Doe`s Anyone feel like your world has gotten SOO SMALL?

Discussion in 'Fibromyalgia Main Forum' started by kerrymygirl, Apr 8, 2003.

  1. kerrymygirl

    kerrymygirl New Member

    I was so active hated to miss or not try anything right down to cliff dive and parasail,whitewater raft etc. Had my own bus.& head up comm. activities,usually life of party. Now I just watch life pass me by. Old folks here are golfing at crack of dawn, I though that was too slow of a sport for me.Now I am lucky if I can walk at dawn or anytime. I had so much energy could never understand how people could nap & waste time. My family and friends have all moved on busy traveling etc. Even when I feel better can`t afford to things I love. Plus driving is next to zilch now due to spinal prob. So, I live in my nest as my kids called it. Everything is close by in case of no energy day. Now my world is t.v.,computer,yuk,crosswords, I just feel like some of the old people here that I used to feel sorry for because they were home bound and in pain,I am them now.I would take care them till it was taking too much of my energy,was making me more depressed. I still volunteer,but even then I get so sick I can hardly make it home. Some days I just feel like I should be in a hospital I feel so ill. I have put myself in research programs,treatments some expensive. Still here I am the use of the phone is my only people contact for days. Just wondered if anyone else feels in this huge vast world this 1 ,way of life has gotten too small??? I send my blessings and HUGSSS. JUST FRUSTRATED WATCHING LIFE GO {BYE}
    [This Message was Edited on 04/08/2003]
  2. LErdman

    LErdman New Member

    Yes I think we all feel like we are missing life. I used to walk my dogs with my friends and their dogs every day after work. Haven't been able to do that for years. Now we all have a whole new group of dogs since the others have passed on so we thought it would be fun to get them all together and us too. We let them play in my friends yard and we sat on the deck. Well that was Sunday and today is Tuesday and I am still sooo tired I can hardly keep my eyes open. I had a nice time but my word I wouldn't say I did anything to over excert myself.

    At one time I rarely had time to watch TV because of being busy doing other things. Now it is my favorite thing to do. At least you can see other people on TV and not leave the living room.

    Hang in there and at least we have this board to come to. I wish I had found this board a long time ago!
  3. Mikie

    Mikie Moderator

    All my life, I felt there was an urgency to do the things I had always wanted to do. It's hard to explain. I never felt that I would die young, I just felt that the opportunities might not always be there.

    I was a true jockette and did all kinds of sports. I was a private pilot and got my SCUBA diving license and went diving. I traveled a little and returned to school and finished my degree. I did everything I ever wanted to, including having children.

    After my divorce, I worked hard, made good money, and partied hardy with my friends.

    I'm so glad that I did it all. Yes, my world is much smaller now but it's a size I can manage. As I continue to heal, hopefully, I will be able to do some things I enjoy like tennis, golf, and skiing. If not, at least I didn't miss doing them at all. For that, I am grateful.

    Love, Mikie
  4. NewEnglander

    NewEnglander New Member

    I'm the baby of the family, youngest of 4 girls. one sister
    this raising a family, always working sking dancin whatever she wants, sleeps on the couch at my house sometimes no problems sleeping. another one of my sisters takes care of 4 or 5 horses now, cooks like a maniac and is raising a family and last but not least my oldest sister who is also caring for her family, working full time and is busy, busy busy. there just little bundles of energy. gotta luv em
    Lisa
  5. marta

    marta New Member

    Like many others here I was active, involved and vital before this DD. Now I have cats. Only two but I feel like "a little old lady with her cats".

    I'm divorced, my kids either live a long way from me or they're busy with their young families. I don't blame them nor do I blame the friends who had to move on with their lives but I'm still angry at this illness and at the medical field's inability to find an answer.

    Meanwhile, I have the computer, TV (ugh), books and ..... hmmmmmm, that's pretty much it for diversion. I think the isolation is probably the worst thing about this DD - yet I can't handle crowds or too much social interaction either without wiping out.

    So, yup.

    Marta
  6. layinglow

    layinglow New Member

    I understand your feelings. I managed 200 broadmares and their foals, and 6 stallions at a racehorse breeding facility, going from dawn, into the wee hours when mares foal, for 15 years. At the same time raising my own 4 children, plus 2 strays they brought home, lol. I was a taekwondo instructor after that, working 6 days a week, teaching 4 classes a night, and competing on weekends in sparring tournaments. I miss the old me. I miss the energy, and activity. It is as if it was another lifetime.

    Like others though, I have found some new activities (though very sedate), that I can take joy in. My socialization takes place on the computer or telephone now, as I am homebound. I enjoy quilting for my family and grandkids. I always have loved reading, but never had the time, and do now, voraciously. I can even make the 1 1/2 hr. ride to the lake, to our getaway, sit in a lawnchair, bask in the sun, and watch the water ripple. I play word games and crosswords to try to keep my faculties working.
    I definitely have a much greater appreciation for health now--I took it for granted for so long. I do wish I would have accomplished the traveling, hiking, and camping that I had planned on doing when my children were grown---and now it's too late I am afraid.

    There are alot of limitations, but alot of good too. Somedays I, too have trouble remembering the good that I still have in my life, and not agonizing over what has been lost.

    Best wishes,
    LL
  7. jamedw1

    jamedw1 New Member

    i find myself thinking along mikie's lines...

    so much of life is prespective...

    not to undermind the severity of the DD...
    i don't have fm or cfs... i just love somebody that does...
    i come here a lot to read... to learn... to understand... to lend a opinion... to add my 2 cents if i think i might actually sound intelligent... to send a hug and hope it matters...

    we all have our "private idahos"... just the degrees vary...
    but the admiration i have for everyone here, is not in the "problems" we share, but rather in the support that is given... the friendship and love that is sometimes hard to find... the communal atmosphere that exists, with a common thread... doesnt matter size, shape, color, religion, gender (haha)... we read, we learn, we help, we get helped...

    but still, in this case, the word perspective keeps coming to mind... i've been whitewater rafting a few times, but you wouldn't get my chicken butt jumping off no cliff... parasailing isn't for the weak of heart, either... actually, with an artificial hip, golf sounds just fine...
    but when i (occasionally) think about dieing, i think that i'd go out having done more in my meager 50 years than 1/2 this country's done in their collective lifetimes... :) ... and that gives me a sense of peace...

    of course i don't need to endure what most peeps here do, but i do live it daily, just from the other side of the fence... i really don't know what i'd be saying if i did have the other shoe on... and i know that when i see her eyes in pain, or hear it in her voice, a piece of me aches too... just a different kind of ache.. call it a spiritual one...

    the world is probably unfolding as it's supposed to be, which a lot of times is very unfair... i've seen more bravery here in the short while i've been coming, than in any period of my life... fate brought me here... love keeps me coming back... your collective courage, here, is something to be worn with pride... just don't get too comfortable with it (as if that's possible)... tomorrow you may need to be braver and more corageous..

    so, in point, relish your achievements, no matter how small they are... "however humble;
    it is a real possession in the changing fortunes of time"...
    (i would like to invite you all to read the 'desiderata", my own personal spirit lifter, but i dont know if i can do that)... :)
    just keep some sense of perspective... sometimes it's real hard to do... but in the long run, it's those memories that give us a will for our tomorrows...
    i will read with you...
    i will learn with you...
    i will laugh with you and
    i will cry with you...

    i just wont let you quit... ever...

    this has been nice...
    now if i can only get this "love" thing right... :)

    G H and the such...
    ed
    [This Message was Edited on 04/08/2003]
  8. Rich333

    Rich333 New Member

    You put into words just how I feel. I used to bike ride, swim, kayak, snorkel dive, run, lift weights, do calisthenics, etc. I had my own business, got three college degrees. Now I can't keep up with cleaning the bathroom, shopping for groceries, etc. without suffering for it.

    My interests are a little internet surfing, TV, and uh, uh... Well I guess that's it. I can't even read anymore, just the dang newspaper and often can't manage that.

    Had a big relapse six years ago and never got over it. At least now I have a diagnosis. That and a half a buck will buy me a newspaper anywhere.

    If it were not for spiritual things I would be in total despair. But you adapt, with help. It's a different life all right, but you have to think: at least noone is shooting at us.

    That's as positive as I can be right now. It's good to know you are all out there and with me somehow.

    Warm thoughts,

    Richard
  9. CelticLadee

    CelticLadee New Member

    This is too true. I kid around that I live in a box on a short leash. I try to make my box as pleasant as possible. I love to cook and read so that helps. I have a sweet little pomeranian for company and my hubby calls on the cell phone when he is out working to check on me. My family & friends email me and when I'm up for it they visit a little while. When I'm feeling good I tend to over do it. Just recently I was feeling so normal I went out and weeded my flower beds and planted flower seeds. The next day I felt like I had the flu and last night my body went into the everything aches mode. Still hurting today. When will I learn? LOL. Yes, sometimes I do feel isolated but the cost is so high to socialize that I can't bear it anymore. I have hope that someday things will change and I will be able to do the things I loved: bicycling, hiking, etc. In the meantime I just think of this as a special time to get to know myself better and gain knowledge by reading a lot. Also I recently learned how to make the yummiest yogurt my hubby says. Today I made chicken wild rice soup and it smells heavenly and is so good for you. Anyway, this is kinda how I'm dealing with it. Fortunately I am able to stay up and do little things like this unlike so many that are suffering so badly they are bedridden everyday. I try to be thankful for what I have rather than focus on what I no longer have. When we are grateful we can't get too down. It does take effort to challenge the mind to keep the focus right but I think it is well worth it and part of our healing. Here's too better days ahead. CLD
  10. Mewsley

    Mewsley New Member

    I too, was an active person all my life. Everything had to be done, never late, always thinking ahead. Now I do well to leave the house once a day to run an errand. I am already worried about my daughters visit from N.C.(I live in Canada) as I know I won't be able to keep up with her. My world too is t.v. and the computer. I can't read much as my eyes are so bad. I send my best wishes and hope it is a comfort to you to know you are not alone.
  11. dhcpolwnk

    dhcpolwnk New Member

    I definitely feel my world is smaller than it used to be--but not as small as it could be.

    As I've said many times on this board (probably to the point where I've "bored" you all), I hav multiple sclerosis in addition to MS. My MS was diagnosed 25 years ago this month, the fibro just last August.

    Because of the MS, I confronted a shrinking world long before my fibro diagnosis. It wasn't an easy thing to do emotionally, but I got a scooter 15 years ago, and it has given me back a lot of the world I had lost. For 12 years, I worked as the government issues coordinator for California chapters of the National Multiple Sclerosis Society. That job involved a fair amount of travel, including making visits to members of Congress in Washington, DC, and members of my state's legislature in Sacramento, CA. On most of these trips, I have taken my scooter with me. Without the scooter, I could never have walked the halls of the Congressional office buildings, the U.S. Capitol building or our state's Capitol building. The scooter also allowed me to see museums and visit landmarks in Washington, DC. It allowed me to enjoy myself on an Alaska cruise 10 years ago. It allows me to go shopping, attend plays and movies.

    Obviously, a scooter won't help with wind-sailing or some other very physical activities. But assistive technology is a relatively new area, and there are may devices that can make life easier for people whose bodies seem to be rebelling.

    So I just want to encourage those who feel as if their world is shrinking to look into the possibility that some form of assistive device or durable medical equipment might help open it up again. You may have to fight your doctor or insurance plan if they don't acknowledge the degree to which your FM or CFIDS problems are limiting your life, but I have a hunch that for many, the biggest barrier to overcome will be your own resistance to thinking of yourself as "disabled" and in need of this equipment.

    As others have said, this again is a matter of perspective. Although I cried when I realized I needed a scooter, once I got it and started using it, that became unimportant. My scooter is just a tool, and if it helpse me to conserve my limited energy and prevents me from falling because of balance problems or myoclonic jerks, then the rest doesn't matter.

    Besides, the stereotypes about disability are false and misleading. I know people who are more disabled than I am who do amazing things--including a quadriplegic friend who went whitewater rafting!

    --Laura R.M.
  12. JaciBart

    JaciBart Member

    I did it all, was gorgeous, ran, excelled at my career, community service, awards, commendations, social, traveled, rafted, everything everything everything.

    I have an incredibly small world, went out to dinner tonight to the monthly Gideon's Banquet (hubby is a Gideon, the Christian Men's group that distributes bibles) and the socialing at the small (30 people) dinner is the high point of my week. It was hard sitting for 2 hours and I ate too much but I was glad to just be able to get dressed and go. My hubby likes to have me there.

    Anyway, yes, my world is nothing like it used to be but I look at it like this: I am thankful I had those experiences in my younger days or if I had not I would be thinking I was missing out on something now. I do know that all that was fun & exciting but what I have now in my life is far more meaningful as it is all hand chosen. How I spend my time now is my choice and I only do what I know I can handle and the love in our home is so rewarding to me, I love boredom at this time in my life, can't get enough of it, would not trade all this for all that I used to be for anything. Even with the pain.

    Jaci
  13. little

    little Member

    Ditto on everything that you said. I didn't have an active life out side of work and home. I raised three kids alone working three jobs most of the time. When they were grown and gone along came three grandchildren. My daughters husband died in 1994 and I have helped her ever since. I have put off things that I wanted to do. I always thought that I had plenty of time for them when the grandchildren were all grown up. I believe that I have had this FM since 1972. It has been real bad over the last 15 years. Now that I have the time to do all the things that I wanted to I can't. My world has shrunk so much. I went to the grocery store last night with the family, we were gone for about four hours. When I got home I went to bed. I couldn't even put the food away. I have a chance to do some traveling but can't. My mother is 92, I can't even help her. My daughter is 37 and her daughter is 18, they both show signs of this DD. They look at me and see their future. not a pretty sight. Hugs and blessings to you. Gail
  14. kerrymygirl

    kerrymygirl New Member

    Sorry to hear about your kids, my daughter is showing all the signs don`t know if it is the Lyme or fm. She got sick same time I did after we petted deer,only I ended up in hosp.with meningitis and she ran a fever for 2 days. Now she is so scared to be around me that she is going to end up like me,I was in denial for yrs. and still use it. She is such a good kid and we hate to see our own and what they could be destined for. It is why I have put myself in so many test studies,I may not see total cure in my life time but would hope she has better future. She works 60+hrs. a week and I have not seen her in 2yrs. due to this dd. We were really close but she saw a vibrant person go to this and it scares her,I know. Take Care
  15. kerrymygirl

    kerrymygirl New Member

    Just saw aclip on fm on local channel. Once again it did not tell the true story. Just exercise and we will be better. I do this everyday or as I said when I can. Do they not realize we can`t even get out of bed with out some sort of stretching and excersize. I used to teach arobics and now know what I can and cannot do like many of us. I forget and worked out in pool too long and a 90 yr. old guy had to help me out, that was pleasant.We do forget from time to time,lol, Gurrrrr. Guess we still have a way`s to go, if we can I have been fitting the system along time to them see the real picture. Oh well, you young one`s keep plugging.
    [This Message was Edited on 04/12/2003]
  16. Shirl

    Shirl New Member

    You are not alone with these feelings, we can all attest to them.

    It took me years to admit to myself that I could not keep up the pace I had been so accustom to. But I am older than you, and my children are all grown so I now learned to live with what I can do, and not allow myself to grieve over what I USED to do! It makes life a lot easier in the long run.

    I learned to do what I can, and avoid what causes pain and stress. But it took years to get to this way of thinking.

    What I miss the most? dancing, roller skating, motorcycle riding, horse back riding, bowling, heavy duty gardening, having my own business, doing my own house repairs, painting (the odor of the oils are killers to me now), sewing everything from draperies, bedspreads, my own clothes,upholstery, embroidery, gourmet French cooking, crafts, taking in stray animals, editor of a newsletter, and so on and so forth!

    The only tv that I watched was the news, now I have a fit if the cable goes out!

    I did learn to do things I like in moderation, and on a smaller scale, the gardening for example, I do just a little and have my son to do the heavy work . But its still a thrill to watch things grow.

    I am feeling better in the last two years than I have in 20 years with Fibro. But I do need to do things and then rest before going to something else.

    I think the stress of children was one of my biggest problems, I would keep going no matter how much pain I was in for them. Now that they are adults, I can relax and let them live their own lives. My husband is a big help, and I can still take care of my five dogs or 'fur-kids' as they are called on this board!

    Your children call your 'nest', mine call my house and the five acres of wildland my 'refuge', I feed wildbirds, squirrels, rabbits, and anything else that passes through here. My house is my castle and I do spend most of my life in it.

    I still read my books, my library has 10,000 books in it and I feel bad sometimes that I can't remember what one or the other of the books are about now, but I will read one over again if it gets to me too bad!

    Hope you get to feeling better soon, and do try to rest as much as you can, it really makes our lives a whole lot easier!

    Stressing over what you can't do anymore only makes it worst.

    Shalom, Shirl

  17. CATLADY912

    CATLADY912 New Member

    I WAS LIKE YOU, VERY ACTIVE, WORKED 40 HOURS A WEEK, RAISED MY TWO CHILDREN, WAS ON THE GO ALL THE TIME. ENJOYED GOING OUT WITH FRIENDS DANCING AND DINNER. NOW ITS JUST DINNER. I MISS DANCING MORE THAN ANYTHING. I DANCED MY WHOLE LIFE. NOW I JUST HAVE NOT COME TO THE ACCEPTANCE PART YET. WHEN I FOUND OUT THAT THE PROBLEMS WITH MY BACK, WHICH PROBABLY CAME FROM ALL THAT DANCING, LOL,LOL, I WAS ABLE TO COPE WITH IT AND STILL GO AS MUCH AS I LIKED EVEN THOUGH I WAS IN PAIN, BUT NOW, THIS FIBRO IS WORST THAN THE BACK PROBLEMS AND WITH BOTH OF THEM TOGETHER, WELL YOU CAN IMAGINE. NOW I FIND EXCUSES NOT TO GO OUT AND SIT IN FRONT OF THE TV, READ MY BOOKS, TRY TO CLEAN SOME ETC. CAN'T MAKE PLANS AHEAD OF TIME BECAUSE DON'T KNOW WHETHER I WILL BE UP TO IT. LIKE, MY UNCLE PASSED AWAY THIS PAST WEEK AND I WAS NOT ABLE TO JUST JUMP IN THE VAN AND DRIVE ALL THE WAY TO N.Y. FOR THE FUNERAL, AND NOW THIS HAS REALLY GOTTEN ME DOWN. I REMEMBER WHEN I WOULD JUMP IN THE CAR ON FRIDAY AND DRIVE ALL THE 12 HOURS TO NEW YORK TO SEE MY GRANDMOTHER AND THAN TURN AROUND ON SUNDAY AND DRIVE HOME. THOSE WERE THE DAYS.
    I GUESS FIBRO IS LIKE ANYTHING ELSE, THE ACCEPTANCE WILL COME IT WILL JUST TAKE ITS TIME. WE HAVE TO GO THRU THE STAGES OF FRUSTRATIONS, ANGER, HURT, MAD AND WHAT EVER ELSE AND THAN ACCEPTANCE. I WILL BE GLAD WHEN THAT DAY COMES.

    SOFT HUGS,
    JANICE
  18. kerrymygirl

    kerrymygirl New Member

    I love dancing I go to singles dances and Guess I should be flattered,but I keep getting asked to dance and I just want to get out, as I used to tell my pts, atleast if you go and tap your foot it may help you. Well, if I can pump out one dance I am happy. But I tell them do not spin me I was in a accident, do they listen, no, try to spin me more. I just want to dance seperate because I use it to keep moving and sort of excerzice. Just can`t win for trying so I end up having to go outside since the guys do not listen. I think that we can not make plans, people take it wrong and quit asking gurrrr so frustrating. If people would just believe and try to understand aliitle. I know it is hard for someone who isn`t suffering butt.

    I hope you can atleast go and listen to music it uplifting!
    Hugsss
  19. JP

    JP New Member

    to your post. I stopped working in Dec/01. I probably drive once every 5-7 days. I do have support and love around me, which I value a great deal. I am working at getting back into the world of work...even if I fail, I want to give it my best effort. I have no idea how this is going to work, based on my condition, and I am going for broke, so to speak.

    Hang in there and thank you for your post...Jan