newbie question on coping

Discussion in 'Fibromyalgia Main Forum' started by imtiredtoo, Jul 11, 2003.

  1. imtiredtoo

    imtiredtoo New Member

    Hi everyone! I'm new to this site and new to board posting. Have always been just a lurker! I was diagnosed with fms two long years ago. After this last flare-up, DH commented that I hadn't accepted this disease or the lifestyle changes it often causes. He suggested I find people that could better understand the "psychological" results of this disease. So of course I went to the computer.

    So, can someone share with me how they learned to cope and accept their limitations? I've always been a planner and hate living day by day!!

    Thanks!
  2. Lynda B.

    Lynda B. New Member

    First, I have to say you will almost have to live day by day. I had to sort of re-invent myself and how I did things. But, that does not mean you can plan things on the calendar and such. On the days I have something big planned for the evening, I take it easy all day long. Or if my day looks challenging, I know I will be pooped out in the evening. Then there are the times I can barely get around for days at a time. It's a cycle. Sometimes you can identify what causes your flares and other times it just happens. The big thing is to pace which most of us don't have a clue as to how to do.

    There are several books out there that do teach you how to do this. Books on FMS or CFS. My doctor has a book in his office that all patients are required to take with them and try to to the homework and worksheets. There is too much info to give out here. I think your best bet is to get a hold of a good guidance book and then come back and ask questions. Especially those that you can't come to terms with.

    Take care,

    Lynda B.

  3. jeniwren

    jeniwren New Member


    There is no reason why you cannot still make plans. You just need to be aware that those plans will need to be flexible and if they are not accomplished it is not because you have failed.

    I suffer arthritis in the lower back and was diagnosed with FMS in late Feb this yr. I began a BA in 1996 and I now have 3 semesters to go, as I've had to do it very part-time. I planned to start part-time and move to full-time as I got used to studying again. Was not to be...but I haven't given up. It will take me 9 yrs now instead of the original plan of 4-5 yrs. That's FMS/CFS for you.

    Jeni

  4. Shirl

    Shirl New Member

    Hi, welcome to our world! Thats a tough question, but it does have an answer, maybe many of them.

    I am a 20 year sufferer of FM, the changes were tramatic throughout the years. Little by little I learned to accept this illness, and the changes that go with it.

    The first thing you need to face up too is that you are going to have to change that lifestyle you now live. Thats the hardest part.

    I had always been a type 'A' personality, did things without thinking, was forever on the go, did not know how to say 'no' to anyone.

    I learned to say 'no' very firmly to my children (who are now grown and out of the house), my husband and then to friends and family.

    I do not make plans too far in advance, never say; 'I will be there' to anyone anymore. I now say, 'if I can, I will be there, will let you know the day of the event'! Thats how much my life has changed, and those who accept me accept my ability to do this and mean it.

    I had mega hobbies, things I loved to do, the ones I could modify to suit my new lifestyle, I did. I love gardening, I had a huge greenhouse, now I garden in large pots raised on cinder bricks so that I do not have to bend over to work in them, I can sit if necessary to weed, etc. It worked, I can still garden, but no more heavy work with carrying heavy pots, soil etc.

    I love animals all kinds, used to be the 'drop off place' for any kind of animals that people threw out, but can't do that anymore. I have five dogs, most of them are old now, and all but one were strays. I took care of all of them untill they died of natural causes. But I do not take in anymore now if I can help it.

    My husband builds planters in the front garden, my son does the heavy work and I do the watering! I still garden, to a limited extent.

    That is just an example of what you can do, and in a sense must do if you want to live as pain free and stress free as possible.

    As for friends and family, I simply eliminated those who were 'toxic' toxic people cause stress, and stress to us means pain. I choose to get rid of those who stress me out.

    I always make a 'would like to do list', if I can do some of it one day, thats fine, but if I can't, then hopefully tomorrow will be a better day. I do not stress over it anymore.

    No matter what we do, we always come back to the living 'day by day', as far as I know there is no other way.

    In a crazy way, that is how life was meant to be lived, think about it; We can't change the past, so why worry about it? We do not know what the future holds, so why worry about that? All we really have is the present!

    If you like, read my profile, it will give you an idea of the life I used to have, and the life I have created for myself now.
    Others have lost a lot more than I have. Others are a lot sicker then we are, at the very least these illnesses are not terminal. Thats something to be grateful for, we are alive, and life is precious.

    I did do most of what I truly wanted to do in my life before I got this ill. So I am not grieving so badly for what most people would think I am missing.

    I do feel so very sorry for the young people with this illness, they will be missing a lot of what life has to offer them, but fighting this will not help. Its best to make the changes and hope for a cause and a cure in the near future for them.

    Hope this helps you get an idea of what your doctor is trying to tell you.

    Again, welcome to the board, and I do hope we hear from you often.

    Shalom, Shirl
  5. lynnkat

    lynnkat New Member

    Welcome to the board where I'm sure that you will find loads of info and support from everyone here. I was diagnosed last November and am still in the process of figuring out what works for me as far as meds and lifestyle changes.

    I can't add much to the other posts since they had such good advice. I too have modified my gardening as Shirl has done and it makes me feel as if I can accomplish something now in my flower garden and enjoy all the beauty of mother nature.

    Somtimes when I'm really down I find a comedy movie to watch to take me away for awhile from this nasty disease. My dog is my buddy and he helps me get up many a day to face the world causee when a pet has to go, they GOTTA GO NOW, not when I'm done feeling badly about my situation. I don't know what I would do without his silliness and unconditonal love.

    I also have a hard time accepting what is happening to me since I was always able to do all the yard work, keep a clean house, have a full-time job, cook and bake up a storm. Now, I have to pick a couple of tasks that I want to finish in a day and if I don't get them done or the way that I want to do them I am slowly learning not to beat myself up for the "failure".

    Toxic people, as Shirl calls them are a major drain on the body and soul and they need to be dealt with. My mom and I had a "discussion" right before Xmas and she won't talk to me, my husband or son which I figure is her loss. I don't miss the constant critism that was always directed at me and I'm assuming that when she gets over her mood that she will call. Such is life I guess.

    I always try to remember that although this disease is so nasty there is always someone who is worse off then me. They say when you are handed lemons a person should make lemonade but I sometimes wonder why I have to have so many pits in my glass!!!! LOL

    Take care and laugh when you can cause it's mother natures lubricant for the soul. lynnkat