Reality Check: Feeling frustrated...Isolated, alone.

Discussion in 'Fibromyalgia Main Forum' started by wish_to_be_healthy, Oct 30, 2006.

  1. wish_to_be_healthy

    wish_to_be_healthy New Member

    Hey folks,

    I've been working on my project...and that has pushed me into a flare...I was feeling so positive for a few weeks, and really thought, this time I have accepted this illness, and it knocked me on my butt again!

    I think the hardest piece is that again I attempeted to do something I had put away and let go of (making a complex costume for my son)...and the DD puts my limitations in my face, again...It is like I am mourning my old life again.

    Then there is the mood shift...I was positve and calm, and now I feel like I did before...unsure, afraid, don't know who to trust, because I can't trust my own body, it has let me down again...Depression...feeling alone, feeling trapped by my limitations, my overiding emotions, my fears.

    So, I come here to you all for a reality check...I KNOW that this disease can create all that I am feeling right now, even if my emotions would have me believe that I am the only one here who has felt this...I know intellectually this is not the case, I have read your stories and posts.

    So I ask you kindly to let me know that I am not alone today, that you care, and understand what I am feeling right now.

    Thank you.


  2. demablue

    demablue New Member

    I really do understand about wanting to do what you used to could without paying a physical price later. I have lived with significant pain for years and now has developed into a deep depression and the spouse I thought I could trust has proven me wrong, I can not trust him anymore so I feel extremely lonely.
  3. cct

    cct Member

    Dear Wish_To_Be_Healthy,

    I am with you today. I understand how painful it is to lose your former life. I understand the depression that comes with enduring that loss over and over again.

    Everytime I go into remission (even for a day), I think "Okay. I am finished with all of that sickness/illness/disease stuff. I have recovered. I am better and I am going to stay that way." I start planning things, I start doing things, I try to reconnect with people, and then BAM! I crash down to the floor.

    Today is one of those "on the floor" days.

    I had plans for today. I was going to see a new doctor. However, I am so sick today that I cannot drive my car. So, my plans have been dashed. Instead, I am forced to stay at home and cope with this DD.

    All I can do is pray that tomorrow will be better for both of us.

    Carron
  4. NyroFan

    NyroFan New Member

    Wish:

    Hey---you are not alone. I, for one, will keep you in my thoughts today. (I mean really).

    At night I make special wishes for people on the message board and the board in general.

    No, you are not alone.

    Never, ever!!!!!

    love,
    nyrofan

  5. Lolalee

    Lolalee New Member

    Oh,hon, it's the pits isn't it!! This illness is so sneaky. One day you get fooled into thinking you are well enough to tackle a hobby or go to the store and then WHAM!! It's waiting for you to let your guard down so that it can rear it's ugly head and say "thought I was gone, did ya!!....well I'm baaaaack".

    LOL....that just sounded so sinister, but to me this seems like my reality at times. So, you are not alone.

    The reality is that we just are not the same people we used to be. Maybe eventually we'll be able to do more and more without going into a flare, but it will take time. In the meantime we must remember that if we push, we will pay.

    Lolalee
    [This Message was Edited on 10/30/2006]
  6. Redshadow

    Redshadow New Member

    Hello wish_to_be_healthy,
    If I was there with you right now I'd give you a big hug :^)
    Life is hard enough, but now with being so ill it's 5 times as hard. My only hope is in Jesus Christ, and I know He is there and will take this sickness and use it for something good. But at the same time it is so hard to deal with this, it is so hard to even think straight, raise your arm to type on this keyboard and all you want to do is just lie and rest and forget what you use to have what you use to be able to do. I bet when you have good days you also think the illness is just in your head, I sure do, but when you get beaten down again with pain and extreme exhaustion it becomes a cruel reality. Please keep fighting it and know that you are not alone.
    May the Lord comfort you friend.
  7. Redwillow

    Redwillow New Member

    Hi Hon:

    I am in the same corner as you today. I did a little bit of outside work yesterday and today I feel terrible.

    Dishes are piled in the sink, laundry is piled in the basket and I don't have the energy to deal with any of it.

    I used to love making halloween costumes for my kids. Some of my favorites were a kitten costume made out some orange and black fur. My daughter looked adorable with her painted on whiskers and a black velvet hat with orange fur ears. I can still picture her showing everyone how she could wag her tail! LOL

    My son wanted a Ninja Turtle costume for kindergarten. I spent hours making a stuffed shell. Both of these costumes turned out so well that they got passed on to the nieces and nephews...

    Anyway I need to go lie down but wanted to let you know you aren't alone!

    hugs Redwillow

  8. NyroFan

    NyroFan New Member

    Hi Wish...

    I am just checking in to see how you are doing today.

    nyrofan
  9. wish_to_be_healthy

    wish_to_be_healthy New Member

    It is a grieving of my past again...It is trying to trust when your body let's you down...it is resisting the urge to isolate...even though you deparately want to be part of the world, part of community...

    You draw into yourself so you don't get hurt...and the isolation makes you feel even more depressed!

    I can't believe after being sick for 20+ years that here I am at the bottom of a cycle, with the stuffing kicked out of me again...I had really thought that I made peace with this disease!!!!

    Thank you all for posting, and letting me know I am not alone here in my house, that you understand how I feel,we are interconnected, not alone, and that we are not invisable...even if it feels like the world is going by...

    Suzanne
  10. Marta608

    Marta608 Member

    You are SO not alone in what you're going through. We do care and we do understand.

    I'd like to wax poetic or wise but I'm too tired today.

    Sending hugs instead,

    Marta
  11. Jordane

    Jordane New Member


    Hi WTBH,

    Know what you mean!!! This DD. can really get you down.

    Emotionally,because we are trying to face it ,mentally,that we cannot do like we use to.The big WHY NOT???

    Physically, because we are trying to ignore that voice in our head,and do *it* anyway.

    They both land us back where we don't want to be.Sick and hurting, mind and body.

    I cannot take away what you are going thru.But I do understand,because I am there.

    You are not alone!!
    Take Care,
    hugzzzz, Jordane
  12. chloeuk

    chloeuk New Member

    Someone mentioned it and I have just finished a 6 week course of it and it has really helped me..it gives you ways to challenge your thinking and the common distortions we say to ourselves...it isnt a quick fix but it does help you to just acknowledge the way we think.

    Isolation is a common thing in depression or chronic illness because we just feel like no one understands or is sick of us complaining...but good friends arent like that. I am sure none of us here doesnt see a friend because they have problems, we are willing to help people who are in need of support yet we dont feel worthy of that coming from our own friends...it is one of the biggest signs that I am unwell...withdrawing from life...and its the worst thing for you....whatever you do to help yourself the most important is getting out there and talking to your friends...if you cant get out call them and get them to come to you...we have to be our own friend sometimes and ask for support because it makes such a big difference. Hope the good days come back quickly for you.
  13. wish_to_be_healthy

    wish_to_be_healthy New Member

    I have talked to my doc about dilectical behavioural therapy, which is similar to CBT...I had called on it a few weeks ago, then life got busy, and I wasn't in the place I am today...nedd to follow up on that.

    I do think there are 3 things going on:

    1: I do have some stuff from my past that makes this harder, (enviromental and biological from chilhood) but I know that when I left home and wasn't as sick, I wasn't as depressed...I felt hope for my future, being on my own, out of my parents home.

    2: The disease, CFS/FM/CNS Lupus...whatever, can make me depressed directly...and the reality of that is something I am understanding more, as more evidence points to this... the more I read posts that Hailey and others have put up.

    3: Then, of course, there is the secondary depression, of not being able to do what you want, or what you used to be able to do...(Thinking out loud here)

    I know I'm preaching to the choir...and this is stuff alot of folks here already know...I'm glad I can be real with you, and that you understand...Not alot of my friends or family get it.

    Thanks again...need to get back to the costume,

    Suz
  14. leubie

    leubie New Member

    hey------im sorry you are having a re-flare-----------gosh ----i know what you are feeling----------about 3 months ago ----i started taking provigil-----------right a way i started feeling sooooooooooo much better--------wow!!!!!!!!!! could not believe it-----------WELL----------- you know what comes next( right after ive bragged to everyone---including family, co-workers AND YES------------------MY DOCTOR) --------i start felling like -----well really BAD again-------there goes everything id worked so hard on-------down the drain--------im back at square one----------so dear wish-------YOU are NOT ALONE---------i (we) understand--------im sorry you are going through this at this time--------i WISH you lucg and success w/ your sons costume----i WISH i could help you!!!!!!!! my son is 16 and is going to a partyAND HE DOES NOT NEED ME!!!!!! please keep in touch and let us know how everthing goes-----------i ( we ) care!!!!!!!!!!!!!LOVE TO ALL---------LAURA
  15. MsE

    MsE New Member

    I've had CFS for years and one would think I would quit falling into this trap, but I do. It is the loss of the me that was--over and over and over again--that does it. So I mourn for a bit.
  16. rockymtnmom

    rockymtnmom New Member

    Dear Wish to Be Healty,

    Your name alone expresses the wishes of all of us - and the

    feelings you expressed tonight are shared by so many of

    us. We want so badly to be healthy. We try so hard to

    make the most of our good days, to be the best we can, and

    then it seems we are "punished" for our good intentions by

    a flare, even when it seems to us that we haven't done too

    much. And then there is the mourning and depression that

    accompanies the flare - much of it rooted in reality - who

    wouldn't be sad if they were dealing with what we do - but

    some of it driven by our bodies that betray us so much. I

    have noticed that when I am in a flare and depressed, I am

    much more likely to have thoughts that are not kind to my

    self, that are self-critical, hopeless, self-blaming, and

    the like. I truly believe that these bleak, self-hating

    kinds of thoughts are much more prevalent when I am

    actively in a flare than when I am not. I have begun to

    realize that these self-destructive impuses are more driven

    by my body chemistry than they are reality. When I start

    to feel hopeless and angry and blaming towards myself, I

    check where I am physically, and ask myself if I would be

    thinking this if I were feeling better. At first, I had to

    figure this out when I was feeling better, because all that

    nasty chemistry that was whirling around in my head would

    convince me that no matter how I felt physically I was

    still (fill in the blank w/something unkind to self). BUT,

    I found when I was feeling better, that simply was not the

    case. Soooo...I wrote this in BIG letters in my notebook

    so I could remind myself when I was feeling lousy again -

    WHEN I AM FEELING BETTER PHYSICALLY I REALIZE THAT I AM A

    GOOD PERSON DOING THE VERY BEST I CAN! I MUST NOT BEAT UP

    ON MYSELF WHEN MY BODY IS DOING ENOUGH OF THAT ON ITS OWN!!

    to use as a reality check. I hope this can help to be your

    reality check. You are a good person doing the very best

    you can to cope with some of the most frustrating disorders

    on the planet! You are having a rough patch, but there are

    times when you are better, and there will be again. It is

    hard to have things so out of control. We all feel this

    way, I am sure of it. Please try to find a way to be extra

    kind to yourself today. Sending fibro ((((((hugs))))))

    your way - Kim
  17. Summit

    Summit New Member

    For a reality check.......I beleive anyone of us here on this forum could have written your post, at some time or another. We do have compassion and understanding for you (been there, done that, ya know!) I just came from the doc's today (a 2.5 hr. drive) to get cortizone shots in my shoulder. (I did not have an appt) but after a week of sheer pain and agony (not to mention No sleep) I had to do something, cause nothing I tried even helped alittle. Now, I am sore (mostly from needle injections, about 8 of them) boy, do they hurt! But, within acouple days, at least I will be able to function again. As for my arm anyways. And, it has left me drained an tired. My only suggestion to you would be to schedule your tasks in smaller sessions. Do alittle at a time, so you are not overdoing. We can't go back in time (and be our old selves) so we have to find new ways of doing things. I hope you are feeling better very soon. I think it's wonderful you want to make your son a costume! Take care
  18. Seeseaisme

    Seeseaisme New Member

    Ditto to all the posts above. My thoughts earlier tonight were on the lines of "Man plans and God laughs".

    He has one outstanding sense of humor!

    I have been through many terrible events in my life, thus far, but never alone. The Lord was with me.

    I'm feeling tonight, what you felt when you first posted this topic, but I'll make it through and so will you.

    Lots of caring thoughts sent your way - Charlotte
  19. Callum

    Callum New Member

    You were feeling "well", you got caught up in your son's excitement (and how can you say no to the brightened face of your special one, right?)

    I used to do this all the time. Now, I just do it every once in a while. Recently, I walked home from downtown Chicago. It was one of those incredibly beautiful days - 70, sunny - a day that makes Chicago one of the most beautiful cities in the country. And, of course, I'd been feeling great for weeks. So, I slapped on some sunscreen, and walked 9 miles home, most of it along the lake.

    When I was healthy, a nine mile walk would have been on the short side. Of course, this time, it started a week-long flare.

    Sometimes at work, I'll do something I know I shouldn't - like stand and file for an hour - because I've been asked to, and it's "my job." What good am I if I can't do what is asked of me, right?

    Don't beat yourself up too much, Suz. That will only interfer with your recovery. You did what you did out of LOVE, and because you are ill, it had consequences. Now it's time to give yourself a little of the nurturing.

    Hugs,
    Callum
  20. Liz919

    Liz919 New Member

    I think everyone here has been there before. Personally I've contemplated burning every picture I have of myself before I got sick. They're all of me being active and doing the one thing I ever loved doing. Even just thinking about it makes me tear up. I used to have a myspace and a facebook account (both are social website things) but I'd just go and look at my old friends pages and read about all the fun they were having and all the things they were doing and I'd break down and be to depressed to even move for at least an hour. I've just stopped communication with anyone who isn't sick. IE anyone who isn't one this website. My current defense mechanism is to ignore it. Just ignore all the things you'd like to do. Ignore everyone who's getting to do all the things you'd kill to do but don't really get how lucky they are. It might not be completely healthy but it's a way to get through the day.