How Fibro has changed me...

Discussion in 'Fibromyalgia Main Forum' started by Nellie2, Apr 11, 2003.

  1. Nellie2

    Nellie2 New Member

    I have Fibromyalgia and it has changed my life.

    I turned 40 in August of 2002 and in some ways I felt like I turned 80.

    I do not have the energy to drive my children to school, pack lunches, and pick them up. I manage to get them to school and then have to rest for an hour. I have constant muscle spasms in my back and legs. I take medicine and it helps enough for me to do the absolute necessary things for the family and that's it. In the past I could manage a restaurant, teach Sunday school, care for a 3 year old and a 1 year old and still have the energy to write or meet a friend for coffee.

    My daily activities now are limited to getting the kids ready for their day, getting myself cleaned up, driving the kids to and from school, and making meals. Some days I can't even manage that. If I take my kids to a soccer game and go out to eat after I have to spend the whole following day resting.

    I can't remember what day it is anymore. My children have to tell me. My children are 6 years old and 4 years old. My children have to remind me when they need to go get new shoes or clothes because I can't remember to do it. My husband has to ask me if I have paid bills because I can't remember what I'm doing from one minute to the next.

    Fibromyalgia is a cruel, disabling disease. The worst part about it is that looking at a person with Fibromyalgia is just like looking at a person who is in good health. Not only do I suffer from the disease and the "shame" of not being able to do normal household and family duties without help, I also suffer from judgment by people who have no idea what Fibro is like.

    Its time the world realized that although people look normal they suffer greatly. Judging people is so hateful and disappointing. I wish with all my heart that inside I was healthy. I would trade looking normal in an instant if it made it easier to live with Fibromyalgia.
    [This Message was Edited on 04/11/2003]
  2. EllenComstock

    EllenComstock New Member

    to what you are saying and I think that most of us here can, too. Having FM or any disease means a drastic change in your life. I think for myself that accepting this change is one of the hardest things we have to do. Of course we should always keep alive the hope that someday there will be a cure. And in spite of how I feel, I continue to do my exercises, eat well, and do everything else I can that beneficial to my body. When I'm feeling down, I try to remember all the good things in my life, like my wonderful husband. I also listen to music. Sometimes I put on the oldies from the 60's and 70's. Singing along to some of the songs can sometimes help me feel better mentally. Of course we will all have days when we are flaring and nothing really helps. At those times we need to remember that this bad time is only temporary and soon we will feel better. Not our old selves before the disease, but better.

    I've had a hard time with giving up some of the things I used to do. But before I totally give up something, I think to myself if there is another way to do something that I love to do. For example, I love working in the yard. I used to go gun-ho and rake the whole yard. I know that a definite no-no now, so I can rake just a section. My husband bought me some knee pads to wear while I am weeding my flower beds. I used to vacuum and dust the entire house all in one day. Now I divide the house into sections and do a section at a time.

    I think the people here who are raising children while dealing with this disease are amazing people and you need to give yourself credit for this. I can't imagine having children myself. I didn't really have any decision making on whether or not to have children-the endometriosis decided this for me. But maybe in the long run it was for the best.

    Well, sorry this is dragging on so long, but I hope I have helped you some.

    Ellen
  3. Smokeymar

    Smokeymar New Member

    I've had fibro for approximately 6 going on 7 years. At least that's when they told me why I felt so bad. I miss me so much. I used to be a champion Trivial Pursuit player. Now, I can't remember anything. My husband ask me last night why there was a glass of water on the bathroom sink. It was sitting there because I forgot to drink it. I have to write down everything and then I can't find where I wrote it down. People ask me to do something and I forget what I was supposed to do by the time they've left the room. That is the most aggravating thing. Dealing with the pain and tiredness is something else. I go to a prayer group at our church on Tuesday mornings. I have been known to go to sleep while I was praying outloud. It's so embarrasing. I get the nastist looks when I park in a handicap parking place and get out. People look like I shouldn't be there. Even tho I have the handicap license plates. On the rare days I can walk without my cane, they really try to make me feel bad, and of course I do feel bad. Just because they can't see anything wrong with me. They don't know how many pills I just swallowed to be able to drive. Hang in there, things might get better. Who's to say they won't? We just don't know. Please don't leave either because someone corrects you. They will get paid back someday.
    Smokeymar
  4. foreverdream

    foreverdream Guest

    reading your entry is like looking into my own heart in a lot of ways. i am 22 and have had CFS since i was 19. three weeks before i got sick, someone told me that i had more energy than anyone he had met in his entire life. and, to be honest, i did. i worked out three times a week at least, ate healthy, was a leader on campus, and was a 4.0 student. i got a sore throat and within two months i was in a wheelchair and could not do anything for myself. i had to drop out and have been living at home with my parents ever since. my spirit is alive and kickin, my heart is alive and dreaming, but my body just cant do anything. its so frustrating to have so much passion inside and so few ways to release it. and then there is my mind...it just tires so quickly and cant grasp things like it used to. i dont know how to explain it, but the thing that frustrates me so much is that i got no say in the matter. i took care of my body and continue to do so to the best of my ability. but it just doesnt seem to matter much. i dont know, sorry for going on and on. this is the first time ive replied to somebody and i guess i just needed to express myself. all this to say, i feel your frustration to some extent...and i hope one day you can run and play on a playground with your kids...
  5. layinglow

    layinglow New Member

    Nellie--I am 45, and I can totally relate to your post. These disorders can be so frustrating. Those people who judge us are misinformed and uninformed.
    There is really no way anyone could truly understand what we go through, unless they too had been there.

    I know everyone here, myself included are so thankful that we do have this place, where we can be understood and get support. I know there are some here that have had these disorders for 15 years or more---and there probably was no support for them. Imagine the loneliness they felt without anyone to look to for support, and often times couldn't even get the validation of a diagnosis, only ridicule or dismisal.

    I count my blessings that I have a wonderful supportive spouse, family, extended family, and friends. Thank God that I have a FM/CFS Specialists who is my best advocate, and is working his tail off to improve my symptoms. There are so many here--without that kind of support system, who are truly all alone.

    I know these disorders totally rattle our self esteem, but we are still contributing significantly to our family and homes. I think that these disorders can help give us a perspective of whats really valid in life, and what brings about happiness. It's not a clean house, and how many errands we can run.

    Lately, I have found myself really devoting time to the relationships around me---having one of my grandchildren sitting on my lap, and truly listening without interuption to their entire day, or whatever else is on their mind, or spending time with my 12 year old daughter, letting her endlessly put make up on me, style my hair, and accessorize, when in the past, the daily duties would have prevented this. I now sit down with my elderly in-laws who are hurting from Degenerative Disc Disease, and have time just to hear anything they want to talk about.
    I think I have found a blessing in all of this, that helps take away from the pain of disablement.

    I have a 24, 22, 15, and 12 year old. It seems like another life time when they were your children's ages. I missed so much with keeping up with the house, my work, and all the tasks. Now I have a chance to make a real impact in my grandchildren's lives--they are 6,5,4, and 2. Their parents are caught up in the usual running around tasks, and jobs. My grandkiddos can sit on my lap, and read books for hours if they want. Curl my hair, paint my toes---or we just talk and cuddle the hours away---and every 5 minutes or so, I tell them how much I love them, and what special people they are. You know I have seen such a change in them---they even like "taking care of grandma"...lol, it doesn't matter that they spilled half of my tea while bringing it to me, the look of satisfaction in their precious faces, of being the strong one, and being needed, makes the spill---nothing. Now that is quality of life.

    Hugs,
    LL