Wednesday, September 29, 2010
Anyway, I love what he said but more imprtantly I love that he supports what my husband says!!
I truly truly hate that Jim does not have a support person!! I know we talk about it, my fibro. I say it like it is some terrible thing that I am afraid to say....fibro, fibro, fibro...there I said it!!! But having another husband that is going thru the same emotions and struggles that he is and being able to vent to that person would be so wonderful!!! There has to be better support out there for our spouses!!!! Not only would it help him but it would help us!!!
I am saying all this and am now going to ask you to go and read the 4th comment that someone left on Jim's post Elephnats, Snapping Turtles and Frogs. I am sure I could cut and paste it over to here and I am sure I used to know how to do all that but for the life of me....can't remember how to do.....!!!! It is really great to be me.....
I couldn't read the comment without crying.....
Friday, September 24, 2010
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:
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?
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”
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.
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.
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
Monday, September 20, 2010
I am such a strong woman, I never realized how strong I really was until people stared telling me how good I look. What I mean by that is, I have recently lost 20 pounds. (10 more to go to my pre marriage weight :) I have been laying out ,( this is my time of the year, summer) so I have a tan. Plus laying out is so relaxing for me, distresses me, and the only time I can focus enough to read. SO BECAUSE I LOOK GOOD, I MUST FEEL GOOD, RIGHT? WRONG!!!!! That is where being a really strong woman comes in! More and more people have been saying that I hide my pain very well....First that is because when I am in alot of pain, I don't go out! People don't see me wake 2 or 3 hours earlier than I have to just to take my pain meds if I have to be somewhere. Then I still have to pray that my energy level will allow me to leave the house. People don't see that when I first wake up sometimes I can't even tell Jim I love him right away or roll over into his arms because my body is fighting against me and I have to fight back just to get it to move! People see me when I want them to see me, for the most part!!!
I was talking to a friend the other day and he was going on about his leg hurting and something else was hurting and I was giving him a hard time because he is "mr healthy" and he said but it has been like this for about a month now and it is really frustrating him and I just chuckled and said, I love you but I am the wrong one to look to for sympathy on this one. I wasn't being ugly, just said imagine the pain being there 24/7! I AM A STRONG WOMAN!!! I DEAL WITH MY PAIN 24 HOURS A DAY 7 DAYS A WEEK AND PEOPLE DON'T EVEN NOTICE, for the most part!!! There are days where I don't leave the house. There are days I leave the house and if it wasn't for Jim, I would never make it.....
I have been dealing with this pain for many years now and trust me, it has changed me in so many ways. I am definitely not the same woman I was when Jim met me, I am always apologizing to him for that too. Then again I am sooooo blessed to have met him and married him because I could NEVER do this alone! The good Lord knew this was to be my life. Boy, I wish he would have clued me in a little bit though....haha!
My pain has made me such an angry, bitter person with less patience than I used to have. I was never known for being on time but now because of my lovely friend called fibro I really fight against that battle. Which is so unfair for Jim when he has to sit around waiting for me. He is usually great about it. There are times it gets to him but that is to be expected. I used to love to smile and now I have frown lines on my face!! THAT REALLY PISSES ME OFF!!!
Jim, is so the man of my dreams, loving, kind, funny, patient, sexy, my best friend in every way! ( he is not perfect though :) and can drive me crazy!!!) I started falling in love with him the first day I met him..........
I hate that I take my pain out on him!!! I snap at him when he doesn't deserve it! I hate that we are late to places because my pain and energy just STOPPED me from getting ready! I hate that I want him to hold me and he can't sometimes. I hate to see the look of pain in his eyes because he wants to take all this away from me and he can't!!
I hate that we fight because of my fibro....yes, MY fibro because I wouldn't want to give it to anyone else!! I WOULD LOVE to get rid of it though!!!!!
I am so very excited to be starting Tia Chi at the first of October with my husband :) I have heard so many good things about it helping fibro and having Jim with me is an extra bonus. Having Jim working out and encouraging me when I don't want to keep going is what keeps me going.
In the past month I have learnt that people are not who they say they are...:( People want you to think they are one way and they try and put on a front, then boom they show their real colors!! I don't have time for people like that in my life......
In the past month I have learnt that I want my own jeep!!! Jim and I saved enough and got us a 2005 Jeep. At first I was a little unsure about it because I know how Jim loves his trucks but now I am so happy he went with the Jeep. I am calling it my "Harley"! Riding around with the top off, the sun on me and the wind in my hair with the music playing, WOW it is AWESOME!! We got a Jeep parts catalog and to me it is like the old Sears Christmas Wish Book. I got thru it page by page....one day I will have my own. For now, Jim is letting me drive it to the beach next week...:)
This past month I have started getting ready for the winter months, I feel kinda like a bear getting ready for hibernation. Last winter was one of the worst of my life.....and I don't want a repeat!!!
Since my reunion, I have been keeping in touch with everyone and we are planning to get together again next year...:)
My pain level has been up and down as usual...my mornings suck!! I hate them!!! The first 2/3 hours of my day take so much out of me.......Most pain levels are done on a scale of 1 - 10, well mine goes up into the 100's sometimes!! My energy level can be nonexistent!!! I am now losing my hair (I don't have alot to begin with) my right wrist is in constant pain. I still have all the fun pains of my legs, ankles, hips, back, shoulders, neck and my head!!!! My IBS still keeps me weighing an extra 5 pounds every day and looking like I am 6 months pregnant. My IC is always there. So yes, my fibro is still with me and not showing any signs of leaving any time soon! O'yea my memory is getting way worse....spelling forget it!!!! All I can say is thank goodness for spell check!!!! And fibro fog IS REAL and living in my brain!!!
Well I am typing this with my eyes half closed so I say good night and sweet dreams.