I found an unexpected benefit here!

Discussion in 'Chit Chat' started by Pippi1313, May 5, 2009.

  1. Pippi1313

    Pippi1313 New Member

    Hi All!

    I just had an amazing personal revelation.

    One thing that has been a major source of resentment since I got sick, was the glaring reality that nobody understood me. Nobody.
    Spending weeks on end in hospitals, made it obvious that the doctors & nurses understood least of all.
    My family (bless 'em) doesn't want to understand. They just want me to be well.
    Friends don't wanna hear about it...

    So I was never able to talk about it, deal with it, & get past it.
    My resentment grew to epic proportions. It factored into every aspect of my life. Since I wasn't acknowledging it, I wasn't fully aware of how huge & toxic it had become.

    Just a few minutes ago, it hit me...
    When I'm on these message boards, I don't feel any resentment! I mean, I'm so distracted by understanding & companionship, I forget my resentment!
    WOW! I haven't been resentment-free in SUCH a very long time! And I didn't even realize I had become so thoroughly resentful until after I was stuck in it.

    Six short days ago, I found this place & you people. I was rather tentative at first. But then, for the first time ever, I knew I was understood...

    I never saw this coming. I didn't know it was possible. I found a safe place!

    I'm sitting here typing this, in complete amazement. And I know that even if I don't say this just right, y'all understand that too.

    :) Thanks!
  2. rockgor

    rockgor Well-Known Member

    Glad to hear the good news. Kinda like the message in the hit song from the Great
    Depression: I found a million dollar baby in a five and ten cent store.

    I'm pretty much depressed and angry most of the time. The board is both a therapeutic
    visit and a social outlet.

    Write and tell ProHealth. They'll be glad to hear from you.

  3. jole

    jole Member

    I had to smile at your post....you sound just like I felt when I found this board 6 years ago. Great, isn't it? Family and friends all wrapped up in one place***Jole***
  4. Debra49659

    Debra49659 New Member

    I love this board as well. Whatever I am missing...whether it be friendship, compassion or a shoulder to cry on. I find it here:)

  5. fibromickster

    fibromickster New Member

    You are so right, this is the most wonderful place to be. No one judges you, they all accept you for who you are and that is it.

    It has been my saviour for a while now and I can come here when I am sad or feeling lonely and everyone just perks me back up.

    Love it!!!!!!!!!!

  6. Granniluvsu

    Granniluvsu Well-Known Member

    I feel the same way as Mickey. Everyone is so friendly and understanding, I think so especially because they are going through a lot of the same feelings you are - medical personal, etc.

    You all are my THERAPY !!! It also helps to keep my spiritis up esp since I have had all this for about 25 years.

    Hugs and blessings,

  7. Pippi1313

    Pippi1313 New Member

    Today I was all disgusted & frustrated from having to deal with the health-scare-system, was late getting back to the "sky cave" (my apartment), I'm in pain, tired, etc etc...
    And I came here & saw your responses & smiled for the first time all day.

    Y'all rock!

  8. Mikie

    Mikie Moderator

    Glad you find so much here. I've been a member a long time and this board has helped me heal emotionally, spiritually, and physically. Our members are some of the kindest and most caring people I've had the privlege to have met. And, yes, they are the only other people who know how we feel or what we go through in our lives.

    I came here scared, angry, and resentful too. It's part of the grieving process we go through. It's normal to suffer denial, anger, depression and, finally, acceptance as we grieve for our former selves and our former lives. Progress isn't linear. We can slip back into any stage of grieving at any time; however, as we proceed, we spend less and less time in anger and resentment and more and more time in acceptance.

    Acceptance doesn't mean giving up or giving out. It just means we are ready to put anger and resentment aside so we can work on healing. This board is great for all the love and support our members give to one another. The Fibro/CFIDS board is a great place for info on what is helping others. Everything which has helped me heal physically is something I heard about on the other board. I come here for the friendship and caring our members give to one another.

    The love and caring we give and receive here are every bit as important to healing as anything else we do. I also use prayer and meditation to help me get "centered." We may not know the reasons we get sick with such debilitating illnesses but I do believe there is a reason for everything. The silver lining for me has been meeting all these wonderful people and the spiritual growth which has come with dealing with my illnesses. As I've started to heal emotionally and spiritually, I've also been able to do some physical healing. I have a long way to go but I've come a long way from where I once was. Progress is slow. For now, I'm just glad you found us and the kindness and love that the members here provide have helped you. My thoughts and prayers go out to you.

    Love, Mikie
  9. 3gs

    3gs New Member

    Here! Here!

    This board has been a life saver for me also. Found it last Aug. when I got my first computer.

    People that understand and spell cockeyed like I do now! Funny to read posts that make no sense to normals but we understand them.

    nice to not be alone
  10. Pippi1313

    Pippi1313 New Member

    That's what I call an "organ recital" - reciting the full list of which organs are affected, & thinking strangers will be fascinated.
    Those peeps (usually on the bus & in a loud voice) think the world wants to hear the details of their latest medical procedure, or a list of all their aches & pains, or a full accounting of all their meds. UG!

    I've been aware of the "organ recital" since I was a little kid, & I swore I'd never become one of those peeps.

    Ditto on the zero tolerance!!!
  11. bigmama2

    bigmama2 New Member

    and welcome! yes, it is so great to have people who understand what it is like living with a chronic illness. this site is so helpful in that way. i hope you get lots of understanding and compassion and occ some laughs here.

    ive been on this site for about 2 or 3 yrs. i am lucky to have several supportive family members. my mom, my brother. my bro also has CFS and severe depression. between his illness and mine, our family has been thru h___ together. but luckily my bro and i have both improved in recent years. (i was semi-bedridden for a few years. that was a blast---NOT!!!)

    question for you pippi. if you dont want to answer--no problem! do you have CFS? FM? or other? i think i saw you write once that your illness wasnt listed on here, so i was wondering what it is. whatever it is, best of luck to you in coping with it, and hopefully healing.


  12. Pippi1313

    Pippi1313 New Member

    I have a neurological autoimmune disorder. It's a rare disorder, but I have a definite dx. The best way to describe it, is it's very similar to MS.

    The only reason I don't say the name of my disease, is because most of the "information" I found on the net, is absolutely incorrect.
    My doc admits that very little is known about it, beyond emergency intervention & stabilization during a crisis.
    I told him I'd volunteer to be studied so they could learn more. But he said there are no studies being conducted. That's because nobody stands to make a crapzillion dollars treating rare diseases.
    Every time I'm in the hospital (my record so far is 6 weeks straight), my nurses always comment about never having a patient with my disorder before.

    One time in an ER, a STOOPIT doc informed me I wasn't having a relaps, cuz she just went & read a chapter in a book about it & my symptoms didn't match up!!! I mean, DUH! Reading a single chapter in a book, about a rare unstudied condition, makes her an instant expert? I basically told her to shut the heck up & go call my doc.

    When I'm in a serious relapse, I'm stuck in a wheelchair. My last relapse was the worst, & I couldn't manage a manual chair. I had to use a motorized chair for 2 years.
    (I dubbed the chair the "BratMobile" & made a big BratMobile logo which I attached to the back of the chair. That even made total strangers on the street, laugh.)

    I'm currently outta the chair, but struggling a bit.

    Simultaneously, I have to deal with chronic anemia. I have to have IV therapies to manage it (I don't absorb nutrients from oral supplements), while the hemo tries to determine the cause. & I've had to have emergency blood transfusions, before we knew we had to monitor things more closely.

    Either of these disorders will cause me to be chronically fatigued, extremely weak, & in a great deal of pain. With the combination of the 2, I spend weeks at a time laying around being too weak & sleepy to do anything between naps.

    So, while my dx isn't "chronic fatigue", one of my symptoms is chronic fatigue.
    I was unsure at first, if it was OK for me to post on the CFS board. But after giving it some thought, I think I qualify. :)

    I think I'm actually lucky in a way. The docs recognize that I have the symptom of chronic fatigue, but "chronic fatigue" isn't my diagnosis.
    I say that's "lucky" for me, cuz I see how people with CFS are dismissed & disrespected by the medical establishment & even by their friends & families.

    I can relate to the fibro-peeps too, cuz I have constant pain. A good day is when the pain is at a bearable level. But then there are the times I scream & writhe for a week w/no relief... During those times, nothing exists but the pain.

    People who know me, marvel at the "bold, adventurous" things I do. It's especially impressive to them cuz I'm sick. What they don't understand is, during periods of remission I live as if everything I do, I'm doing for the last time in my life. I'm "bold & adventurous" BECAUSE I'm sick.
    Every time I relapse, I'm afraid it will be the time I don't recover.

    I have to cope with many more symptoms than I've mentioned here, of course. But I don't wanna give an entire "organ recital". LOL!

    There are "benefits", tho! Since I have 2 distinct disorders compromising my immune system, I get to be in isolation when I'm in the hospital. YAY! I hate being sick in a hospital, with some sick stranger & all her creepy relatives just a few feet away all day long! haha!

    I hope this long message wasn't too boring! I just wanted to answer your Q the best I could.


  13. vivian53

    vivian53 Member

    Love the organ recital pun.

    I haven't been here that long either, several months. This board keeps me sane and informed. I am so grateful all these wonderful people were here just when I needed them.

    I am glad you are here too.

  14. bigmama2

    bigmama2 New Member

    thanks for the reply and for answering my question. :)

    bratmobile logo on the chair- LOL!!!!

    and yes, even thou you dont have regular cfs or fibro- you def fit in here. i am glad that finding this board is giving you some understanding and a "resentment free" zone.

    you have a very interesting intelligent and humorous style of writing, by the way!!!!

    2 more questions - just for fun- what kind of music/groups do you like? and what kind of art did you do?

    peace out,
  15. Pippi1313

    Pippi1313 New Member

    Thanks for the compliment about my writing style! I appreciate that.

    Music: I say my iPod playlist is eclectic, but my friend said it's eccentric. LOL! The playlist contains classical, ragtime jazz, big band (Glen Miller rocks!!!), doo-wop, folk, heavy metal, relaxation/meditation, hip-hop, a little rap, 1 country song, & pop music from every decade from the 50's thru present day.
    Many of my fave songs are older than I am. I was exposed to various musical styles by relatives of various generations.
    I'm attempting to teach myself to play the violin. That's violin, NOT fiddle!!! LOL!
    Surprisingly, even tho I'm from KY, I fairly despise country music.

    Art: I love to draw. I do pen & ink, but I also enjoy drawing with mechanical pencils of various lead sizes. I also enjoy working with quality, soft lead colored pencils (like Prismacolor).
    I also paint. On everything! I paint on canvas, of course, but I also paint coffee cans. Some designs are simple, but others are quite complex. I give those to people to use as decorative storage containers.
    I make paper-mache sculptures, too. I'm tweaking my mache recipe, trying to get the finished sculpture as hard & solid as possible.
    I'd love to sculpt with clay, but who can afford clay & kilns & stuff?
    I made several marionettes, sculpting the head from a rock-hard plaster recipe I came up with.
    I also do design work - creating fliers, brochures, invitations, greeting cards, etc for a few select freelance clients.

    What kinda muzak do you like???
    Do you do anything arts & crafts???

    You're SO right about the resentment-free zone I've found here!
    I never imagined I'd find a place where people understand what life is like for me!!!!!!!

  16. bigmama2

    bigmama2 New Member


    i have got two words for you that will rock your world---


    trust me on this one!

    (i'll write more later- just had to tell ya about the clay real quick)
  17. Pippi1313

    Pippi1313 New Member

    Sometimes I feel sorry for them, wondering if they're really so terribly lonely that a public organ-recital is the only way to get any attention. Then I wonder if they're merely so self absorbed, they've used up their sympathy allotment from the peeps who know them.

    Other times, I just wonder if I tend to overanalyze things a bit...

    And, LMAO!!!! I thought I was the only person looking around & trying to psychically convey the message that I don't actually KNOW that person!

    Whatever the motivation, some things go WAY beyond boring, & are just TOO GROSS to be announced in public places - especially when we can't escape til we get to our bus stop!!!


  18. Pippi1313

    Pippi1313 New Member

    It's amazing how quickly (more like INSTANTLY) peeps start popping open the bus windows & rummaging thru their bags to locate their smell-good spritzers!!!

    I wonder if the drivers are allowed to put someone off the bus, if they may actually cause up-chucking?


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