OK What In The Heck Is Wrong With Me!! Don't Want to Be Away from home

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Mar 3, 2010.

  1. greatgran

    greatgran Member

    Not sure where to post this so here goes. We are getting the inside of our house painted. Since the paint smell bothers me and things are in such a mess we decided to go to a near by Inn and stay until the painter is finished.

    I actually thought it would do me good to get away from the house and live in luxury for awhile. The first night we were there I was in pain but it seem nice. The next day I was so fatigued/ pain / anxiety you name it and I had it . Maybe a crash I am not sure. I had told the greatgrans to come by and they could swim and we would have dinner in the room. Well I couldn't do a darn thing. They did get to swim but that was it. They left with tears in their eyes cause once again my plans were broken . I will never promise or plan anything where the little ones are involved again.

    Then later on that night , still feeling bad, all I could think about was wanting to go home. So got up this morning and came home. Will have to go back to the Inn after the painter gets here .

    The little ones are wanting to come over and all I want to do is be alone and stay home.

    Now is this CFS or am I a mental case? I get so sick and tried of hurting, being depressed cause I can't follow thru etc.

    Needed to vent cause I feel like such a bad person. Especially not wanting to be with my little ones.

  2. kat0465

    kat0465 New Member

    you can't beat yourself up for being sick! it's not all in your head. you know if you had a choice you would choose a totally different life, it's not your fault.

    i too have Planned things with my daughter, only to have the plans fall thru because i feel so bad. the only difference is she is old enough to understand.
    one day the GreatGrans will too, they obviously love to be with you. they got to go swimming, they got to stay in a Hotel, those are biggies for little kids.so you didnt do bad at all.

    I dont like leaving my Home either,i feel like if im gonna be sick, i can be that way in my own space and lay in my bed or couch when i feel really bad.and theres times when i dont want to see ANYONE! even my husband or my kids, noone really understands how bad we feel.
    thats why i stay on the Board, because Ya'll understand :) you hang in there, & dont beat yourself up about something that you hae no control over.

    I admit, i dont understand why we have to suffer so, but ths is the life we were given. I dont know what else to do but Grit my teeth & live it, we all have to. But we have each other
    {{Big Hugs}} Kat
    P.S. if you need to talk more, you have my e-mail.
    [This Message was Edited on 03/03/2010]
  3. mrlondon

    mrlondon Member

    Hi -The problem with hotels and motels is that you get exposed to all sorts of things that you aren't aware of, such as cleaning fluids and who knows what is in their air conditioner/heat system. My wife takes a small ionizer with her to keep in the bedroom, to at least try to clean out the air in that room. We've brought a real air filter with us on trips that we take by car. And of course there's the bed. Too soft or too hard causes major problems with my fibromyalgia. Pillows can be a problem also, too soft, too hard, or contaminated with mold/whatever.

    I have a relative who is allergic to polyester, so sometimes they have to take their own cotton linen with them when travelling.

    Do a google search using the words "avoid paint smells". It comes up with some web pages for suggestions on how to survive paint smells. - Mark
  4. greatgran

    greatgran Member

    I know you understand so sorry you have to feel this way. I hear all the grand parents talking about how wonderful they feel when the little ones are around and I don't feel that way at all.
    I love them soooooooo much and want to be with them but call it nerves or whatever but I can't handle much of anything. That makes me feel like such a bad person. Its almost at times I don't have feelings. Except the crying ones.

    How are things with you? Keep me updated.

  5. greatgran

    greatgran Member

    Yes, I am aware of all the chemicals etc. anywhere I go, maybe that is one reason I like to stay home. I will certainly google the paint smells and maybe can come home to stay tomorrow.
    Things us to neve bother me till thid darn cfs or maybe its old age.

    God Bless,
  6. Didoe

    Didoe New Member

    hi' greatgran
    i learned the hard way, btw i have severe fm and RA. there is little that goes on that my body does not react to-i'm like a barometer for stress-so when the daily routine is turned upside down, with minor or major issues, and lately everything feels major, my physical reaction has been devastating...its like i've lost all physical ability to cope with stress.

    so please please...dont deprive your grankids of your precious time. why not get a small doll, like a raggedy ann with arms and legs and invite them over for an occasion. using the doll, explain on their level that at times, there are parts of your body that just hurt so much you have to rest. its better to say something clear and frank so they dont think they've been bad and are punished which was why the day ended without a certain activity. Let them name the doll and tell them when they visit they can ask her how she's feeling and you can tell them, its a better day or not...

    i'm waitin on 5 kids to supply me with a single grandchild...dont miss out on the blessing you have.
  7. sascha

    sascha Member

    i have similar concerns all the time. it is such a misery when we crash out that OF COURSE a part of our beings wants very much to avoid that terrible experience. it's hard on us on all levels: physically, emotionally, mentally, and spiritually.

    i have one year old twin grandchildren- love them sooo much. but on many many occasions when i am over there with them it is too much for me, and down i go into that state of misery, then i am scared to go do it again. i go through depression, discouragement, demoralization in addition to lots of extra cfids symptoms when i crash, and i crash again and again and again. takes a while to dig out, then i go do it again.

    i keep trying to find a balance between expenditure of energy, time commitment and keeping myself going without the extra symptoms. i want to be with them and keep connection going SO MUCH, i keep trying to find best way to make it work without my crashing down into illness and suffering.

    so i keep tinkering with the system. but there's a natural instinct for self-preservation that makes you want to minimize risks to your well-being. doesn't that make sense to you? so don't berate yourself for this natural impulse. doesn't mean you don't love your family. just keep trying to find a balance that works for you. best, Sascha
  8. rockgor

    rockgor Well-Known Member

    Who can fault you if you do your best? Who could do more? Even Superman had
    limitations. Kryptonite to name just one.

    I think Didoe had a good suggestion re: the doll.

  9. greatgran

    greatgran Member

    For your replies. Sorry I am so late getting back to the board but have been sooooooo sick. Had the bug, now an ear/ sinus thing again, plus a crash . Now I know why I just couldn't do. I was sick not only with this darn disease but a few other things going on.
    Yes, I do try but there are times I just can't. I did try to explain this to my precious great-grans. They were so sweet and said "we know granny".

    If they had a mom or dad that cared for them and a so called normal life I wouldn't feel so bad . The little ones have been through so much and my daughter is stressed to the limits but doing her best trying to raise her precious granddaughters.

    God Bless each of you,
  10. kat0465

    kat0465 New Member

    you got the bug thats going around even here in Tx. don't know how i managed to not get it yet.
    I'm glad you explained to your GGrands how your feeling, when it comes down to it,Kids are more Understanding than most of our so called friends.:(
    they are blessede to have you! i know it's hard to watch them struggle with no Parents, but Just thank God they have you & thier grandmother!
    i grew up like they are, and if it wasent for my grand parents, i would have died! they raised me,, even tho grandfather was partially disabled & grandmother had heart disease & i believe cfids.
    they couldnt do a lot with me, but they sure did a lot for me. as you do for yours.
    I Will still be praying for you & your family. Hang in there, spring is coming soon & maybe we will all feel a little better.
    {{Hugs}} Kat
  11. code34me

    code34me New Member

    I understand alot of what you are talking about. The only thing is with me is that I am the mom and have a 17 year old daughter who seems very recentful towards me :( My son is 7 and has Aspergers. He is a smart, loving, angry handfull! He ask me if I am ever going to get better? And I have to tell him I hope so but there is no cure for it right now. I feel like such a failure now with this FM!!! I was diagnosed in 2000 I had him in 2002. I am learning to not say that we are going to do something on a certain date. Instead if I feel good I just do things at the spur of the moment (trying like I said.) I too just want to be alone alot and I feel really bad about that :(

    I am soo mad at FM!!! It has stole my motherhood from me along with many other things.....

    I have so much to say but am to tired LOL! Maybe just when you feel decent call them and suprise them with something?

    Take care
  12. MsE

    MsE New Member

    Changes, even good changes, cause stress--and stress, even good stress, often causes flares. It's the same old thing, my friend. Hugs, MsE

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