Discussion in 'Fibromyalgia Main Forum' started by mezombie, Oct 25, 2006.

  1. mezombie

    mezombie Member

    Dear Karina,

    I am so sorry that the youtube videos upset you so much. They really shouldn't be viewed by anyone who is on the sicker side or is feeling emotionally vulnerable. I'm sorry you had to see this and put yourself through needless agony.

    I really feel for you. I know many people who had a gradual onset. It is frightening. I don't know how long you've been sick, but I can tell you for most people the downward spiral does stop far,far short of what Linda Crowhurst is going through.

    I had a sudden onset, but I had what I call the "roller coaster" version of this for many years. I would slowly see some improvement, and then it would disappear and I'd be back to barely able to take care of myself. And neither I nor my doctors could figure out why--there were no "triggers" to explain these cycles.

    So I know how discouraging it can be. All I know to do in these cases is to keep yourself away from anything stressful and do everything you already know about to take care of yourself. I wish I could offer more!

    Warm hugs and wishes to you.

  2. mezombie

    mezombie Member

  3. karinaxx

    karinaxx New Member

    your caring post was just what i needed.
    since i saw this video , the picture of her having jerks and laying there, not able to lift an arm, was spinning around my head and of course i am feeling the "stress" and i slept only three hours last night and even that with severe pain and not beeing able to find a deep sleep, because i stoped breathing all the time.
    i am usually not that bed in the night and found ways to improve my sleep. last night was bad.
    it is ten years i am getting worse every year, but the last two have been fast spiraling down and with fair share of different of problems and symptoms, taking turns.
    at one point last year i was very much better and thought ,like so many here experience, that i am getting better. and i was, for about two month, but than started abx treatment for mycoplasma, allergic reaction, creatinine levels up and MS like symptoms.
    my leg is partly paralized,or sort of and the muscle weekness enorm.

    what is the most disturbing for me after that video: to think what my son has to see, when i am bad! he has cfids too, but seems to not get worse for the moment. i am soooo thankfull for that, but of course i am living in fear, that he will get worse or that i am not able to care of him anymore. even now i need a lot of help, but we are fortunate and his father takes him a lot and we are living in a beautifull surounding.

    thanks again for your caring words

  4. karinaxx

    karinaxx New Member

  5. karinaxx

    karinaxx New Member

  6. mezombie

    mezombie Member

    Dear Karina,

    Forgive me for taking so long to acknowledge and respond to your post, but I am in a flare, with dizziness, weakness, and a constant headache. But I did want to get back to you. I’m writing this on my WordPerfect program so I can see it better and take my time.

    I’m glad to hear that your experienced a lot of improvement last year, even if it didn’t last. I think in many cases, that is a sign you are capable of getting better and probably will hit that level again, and then for a longer time.

    In the meantime, there are the lows. I know how that feels. And it’s so easy to make us worse, by trying new medications, overdoing it, you name it. Unfortunately, it’s not as easy to make us better! For myself, I try to be careful about adding anything to my treatment, which I’ve trimmed down to a minimum of medications and supplements. I will say that I think what was helping me the most was Bruce Campbell’s CFIDS Self-Help course. His ideas weren’t new to me, but going through all the steps in his book with a group of others in the same boat provided the discipline that I’d misplaced. It’s totally “non-invasive” and you can take or leave what you want. I’m sure this idea isn’t new to you, but I just thought I’d offer it to you as something that has helped me.

    Please do not live in fear that you will not be able to take care of yourself or your son! I know that’s easier said than done, but keep in mind that you have managed so far, and that your son does have a father. You live in a part of the world where it is probably fairly easy and not too expensive to get help, so that is good. And your son, having seen you at your worst, will not be scarred. If anything, I suspect he will grow up to be a very empathetic man.

    I am a bit scared myself right now, as the person who was helping me is out of the country for the month, and someone who was grocery shopping for me is no longer able to do it. I live alone, which is also hard, but I’m finding ways to cope.

    I was wondering if you wanted to exchange email addresses? Apparently one can do that by arranging to meet in chat at a certain time, then going into a chat room that is empty. As of tomorrow, there will be a ten hour difference between us, so a time that would work for us both would be in the morning for you, and in the evening for me. Let me know what you think of this.

    Warm wishes,
  7. mezombie

    mezombie Member

    Also wanted to add that I really appreciate the time and effort you put into posting new research findings here.
  8. mezombie

    mezombie Member

    Hi Karina,

    When are you generally logged in to the message board (PST)?
  9. karinaxx

    karinaxx New Member

    thanks again.
    your also welcome; research is fun for me and i love puzzles.
    give me some time to answer to you, i have a lot going on in the moment and have to kind of pace myself careful mentally, you know......

    take care

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