Need some support

Discussion in 'Fibromyalgia Main Forum' started by shoshi68, Jul 24, 2003.

  1. shoshi68

    shoshi68 New Member

    Yesterday, I had to assert my rights with disability. That took a lot out of me. Then, after much effort I had to give up my 5yo spot in a good private school because I can't work and have no confidence that I will be able to any time soon. That was really tough. I really had to work to get that spot. To top it all off, my father has decided to disregard my existance, because I couldn't get to a family gathering due to the fatigue and pain- and loosing my son's place in private school. Couldn't sleep last night and I am camp Mom- so no sleep anytime soon. I am so angry that FM has made me feel so old, I'm only 34. Looking for a bit of support from people who know.

    Thanks,
    Shoshi
  2. shoshi68

    shoshi68 New Member

    Beck,

    thanks, I'm new here and appreciate all I am finding. I will come often. My symptoms are what they are, but is sure nice to not feel like a freak!

    All the best,
    Shoshi
  3. JP

    JP New Member

    Hello Shoshi,

    Welcome and thank you for asking for support. I am so sorry that you had to give up private school for your son. I know how important it is to feel good about your child's educational environment. This is a difficult syndrome to live with and it does create multiple ramifications as a result.

    As for disability, I know this frustration too well. I will receive my last disability check this Saturday and I am waiting to hear from SSD. I don't have the energy to be frightened about the future. I am well aware that the cash flow may stop soon and have no idea what I will do. I have been a homeowner for 23 years and it would be horrible to lose my home. Anyway, I can relate to your frustrations.

    I'm sorry about the emotional pain around your Dad. I guess that no one can get this experience without living it...I tend to avoid crowds due to the symptoms I experience. I am going to visit my family next week. I need to request some additional Ativan to keep from having panic attacks. And I have a very loving supportive family...just too much family.

    I am 42, soon to be 43. I have not been well for sometime now. I have been out of work since 12/01. I have other health conditions. My FM came on as a result of another disease process. I think my most painful experience was working so hard to get to medical school and then being forced to give up my dream due to my health. I guess I am sharing all of this to let you know that you are in good company with a more than understanding community.

    On a more positive note, I believe that there are gifts with illness, IMHO. They are hard to see at times and I do see them. I am now forced to seek balance in all that I do. The longer I live with this illness, the more I learn that I have some control over the quality of my life. I have also gained a compassionate and loving heart. At some point, I know that I will be able to contibute more. I am also learning to love myself. I can also do things that I thought I had lost forever, like cleaning my home. I have learned that I can clean my home bit by bit...just not in one setting.

    Have you thought of home schooling your son?? Maybe there is another 5 year old or two in your neighborhood that you could include in your home schooling. There are also playgroups for home school children, to meet their social needs. Anyway, just a thought.

    Hang in there and keep coming back. There is a lot of support here.

    Take care,
    Jan
  4. MiahRoo

    MiahRoo New Member

    ...especially dealing with family and friends. People that have not experienced the symptoms that we struggle with everyday have no clue at all how horrific everyday life can be for us. Every day tends to be a struggle, at least that's what my life is like right now. Struggling to get out of bed in the morning, it's a struggle to walk for the first few hours after I wake, it's a struggle to keep myself going through the day because of the pain and fatigue, it's a struggle to deal with my family at times because they simply do not understand, it's an emotional struggle for me to take my pain meds because sometimes I just can't help worrying about what others think of me.

    But then there are those good moments...those amazing moments that make life so worthwhile. My 3 year old nephew looking up at me and saying "I love you as big as the world!" without me saying it first. When he can tell that I don't feel well no matter how hard I'm trying to play and he says "Lets sit down and rest and talk about you and me." (That'll melt anyone's heart!) When my fiance is looking at me from across the room and all I see in his eyes is pure love. When my cats decide to entertain me and seem to put on a whole production of clumsy fighting, flipping, flopping, talking, climbing, and boxing. (they actually get up on their back legs and box each other) When I see the kids across the street playing, screaming with delight and I don't feel sorry for myself and instead think "good for them" and smile.

    There are so many little things that we need to learn to appreciate because we struggle with so many big things everyday. I have my low days, my self-pity days, my angry days. But I also have my good days that even when I'm feeling pain (like today) I still have a positive outlook on the world.

    You just have to do the best you can. Love your son with all your heart and make sure that he knows it. Love yourself just as much and make sure to remind yourself of it often. I'm only 20 years old and I feel as though I'm 80 half the time so I fully understand how angry you can feel because of the fibromyalgia. It sucks the life out of me some days, sucks the youth out of me. But it also makes me appreciate all those little things in life that are amazing and beautiful. I hope you can appreciate those things too. It really makes each day a bit brighter. Just never stop fighting. Always look for new things to help your symptoms. There is always a different action to take if one doesn't work for you. Wow that was long! Take good care of yourself..that's what is most important.
  5. Patti2

    Patti2 New Member

    Shosi,
    You are in the right place for support. There is alot of support here!! It is wonderful place to be. I know what you are saying about your house I have to years before mine is paid off. GOD willing I will still be able to work until then. I think everyone on this line has lost something or alot. I do get flares and am out of work the last one was a month. Husband left couldn't stand or understand the pain that I am going through. "It is all in your head" so before he left I did go to a shrink and there is nothing mentally wrong except when I go into fibro fog. So stay strong, and be as tough as you can. It is nice to know that you aren't in this alone.
    Take care, try to be happy!
    Patti
  6. epicurean

    epicurean New Member

    but I have learned with time.I am 57 and a lead a fairly "normal" life,it's not the one I had before,it's just a different one.
    I hope one day you feel the same.And no matter what ,nothing can change the fact that you are the best Mom you can possibly be.I do know that for a fact,I have two grown children who are the greatest!!
  7. BARBRA

    BARBRA New Member

    I am so sorry you are having all of these problems. We have all faced similar problems and are here to support and help you all we can. There are so many things we have to give up when one is afflicted with FM or CFS or both.

    What I try to do not to let it all get me down is to reach out to others and help them as much as I can. I think God did not put me here for any other reason other than to help others. If I can help you, I will be glad to and talk to you anytime. You feel free to e-mail me anytime and talk about your problems and never feel guilty about it. Sending you great big hugs from Texas. Barbra
  8. shoshi68

    shoshi68 New Member

    To All,

    I never expected so much support. Wow... thanks for helping me focus on the really important stuff. I am really blessed to have a wonderful husband and two great kids. All of your kind words and sharing of experience is exceedingly generous. Today, I found a great group of people- i really never expected such kindness.

    God bless you,

    Shoshi