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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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XMRV Message to members

Discussion in 'XMRV Testing, Treatment and Transmission' started by free at last, Oct 24, 2010.

  1. Xandoff

    Xandoff Michael

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    Northern Vermont
    To Free at Last,

    Been there done that. I just received my confirmation in September 2010 from WPI. I too was immersed in me..me..me..from fighting to hold my head up for so many years when I justed wanted to lie down. The invisiblity of this illness defeats your very soul. Yours is as mine was a life lesson. If you can say you have been me..me..me, then your ready to change the tune. You kind of have to be me..me..me, because nobody else is. Fighting the Doctor world is very hard on our generation. Doctor's are not to be challenged and they are supposed to have all the answers, and then one day you find yourself on the other side of the fence. The big group W bench of malingerers and drug seekers and slackers. If I say the whites of one more Doctor's eyes I was going to scream and act the way they expected me to act.

    The good news is that there is a transition from your final validation of your not crazy, your ill! The greatest joy came for me was to see how it lifted my wife up from the deep dark depth's of isolation. Now that we have validation and a wonderful cadre of souls on this site all we have to do is to fight the damn disease. Before we were fighting the whole world.

    Forgive yourself. Honor yourself and heal yourself as best you can. It's no longer all on you. Life lesson learned. Next!

    Good Luck, please come back to the forum and stay awhile, we are all in this thing together.

    XMRV for Life(sic)
  2. Xandoff

    Xandoff Michael

    Messages:
    292
    Likes:
    182
    Northern Vermont
    To Free at Last,

    We had a nightmare now perchance to dream.

    Been there done that. I just received my confirmation in September 2010 from WPI. I too was immersed in me..me..me..from fighting to hold my head up for so many years when I justed wanted to lie down. The invisiblity of this illness defeats your very soul. Yours is as mine was a life lesson. If you can say you have been me..me..me, then your ready to change the tune. You kind of have to be me..me..me, because nobody else is. Fighting the Doctor world is very hard on our generation. Doctor's are not to be challenged and they are supposed to have all the answers, and then one day you find yourself on the other side of the fence. The big group W bench of malingerers and drug seekers and slackers. If I see the whites of one more Doctor's eyes rolling into their pointy little heads I was going to scream and act the way they expected me to act.

    The good news is that there is a transition from your final validation of your not crazy, your ill! The greatest joy came for me was to see how it lifted my wife up from the deep dark depth's of isolation. Now that we have validation and a wonderful cadre of souls on this site all we have to do is to fight the damn disease. Before we were fighting the whole world.

    Forgive yourself. Honor yourself and heal yourself as best you can. It's no longer all on you. Life lesson learned. Next!

    Good Luck, please come back to the forum and stay awhile, we are all in this thing together.
  3. free at last

    free at last Senior Member

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    Hi again eveyone, just wanted to say, i hope those that are very sick will take heart from my expriances. i know i havent been able to offer much help in getting better, as i dont fully understand myself why i have been able to get so much better than the past. Im really not sure exactly the reasons its happened. But it may be worth trying some of the stuff i did, i know at face value it might seem unlikely that what i have reported will have any effect. but what i have reported is really all i can do. To tell the truth,

    we know so little about the effects of so many things. that really it could have been just about anything i was doing, to the type of nutrution i was heaping on myself. to getting the sleep to a point that i was getting lots of it, the supplkements i was taking or even a combination of all those things, somehow tipping the scale back to where i am now.

    but please bear in mind, i do still get ill. which im sure is of the same type that started all this so many years ago. so from that perspective, maybe its true we never ever really fully recover, and its there for life. but to get where i am now compared to where i was for so so long. means there is hope. that you could get to a place where i am right now. theres no guarantee i wont severly relapse at any point. its as uncertain for me long term, as it is all of you. But what have you got to lose but doing the things i did. It may have no effect i really havent a clue. And it isnt something that happend in a month. it took litteraly years, to start to get it under control, doing all this stuff for all that time. but i no longer take meds of any kind, dont even eat those vast amounts of miracle foods that i feel did possibly help tip the scale back towards a human being again. the raw garlic the veg the supllements, the proper sleep the proper rest, the restricted excercise. try all of it, and keep doing it not for a couple of months, think more like a couple of years,

    and see if the attacks or symptoms start to become slightly weaker, and the periods of feeling a little better slightly longer. because thats how it happend with me. so slow and so gradual ( because illness just kept happening ) that for a long while it diidnt even seem like i was getting better, over time its almost like my body has been learning to control this, learning to co exist, with something it just could not beat. And thats all i know.Of course some may see this as evidence that i was somatizing. wessley certainly would. but i ask you to not think like him. Yes its true that amitriptylene had a side effect of very drowsy sleep on me. How do i know this, well because those types of medication take a while to have a effect on mental problems. and yet the very first time i took them i could not wake myself up. and had 6 hours sleep the first morning. ( i say morning because i had no sleep at all the night before ) clearly this one dose did not cure me from being a raving somatizer. thats ridiculouse. clearly the drowsy side effect the drug has ( much more powerfull when taken just before sleep, important to do exactly that ) not 3 hours before sleep. i know this because i tried, and it didnt knock me out. i came to realize the drug somehow mixes with the bodys own sleep chemicals to produce a sort of double hit that literally and utterly knocked me out. i tried other sleep meds zopiclone and another one cant remember which ? but for me they didnt wotk. It may not be important which drug knocks you out to get the deep sleep needed to start this recovery off. but you must find it, or i feel you will not recover. I am not on any medication, i havent been for a long time. yet i contunue to do well
    Although yes i will and do still get ill. we are in this for life i think. its just a matter of where you are right now.Of course if i go severly down hill again. i may have treatments for me that would not have been offered to me 15 years ago. with the now retro viral dicovery many of you may have

    UK XMRV please forgive me for not being able to come i have no transport of my own. and with flu season just around the corner. i would be a basket case with all the close crowds coughing and sneezing on the train. My mind is still back there 15 years ago, even if my body has improved
    Im honured that you asked me, and feel terrible that i can not overcome this protection device in my head. in the summer if anything is happening i promise to try to be there, as i was let down by the NHS back then as you all are now. And its just plain wrong. give em hell for me too pkease
    Is there anything else i can do to help ?

    Dannybex ive tried again.
  4. free at last

    free at last Senior Member

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    Xanadoff wise words my freind
    Dannybex asked me to try again hence my life story yet again.
    but i take comfort in your words because i know we all do things for a reason, and you just explained it perfectly for me. so thank you for that
  5. dannybex

    dannybex Senior Member

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    Seattle
    THANK YOU Free at Last -- your experiences and advice I know will be helpful and inspiring for many here, including myself. I think you're so right, that while you may not be at 100% or even 60-70%, it is possible to improve...to come back from 'the dead'...your story is proof of that, and telling that story is SO important because we all have days where we feel like we cannot go on another day and/or things will never get better.

    And if anyone thinks you were somatizing because you listened to your body, gave yourself the nutrition and found ways to get some decent sleep, then...I don't know what to say to them, except like you say, "that's ridiculous". You were TAKING CARE OF YOURSELF. :)

    So often we can get so caught up in this treatment or that drug, that we forget to try and do the basics. Easier said than done sometimes, especially if one is bedridden, or alone and housebound, but when I've read about people who are recovering or have recovered, they all have done the things that you have done or are doing. But like you suggest...there are so many factors, and we're all different, that what helped you may not help everyone...but then again, it just might help a lot more than you think.

    Thanks again,

    Dan
  6. free at last

    free at last Senior Member

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