say something good

Discussion in 'Fibromyalgia Main Forum' started by joysarah, Sep 1, 2003.

  1. joysarah

    joysarah New Member

    Hey everyone. I was diagnosed with fibro about a year ago. I want to say I would want to jump off a bridge if I listened to how bad everyone was suffering/ I never seem to hear anything encouraging. I am here to tell you that things for me with my life with fibro is not that sad. I saw that just about everyone has gone on disability and are miserable. Not true in my case. I am a 50 yr old woman. I have 6 grown kids and 11 grand kids. I just went thru training to be a nurse assitant, it is hard work and I am on my feet for 12 hrs. But I am making it. I exercise and eat as healthy as I can. Before I even knew I had fibro I started to work out because I haad quit smoking 3 yrs ago. My Dr told me the best thing I did was to start working out. That is the one thing that has made it bearable.
    I aam not saying I am pain free, by no means is that true. I will tell you that I work hard not to let the fibro run me. I have IBS and hypothroidism. also arthritis. I am not trying to be a smart butt by no means. I just want to say we can live a great life with this. I also have a great belief in God. I have a great Dr who helps me in anyway he can and he listens.
    I wish all of you the best and I have you all in my prayers. I hope to be a little inspiration. cyea Joy
  2. chickadee

    chickadee New Member

    Fibro is not a one size fits all disorder. And, I'm sorry to say your experience is not an inspiration to me. In fact, it underscores one of my pet peeves - that there are a lot of people who have been told they have fibro that are like the rest of "normals" and really don't have a clue as to what a fibromite really goes through.
    This is not meant to be a personal put down - I'm really glad you haven't had to go through what lots of us have and I hope and pray for you that you never do.
    Peace
  3. kerrymygirl

    kerrymygirl New Member

    Actually for atleast 10 yrs, I ignored the fm/cfids/lyme/major spinal inj.

    Unfortunately ,that I think ,has put me in a permanent flare.
    I try volunteer. Not even reliable there. If I do more than a few hrs. the fatigue.pain, and I know about pain from lots of sports car accid. etc. I will get lost a mile away from home I will be so bad, have to stop over and over to figure out what to do.

    I have a friend with MS works, plays tennis, which I love,then another who cannot get out of wheelchair, or diapers.

    So we cannot lump our pain or fatigue or cog. thinking all in 1 basket. Even heart pt. each 1 is diff.

    I pray you can keep it up and get no worse. That is worth everything if you live atleast a somewhat normal life.

    I am lucky now, once very active athlete,business owner. To lucky to make it to the bathroom or take a shower some days..... I fought disability for yrs. trying to keep going. Living on less than $400 a mo is far from the way I ever expected. 10 yrs ago I could make that in 2hrs.

    I get very hard on myself if I have 1 good day thinking I should be out there working. I am envious when I see people being able to work a normal job. I am to the point with all my college, if I could I would work at McDonalds.

    I am just saying this for those who feel guilty that they can not work....
    [This Message was Edited on 09/02/2003]
  4. Iggy_RN

    Iggy_RN New Member

    thanks for the positive post, I believe things sometimes happen for a reason, I have had positive things come out of this DD. for one, I appreciate life, I sit back to smell the roses, I too am a nurse assistant, going for my RN. It is hard work, but I found that if I take the focus off of myself, I feel better for the most part, yes there have been days when I called in and had to go to ER, and days when I could barely move... but for me, to keep going keeps me feeling better, I just have to start exercising again, I had to stop cuz its so hot out here in Arizona, but anyway,
    I always have to look at the gains of this instead of the losses, for me my gain from this is being a more loving person in this world, God bless, Iggy
    Let me say that what works for one person does and might not work for another... there are different degrees of intensity w/this DD. so some people cannot just simply get out of the house, and I have had my episodes where I could not, just wanted to be sure thats understood!!! Iggy[This Message was Edited on 09/01/2003]
  5. baybe

    baybe New Member

    Great your feeling well. I personally come to this board and chat because I need support with my disease and mine is far enough along that I don't have much good to say. Actually when I felt good enough to work 12 hours a day I wasn't even diagnosed and certainly wasn't at a support network. I didn't come to a support system until I was quite ill and was almost housebound, so guess that might be the difference. If I felt as well as you and had as full a life I wouldn't even be on here.

    I have noticed lately that both on here and especially in chat people have been trying to cut down on the fibro conversation and have this a little more social. I for one have alot of social places in my life. I love having a place I can exchange information and be honest about how I am feeling that is what I imagine a support group to be about. I also am glad to hear when people are doing well. Just don't like to feel scolded about feeling badly with this disease and talking about it. I thank God every day for His Divine guidance in 12 Step Programs and the Support Groups that have sprung from them and that is how I see FibromyalgiaSupport.com as a non-denominational support group.

    Also like to mention that non-degenerative in medical speak merely means it is not fatal. This disease definitely gets worse and the flairs can be worsened. I went through a phase early on where I believed that I should just continue on through the pain because it didn't make a difference, I was wrong. I didn't know the difference between medicalese and laymen's language. These are the types of things I learned from reading about fibro here on this website. It has been a life saver.
    [This Message was Edited on 09/01/2003]
  6. fibrodoll

    fibrodoll New Member



    To do as much as possible, as I can, with what I have right now.

    I realize that from what I read on here, I am very lucky to have what I have. I may end up using a cane or in a wheelchair someday, I don't want to look back and be unhappy.

    So I hug my husband and kids everyday. I say I love you as much as possible.

    I don't think this dx is totally physical, as much as it may be hated, I do think it is also in our heads. Attidude can be so important in how we treat ourselves and others. I don't want to be the people I see at my cash register almost everyday, mad and bitter at a world they cannot change.

    I know it is hard to have a positive attitude when faced with abuse. It's hard to remove yourself from pain and fear. I would hope though that everyone would do thier best to understand and except the outlooks of others. Valerie
  7. Dara

    Dara New Member

    This is a great place to come for information and support.

    It sounds as if you are one of the lucky ones who are still able to work and live a very healthy and fulfilling life. I also used to be able to do that. I have had FM for many years, since childhood actually. My Mother and Grandmother also had it, however it was called Fibrocitis back then. I have worked every day of my life, up until November of 2001. Then my body said STOP. I had pushed and pushed myself until I felt as if I had hit a brick wall, I could not go on any longer. I can no longer work, I can not commit to any routine because I don't know from day to day, or hour to hour, how I am going to be. I would give anything to be able to be back in the routine of working and feeling independent again, not dependent on anyone else.

    Appreciate what you have, because you never know how long you will have it.

    Dara
  8. opalgem

    opalgem New Member

    It is great to hear your story as it gives hope to many. This DD hits people at different extremes in their lives and to some people what you are doing is virtually impossible for some. I too work, but only 7 hrs. a day 5 days a week. I have to sit, stand, sit stand etc. When I get home hubby usually helps me out of my car and into the house where I crash. Some days are better than others. I have had to give up a lot to keep working, but luckily I have a wonderful understanding Husband, son and step children. I hear stories where people with this DD can function way above me and I pat them on the back. I also hear people who break my heart , but I know where they are coming from. I wish I could help each and everyone of them. As long as we share and not condem one another the stories are a great way to learn and support. I don't think that we really know if this DD is degenerative or not. I know I'm worse than a few years ago and activity sends me into some unbelievable flares. We can only do what we can do and try and know our own limitations. Take care and nurture ourselves. I can't imagine myself doing all you are doing, but I can dream it. Count your blessings, you are a very lucky Lady (((hugs))). For the rest of us who can not, that is ok too. No judge, no jury, just lots of love and prayers ((((gentle hugs)))).
  9. Sandyz

    Sandyz New Member

    BUT I had a very active life for 10 years with this like you. I just kept pushing muself along and I also crashed. I am very severe now with the FM. Some of the jobs I had were very hard jobs I shouldn`t have been doing with this. It all has taken its toll on me. I feel very ill now and have a hard time just taking a shower or walking outside to get the mail.

    Still, I am a positve person inspite all this. But when you`re in such pain and so sick its impossible to not complain sometimes. We have to remember that nobody knows how someone else feels, so we shouldn`t critize.
  10. Mikie

    Mikie Moderator

    Unfortunately, your experience is not the norm for people with FMS. Approximately 25 percent are totally disabled, 25 percent are like you and live relatively normal lives, and most everyone else is somewhere in between. I'm sure your take-control attitude and being positive have helped you to do well.

    I am always telling people to keep positive and never give up. I think it can make a tremendous diffence in our lives. That said, however, there are many who are suffering a great deal no matter what they do. As someone above said, "It's not a one-size-fits-all illness." I am very happy for you that you are able to do so well. I am getting better and hope to be doing well myself soon.

    Love, Mikie

  11. fullarmor

    fullarmor New Member

    Maybe it's because I'm in my worst pain ever or because I only got 1 hour of sleep last night, but your post infuriated me to tears. There are a lot of people here to suffer enough to feel suicidal, and your comment about jumping off a bridge was not funny. Up until a few months ago your post could have been mine. I too eat very healthy and exercise. I too am a devout Christian and rely on that to get me thru each day. I think we all do our best to not let the fibro run our lives. But these days I can hardly walk, and there are a lot of people here who are in wheelchairs, and yes, sometimes it does run our lives. I come to this board to be able to vent and discuss how bad I feel without feeling like a freak, and I refuse to come here and feel like i'm not working hard enough at my fibro. We get enough of that in life from family and friends. We all work hard to fight this DD. I truly hope that you never have to suffer like some of us do.
    Nay
  12. wle

    wle New Member

    Mikie was talking about a message or two above. I am not as bad off as a lot of posts I read but def. not as good as your are Joy. I still work every day - at a desk job that is not very stressful. One thing I try to do every day though is to write down at least one thing that I am thankful for. Many times it is the same thing - my husband as I am truly blessed in that department. Today I am thankful that even though it has rained almost the entire last 3 days I am not as achy as I usually am when it rains. I also had a very busy weekend. Which would usually set me back some. So the topamax must be working!!! I am thankful for that. I am thankful for my MOM who turned 90 today and has more energy and better HEALTH than a dozen of us put together on this board, I am thankful that I was able to enjoy my 3 kids, my 4 grandkids, my sister and her husband and various other relatives along with my mom for a couple different birthday celebrations this weekend. I am thankful for this site where I can VENT on bad days and try to share joy on good ones. WLE
  13. Twain1973

    Twain1973 New Member

    I am happy that you are doing so well while coping with FM. I appreciate the importance of a positive attitude, even though I am pessimistic most often when I think about this DD. What upsets me most about the "look on the bright side" people is that often the "positive" comments seem to imply that those of us that are really sick must be doing something wrong to have ended up in our current state. I am tired of being blamed for my poor health. For some reason, people feel that it is acceptable to suggest positive thoughts, healthy diets, and exercise to people with FM as a cure for the illness. I can't imagine anyone would have the nerve to make these suggestions to someone with cancer or any other life altering illnesses.

    We are not to blame for being sick. Sometimes the emotional pian (guilt) of having FM is more difficult to cope with than the physical pain. Having FM does not make me happy. It makes me sad, angry, and frustrated. That does not mean that I don't have many happy things in my life (I am very lucky that I do). I can share my happy times with others. I need this MB to be able to share the side of my life (the FM side) that only other people with FM can understand.

    Amy

  14. wle

    wle New Member

    that because I try to stay positive that I don't have my down days, or that I don't realize the horrible effects this DD has on some of us. Who knows, tomorrow may be my day to vent. We all know that "things" come on us very quickly and without warning with this DD. I will stay positive while I can and hope that I can help others with my positive attitude. But NEVER, NEVER would I tell you that by being positive you will hurt less. That I do not believe in a minute. If you hurt, you hurt. I believe a positive attitude can help you deal with that pain better but it DOES NOT make that pain go away. Any others believe as I do? WLE
  15. kjan9

    kjan9 New Member

    I think with support groups people have the need to connect with someone that share the common denominator of their suffering. To provide comfort, concern and inspiration to your fellows could/should be your purpouse for response.
    You say your doctor listens. A lot of them don't. This is a place where we can be heard and understood. Maybe being treated for your thyroid has made the difference between most of us. Attitude is big to any recovery in any illness, with this illness, being chronic, we do experience down times that slap us in the face. That's enough for me to feel like crying some days. Some of us don't have so much family either.

    sincerely,
    kjan9
  16. joysarah

    joysarah New Member

    Hi Iggy,
    Thanks so much for your words of encouragement. I will say that I was afraid I would not be able to do this job,I will tell you that I have had pretty bad pain. The way my days are scheduled at the hospital, I have time to heal in between shifts.I wanted to ask you if you told who you are working for that you had FM. My Dr told me not to mention it but I wondered if that was right. Maybe you could give me some feedback.
    I also take zoloft, which has helped my anxiety so much. I was taking 3 xanax a day, but now I take one. I also take flexirel for the muscle spasams and trazdone at night to sleep.I have to take loritab too about 1 pill a day, I am very careful with the meds because I don't want to get addicted. what kind of medicine regiment are you on?
    That is really wonderful that you are going to be an RN. I am soon to be 51 and I just don't want to take all the yrs it takes. I do love medicine in any form. I plan on getting into something easier on my body after I work a yr. to pay for the NA traning I recieved.
    thank you again.God Bless you cyea Joy
    [This Message was Edited on 09/08/2003]