Having Fibro has changed me and I want to be accepted for me

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, Aug 20, 2006.

  1. rosemarie

    rosemarie Member

    For some time now I have been reading the posts and thinking of how the things we each go through are connected in so many ways.

    I just was reading the post about do you get support that you need. NO way. I will never get it . As I have had to look at this from my families point of view.

    All the years of my marriage now going on 26 years in Sept. 6th.
    I have had some thing that has always caused me pain and I was taking pain pills for so long before I ever heard of fibro.

    I had headaches, bad cramps, surgeries, back pain , injuries, kidney infections that would knock me down from the pain that went with it. So all of my girls lives I , their Mother . have been taking some form of a pain pill.

    It does not matter the stregnth of the pain med but the general fact that I have been taking pain meds for 26 years. And my daughters remember that.

    They remember me having headaches and period problems and lapersocpoies to find out why I had pelvic pain. And finally a hyesterctomy that answered some of the reasons I had the pain and it proved that there was A REAL REASON THAT I NEEDED TO BE ON PAIN PILLS.

    But still I had some pain I would go for weeks and not have pain and then it would hit with a tension headache and once again I would be taking some T3's for it. Or Foreciet , and some others that I don't remember what they were.

    As I was reading all I could find was no one really has the support that we really so badly need. And I think I really understand why we will not ever get it.

    You all know the old saying about the only way to know some one is to walk a mile in their shoe's. Well guess what there is NO ONE that is going to walk a mile in our shoes.

    They will tell us that we are making a big deal out of nothing, or that we take too many pain meds for pain that can't be seen, And we limp and ache and sleep to much and of course it is all due to us taking pain meds even those who take non narcoitc pain meds. We rely on them and not our family.

    I have tried to sit my family down and have them read the letter to Normals and they don't want to read it. It is a bucnch of BS as this is not a " REAL DISEASE" Like cancer , or phemumonia, or it is not like a broken bone that causes pain .

    NO one wants to really stop and look at them selves and really watch us, as we go about our lives. WE limp, tripp, walk solwer than snails, we are always tired, we ache, we will sit on the couch for just a minute to rest and before you know it we are out for the count and wake up startled not knowing how long we have slept.

    And then at least for me I can't go to sleep at night after a evening nap.

    Not one of my family members want to feel what I feel, to ache when I move, to have my feet feel like I am walking on broken glass when I stand up in the morning. OR just standing for a minute and I will try to walk but my legs don't want to move.

    I know that this sounds so mean but some days I just wish that for once our families could have this for a week or two.

    To see that we are not making up how we feel, the fatique we live with , the lack of sleep, the PAIN we live with each day of our lives. I want them to feel it and to know that they are going to feel like this for ever and it will change their lives.

    They will lose so much of who they are and not understand why they feel like death warmed over. ]
    I don't have the words to really say that I want them to live with fibro ,and my degenerative disc disease, spinal stenosis, facet syndorme, arthritis in my knees and wrist, pain in my tail bone, buldging dics, legs that go numb and when you try to stand up you can't stand at all.]

    I want them to feel what it is like to have such a HUGE chagne in your life that has come on so fast for some and for others it has been creeping here slowly. What I jsut said is about me not everyone. We all have some of the same conditionss but not all of them we are still indivduals and would like to have your acceptacne all the time.

    How would it be if one morning your husband woke up with pain that he didn't know why he had it. And it was so bad that each time he moved it only got worse. And when he went to work becaues No REAL MAN is going to let a " LITTLE PAIN" stop him from his job and working..

    But as his day wears on the pain is worse and he can't stand it any more..... So finally he will come home and whine that some thing terriable is wrong with him and he is going to lay down and rest for the rest of the night. And as he sleeps his legs jummp hard enough to make him kick you and wake you up wit hhis tossing adn turing as he can't find a comforatable spot to sleep on.

    And no matter what he does he hurts. till finally he will go to the doctor who will look at him and tell him tat it is all in his head and that there is NOTHING that he can or is willing to give him for this pain that is just getting worse and he is notable to do his job like he has done in the past.

    Does that sound familar to you? He is going to tell you that this is different than what you have it is some thing new that no one has heard of. and he is not making it up.

    But neigher are we. WE all have days where moving his the hardest ting we have to do. WE don't sleep good and we fall alseep at the most in apporite lime frame. But because we are the MOM's we should be able to DEALwith this pain as we always have done so in the past.

    OUr families don't understand taht our lives haev changed adn the things that we loved to do now we are not able to do them and contraly to the pharse I get , " IF you would just eat better and exercise more and lose some weight we would all feel better and could throw our pain meds away and we wouldd be "CURED" Would we?

    NO we would not be cured as this has no cure yet and as we go about our lives we have become close to the forums as we have found someone who really does undestnad the aches , pains and lasck of sleep that we go through all the time.

    I tried to explain to my hubby why I was not going to walk around the county fair this year. It hurts me too much to be walking so far, my knees would be acheing and hurting me and as I would get tired I need to rest , to awalk slower and to sit down and just rest awhile.

    I seee that ther is NO ONE that is willing to feel liek we do. They are scared of that this fibro stuff could really be true and that they could get it to as they age and then what would they do as they have been telling us for years that we are faking it and seeing our doctors too mcuh adn we take too mcuh pain meds all the time.

    And now it is them who is in pain and needs pain meds to ease their new found pain. Are they really cscared taht this could happen to them and then they would not be able to do the things that they have liked to doall the time, NO fishing, NO hunting as the walking is to far and when your hunting a deer and you get it , you will find that that small deer is TEN times heaveier than it should be. And they don't know why...?

    They aev watched us chage over the past years adn should know that it is so painfull at times that just moving to get out of bed is so hard that I will just stay in bd formost of the day.

    Have you asksed them to llook at you and see how you have changed adn have lost the ability to do all that you once did. NO longer are you super mom who can plan the vacation and get everyone packed up including your hugband and get all that is nessary

    And now you " claim that you have this misterious disease that prevents you from doing the smallest things around your house.

    When you were doing it less than a year ago. So what it up? I know you just don't want anyone to have any fun any more and you make the kids help with dinner and dishes and you need more sleep.

    I found out that just because I haev a dx things don't change. AT all. RIght now my hubby is wondering just what is it that my doctor does besides prescribes me narcoitic pain pills and nothing more. I asked him what was he to make me do?

    HE said to exercise more harder than before Lose some weight, don't juts lay around, and it is all in your head that your really ftiqued all the time.

    I sohuld let my doctor stab me and fill me up with steriods to that later in my life I can get celluitis from the steroids that I have been on for years to help ease the pain , and suddenly I find that becasue I have taken pregnazone for some time now thatmy immunedsystem is getting lower and does not work like it once did.

    Hetells me why don't you take the over the counter stuff and I have told him that they are worse on your body than the Narcoitcs that I am taking.

    If you stop and look at all the people who take the tyenyol and advil they are finding that they are taking far more than is good for them and it is doing some real damge on your liver.

    Just to night I got rid of some narcoitc pain meds NOt because they had expired in their dates but that I have too many of them and I don't want to look like I am hoarding them for some time in the furure.

    I dumped over 60 pills as I don't want to feel like I am stock piling them for the future dates when I am not and I am not taking my meds like I should bd doing.

    We here all have a part of out lives that are connected to each other.

    WE all know that when we take the kids ooooor the grandbabies to the Zoo for a all day outing that we are really going to PAY FOR IT LATER ON and we will be in our beds praying that some one will make the deep pain in our bones go away. And then we know that because of what we over did it we are going to FLARE,.

    Try to explain that one work "FLARE" What does it mean to you? How does your flares hit you? are you in more pain and can'tget out of bed? YOU can't do the things you nroamlluy do like take care of your fmaily? and you need extra help.Now does your other half understand this "FLARE" AND WAHT THE REACTIONS ARE TO YOUR YOUR FLARE?

    I would bet money that even the mose understanding husband would not understand why your laying in bed and yourkids are hungrey and want to eat and need to have baths and go to bed. And your husand will come in to your bedrooom and sweetly tell you that you really NEED to get up onw and fix dinner as he is hungry.

    Does he offer to help fix it? NO he is reading the paper the sports section and you are left to fix dinner ,,famke sure that every one eats& does not fiiight and then you have to clean up the kitchen &then the kids and then your hubby looks at you in that romantic way and you know that he is not going ot ahve any romance that night.

    Sso as I start to summerize this post. I see that we all have the same kind of life. WE have pain and take meds to help it and every one things that as soon as you take a "Narcoitc Pain PILL YO are aaauto matticly ADDICTED TO IT" .

    Now you will be doing everything just so that you ca score on oyour apin meds becasue they will make you "HIGH" Do yours?MINe don't and I have been on them for a few years now & the never have given me a high...

    Do you see it that we are the in the same boat and the people who love us the most are not wiling to walk a mile in out shoes to see just how much we go through and how much intence pain we have to deal with each day of our lives.

    Everyone has a oppinion aobut fibro and for most it is some thing that is in our minds and we are all depressed all the time and some of us are not depressed just exhusted from the pain we have. Everyone you know has a "CURE" orcomment that is going to bring back your old life where you could do all that you liked to do feel like you uesed to do.

    But the sad thing is that they don't get it , Waht we have & how we feel & react to it.NO two people react to fibro , CFISDS, CMp and the rest of the syndormes in the same way.

    Now I don't want every one to understand me just my family and even them I don't want them to have to go waht I go thoutgh each& evryday.

    I want to be like I used to be but that its not going to happen any time soon so I am aasking this simple question to my friends, family, parents, kids, boss's and all who know me... I have fibro and it has changed me and while I may look the same way I am not. I LIve and ake upevery day in pain.

    MY life is not the same and it will never be the same aggain. So what I am asking is to please take time and learnmore about this Fibro stuff and to please just accept me for who I am now... And let that person I was go as she is gone adn is not comming back.

    Please love me for the person I am now, the one that loves you uncontionally and always will so can't you do the same thing for me?

    I want to be happy and be able to do some tings once again but it is going to take me longer to walk and get around and just move. So please take it oit slower when your with me.
    Please I ask just accept me uncontidionally and love me for who I am now not who I once was? Is that too mcuh to ask?

    WE as fibromites feel a conection that we uunderstand each other and we accept each other with out telling each other how to change our lives to feel better.

    Now what I need is for my family to understand how I am feeling and that the pain is real for me. I still wish that they each could walk in my shoes and feel the aches and pains that I have to live with each and every day. I want them to FEEL THIS and how it makes me FEEL. I need them to be more understanding and just accept me for me. Let go the the MOM that was here as she is not here any more.

    I changed so much from having fibro and having to live with chronic pain all the time. How I wish that the family and friends would spend time in my body and feel this way. I do want them to understand that chronic pain hurts all the time it wears you out and makes you short tempered.It is my family that I want to WALK IN MY SHOES AS then they may UNDRESTAND HOW I FEEL BETTER.

    Thanks for your help and your understanding.
    Rosemarie[This Message was Edited on 08/21/2006]
  2. puddymaws

    puddymaws New Member

    I'm with you Rosemary, I don't need to borrow your shoes, mine are the same size. Remember . . . you are never alone.

    Puddy. X