Can't stop crying

Discussion in 'Fibromyalgia Main Forum' started by quilp, Oct 10, 2009.

  1. quilp

    quilp New Member

    since Thursday 8th October 2009, when the news broke. I haven't even thought about a cure or even a treatment.

    We are not 'pond life', we are not 'mentally ill', we are not 'lazy people that don't want to work', we are not 'scroungers', we are not suffering 'abnormal illness beliefs', we are not 'losers', we are not 'time wasters', we are not 'making it all up', we are not 'struggling with our identities', we are not the 'least deserving sick in society'. Ladies and gentlemen i could carry on, but my blood boils so easily.

    The Independent carried a lead article on Friday, it being one of the most well respected newspapers here in England. On page 38 the Editor commented, 'Scientists could be on the brink of a breakthrough. We must hope that they are. That would- at least- go some way to compensating for the shameful manner in which sufferers were treated so long by the medical profession'

    Please forgive my passionate rhetoric on this and other threads, but only those who live here in the UK could possibly understand what we have had to go through.

    In September 2009 i was admitted to hospital on an unrelated matter. The doctors asked if i had any underlying medical conditions. I said 'No' because i knew that their reaction would not be favourable. The disgust on their faces would have been more than i could have taken.

    My father died in 1999 believing i was mentally ill, because the doctors told him so. I recall my father crying alone in his room in the dead of night. His muffled pleas for help to a God i no longer believed in, only added to my anguish. At times like these, suicidal thoughts became welcome friends, but paradoxically what kept me going was October 8th 2009, a day i believed in, a day the world changed for all of us. How many of us have woken to find ourselves still alive and then started crying because we were still not dead ? How many of us have experienced excruciating pain so severe it escapes the accuracy and justice of the English language ? How many of us have looked forward to death like those who look forward to life ?

    Oh please forgive me, because these incoherent ramblings come without the excuse of being inebriated ( believe me i am tempted ) and they offer little in the way of practical advice. Oh those that have helped us, what can i do to thank you ? Thanks is never enough, and my life is worth little to very few. How much is owed to these people, how is a debt like that paid ? Perhaps its time for that drink afterall, just a glass of red, and a toast to those that can never be thanked enough xxx

    Love, Mark
  2. hi mark,
    very well said.i couldnt have put it better myself.
    yes we most certainly deserve a appology from doctors for the shabby way we have been treated in the past.16 years for me.

    i used to have psoriasis many years ago,so i prepared myself for the look of disgust that i got from nurses.
    i thought i was not worthy of anyone smiling at me..i really believed that.

    then as i got older the psoriasis dissappeared and i felt born again.i began to laugh and felt human.

    but since i was told i have M.E (cfs) ,ive still been looked at (by nurses),as if i had something disgusting that they didnt want to touch.

    i couldnt understand it as theres no psoriasis.

    but i do have tiny warts all over my neck,and i thought,,could the nurse be bothered by those?

    even a doctor started shouting at me one time,and he was stressed.this was before id told him about my nasal passage problem (sinuses),i hadnt even sat down in his office before he was going on one.

    so im thinking if people have known for a long time what ive got,but just didnt choose to tell me.

    but im putting it all in the past now,because i refuse to give myself high blood pressure with uppsetting myself over something that i cant fix.

    im happy that we are finally finding out that we have a real illness,and it isnt attention seeking...ive always known i wasnt one of those types.

    be strong my friend,and lets see what developes as regards if we can be fixed or not.

    take care,love fran.
  3. jasminetee

    jasminetee Member

    I keep crying too but then, that's normal for me now. Your post was so eloquently written Mark, thank you. And flossy, I'm so sorry for all you've had to go through as well.

    I really feel for our friends with ME in the UK. I have read so many devastating stories about what kind of treatment you've been put through and my heart breaks for all of you. I hope and pray that this breakthrough will finally make a big difference in how we are all treated.

    I think one of the big differences with this breakthrough compared to all of the other numerous biological discoveries about ME that have been made over the past several decades is that this time the WPI seems to be contacting many major media outlets all at once. That is what is needed. Another thing is that this Retrovirus sounds similar to HIV in some ways and because of AIDS people know that Retroviruses are serious.

    Thank God.


    [This Message was Edited on 10/10/2009]
  4. AuntTammie

    AuntTammie New Member

    I've been doing quite a bit of crying the last couple of days, too, and your post got me started again. I don't usually cry easily at all, so to say that this has struck a chord is certainly true. Right now my tears are dues to emotional and cognitive overload, as well as joy, fear, sadness, reignited anger over all the lost yrs, and probably a whole lot more. I am trying to take this news with caution, bc it is still early, but it is nice to have more hope again....and yet it is happening so fast, I am reeling.

    Also, I am in the US, so no, I have not experienced the degree of awfulness that you have, but I have read a lot about what has been going on in the UK, and I truly sympathize.....and I have been living in fear of what the influence of Wessely, et al on Reeves and the CDC could potentially have (and has been having already) on us.

    Oh, and there is nothing to write well and state clearly what many of us are feeling.
    [This Message was Edited on 10/10/2009]
  5. Rafiki

    Rafiki New Member

    There's a lot of that crying going around. You got me started again, too.

    Thank you for stating so eloquently what we are all feeling. It was wonderful to read something that spoke with the appropriate amount of passion. Our stories are all different but the emotions are just the same.

    This is life changing for all of us.

    Thank you for writing that beautiful, heartbreaking piece.

    You and AuntTammie have been truly inspired today.

    With Hope,

  6. TeaBisqit

    TeaBisqit Member

    I felt like crying for another reason. It's not solid enough yet. If this turns out to not be THE ONE, I won't be able to handle the disappointment. Over the years, I've heard so many things that could have been it and turned out to be more dead ends. I just can't take anymore disappointment. I want this to be it, but I'm scared to even hope that much.

    And it's not solid enough yet for me to tell my disbelieving relatives to take the info and shove it. They won't believe it unless it's completely proven to be THE thing that's been making me sick.

    I do understand, even though I'm in the US. My relatives have treated me like garbage. And one is a doctor. So I do know.

    I want the vindication and the validation. I think this news was a wonderful step in that direction. But I need solid proof that this is THE ONE. I have to have it on paper.

    But the good thing is, they are actively looking for a real biological cause and making it real well known that they are. One day soon, I want to see them change the name and post world wide apologies to us all.
  7. TigerLilea

    TigerLilea Active Member

    You are correct when you state that this isn't solid enough. How many people did they get samples from? They don't state that unless I have missed it somehow. Was it 100, 1000, 10,000 or 100,000? Percentages don't mean much unless you know the number involved. It's way too soon to be getting excited about this.

    The only good news is that it is getting CFS/ME in the headlines. Is it getting people talking? Other than in the CFS/ME community, I doubt it. I know for my family and friends, it didn't even register a blip on their radar.
  8. FibroFay

    FibroFay New Member

    I'm angry! Very angry!

    I just want to see the look on my rheumatologist's face when he realizes how terribly wrong he was to insist that if I just began an aerobic exercise program and stuck to it daily, then my symptoms would subside.

  9. spacee

    spacee Member

    On the homepage here, it states that the testing was done of 300 patients from sources around the country. I take that to mean from other CFS researchers. Docs that know CFS.

    That right there is reassuring to me. I trust our own docs (the CFS researchers) wanting to get this right.

    I would like to be there too Fay, to see the look on the Rhemy's face.

    And let those tears fall! They have to be cleansing after all you have been through Quilp and others.

    [This Message was Edited on 10/10/2009]
  10. Elisa

    Elisa Member

    "Let those tears fall!..."

    I agree, Spacee, it has been such a hard road to have an illness that no one thought exists - now looks like it is a retrovirus...

    So many reasons to cry, at least for me. There is the joy of the new finding and the sadness of the seriousness and the ongoing uncertainty. And of course the "hurry up and make us all feel better." But the hope is always there - that keeps us alive.

    And on the humerous side - here are two news story titles i love:

    "The imaginary disease isn’t"

    "The imaginary disease that wasn't"

    And in the NY times a doctor said when he found out about XMRV he said "At Last" - and I say "At Last, Indeed" says it all!

    God Bless (and He has),


  11. slowdreamer

    slowdreamer New Member

    Thanks Mark for your post..
    It has beautifully expressed what I often feel so I have printed it off and I hope you don't mind if I use it sometimes to educate someone..
    I am very sad about how this lack of acceptance and validation of our syndrome has such a damaging effect on the stress system and therefore on the immune system.
    Take it easy this day and thanks again.