Friday, September 24, 2010

elephants, snapping turtles, and tree frogs

Elephants, Snapping Turtles and Frogs

From Lynn’s husband

I know what your thinking, Lynn’s blog and two post in as many days what’s going on

Well I find myself having a desire to write something again on Lynn’s Blog. I keep asking myself why and what am I looking for. Well I have come to the conclusion that I am looking for a way to maybe reach either the women with fibro and or there husbands to let them know two things. If you are a women hopefully when you read what a spouse says about his wife and dealing with this I hope you understand that we are by your side each and every step, or lack of steps each day, we don’t always show it as men but we are trying to stay strong for you and for ourselves. And for the husbands because I want you to know that this is a lonely disease, who do we have to talk to? I mean really how many of us can talk to our hunting buddies, work buddies, family, motorcycle friends, heck even a stranger and explain the pain we as spouses go through when you cant even hold your wife, how it feels when you want to do something and you have to hold back because the one you love is in pain, the guilt you feel when you go alone somewhere because you have to get out and do something or have made a commitment days before and you cant truly enjoy yourself because your worried that your wife is at home in bed hurting and when it is all said and done you are helpless…… I was raised by two great parents that taught me that as the man I am to cherish, protect and love my wife, well with fibro some days there is no way to protect her because I cant see the enemy.

I struggle with the idea of Terminal diseases, there is a bunch out there and I won’t pick or name one but think of them, and now think of the invisible disease what is the difference? I can tell you in my opinion which obviously is skewed Fibro is the worst of the bunch, maybe I would feel differently if Lynn had one of those diseases seeing that we own them once we get them. I have read some interesting articles in my research on fibromyalgia, I am an internet surfer, and I spend a few hours a week looking at the old news and new information trying to find links, ideas and maybe a little insight on what can be done to make my wife feel a bit better. The part that is scary is when you start to really delve deep into the research you find two things, there isn’t much out there in the form of new news, and what is out there isn’t very good. Can anyone tell me how much is being spent on Fibromyalgia research? Not drug developments but actual cash being spent to find the cure and the cause. The medical dictionary defines such:
Terminal illness
Etymology: L, terminalis + ON, illr, bad
An advanced stage of a disease with an unfavorable prognosis and no known cure.

If this is a the true medical definition why hasn’t the medical field defined fibromyalgia as a terminal disease after seeing my wife suffer with this disease I can honestly say it isn’t favorable, and there is no cure. So where is the research money?? Somebody please search it and let me know I can’t find that figure anywhere.

Ok now that I have ranted and have lost my direction back to the elephants, snapping turtles and frogs.
Why did I title this post in such a manor after that positive start?

Elephants:

This is the section on memory, fibro fog and just plain forgetting. I was asked to explain fibro fog to a friend so I took him out drinking. After 8 beers I had a deep conversation with him regarding fibromyalgia and what it is like to have a wife with fibromyalgia, I waited 3 days and then asked him some questions about our conversation, he said he thinks he could remember us talking about it but didn’t recall exactly what was said I told him welcome to a glimpse of fibro fog as I understand it. Well after 4 years of dealing with Lynn and her fibro fog I am convinced fibro fog is worse, we have conversations about the same subject 3 or 4 times within 2 hours some days and then she wonders why I become a snapping turtle, obviously she doesn’t listen to me, obviously she doesn’t care what my opinion is, obviously there really is no point in talking to her any more about said subject. I would bet a paycheck and I only get paid once a month that every husband that has a wife with fibro has had at least one of those thoughts after 4 of the same conversations. How many people have either said or heard the words “I am not losing my mind we didn’t discuss that”


Snapping Turtles:

Lynn alluded to the snapping turtles in her most recent post, she is hurting, she is tired she is in pain, and guess who gets snapped at? Well I know it isn’t really her snapping at me it is the frustration with everything and I am the closest thing to her so the turtle rears its head and SNAP. In the mist of the snap I do my best to try to figure quickly if this is a snap I should argue with or just let it go as it is a reaction to the fibromyalgia. I have found that after about 3 days of a constant flare I also have the snapping turtle syndrome, well what do you expect I am selfish and I want and want and when I can’t and I am having to live with the fibro I can become snappy too it isn’t a one way street. It’s only after the snaps that we sometimes stop to realize that it is just frustration and tiredness from not being able to have what people call a normal life any longer. Snapping turtle syndrome is a very dangerous thing to have in our lives as when we snap we usually say the ugliest meanest things and hurts and does the most damage, the old saying of “sticks and stones will break my bones but names will never hurt me” is the biggest lie we tell kids growing up. Bones heal but the names and the snaps are always remembered. As a spouse and as the person with fibro we sometimes forget that it isn’t us they are snapping at it is just a release of anger and it’s a release of anger directed in the wrong direction most times.


FROGS:

I named this frogs because Lynn is petrified of tree frogs, I mean she will run in a heart beat if she see’s one. Why frogs because frogs are normally creatures that are cute to look at but rarely do we want to reach out and carry one in our hands nor does the frog want us to bother with them. I think fibro has a frog mentality to it for both the of us, and here is what I mean there are days when Lynn doesn’t want me to touch her I don’t mean it in the husband wife sorta way I mean in the just plain out and out I don’t want to be touched, I don’t want my clothes touching me I don’t want your hand touching me I don’t want anything touching me…when she gets like this there is no touching I mean not even kisses they hurt the expel of energy hurts. So how does a husband deal with that, I mean its rejection isn’t it? Or is it? I mean I want to touch I want to kiss I want to hold hands, yes its rejection I know this for a fact it is…. I know its rejection but it isn’t a rejection of me it’s a rejection of I hurt and this will cause more pain. I personally struggle the most with frogs because I need and want the touch of Lynn. And Lynn wants the touch of me this is true torment when you can not freely love your partner any longer, it’s always prefaced with how are you feeling, can I hold you, can I get a kiss. The CAN I gets old it gets in the way it takes away the freedom to just love and touch it takes from us. If you and your spouse struggle with this there isn’t much I can say to be positive here other then we haven’t quit trying and you cant let the fibro beat you here I personally think this is one of the areas in which you should fight the hardest, this is the area I can say that most men struggle with the most, the loss of touch the feeling of being wanted is part of what makes a man a man, we are physical creatures its in our DNA.


Parting Shots:
Wasn’t sure where to end this blog and I don’t know how to spell epilogue. So I will end this with a few parting shots.

Elephants , Snapping Turtles, and tree Frogs, are just that they are ways to an end, they help us put into prospective that we all have them, they may be different animals and they may be different situations but if you are fighting Fibromyalgia you will have them the sooner we realize the animals in our zoo the sooner we can find ways to work with them.

I saw a hat on a lady this summer that said cancer survivor, to all the men and women reading this you may not be a survivor yet but you are surviving, may not seem like it today but everyday you can wear that badge of honor not as a survivor but as someone who is surviving……….

For those of you that have spouse and they need or would like to talk with someone who knows what its like to live with a spouse with this disease feel free to let them know and let lynn know. I dont have the answers but i know the life.



Love you spunky

6 comments:

  1. Jim, THANK YOU! This is such a wonderful post in so many, many ways! I hope you don't mind, I have posted a message on my blog and a link to Lynn-Marie's so that, hopefully, it will reach even more Fibro families that are in need of reading this.

    Your writing is so fun to read and you have a wonderful sense of analogy that make your points clear, delightful, and memorable. You have made some truly thoughtful observations and have offered some valuable insights.

    Please post more often! And, to Lynn-Marie again, I am so happy you are back!

    With fondness and hugs and no snapping (this time, anyway!),

    CJ

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  2. Jim,
    Your words, the analogies are vivid and wonderful! Your point comes across so very clear. You both are wonderful and I'm so glad that you can express yourself and communicate your feelings about a very difficult subject. This disease is tough to deal with but what you've got is worth it!

    I love reading your posts as well and I'm glad Lynn is back!

    Hugs to you both!
    Rose

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  3. Wow. And from a husband. You need to write for all of us with the chronic dieseases. The ones no one can see, but that are devastating, none the less. I have both fibro and primary immune deficiency. PID could kill me one day. Fibro should. We need hats that say Bad Day and Good Day, or OK Day so those around us are forewarned. Thank you for posting.

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  4. Nicely done my friend. Perhaps you will reach the hearts of those who just don't get it, don't quite understand why their daughters-in-law never seem to have as clean a house as some would like, why the fibro sufferer spends so much time in bed, why they hurt or are tired all the time, why they can't remember things that once upon a time they would never have forgotten.

    I, like you and a husband of a wife with fibro and I share your pain, frustration, and occasional shame. I have looked at my own wife and done the best I could do to cover up my misty eyes near to tears at my lack of being able to DO something to make it better; to help in some way. Worse yet is the shame I feel when I prove to be more human than strong fortress and let my own frustrations or fears show. Patience was never my strongest trait and I feel that God is insuring that I learn that virtue even if it comes at a dreadful cost.

    To all you dear ladies out there who are sufferers of this insidious disease; I pray you have bright, sunny days and low humidity. I pray that you all have the love and support of, not just your husbands or significant others, but that you have the love and support of a broad network of family and friends who truly understand what you are going through; someone to laugh and cry with and share the triumphs and downfalls of your day to day.

    There isn't much information out there to depend on. Doctors still can't agree on whether Fibromyalgia is real or not. Why the heck would anyone chose to fake the life thrust upon fibro sufferers just to get attention or to be some kind of malingerer? We must inform each other, uplift each other, pray for each other. The public- at-large may say that fibromyalgia doesn't kill people like cancer, or heart attacks kill people; but those of us who have found ourselves or our loved ones in the cruel grip of this disease can surly attest to the fact that there is death and devastation associated with fibro. It kills without mercy. It kills the spirit. it tortures and cripples the body of the afflicted as surely as it kills the spirit and crushes hope in the close loved one, the person on the pillow next to the wounded. The person that I married hiked, camped, fished, rode motorcycles, worked in the yard, took care of all kinds of details, loved to do research, was tenacious about her passions. The person that I still love just as much as that woman I married suffers physically and emotionally every day (except for the rare "good days"). Those things that she used to do with a passion, pretty much gone and buried.

    Didn't realize that I had a full blown rant cooking. I mostly wanted to stick my head in to say Amen and thank you. Guess I will put away my soap box for now. God Bless you both and all!

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  5. Wow, sooo appreciate this post!

    A couple of things... 1) I'm sure you probably have, but just wanted to see if you've checked out the National Fibro Research Foundation at www.nfra.net. I can't find a dollar figure either, but I like their website. 2) You spelled epilogue correctly.

    This post was perfectly titled, and I love the zoo and animal references. So true. All of it. I'm going to get my hubby to read this. I love it so much when you guys post and interact. Thanks for doing this!!!

    Hang in there and keep pressing on. No giving up.

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  6. wow,I would wish for every woman who suffers this would have an understanding husband like you...mine doesn't understand at all.
    A Fibro Survivor

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