info as I can about it. It is so very obvious that she is going through a lot of health changes. Is this her fault, did she ask for it, does she deserve to have everything taking away from her?

    Like I said earlier I have taken over the entire household from A to Z. The only way that she is going to get better is to get the rest she needs and no stress.

    Lets see should I go ahead and go to the car show today. I know that one of the kids' needs to be picked up while I'll be gone and the wife does not look like she needs to try to drive across town.

    I will never again put such a material thing before a loved one. Did I have to sell our dirt bikes and trailer? Yep, so what, that's just a material thing. The same as hunting trips, fishing trips, the boat, the cars. These things can be replaced however, my wife cannot. I would much rather have the memories of the joy, happiness and love that only a family can give.

    We are now going to separate the men that are willing to make the changes for their loved ones, from the ones that are unwilling to break the routine or have just given up and I will stop at that.

    Ok we already know what changes we need to make: Never act like she is a burden. Never expect her to be able to do the things she was able to do previously until she feels that she is ready. If you get up to get something for yourself, ask her if she would like anything and stop on your way to give her a kiss.

    Always let her know that you love her. I do not believe that you could ever say "I love you" to a woman too many times. I know that we spouses have all been through the crying spells. Never just walk away, ask her if she needs anything. If she says that she doesn't know what she needs then just go over to her and tell her how much you love her, rub her shoulders or knees, what ever it takes to make her feel a little better. And you know what! We can also do this even if our Loved ones are not sick.

    Do I get the feeling of being completely overwhelmed at times? OH you bet, who wouldn't? We are all human. Sometimes we may need to get some extra help to get through it. Mine is God and my love for my wife and kids. I also go to speak with a counselor or our minister, just whatever it takes to be strong for the whole family. Remember Prayer and Love can conquer all.

    There are days that I get up and I just don't feel right and no matter what I do, my wife is going to notice this and she is going to think its all her fault.

    The first thing you need to do is "and trust me on this one" is go to your wife and just be honest. Tell her that you just don't feel right today - you just feel a little down. So if I seem frustrated and distant at times today PLEASE forgive me, its not you love. I know that you didn't ask for this illness and we will get through it.

    She will be a lot more understanding than you may think because she goes through these different feelings on an hourly basis.

    I am so glad that I made all these changes early on in the illness. There have been so many changes since then and every one of them have actually brought our family so much closer than I could have ever hope for. There is more love in this house then there has ever been and I am happy to say that the love is so strong there's no way it can be missed, a smile can say so much. I could go on and on about the little things that we can do to show that we love our spouse. I could even make a list, but I would have to always be adding to it. Every day is a learning experience and with every day our love should grow. I look at it as never let your love and relationship stop growing - keep going. You can't have one without the other they must grow together.

    And ladies I would like to thank you all for the many years that you have spent taking care of us, our family and our homes. And I promise you that every time I hear another man say that all his wife does is take care of the house and kids, I will let them know what I think.

    One more thing - I don't know where I heard this but at some point I was told that moms can always do it all and if they get sick it was no big deal because they could still keep going. They are all SUPERMOMS! Does anyone know how this got started who said it? I hope this is not in the male genes because I can not remember where this memory came from.

    If anyone would like to read all the info that I have on my wife's illness and the info that I have on Fibro and CFS, let me know. But it is very long with lots of links and it will take up 4 e-mails.

    Thank you for your time

  2. LindaLoonyTunes

    LindaLoonyTunes New Member