Please Help Me To Help My Husband

Discussion in 'Fibromyalgia Main Forum' started by MamaDove, Oct 21, 2006.

  1. MamaDove

    MamaDove New Member

    Hi everyone,

    I need some words of wisdom here...Please...

    I am going to try to give just the major points here in hopes you will understand what I am dealing with...

    Hubby and I have been together for 21 years, to say he is the love of my life would be an understatement...He is my whole world, and I his...

    After a year of being together, I just 19, he had his first seizure while we were driving to get breakfast one Sunday.

    After many hours he came around and told the docs at the ER that he had these before, while in the military...He was eventually diagnosed with epilepsy and also found to have something strange in his frontal lobe...Like many of us, misdiagnosed, mistreated and misunderstood, even to this day...

    We have struggled through these years never finding the exact cause but through all my research find that certain foods are triggers, so we avoid them, but the 'monster' is still there, it's always there...I then became ill, my first trigger was in 1993 (you can see my laundry list in my profile) and then along with everything else, our baby boy (choco lab) became epileptic June of 2000...Can you hear me screaming "It's a F&^#$n nightmare!"...

    We lost our boy 18 months ago today and we spent the day planting tulips in his memorial garden...I didn't cry once (that he saw) nor was I in total despair from the pain (which I usually am) so for the life of me I couldn't understand why he kept saying 'are you ok?", 'please don't bend like that", "I got it", 'don't lift that, I got it", etc....Constantly!!!!!!!

    I finally realized that he does this all the time...

    He recently was advised to see someone at the VA about some issues he is having...Doc met with him for an hour...He spent 55 minutes telling him about ME!!! Once he told the doctor that I had UC/Crohn's, they both cried (the docs son was just diagnosed)...He diagnosed him with PTSD, from the military and begged him to think more clearly and ONLY do things that interest him...He believes that meds will only exaserbate and/or cover up the issues and he wants him to live as normally as possible...WITHOUT DRUGS!!! I love this doctor!!!

    He told me some of what he told the doctor and the line that stood out the most was "MY WIFE IS SICK AND I CAN'T HELP HER"... I had chills when I heard that...

    I have always been nervous since I witnessed his first seizure and the many that have come since then...For me, it's the one thing that shakes the foundation of my world...
    Hubby has told me so many times to stop worrying, what will be will be and don't think about it constantly...He stopped saying all those after our Moose got sick...Then hubby got scared for me and must have realized that all this worry was not going away any time soon...He helps me whenever I ask but you can tell he is sooooooooooo tired of this...I am always in pain, even though I hide it, he knows how bad I am at any given time...Docs don't do squat for me, in fact, they have all made me worse so now I just don't go...I come here for my medical advice...tehe

    So now you get the gest of it...I know he is worried about me like I have worried about him all these years and I can see it aging him as the days go by...It wasn't healthy for me and it's esp. not for him...He really can't handle stress at all, he goes the other way...He was raised with the "get over it" attitude and it always worked for him (on the outside) but you know it eats you up on the inside...

    Aside from not letting him know my every little ache and pain, my struggles with getting SSDI, my constant anxiety over all our health problems and what the future may bring, what else can I do to decrease his 'load' from MY illnesses.

    We have been through so much CRAP, it's good for two lifetimes, believe me...Over and Over, neverending CRAP!!!
    We try to get out every now and then and have some fun BUT we all know the issues that always prevail...You can have the best of intentions and make plans and BAM...The monsters roar up and NO FUN FOR YOU TODAY!!!

    Are there any of you out there who have dealt with this successfully and have some words of wisdom for a youngster like me trying to make the best of the years we have left together...Our family is estranged (and strange, that's why they're estranged) so no help there, only more misery...I am sure we could both benefit from 'talking' with someone. You could see the load was lifted some after his last 'chat'...But it took me 21 years to get him to go...I think he would go frequently if it were that same doc...They are going to send him for other testing to so as not to miss anything...this doc really feels for him...

    OMG, don't beat me, I just realized how long this had gotten...Anyone for novels? Geez, I am going to start writing my own book out of these posts...tehe

    Well, I'm off (literally) for now...I will be back in the morning to see what everyone is up to...It's been a hard day (on the heart), my son gone a year and a half, my grandpa would have been 99 today and we just lost hubby's Gram on Tuesday, her service was today...So much misery, too long of a life...

    Love to all~Alicia
  2. homesheba

    homesheba New Member

    how i wish i did have the wisdom
    to be able to say something to help you both,
    and even to be able to help you physically,
    as i know it is so hard to do things without
    letting on that you are in pain to your husband..
    i will surely pray for you both.
    i dont know why things are so hard
    so much of the time.
    but i am happy for the fact
    that you have such a loving relationship.
    i know that you are a blessing
    to eachother thru these trials.
    just reading about
    your love for eachother-
    made me smile.:)
  3. Marta608

    Marta608 Member

    Alicia, I loved your post not, of course, due to the message and angst written there, but because of your innate love for your husband, his for you and your good sense. And in spite of what you've been through, I'm so happy for you that you've been through it together, not alone. During all your trials, and there have been many, you've been there for each other! Can you each rest somewhat in the wonder of that blessing in your life? That you have each other? I'm certain that you're saying right now Oh, we do! but could you do it more? Could you nurture an attitude of appreciation that would eventually overcome the worry?

    You can't stop him from worrying about you - or you from worrying about him - without putting something else in its place. How about (and I'm tired and not saying this well, so please bear with me) taking every minute on its own merit, being thankful for each other and the love you share, and just simply finding joy there.

    Meanwhile, if you could find a good counselor, you'd both no doubt benefit. It's worth a try, right?

    Hugs to you both. I hope your rest was a good one and that when you read this reply and others in the morning, you will have left some of the pain and worry behind you.


  4. maedaze

    maedaze New Member

    I wish i had some advice or answers for you too. but i don't understand why 'crap' just keeps getting flung at some people and not others - some days it just seems a never ending uphill battle.

    I hope you wake up to a much better day today.. I know how you feel about your animals, i too feel the same way. My dear old lady (staffie cross) died 2 yrs ago this month and i miss her dreadfully. But i know she'll be there when i go and so will my precious cats and that gives me comfort.

    (((hugs))) maedaze.
  5. MamaDove

    MamaDove New Member

    First, thank you all for thinking enough about my post to reply...

    I awoke with a new attitude as I always try to do and the first thing I get is an email from a dear friend telling me she lost yet another baby...Didn't know she was pregnant and when she found out, she also found out it was no longer there...She just went through this two months ago...I am the only one she told this time...How awful!!!

    Thank you all for commenting on how wonderful my hubby is, he is, but he does have his moments...tehe

    homesheba~I see you posted something similar to mine the same time lastnite...It's hard no matter what your situation is, isn't it?

    Marta~I am thankful and we need to spend more time 'appreciating' eachother...we usually need a good kick in the rear to remember what we have is something many never find...I am grateful!!! It does come with a price tho...Lots of worry!!! And I'm afraid the more we love, the more we feel the loss as well...Grief is very hard on a marriage...Not just grieving a death but grieving the loss of our health...We have alot on our plates at any given time...But yes, I am grateful...

    Thank you all for helping me and giving me a 'boost' this morning...I did awaken with a smile on my face, that counts for something...

    Hope your day is wonderful for all of you...It is sunny and cool this morning and hubby just started a fire...I guess it's off for me to start breakfast...It's gonna be a good day!!!

    Love to all!!!

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