Discussion in 'Fibromyalgia Main Forum' started by meditationlotus, Sep 7, 2005.

  1. meditationlotus

    meditationlotus New Member

    Hello. I haven't posted here in a long time, but wanted to have some validation. I have CFS and POST-TRAUMATIC STRESS DISORDER.

    As we all know, CFS is highly misunderstood by the vast majority of people. (I think that the name should be changed to reflect the true nature of the illness.) I, like most of you, receive very little emotional support for this illness and that can be so painful.

    I was told this weekend by my father that people wonder how I can be disabled and still be able to take a vacation. Also, he said that 3/4 of the secret to having energy is not waking up in the morning with a !*!* attitude. This was said in a conversation that started with me expressing my fear of becomming homeless. (I can work a little, but not fulltime and this makes it almost impossible to get dissability, and I am not in a position to not work at all.) I earn so little that the amount of my social security is going to diminish substantially as the amount you can earn is readjusted every 5 years based on your income.

    Needless to say, his comment broke my heart. Later, he appologized and said he loved me very much and didn't want to hurt me. This I appreciated, but his comments reinforced this PTSD response which comes for years of psychological, physical, and sexual abuse. (He did not sexually abuse me. My mother did.) His words have knocked me so for back into the darkness of my psyche, and I have no money or health insurance, so psychotherapy is out.

    Plus, recently (July) my mother died. I found out a few months before her death that she had disinherited me.

    I had tried for years to heal my relationship with her. We had become very close (I thought). We talked to each other on the phone every day, told each other how much we loved each other. But in the final days, she had to hurt me. She had the exact same experience in her life with her mother, including being disinherited by her.

    Also, I tend to be a highly intuitive and highly sensitive person, which is very draining if what I feel intuitively is of a negative

    This is all causing my body a great deal of stress.

    I just wanted to be heard.

    Blessings to all of you.

    [This Message was Edited on 09/14/2005]
  2. TeaBisqit

    TeaBisqit Member

    I'm sorry. My mother often tells me she "pushes" herself, so why can't I. And it's like, there is no pushing with this illness. There's nothing there to push. They'll never understand because they don't have it. My Uncle once told me that only depressed people get sick. Well, I wasn't depressed until I got sick! They just don't get it, they don't understand. It's more debilitating than alot of diseases, but because we have no blood test and a crappy name for it, we're treated horribly.
  3. Juloo

    Juloo Member

    ...if you had children or not. If so, make a vow NOW that this pattern your mother experienced and passed along to you will not be repeated if you can help it.

    I would recommend EFT (Emotional Freedom Technique). Their web site includes a free manual that you can download, and you can sign up for emailed newsletters (and read past one on the site). Please be aware that I am NOT suggested that your pain, PTSD, of CFS are 'in your head'. I've experienced EFT being used on me and also have used it on myself and had some really great results.

    In one case, I had been dragging around the emotions dealing with my mother's cancer and death. It seemed that every thought ended up back at this point, even when I was purposefully trying not to have this happen. I had one five-minute session and now I very rarely think of it or get the chest-clenching, knee-weakening reaction I used to when I would have flashbacks to those times.

    If you can find someone that has them to make them for you, the DVD collections that the EFT site sells can be copied and given away for free for up to 99 copies. Or, find someone close by and pay for just one session with the understanding that it will be a teaching session. Then you can do this on your own.

    I understand what you mean about being highly sensitive. Sometimes I just want to wall myself off. Too much input (expecially of an emotionally negative or energetically chaotic nature), and I'm DONE.
    [This Message was Edited on 09/07/2005]
  4. NyroFan

    NyroFan New Member


    I also wish our diseases were taken more seriously.
    All in all: I ignore people who do not believe
    about CFS-FM. Even with someone close. Years ago that was the hardest for me. I got dumped because I was sick.
    He told me I was just lazy and I showed him the doctor's report and he said th doctor was a quack and just going along with me.

    Yes, diseases calls for lots of trouble for us interpersonally.

    I hope you work the problem out. I am rooting for you.
  5. regie

    regie New Member

    I am so sorry. I would love to help you and make you feel better. Remember, we all love you. I hope that you know that God loves you and that he put you on this earth for a purpose. If you like to read, I would love for you to read, The Purpose Driven Life. It is fantastic. I too am in extreme pain and I certainly have my low, low periods. I will be thinking of you and I am sending you my love and understanding. God Bless You always.
  6. pearls

    pearls New Member

    Being sick is a very good reason why we are depressed, though true clinical depression can be very serious and even life threatening, especially in those with something like FMS or CFS. I think depression can also be one of the triggers, which together, add up to FMS/CFS. It is a vicious cycle.

    The stupid name that has been affixed to Chronic Fatigue Syndrome is but one of the many reasons why it is so difficult for other people to understand what ails us. Gee! "Everyone is fatigued!" "Go home and get a life!" (This last one was actually said by another medical doctor to one of my pain doc's patients! Chronic Fatigue sounds like malingering!

    It appears that your father is trying to help you, but he doesn't understand that this kind of 'help' does not, in fact, help. How can he? He's not experiencing it and he cannot see it! Please do a Google search and find Dr. Devin Starlanyl's website. You can find some articles she has done in support of FMS and CMP, which may be helpful to you, as well. One of them are meant for people who love us.

    Also, Dr. Starlanyl's books are worth every penny you can scrape up. One is especially helpful to your situation even though the name may make it sound like it doesn't have much to do with chronic fatigue: "The Fibromyalgia Advocate: Getting the support you need to cope with fibromyalgia and chronic myofascial pain syndrome." Articles like, 'Perpetuating Factors,' 'Coesisting Conditions,' 'Becoming Your Own Health Care Manager,' a whole chapter on 'Fighting For Your Rights,' another whole chaper on 'Dealing With Your World,' and 'Arm Yourself with Documented Information' are all worth the expendenture.

    Best wishes,

    [This Message was Edited on 09/07/2005]
  7. rileyearl

    rileyearl New Member

    Our blood families can be so toxic. I nursed the switched-at-birth explanation for years.

    It sounds like you are really in touch with yourself, as well and others. What a gift you have. You will be able to sort things out and know what you need to do to take care of yourself. Do you keep a journal? Sometimes I end up writing down which path to take almost without conscious involvement. It's like channeling a higher power through my pen or a written answer to a prayer I hadn't voiced.

    I'm sorry it's so hard. I know you will land on your feet! Take care!

  8. meditationlotus

    meditationlotus New Member

    I have always been so afraid to reach out - afraid that I will be further rediculed.

    All of you shared my pain, gave me good directions in which to go, and, most of all, lifted my spirits. I feel so loved.

    Thank you so much.
  9. meditationlotus

    meditationlotus New Member

    I have heard of the book and will read it. I may have to detach from my Dad, I don't know. I know he loves me very much, as he was crying when he apologized. He has a hard time accepting me when I'm down. His family never accepted anyone when they were down.

    I do feel that this is an extended family. All of you have been great.

    I also have preminitions in addition to the sensitivity. I don't mind the preminitions when they are good, but when they are negative, the PTSD takes over. I have learned that there is a certain pattern to these preminitions, and when they come to me in a certain way, they always come true.

    So it is a challenge to learn how to deal with these, but all of you have provided me with such support. You are a great family.

  10. meditationlotus

    meditationlotus New Member

    Thanks so much for understanding the sensitivity. You do sound so much like me. Thanks for the validation.


  11. meditationlotus

    meditationlotus New Member

    I have is blaming myself. When the PTSD starts, guilt and blame kick in and it is so very hard to talk myself out of it. It is very hard for me to believe the I didn't cause everyone's suffering. Of course, this was part of my childhood abuse.

    I had come a long way to overcoming this, until the surprise from my mother before her death. So, I guess God is saying, you have more to heal.

    All of you have been so great. Thanks so much.
  12. meditationlotus

    meditationlotus New Member

    You are so right about the guilt. And in today's world, guilt is used so casually, as most don't want to accept responsiblity. That is hard for us who have guilt complexes. I will read the book about highly sensitive people. My sister told me about it and says that it helped her so much.

    Blessings to you.
  13. orachel

    orachel New Member

    I was diagnosed with major depression and PTSD about a year ago due to abuse (mental and emotional) that I was suffering at the hands of my boss. Crazy, that I stayed in that position for so long and let him literally drive me nuts, but I did. Flipped out one day at work, left for leave of absence, and started major therapy (mine was covered, thank goodness). All of the depression and panic symptoms were so uncharacteristic of me, it was like I changed overnight. I was a total and complete mess over it for about 6 mos, scared all the time, unable to work, etc.
    Finally, they fired my boss when the "investigation" into his behavior was ovr, and I started to heal, and feel much better. Went back to work, and everything really returned to normal (though my husband always said that I was a bit changed after...never quite as happy or carefree as I was before). About 6 mos after returning to work, everything going fine personally and professionally, I woke up one day and couldn't move. The docs said I sprained my back, and it just never seemed to heal, plus started getting other weird symptoms (like face hurting). Finally, month ago, was diagnosed with FM.

    It does hurt when those you love most can't seem to wrap their heads around what we deal with...so much of my internal psychological pain is due to the IMMENSE feelings of guilt over the stress and financial burden I am to my husband. Then, he's a wonderful guy, but he tends to "drop bombs" on me when we're arguing....Like yesterday, we were arguing (and this is new for us..we never used to fight) and he said "I know you're really sick, Rachel...I haven't told you to get off your a** and get a job, have I?". Man, felt like he punched me in the gut, really.

    I guess this is something we all deal with. I guess part of what we go thru is contstantly trying to convince our friends, family, insurance companies, etc, that we're not just lazy bums who created a reason to stop doing all (AHEM!!!!) the things we LOVED before we got sick. I don't know...this is all pretty new to me, but I guess its our cross to bear in some way.

    My suggestion to you, and I REALLY hope you look into it, is that just cause you have no $ and no insurance, should not be the reason you're not seeing someone to help you with your issues. I saw a counselor (studying to be a psychologist) at a local university for FREE after something upsetting that happened to me years ago. Most colleges and universities have free psych services, and not only for students. These studying professionals need someone to study on, right? Also, steel yourself for some rejection, and pick up the yellow pages and call every womens clinic and psychotherapists' office in your phone book. I promise, one of them will be willing to see you for free or close to it. They see clients for free just like attorneys do.

    What I will tell you is that I was so FRAGILE AND PANICKEY and overall just flipped out when dealing with PTSD...if I had to deal with that along with this pain and fatigue, it would be a disaster waiting to happen. But you can recover from PTSD...it involves taking yourself away from the stressor and then working thru it with someone qualified. I promise if you call enough places and give them the lowdown on your story, someone will be glad to give up an hour of their time once to twice a week for free. But, the positive is that with some antidepressants and about 3 mos of therapy, I started to feel immeasurably better, almost overnight. Please promise me you'll try to find some help.

    All the best.
  14. lvjesus

    lvjesus Member

    everyone thinks they have the answer. It is not mind over matter, except that if you don't mind (feeling like crap) it doesn't matter.

    Would you tell someone with cancer it is because they are depressed and lazy?? Hey, if you would just get up and go to the gym and to work and quit laying around taking all the chemo, you could get better, you are just too lazy and are using that cancer crap to get out of work...

    Yeah, right.

  15. meditationlotus

    meditationlotus New Member

    All of you have shared your stories and feelings so well.

    I will consider therapy. The decision I must make is whether or not to continue with my family. When I decided about 15 years ago to heal things with my family, I didn't realize what disastrous results would happen.

    I also don't know what to do about finances. I can work some as a substitute teacher, but not enought to support myself. Attorney's tell me I must not be working at all to get disability. But I can't quit working. I cannot survive that way. And social security adjusts how much you can receive based on you income average. The past four years have been really low which means that I could end up receiving even less in social security when the gov't readjusts my averaage. And I could not begin to survive on what I would receive from the gov't through disability now. Either way, I am licked, or so it would seem.

    But I know there is a way. Any suggestions? Anyone receive disability while working part-time?

    I can't believe the cracks our systems has created. Thanks.

    And I will read the above suggested posts about not becoming a victim.

    Love to all of you.
  16. meditationlotus

    meditationlotus New Member

    I understand the conflicts with you husband. I try to give them permission to be human. I know our illness is hard for others to understand and at times, they may make statements that have an undercurrent of resentment.

    Just keep stating that you illness is real and that you need support and understanding.

    You certainly have my support and understanding. Employers can make you feel like crap, especially if they sense a weakness in you. You're doing better, and I so appreciate your support and understanding. Best wishes to you.
  17. orachel

    orachel New Member

    I'm a tad foggy and keep forgetting to check back in old posts to see if i'm ignoring anyone who took the time to respond to me! Lol...isn't that terrible? DD!!!

    Anyway, re: your first post in this topic....I just got something that might REALLY help you with issues with your Dad, et all. Its funny, because it was totally free, and came from this site! It's prohealth brochure, totally free. There's a link around here somewhere that offers to send you a free informational booklet re CFS and FM. You just type your email addy, and it sends to address you used when you setup your acct here. If you can't find it, shout out to me, and I'll make sure to hunt up info for you.

    Anyway, reason I think itll be so great for you (and what I'm using it for) is to carry with me, and when someone says something insensitive or idiotic, or expresses curiosity about why i'm limping or breathing hard, or whatever (cuz sometimes I am just not up to answering those questions! lol), I'll just whip it out and offer it to them to read. The best thing about it is that its a tiny booklet...only 4 small pages or so. It is the most compelling, concise explanation of our DD's, and incl studies re: reality of our condition, awful misconceptions some have about it, and how hurtful that is to us, and really goes into detail about how horrific the real pain and fatigue and suffering we sometimes deal with is, and lists clearly common limitations. Even says things like "many people who are struck by the debilitating CFS are incapable of working or participating in common activities of daily life. This is not due to depression or laziness or an unwillingness to participate, but is a chronic illness that has been proven to have very real physical effects."...totally just winged that from memory, but I just read it this morning. Anyhoo...just wanted to let you know, cuz I've been spending avg of 3-5 hrs daily researching DD in all sorts of ways, and this little brochure is most compelling and concise thing I've seen that explains the REALITY of what we go thru. Give it to your dad, and ask him to sit down with you for a moment and just take a look at it. Then ask him if he has any questions for you that you can answer for him. Maybe...just maybe...it might help. This little thing even includes a blurb about a guy named floyd who participated in a medical study re: innovative new brain imaging technique (he has CFS), and the imaging proved, without a shadow of a doubt, that CFS had caused or been caused by tiny little holes found all over his brain that were incapable of healing or being treated. I know a lot abt the DD, but that struck me as pretty darn convincing, no?!

    And finally, as to your advice re: my sit with my husband....things are much much mo' better now! I've really worked with him, and vice versa, and we've been struggling to learn about this together, and come to some sort of acceptance to what has happened to me (US!). Now we're at the stage where we're building SOLUTIONS to try to normalize our lifestyle (not that I've ever been what most call normal...I'm pretty much a drama queen, overall!). He would really like us to be able to attend a bbq for charity that his coworker and his family are organizing for Katrina victims. I'd love to go and take our 3 beautiful kids (and they're a handful! lol) because that is a weekend that we get to see them...yeah! We're strategizing together abt how to pull it off (i'm a real mess physically right now...we're looking for solutions for that, too!). He suggested finding me a seat in a shady place right off the bat, and bringing yard games to keep our kids (and others' kids) busy and happy, and bringing his coworkers to me, so I can meet and interact with everyone without over fatigueing myself, or causing extreme pain. He actually made me cry when he said he'd be happy to walk in to bbq with me on his arm even if I had to use a cane. I'm 30 years old, and he's understanding my limitations that much. He is truly my Wonder Husband!

    Sorry for the long update, but I was in major crisis with that when I first responded to you...I just wanted to update you a bit, and also give you a tiny idea of hope that it is totally possible with a little work (ok...a lot of work!) and some slight attitude adjustments on everyones' part, people can TOTALLY CHANGE THEIR TUNES and become super supportive Re: the "reality" of our limitations. Also, you really took the time and energy (and I know how limited it can be, too! LOL) to address my situation, and I really appreciate it! What a supportive woman you are!

    I'm so very sorry about the way you were left unresolved with your mother. My mother and I had an amazing relationship, but passed away very unexpectedly when i was 16. She was a single parent, and I was an only child, and we'd always been super super close....but right before she died we went thru a year of CONSTANT arguing and frustration, screaming and just all out bad. Neither of us could say or do anything that the other didn't find insulting. Then she died. Oy. So I kinda know how that feels. But I also know with all my heart that my mom knows (somewhere up there) how very very much I love and respect her, and it was just normal teenaged angst. I'm quite sure that you did anything and everything possible to really work to "rebuild" and "reconnect" to your relationship with your mom. People do stupid and thoughtless (and often even cruel) things all the time, and don't really understand the consequences of them, or even deliberately mean to cause harm or trauma to the person they're "doing" the bad thing to. It's human nature, and it sucks. Point being, I'm sure on some level, your mother really did love you deeply and respect the amazing woman you've become....sometimes we are simply compelled, as humans, to lash out at those who love us most, and even to repeat those horrific cycles of abuse and refusing to give/receive love in healthy ways. This, in my opinion, in no way shape or form means that the true inner LOVE for you wasn't always there...it was just incapable of being expressed properly or consistantly.

    Have you read "the highly sensitive person"? Its been referred to me here, and I've got it coming to me from the library. I understand COMPLETELY about your sensitive nature and feeling "in tune" with the vibe and attitudes around you...whether they're positive or negative. This book is supposed to be abt just that. Give a shout out or page me on the board if you want me to hunt up the exact title and author for you. The PTSD is real and just contributes to that whole painful (but sometimes beneficial) nature of ours...I've been thru that too.

    Much love and health and happiness to you!
    Anything I can do for you, just let me know!
    Thanks again!

    And PS>>>> If, God forbid, you arent able to find a free counselor or therapist, and I'm just sure you'll be able to... But if you're not...I'd be totally willing to share with you a whole slew of "coping" techniques and exercises that my therapist gave me to work thru PTSD. She gave me a ton of "emotional homework" LOL>...I think those exercises were the single most useful aspect of my MASSIVE improvement. Just lemme know if you'd like them, but if you do, we might wanna do it in a tiny bit more private forum like private chat room or personal email. Its pretty intense stuff, but you will feel IMMEASURABLY better for doing it, I'm sure.
    [This Message was Edited on 09/17/2005]
  18. kimikay

    kimikay New Member

    I so know what it is like to want and need validation. I have CFS. I agree that the name should be changed. The name alone does not validate the illness.
    It is very sad that your father made that comment to you. He clearly has no concept of what you are experiencing.
    I also can relate to having family issues. The pain has surfaced "big time" with being ill. I have had to slow down to feel the grief which has been indescribable. I have set clear boundaries w/my family which has helped. I rarely see my parents. It was one of the hardest things I ever did. Felt so much guilt!!! Always putting others 1st!!! I TRY not to go to people who can't give me what I need. (Much easier said than done!!!!) I think it is really healthy that you asked for what you needed on this site.
    I too am very sensitive and intuitive. I think those that are like us "feel more" of everything.
    Blessing to you.
  19. meditationlotus

    meditationlotus New Member

    Thanks for you understanding and example of how you set limits. I need to learn this skill.

    I have been reading two very goods books I check out from the library. One is "Anatomy of the Spirit" by Carolyn Myss which is a very spiritual look at how we lose our spiritual energy through handing it over to others, which makes it much easier for our bodies to become sick.

    I'm also reading another book called "Second Sight" by Dr. Judith Orloff. She is a psychiatrist who is also highly intuitive. She talks about her life's challenge to accept her intuititions and to use them constructively to inhance her life.

    I've also heard that "The Highly Sensitive person" is a good book. It was already checked out at the library.

    For sensitive people with very dysfuctional families, illness can very easily creep into our lives.

    However, I would never say that those are the only reasons for our illnesses, nor would I ever blame myself or others for being sick.

    When the human race can truely understand what love is, what a world we will be able to create.

    Thanks for your help.