losing will to fight

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Dec 8, 2008.

  1. ladybugmandy

    ladybugmandy Member

    almost all the improvements i had made on antivirals (about 30-35%) are now gone.

    i don't know how much longer i can take this.
  2. Timaca

    Timaca New Member

    First of all....hugs to you....

    Secondly, have you been checked out or tested for enterovirus? Cpn? These would not be addressed by the medications that you are on.

    Best and more hugs...
    Timaca
  3. gapsych

    gapsych New Member


    So, so sorry that you are not doing well. My thoughts are with you.

    Isn't this the week you are having the holter test?

    I do not know how you make the trips. At one time I lived two hours away from my doctors while transitioning my insurance.

    Let us know how you are doing.

    Sending healing thoughts.

    gap
  4. jasminetee

    jasminetee Member

    I'm so sorry to hear you've lost the improvements you made. I think it can be harder on us when that happens as opposed to those of us who didn't improve at all from them. My heart really goes out to you. I know it's a major mourning process that we have to go through and it's made harder when you're given hope then have to mourn your losses all over again.

    Your outlook will improve in time. Mine did after awhile but at first I went into depression when I had to go off Valcyte and hadn't improved. Your emotions fluctuate but there will still be times when you're happy in spite of all this. I'm here for you and I know so many others are as well.

    I wish I could make it better.

    Hugs,
    tee
  5. amy44

    amy44 Member

    My heart aches for you, because I've been there too many times myself. But you MUST keep up the fight. It IS very discouraging, making some improvements and then losing it all... :(
    How well I know where you're coming from!
    Would you like to share with me about yourself and your ilness(es). Do you have family, a friend or two, or maybe a cuddly pet? I'm a good listener, and just maybe, I'll have some "helps" for you, that you haven't tried, yet!?
    I REALLY do care... Depression is one of the worst symptoms one has to deal with!

    Keep on keeping on! God loves you... there is no one else like you, and we are all special in his sight!!! Am looking forward to hear from you!

    Warm thoughts of you & U R in my prayers,

    amy44
  6. ladybugmandy

    ladybugmandy Member

    thank you for your posts. they really meant a lot to me.

    there are so many wonderful people here.

    i am racking my brain wondering what could be going on. all this time, i was 100% sure the EBV was still active. it was the only thing that made sense to me. now i just don't know.

    i will keep fighting for now and hope you all will too. i am trying to pray but its hard with the fog. my mom does not understand this. but when i can, it brings me peace.

    i wish my sister wasn't mentally ill....this also drains my energy so much and has over the years. whenever i visit her at the hospital, i am depressed and sick for a week.

    i have a few friends i can talk to but its mostly my mother who is there for me.

    i just can't stop thinking "what if i had found dr. lerner before....what if i hadn't kissed that guy who was sick, a jerk, and gave me mono....what if i had half a brain to do the smart thing....to stand up to people....". i just cant forgive myself.

    how can i forgive myself for this? i have lost everything because of my decisions. i cannot even trust myself to take care of my own health.

    i read so many stories of people who were treated early on and are well and happy. why didn't i do it too? i used to research this all the time but never came across dr. lerner's publications. i even used to go to the medical library. why didn't i see this?

    i have this voice inside telling me its too late..its too late...

    i can't stand the thought of living in limbo for the next 30 years...neither dead nor alive...and all alone. it won't be possible.

    love to all
    sue
    [This Message was Edited on 12/09/2008]
  7. mindblower

    mindblower New Member

    "i have this voice inside telling me its too late..its too late..."

    This is just a voice, another point of view that happens to be coming from inside you. But it's not who you are nor does it necessarily represent reality.

    You're a very great gal, inspiring and courageous actually too in my book. Only you can really say if it's too late or not.

    It's our call mostly to quit or keep to our commitments in life, even if one of these happens to be the oft seeming impossible yet inspiring goal of conquering our ME/CFS. And medical history has numerous examples of diseases with once grim prognosis having been cured or finally effectively managed from unexpected breakthroughs coming forth virtually overnight.

    There's no reliable way to predict exactly when these sort of things will happen and until they do or until we make them happen, where and how we can under the circumstances, hitting bottom without giving up is an important part of what it takes to see ourselves through. Regularly connecting with others experiencing the same as you're doing also is important as well.

    We're with you, we're for you. But most important, we are you.

    MB
    [This Message was Edited on 12/09/2008]
  8. Rafiki

    Rafiki New Member

    I, too, have received comfort from this thread. What wise and kind souls are among us.

    We are in the darkest days of the year. This is a natural low point for all of us - mentally and physically. That is why every traditional December celebration includes light. Wait for the light, Sue. Soon the days will begin to lengthen and we will all begin to lift.

    You are our bright Ladybugmandy. Please be good to you. The blame you are heaping on yourself will only weigh you down even though it has no substance at all. You would never say these things to any of us. You would never believe them of us either. Please be as good to you as you are to us.

    It is only temporary darkness. Everything really does look different in the light.

    We will all get through this.

    I wish you ever more of the kindness you give.

    Your friend,

    Rafiki

    PS Empty2void, you gave me delicious chills. "That's when the roots grow." Wonderful, just wonderful!

    [This Message was Edited on 12/09/2008]
  9. chrissy12

    chrissy12 New Member

    "Be kind to yourself during this healing time." These are the words Dr. Lerner spoke to me when I expressed my frustration from being sick. He told me this is a time to be gentle to myself.

    I left the office feeling better that day. I offer these words to you, too. You have been through so much and never give up. You have been an inspiration to all of us here of this board.

    It is time for you to let go. You seem like a person who is always reaching out to others. You are not always going to feel the way you do right now in this moment. I am sure Dr. Lerner will bring you back to where you were before. He will NOT give up on you and you need to let him to do his work.

    I, too, find when I am able to pray, I find more peace. Some days this is too much for me. That is when I rely on my friends to pray for me. There are many on this board who will offer prayer up for you.

    There has been a lot of words of wisdom already spoken that I have taken from this thread.
    Thank you for posting it.

    Sending you many hugs... Cindy
  10. slowdreamer

    slowdreamer New Member

    Sorry to hear of your dark time..I know about this I think..I have had some help this year and some of it has worked..Its a tough call this DD on our heads and I now try not to take my thoughts seriously..Depression seems to amplify the thinking process and what use is this.

    .I have been listening to and reading Eckhart Tolle :The Power of Now" where he talks about getting away from our minds and living in the world of the senses, describing the world rather than evaluating it...

    I have started using meditation to turn of f my mind and some days it works..

    Re visiting your sick sister..Being unwell can so amplify everything but sometimes its o'kay to do only what uplifts us as our first responsibility is to ourselves.

    Your post and its replies has reminded me today of kindness ..Our wounds link us together don't you think..
    Nurture your spirit lovely lady
  11. joanierav

    joanierav Member

    i spoke to you on the chat a few wks ago, and right away i liked you. i read your posts all the time, just to see how you are doing. im so sorry that you are feeling you are losing the fight. you can see how many friends love you here. really beautiful people , like yourself. please know that i will continue to pray for you at this dark time. and you know the old saying "God always listens to sinners" hehe. just wanted to add a little humor here. warm hugs. joanierav
  12. joanierav

    joanierav Member

    i just wanted to add one more thing. i have been very sick with cfs myself, and ive felt like you many times. this is what helps me and keeps me going. try to think of what is working in your life. for me its my beautiful grandson 2yrs. old. he is my reason for plugging along. you have a wonderful relationship with your mother. you say she is your best friend. that is beautiful. ill bet many of us on this site cannot say that. so dear , start there, and think about that blessing that God has given you, your wonderful , generous mom. more hugs, joanierav
  13. ladybugmandy

    ladybugmandy Member

    thank you guys SO SO much. the outpouring of love here is beautiful.

    my fog is bad so i cannot answer each of you in an appropriate manner but, as usual, you have helped me.

    due to the fog, i am unable to create a 'cohesive whole' with my memories and forget totally what it is like to feel better, when i am really sick. i can only feel the present moment.

    you have given me inspiration and the will to keep fighting. thank you from the bottom of my heart.

    love and hugs
    love

    ps...it is hard to believe some of you have brain fog! you are amazing writers! lol
  14. Rachelsvine

    Rachelsvine New Member

    I will be starting Zaltrax soon. I'm being treated @the Fibro and Fatigue center in Dallas. They also gave me Artimesinin and a natural anti- viral supplement.Betty
  15. WhoSaid

    WhoSaid New Member

    I have tried lots of things to get past the pain and muscle weakness. I have lost count of the number of things that seemed to help for a while then stop working. There have been times when I lost more ground then I gained.. How frustrating. Every now and then it gets the best of me and I cry. The funny thing is I don't have life enough to cry for long.
    On the bad days I sit doing as little as possible. I tell myself all the time that better days are ahead.
    Best thing I can say is to look for a way to be peaceful on the days when you can't be active and be happy on the days you can.
    Don't trash yourself trying to "make up" for being behind in your housework. GET HELP!
    Know that you are never alone.
    Gentle Huggs
  16. jasminetee

    jasminetee Member

    You don't have to worry about addressing us individually. No worries :)

    I understand what you're going through mentally and emotionally because I'm always thinking things like that too. The issues about 'Did I pick this up from a boyfriend?' and 'If only I could stand up to people' 'If only I could make better choices' 'I must be stupid' 'It's too late' these are my thoughts all the time too. They cycle around and around and drive me crazy.

    I am positive that they are normal thoughts to have in our circumstances and I am also sure that our DDs make them 10 times worse for us. I know I tend to get stuck on things and obsess on them and I wasn't like that before when I wasn't as sick.

    When I start thinking like this I do what I can to stop it. I've found Byron Katie's line of questioning helpful. She's on YouTube for free. She has you ask yourself if the thought you have is true and then turn it around etc... As with all things like this I take what works for me and leave the rest but I have found that it does help me a lot and allows me some peace of mind.

    Her philosophy may or may not work for you but there are other philosophies and things out there that may help you. I find I have to continually work on my thinking though, nothing's a permanent fix but there are things that help to alleviate my distress each time I address it. I think I'll be dealing with this problem for the rest of my life as long as I am sick.

    I just wanted you to know that you're not alone in having these thoughts. All we can do is take it one day at a time.

    Hugs,
    tee


    [This Message was Edited on 12/11/2008]
  17. tansy

    tansy New Member

    there is no explanation. ME and CFS symptoms/severity wax and wane even without the presence of known triggers; it's the nature of the beast.

    I sometimes find myself wishing I knew what I know now when I first became ill; then I have to remind myself that treatment protocols are still evolving.

    There have been times when I investigate but don't try anything new because the time just is not right. When we're at our worst, or perhaps having to make the most (carefully) of a period when our symptoms are less severe, when die off or any other responses to Tx, are not wise.

    Modern society has become obsessed with health and has been sold the myth that if everyone adopted a healthy lifestyle, and developed the right attitude, then no one would be ill. Subsequently there is a lot of pressure on patients to get well because failure to do so dipsels the myth.

    I know PWME who go through phases of trying to find the right treatments and other phases when they give themselves permission to be ill and concentrate instead on achieving as much quality of life as is possible. Choosing the latter, and going with the flow, has led to improvements in some cases: so it's not about giving in it's about making the right choice at the right time. Females tend to be more confident on the whole at following their intuition; but it's more difficult to do that when we have a lot of outside pressures and issues to deal with.

    There's no single protocol, or Tx, that works for everyone so please do not feel guilty about making the wrong decisions; there is so much trial and error involved none of us (nor our doctors) can get it right every time. I found Tx failures, or bad reactions, helped me make better choices further down the line.

    Whilst rest, and treatments, in the early stages can reduce the odds of long term illness, some PWME and PWCs report going into remission without knowing why. Those who opt to go with the flow, and are kind to themselves, tend to cope better with what their illness throws at them. This is an illness you cannot fight your way out of; accpeting that can help us cope emotionally.

    Sue you've had some great replies that others will find beneficial too; so thanks because you've raised issues we need to be able to discuss openly without being judged.

    Sending you warm hugs from across the big pond.

    tc, Tansy

  18. sunnyslumber

    sunnyslumber New Member

    Hey TK! your decisions aren't stupid, it is pretty much impossible to control life by making all the "right" decisions like it is a game of chess or something. Change the circumstances a bit and all of a sudden bad decisions don't seem so bad, good ones might seem not that good, or even better than before, etc.

    I doubt it will be 30 years... I am really encouraged by the pace of research recently... You will get better; but your life always has value. I'll promise to hold on if you do too =).
  19. aleutian

    aleutian New Member

    I can totally relate to what you are experiencing. Can we arrange a time to go into chat room to talk?

    Mary
  20. ladybugmandy

    ladybugmandy Member

    thanks all.....mary...sure..the evenings are a little better for me energy-wise but please let me know when you would like to meet in the ME chatroom.

    love
    sue