Part of me, deep inside

Discussion in 'Fibromyalgia Main Forum' started by Didoe, Apr 21, 2007.

  1. Didoe

    Didoe New Member

    There's a place inside me that has already shut down. I dont know if this is from depression or from having had to deal with too much alone for too long. I dont know if its depression or its a result of going to doctors with the same menu of illnesses and finding disinterested docs more worried about insurance coverage.
    This year was nothing but endings, losses. We say every end is a new beginning, I'm still looking for the door out of the last difficult chapter.
    I'm writing this because I know someone will read this and see themselves also. I know because I read the flurry of posts and threads documenting questions on every ache, pain, mental and physical.
    I feel like I've already died. I realized what I've wanted to hear in the last 6 months is for one doctor to confirm what I already feel. I've been waiting for a terminal diagnosis of anything so the pain I have will have a deadline, an end.
    While I've been going thru the motions of working and doc appointments, its been on auto pilot. I have very little idea what's going at my office and could care less. The reality is I feel like I'm just waiting things out. I'm not ready willing or able to do the 'right' and selfless thing and go get involved with someone else's suffering so my own seems less. Grief, loss has overwhelmed me with paralysis. STillness avoids pain, further grief.

    Its an exhaustion from life that I find difficult to write or describe...I think unless I can change inside me or my living situation and stressess, and I dont know that I can, that all the meds, the vitamins, docs etc. will not solve the core problems of emotional and financial poverty that allowed FM to develop in me.
  2. texasmaia

    texasmaia New Member

    I know that "deep inside" feeling you have. I think many of us do, and just don't talk about it. There are days that I can cover it up pretty good and others that I can't.

    You said it's difficult to describe and yet I think you did it so well. I heard your soul talking to me. That is unique and wonderful. For me, I have found that writing is my best tool of release. I write letters to God sometimes or just to myself.

    What I wish for that you would print what you wrote and take it to your doc. It describes volumes!! It really does. I think if your doctor read this he would have a better idea of where to go to help you. Just my wish.

    Blessings and Prayers to you.
  3. sfrazier

    sfrazier New Member

    They say that Fibro is real and not just in our heads but sometimes what's in our heads is worse. it's called depression and while you can be depressed without having these DD's having them only makes them twice has hard. I told my mom the other day that life really sucks right now. Either i'm in this mind consuming pain or mind comsunming depression. Didoe I know excatly where you are coming from. I know where the depression from comes too at least for me. My whole life has changed in just 4 years. I went from working full time and coming home and cooking a meal for my kids and through in a load of laundry to this. now I can barely get up and a meal is sometime if they are lucky it's some type of meat. Most nights i just tell them it's whatever you can find. Money wise I went from not having a lot but being happy to having even less and not being happy. Living off child support that should be going towards my kids now goes only to household bills.

    Didoe everyone I think on this site is or has felt like you do at one time or another. you just have to hang on and believe that some days are going to get better then others. You have defiently know and feel what you have wrote and it will probably touch many people who have been there or still are there.

    I hope you find some peace but for now know that coming here and venting your feelings is just the place to vent because the people here are the greatest.....SueF
  4. Adl123

    Adl123 New Member

    I hear your sadness. Like the two writers before me, I have been there,too.

    I know that doesn't help. But what might help, is that, now I'm getting better. Little by little, with the help of my supplements, learning to say "no", my acupuncturist and the development of a spiritual way to use the pain, things are gettng better. At least now I feel like my life has a purpose.

    Your last sentence concerns me. You seem to indicate that there is something lacking in you, and so you are sick. You sound as if you feel that it is your fault. Please don't think that. It isn't your fault. FM ,I think, is physical, and shows itself emotionally, as well. That is true of all illnesses.

    There is nothing weak or empoverished about you. In fact, quite the contrary. You are strong, and a survivor. Otherwise you would not have written. The way I look at it, having a physical illness that can affect us emotionally, is far better than having some other illness, like a mental illness that can cause a person to go out and hurt other people.

    Please keep on trying. Somewhere, there is a doctor out there who will help you, and understand. Your profile is not filled out, so I can't tell where you're from. Where are you from? Maybe someone knows a good doctor in your area.

    Meanwhile, keep on trying, and live one day at a time.
    Hugs and prayers,
  5. fmfriend

    fmfriend Member

    and then I openned up and you had written it for me.Much more eleqently than I could have anymore.

    I think the shame is that we dont talk about it here and it needs to be shared like every other part of this DD. I feel as though it is discouaged from being brought out into the open. It is very much a part of this DD.

    I am having one of those many days myself today and I have absolutely literaly no one to turn to. I am so,so alone in this illness.
    I tried going to a "Posative FMS suport group" meeting and I thouht am I in the right place? These people cant relate to me.She lives in a gated community with a big beautiful house. Not a financial care in the world.Her husband is a professor.She works,travel,has lots of freinds and social teas,parties,very active and everything she could possibly want.Everyone else there was in a similar situation. Moving around carefree,lively as can be, no sign of brain disfunction,quickly recalling whatever needed to be.
    no limping,grimising pain like me.
    I walk with a cane, when I can walk and wear a back brace. I wish I could work,wish I could interact socialy without searching for each word sounding and feeling like an idiot that I know Im not. My brain function has deteriated tremendously in yhe past year since Lyme.

    My husband just went to go sell his lawn mower to buy some meds i need.I KNOW she couldnt understand that. Mabey alot on this board cant relate but this is pat of some of ours reality that is part of this DD that should be brought out here and should be respected. Just because its not pleasent to talk about and deal with is no reason it shouldnt be. Its like every other part of this disease.

    I have a husband,and a 10 and 12 yr old and I feel like it would be better for them if someone else were here for them. My husband needs someone to take care of our finances for him because he is absolutely clueless and doesnt want to change.
    Talk about loss..We have gone through two bankrupcies and lost three homes and if it weren't for his lack of ability,motivation for change and lack of vision it wouldnt have happened. And now I CANT work 3 jobs like I did before. I keep buying the paper and looking..Why because there sometimes is a seed of hope in me. Ive always been an over the top optomist.Now I see no light at the end of the tunnel.

    Ive had to imagine my family die all togather in a plane crash because they are dead to me. They ..for their own disfunctional sick reasons tried to have my children taken away from me saying I was too sick to care for them. Imagine THAT! I have no idea if my mother is alive or dead and honestly dont care.I just hope they all stay away.They caused me so much post traumatic stress it is unreal.Thats one reason we lost our house. It was for sale because we were trying to get away from didnt sell fast enough and they had threatened our lives so we gave up my dream house for the safty of my kids.

    How many of us go through things and have no one to turn to because this disease is so isilating?

    Last year I became dramaticly sicker when I as bitten by 21 ticks,5 at one time, had 5 rashes, developed that spinal headache menengitis,had active mono at the same time,finaly went to a LLMD a was diagnosed with many tick born diseases.

    So now I cant afford tratment, Im getting sicker and sicker as the days go by and have no help.My life is slpping away. And like you I wish all the time I would have a termanal illness so I wouldnt have to do it myself.

    I too sit here in financial poverty(on Husbands payday we are-Negative $191 and we fall throuh every financial crack because he make to much),poverty of spirit,exhausted,stressed beyond what I can bare and no were to turn.

    Thank you so much for writing.And so timely for me.
    Please lets not keep this part of this DD undercover anymore. We need to be able to share,and care for one enother.Its only by venting this grief,frustration,loss,ect.. that we can even hope to feel a little better.

    Hugs~ Sally
  6. Didoe

    Didoe New Member

    I hear you.
    This isn't simple depression, this isn't solely about seeing a shrink for 6 months and listening to,'hang in there, you can do it, you're strong, you have to be strong' and all the other platitudes that get thrown at you after a session and you pay your fee.

    This is about life. What we expect, choices we make, people's callousness and carelessness, about how we take on too much, assume responsibility for lives of people who don't want to live fully or with integrity. Its about blame for you react to a crisis as if we should shrug things off, get on with life, ignore what we can't fix...somehow things will take care of themselves. Its about always being second took the left road? You should have taken the right one. Everyone's an expert about mental health while listening to very little about how you got to where you if your illness(s) happened in a vaccuum. All these experts and we are surrounded with people in pain, unable to work and function.

    The fact is no one is blame and we all are to blame. How far back do we want to go? We can only blame parents, circumstances for so much...we choose spouses for reasons we aren't always aware of...its only later we see what we selected to spend our lives with and have to endure.

    There isn't a pill to fix what's bothering me...a pill and a session with a shrink isn't going to change being without family, and after what I lived thru this year, completely distrusting people, a lifetime of choices that seemed right and turned out to cause so much damage and pain, choices made starting in childhood and often to just stay alive. There's no 'Secret' in my mind, there's a clear and obvious matter that the clock is ticking and those of us who did try, who worked, went to school, cared for families, were just never in the game and never will be.

    Luck of the draw...fate...who knows and when you count it all, what does it matter...for me its the process that so painful, not the ultimate poverty--the constant losses no matter where you put your hand to work or heal. I dont have answers anymore.

    We don't discuss these things because it makes people uncomfortable and feel helpless. We want help, want to believe tomorrow will be better, would like to help others...we need to live with that illusion. But after hearing these things for a lifetime, it wears thin when the truth of how your life IS, inside the 4 walls you live in doesnt seem to change no matter how hard you try.

    I dont have a prescription for you, but you have 2 young lives depending on YOU, as clearly your family cant depend on him. Try to sort out some options for your kids and yourself before choices are forced on you and them.

    best to you...

  7. jole

    jole Member

    I feel so badly for you right now. I have been where you are, feeling that this disease has sucked the life out of me, and left me a totally empty shell that is here only as a pretense. Lots of times I feel that. There is an emptiness that has nothing left to give - no love, caring, etc. because it takes every ounce of my energy to just keep alive.

    BUT I believe in God, and I believe that our time on earth is a test. We can pass this test or we can fail, it's up to us. It has nothing to do with money, position, etc. It has to do only with self. We have been given the toughest test of all - the test of finding good out of a no-win situation.

    I am trying daily to believe there is still good in me, and that I can leave a little of that behind. Even if it is just in the form of a smile. Sometimes even that much is very trying, but it is a start.

    I hope you have something/One to believe in because that's what keeps me going. Best of luck to you, and yes, I do understand and will say a prayer for you if you're not offended by it.

    Friends - Jole
  8. Didoe

    Didoe New Member

    What you wrote I was too ashamed to write--because to say it, especially to a 'professional shrink' or a doc, they figure its just another dimension to being ill..
    focusing on religion instead of being merry and filled with Hope (note the capital H please)for another cwap filled day.

    Belief in G-d is the only thing I have keeping me doing anything now. I have to temper myself with such effort not to wonder what life long 'test' I am so blessed to have received or cannot pass that the test goes on and on and on.

    Whatever happened to the pass/fail system? You see other people taking the same 'course' and getting good grades (jobs, family, Stuff) either I didnt get the right textbooks for the course or my FM issues had me reading the course material backwards. such heresy...I slapped myself for all of us.
  9. I hear you, I really do. Mine isn't even too far deep inside. Today is a gorgeous day, all I did was bend slightly to use the shop vac and OMG my back hurts so bad, my knee hurts and even though I am exhausted, I won't be able to sleep tonight. I can't work in the yard anymore, let alone its hard for me to walk. I can barely keep up with my housework, laundry, etc. Somedays I don't even care. I go to drs. and they give me yet one more pill that doesn't help all that much so they give me something else to try. Are we depressed UH YES, DUH! How can anyone being happy living with fibromyhe$$gia. A dr. once told me you have to be like Rocky, you just keep getting knocked down but you have to keep getting up. It gets harder and harder doesn't it to keep going.

    They say God has a plan and purpose for everyones life, but I can't figure out why he picked me to live with this pain day in and day out.
  10. jmq

    jmq New Member

    I am so not equipped to answer you with any amount of intellegence or comfort. I just know that I have connected with you over this unusual cyber space place and time..and you have touched my soul and helped me many times. That is one reason that you are here..

    I was raised "very" catholic ...almost considered entering the convent until I woke up as a teenager and realized I was meant to do other things!! I now do not have much to do with any one religion but I believe VERY much in God...or that higher being. I also read a book years ago..before I was even sick, that made sense to me and gave me a new way to look at, its not "the secret" or some other self help book. It is called " Many lives many people" by Brian Weiss ( I think that was his name?). I will not get into it here ...but it explains why some people just get all the ^&*( in life. I know how hard it is to read anything in our state of emotional and physical pain...but if you can, it is an easy read. It just gives you another perspective to think about.

    I think by sharing your deepest and most painful feelings here you are helping those that are afraid or too depressed to write the words. That is a gift you have shared with us many times. I am praying for you and hope things turn around soon.


  11. kellyann

    kellyann New Member

    Yes, I see myself.....part of me down deep inside feels as if it has died already, and the rest is slowly following suit. I just hurt so bad all over, my hands hurt in every knuckle and burn, hips, shoulders, knees, elbows, all hurt and burn. It is constant and severe, and I am going to lose my mind soon! I have a 3 year old and a 6 month old I have to care for daily and I don't know how I can keep it up. The 6 month old is my grandbaby, long story as how I ended up with her, but she keeps me up all night crying, I think I am going to go crazy. I don't get enough rest. I have Lyme Disease and I hurt so bad.

    I know how you feel.....

  12. Didoe

    Didoe New Member

    If you're still here, you need to reach out to get help ASAP.
    In NYS there's a program for parents or those caring for toddlers where they can drop off the kids in an emergency just like yours, with no prejudice, specifically to take a break rather than injuring themselves or their children.

    Please see if your local church or county has a similar program. We're all feeling like shet but remember how it was being tiny and helpless when adults hwo should have didnt protect us from abuse and violence. Whatever pain we have now, children dont deserve to suffer from it. A baby who cries endlessly is crying for a reason, either illness or sensing something is wrong. Please try to get some help.
  13. Debra49659

    Debra49659 New Member

    Didoe...a few days past a post was started about a personal statement. I have been working on mine and I must be honest, it is very hard for me to see what I've become. I am a shadow of my former self and a burden to my family. It hurts my heart that I will miss out on soooo much because of this syndrome. I can not be positive all the time, today is one of those days. When I read your post I logged off immediately, then cried because what you wrote is so similar to the internal pain that I feel as well. I thought that I could just not respond...not acknowledge your post then I didn't have to think of my own pain today. But I'm glad I did, my husband saw me cry and asked why and we talked about my depression and why I feel this way. I thank you for posting because since you posted I recieved a helping hand and a few kinds words that won't make the depression go away but it did help today. I hope this makes sense...I am having a really hard day. So again I thank you for your honesty. I hope that you will feel support from your friends here, and that you will also feel at least a little better for sharing your pain and letting someone else help you hold your pain for awhile.

    Bless you,
  14. Didoe

    Didoe New Member

    Your post brought tears
    I dont write to cause anyone pain...writing is my work, my life, it keeps me alive.
    That you found relief, love, and comfort, that is also for me a relief and comfort.

  15. Debra49659

    Debra49659 New Member

    Didoe you are wonderful and an inspiration to many of us here. You are truly a brave person, I am so thankful to have read your post. Because you could share your honestly so did so many others that hate feeling helpless and alone.

    When we have nothing we have each other!

  16. FibroPainSufferer

    FibroPainSufferer New Member

    I noticed that by the time the weekends come around, I’m not only physically but also mentally exhausted & depressed! I go to work & try to look normal & act as pleasant as I can. When in reality, I’m struggling to not limp, walk around without showing the pain on my face or snap at someone. I’ve heard people talk around my office about me & have been told that I need to watch how I say things because many times I come off in a bad way. I just want to yell out to everyone “YOU live everyday of your life with pain, aches, headaches, etc...and let’s see how well you handle it!!!” I went from looking forward to the weekends because I could go out & have fun. Now, I only look forward to them because I can lay down & rest all day and not have to act & look like I’m okay.

    I think also about my life now & my this the way the rest of my life is going to be like & if so, can I continue it? Adl123 mentioned learning to say “no” to things now but that only backfired on me. Once I started telling my mother & sister that I couldn’t go out with them everytime, they stopped asking me. The excuse my sister gave me was “I don’t want to go out & take the chance of having to take you home early” So they no longer ask me & I’m afraid to try & make plans with friends because the same thing might happen. This only causes my depression to get worse!!! Like Fmfriend, I am also alone & now have no one to turn to either. My family believes that this is all in my head so about three weeks ago my sister said she wanted nothing to do with me until I get help...I’ve been seeing the same psychiatrist for over 11 years now, what more does she want & where does she think the money is going to come from??? I’ve tried to be positive but since I lost my family it’s really hard to do that now!

    Thank you for bring this up! It was like a few of you read my mind & wrote down how I've been feeling!
  17. Didoe

    Didoe New Member

    People who are all the things you list Debra dont live alone in 2 rooms with a broken life.
    Bravery would be to stop grieving and get out there...but I'm frozen. Oprah has broken people on all the time who got over it and help others, those of brave people.
    Even leaving the house now is terrifying because of things that happened this year. I walked into one docs office and the first thing he asked was if I have trouble breathing...It seems I hold my breath and dont breathe very much, anticipating an attack. Its like being on alert for danger 24.7
    I walk holding on to my own coat sleeve..,this started about 3 months ago. and i only noticed it because as soon as i leave the front door i feel myself grabbing onto my a child would grab their blanket. I sleep with my cell phone and wallet under my pillow. I'm preparing a box with all my important documents in case I have to escape suddenly. And I see it all and it seems a bit odd, but it makes sense because there's not a bit of security or peace in my life and i'm trying to put that in place.
    I had surgery on thursday and i scared the ansestheologist when he woke me and i screamed and tried to run (off the surgery table while half drugged with a line still in my arm) because I thought i was being attacked

    I suppose I shouldn't be outside looking in on my self, but rather more integrated with my own emotional issues than in my head analyzing them...its like watching a sports match or the money cage at the zoo. i dont know how anyone would take these things and knit them together...a life that is all so unraveled and worn out
  18. Didoe

    Didoe New Member

    this specific track has neil young singing
    but i'm posting it for all of us mothers, gradnmothers, with or without our children, we are all 'on the road' to somewhere

    Crosby Stills Nash & Young - Teach Your Children

    You who are on the road
    Must have a code that you can live by
    And so become yourself
    Because the past is just a good bye.

    Teach your children well,
    Their father's hell did slowly go by,
    And feed them on your dreams
    The one they picked, the one you'll know by.

    Don't you ever ask them why, if they told you, you would cry,
    So just look at them and sigh and know they love you.

    And you, of tender years,
    Can't know the fears that your elders grew by,
    And so please help them with your youth,
    They seek the truth before they can die.

    Teach your parents well,
    Their children's hell will slowly go by,
    And feed them on your dreams
    The one they picked, the one you'll know by.

    Don't you ever ask them why, if they told you, you would cry,
    So just look at them and sigh and know they love you
  19. desertlass

    desertlass New Member

    for many reasons-- any one of which would knock the best of us off our feet. Don't compare yourself to anyone else.

    I'm not depressed, but have felt the same, and probably will again, and probably soon. Sometimes I am able to distract myself from this grief by "doing" all kinds of things aimed at making myself "better". If this causes someone anxiety, don't read this thread. I don't need your help, so don't worry.

    After looking at this whole thing from just about every angle, I just feel like there's no plan, no test, no "all for my own good" benefit. This affects more people than just me.

    For me, the place where I saw God show up was just now when you all were reaching out to each other. Didoe, you felt like you didn't have it in you to get involved with anyone else's suffering, and yet look at everything you posted to KellyAnn. Amazing.

    God is also in your grief, in your feelings of being forsaken, in your "waiting". We don't always have to be doing something or moving forward or following some program. You seem to be existing in some state of grace, in fact. You are totally aware of how you feel, how deep your sense of loss goes, and you are not hiding it. Your body is reacting like any normal body would-- run like hell! but somehow your mind has been able to stay with this thing as brutal as it feels. I find that remarkably brave.

    You don't have to fill in this hole you feel right now. I somehow sense from your words that you will survive it. But someone told me once, "The deepest part of you is not your pain." That gave me some dignity, so I offer it to you.

    Whatever kind of night you have, it's yours. I hope it's a peaceful one.

  20. wrthster

    wrthster New Member

    That was really well written. And you are right, rarely ever discussed on here. I think everyone on here at one time or another has felt this way and it really hit home with me. Thank you for posting this and I really hope you keep fighting and feel better soon. It is a day to day struggle for me because I have suffered since early childhood and am now 37. So I know exactly where you are coming from. All of us are here for you, so just remember you are not totally alone.

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