my post has disappeared

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by maddie2013, Feb 25, 2013.

  1. maddie2013

    maddie2013 Guest

    It appears my post about suicide has disappeared. Im guessing whoever runs this site has removed it i'll have to check my email. Sorry if it caused offense it wasnt my intention. Thank you to those who did reply Shel you made me smile when you mentioned family of origin issues, from reading that i know you know what i mean. You right sunflower we do get lumped together and dismissed because there is no cure.

    I cant remember all you names because the post has been wiped by the looks of it i do rememember someone saying these thoughts are normal with such a chronic condition, your absolutely right thats exactly what i was told and already knew. Hermitlady i found your reply very touching thank you sometimes we need to know we're not alone. Thank you for your alternative remedies and medications that work for you, ive tried most, it was the gabapentin at 1200mg that gave me 3 years of a little relief unfortunately they stopped working and i did get side effects at a higher dose, i tried them since and they give me headaches never mind. I wrote down things i hadnt heard of, i do take melatonin for sleep but never heard of some things you mentioned jaminhealth so i'll take a Looksee.

    With much respect for you all

    madeline
  2. gb66

    gb66 Active Member

    I'm sorry they removed your post. I thought it presented an accurate account of how people with these hidden/forgotten diseases feel at times. The loss of family, friends, and their disbelief, even of our doctor's can be overwhelming.

    I had my husband read it because he understands what we are going through about as well as anyone could who doesn't have this disease.


    He and I are virtually alone in this battle with the CFS/ME. There are no doctor's in my area that will even acknowledge it's existence. Our grown children are not supportive at all.

    My doctor won't even discuss anything about my health that isn't comfirmed with a lab test or x-ray. This has been the case with every doctor I've seen in the 34 years I've been ill.

    I don't think your post was as much about suicide as about despair. I hope you're feeling better today. I know the feelings can get you down at times, but we do all seem to bounce back. It's good to have each other to vent to. GB66

    [This Message was Edited on 02/25/2013]
  3. ... I'm sorry too that they removed your post... But I am glad to hear that I made you smile :) and that so many on this board gave you encouragement and support.

    While it is a dark subject, I think it was good to bring it into the light and share your feelings so that you didn't feel so alone... And so that you could see that others on this board understand and care...

    I hope you will continue to share here and stay in touch with all of us... Even though its only through the computer, I feel that I have some very dear friends on this board... And they have all been such blessings when I needed encouragement or advice or prayer the most...

    I do wish there was a way to contact each other directly sometimes... But either way, this board is a wonderful community of folks going through the same struggles with illness... And I am very thankful for the folks here... And that includes you, Maddie :)

    Hope you are feeling encouraged, if even just a little... Hang in there... And let us know how you're doing...

    Blessings and Gentle Hugs,
    Shel
  4. jaminhealth

    jaminhealth Well-Known Member

    is on the Alternatives Board....hang around and check in....and do hang in....things can change....jam
  5. mbofov

    mbofov Member

    I think your post was removed because it was a direct discussion of suicide. At the top of this page is a link to "message board rules" and if you click on that, you'll see a highlighted link to "code of conduct" and under "code of conduct" it states:

    "•Suicide: Please feel free to talk about depression, find encouragement, information, coping skills, and solutions. No explicit discussion of attempts is allowed. Discussion of the loss of a loved one to suicide and how you cope is permitted, without being explicit. Discussion of coping methods for self injury are permitted, without being explicit. Explicit discussions can be triggering to other members experiencing those feelings. Discussions or threats of suicide or self injury are not permitted. These need to be directed towards a health care professional or a hotline to speak to someone trained for these situations. Call a helpline immediately ( 1-800-273-8255 ) or 911."

    It would have been good if the moderators had sent you an e-mail telling you why they removed your post.

    Having said all this, you did raise an issue many of us deal with and it is too bad we can't talk about it directly here. I think the hardest part of dealing with CFS is the isolation. The symptoms are horrible to be sure, and the loss of abilities to do anything you really want is devastating, but I think it's even more devastating to be alone with this.

    I don't have any easy answers. I've been dealing with crashing since 1998, whcih effectively put a stop to doing anything I really want to do. My marriage broke up (which was a good thing) but I mainly deal with CFS alone. I've been trying ever since to get my life back. I've made some progress but it's been excruciatingly slow and difficult.

    A couple of months ago I started doing qigong - it can be adapted to anyone's level of functioning, even if you're bedridden. There's an article somewhere on this board about people who have improved significantly (much less pain etc.) while doing qigong. The type I'm doing is called Spring Forest qigong (you can google it - we can't post commercial websites here). It's a very good program, I use a CD and DVD to do it.

    Also, the methylation protocol has helped a lot of people. There are tons of posts about this here. Also, make sure potassium levels are optimum. Check your blood work. Mine were at the bottom of the normal range so no doctor ever suggested I might need more, but I did. And this has made a noticeable improvement in my energy.

    Good look, take care -

    Mary
  6. freida

    freida Active Member

    I had wondered if that would happen. I think that all boards have policies regarding discussions of suicide. Some of those discussions could have messages I personally did not see in yours, but maybe the board has liabilities, or maybe they don't want to accept your and not someone elses's, who might be less appropriate.

    Anyway, another thought I had,
    was that it may even have been possibly ,
    some phrases in any of our responses that caused it to be removed, and not yours, or not as much yours as someone else's wording of something.

    Either way, we are glad you are here,
    and we sure do understand the isolation and extreme difficulties, and a wide range of thoughts we have, as we struggle and try to make decisions.

    I'm quite sure that many aspects of what you wrote about are okay to discuss here, even if not the entire range or detail.

    Leah
  7. luigi21

    luigi21 Member

    Yeah i was gonna to reply to your post but was busy yesterday, i read other peoples replies it came across as a very powerful topic but i have to agree with the first poster i think i was more about despair having enough and from ehat i understand we all come to places like that and often you cant not when you suffer t conditions. I didnt fnd ypur post explicit i think you covered suicide in one sentence but i guess it about perception.

    I found you post covered alot of issues i myself have no children and family as such and would dearly love them. But when i struggle to keep on top of every day tasks i have to admit i dont think id be physically capable i also worry as to whether this thing is genectic. So for a woman who wants children thats a biggie for me.

    And for me you described the despair of watching your world get smaller with every compromise, yeah the anger that comes with that.

    A big one for me is acceptance i cant accept it because i know if i do i'll just feel hopeless, although the neverending effort to do simple tasks is frustrating. Its like trying to operate with the hand brake on.

    I remember you used the word rob or robbed of your life what a apt description. See with a comparison of a pre life always in my mind i do battle everyday it doesnt mattet how many years ive had this condition. At the other end of the spectrum from anger is hopelessness over the powerlessness i feel they are (duvet diving) days when i even wish i could hide from myself. And i to have days where i dislike myself because theres no whete to go with the anger and frustration and no real recognition of our plite.

    Its all very well having a regimented attitude about this and that is what gets me through most days like you said i do wake up most mornings and because its pain that usually wakes me my first thought is negative. ( maybe i should paint something on my ceiling so that instead my first thought is " who drew that awful picture of a bird on the ceiling, or maybe i should just write the words "woo hoo" Anyway i digress, yes we do have to just get out of bed and get the kettle on.


    I do believe that those having these thoughts need to go to the doctor. Ive got to say i have and my doctor said its a normal thought to have with these chronic conditions.

    However if you feel compelled to act on your thoughts then you need to seek medical help because if you are depressed theres medication and therapy that can deal with that.


    I think sometimes it takes someome to raise a topic to allow others to feel ok to talk about their stuff. Like mushrooms thoughts can grow in the dark and some bringing them out in the open in the light leaves you feeling less issolated with them. And from reading the responses yesterday to your post was credit to all to tackle the topic.

    Madeline thank you and dont issolate keep only to your meetings or pop on here whatever feels best.

    Kind regards

    katherine x

  8. luigi21

    luigi21 Member

    Sorry about the spelling madeline that last sentence was meant to read keep going to your fibro/ cfs meetings and pop in here when you feel like it. Im typing this on my phone with a screen no bigger than a credit card whilst chinwagging with my friend at the same time.
  9. freida

    freida Active Member

    Loved katherine's comment about the mushroom.
    Sure is true.

    Thanks for that, k.

    Leah FRee....
  10. hermitlady

    hermitlady Member

    I guess I need to apologize here because I got an email regarding my post being deleted. Sorry, didn't mean to offend anyone. Moderator said they only give one warning and then I would be banned next time. I was a bit shocked, but sorry I posted irresponsibly. I've been coming here for several yrs and that was a first for me, made me feel terrible!

    For some reason the last 3 days I've been feeling progressively weaker and in much more pain. I cannot for the life of me figure out what I might have done to make this crash get so bad.

    I know I am so much more emotional when feeling so sick, it's hard to be cheerful on days like these, huh?
  11. maddie2013

    maddie2013 Guest

    I got alot out of your reply please dont feel sorry for being honest, costs alot to have integrity dont ever let anyone make you feel bad for that or take that away from you. like i said even though ive been to the depths of despair like many of us i still like myself its my condition i struggle with, always stand by what you wrote for me yesterday dont let anyone have the power to cheapen that. I cant get into my email so im sure the fault is mine but im not going to regret what i wrote, im sorry if it had implications on you though but i dont think anyof us wrote anything explicit, its like being watched over by big brother when we ate adults, although i guess i didnt think of those who may be vunerable to my post i never thought suicide was catching i thought we all make up our own minds. And that word was only mentioned once in one sentence out of the whole of my post but i take full responsibility and i hope the prohealth people read this and remove your warning.

    "All My Fault people! Please dont implicate those that were only trying to help"

    Thank you Hermitlady

    madeline xxx
    [This Message was Edited on 02/26/2013]
    [This Message was Edited on 02/26/2013]
  12. maddie2013

    maddie2013 Guest

    Oh ok, but i still feel responsible because i posted in the first place. maybe i dont understand because im from england we talk pretty much about everything. And on that basis i am going to say this regarding religious belief, now it really doesnt bother me in what people believe because i know believing in god can bring comfort and reason for being; But that also works that way for people who dont believe and lean more towards evolution. And as a non believer i do not get offended by people expressing their religious fervour
    So why doesnt that work the other way, just a thought and an Observation. Or is there no bias from people on the board per se.....but elsewhere, i really dont care if they ban me for saying this, i cant feel stilted over everything i say theres no freedom in that. Posting on this board has been like a double edged sword. But i am truly grateful for everyones replys regardless of belief or non belief has nothing to do with whether your a good person. The only reason i mentioned it in mine is to show how much value i do put on in this human experience making such choices not easy or taken lightly.

    Thank you

    [This Message was Edited on 02/27/2013]