What do you do for the incredible grief?

Discussion in 'Fibromyalgia Main Forum' started by Lillie17, Aug 16, 2008.

  1. Lillie17

    Lillie17 New Member

    Do any of you have any ideas on how to deal with the incredible grief and sadness of having ME/CFS?

    I do have gratitude.
    I do try to think of the bigger picture, etc., etc.
    but after higher viral numbers on recent blood tests
    and suffering a relapse, my grief is overwhelming.

  2. Lillie17

    Lillie17 New Member

    What is ole?
  3. olive leaf extract I believe.

    and I have no idea about the grief, I never seem to get over it. I hate this dd.
  4. dannybex

    dannybex Member

    I'm sorry too. It IS very very difficult at times, especially when the vast majority of us have lost support from family and friends who think all we need is a triple latte or more exercise.

    This will sound really odd, but I think a good long CRY is often very beneficial. It's not good to hold in emotions, and I think there's often a sense of relief if we let some of them out. You just may feel a little better, if you just let go, and let it out...

    I'm not a doctor, but regarding your higher viral numbers:

    OLE stands for Olive Leaf Extract. Some people have had good results with it, but not all (different things work for different people. Have you tried Monolaurin? That's also anti-viral and has been shown to be effective for certain viruses and infections.

    Other people swear by l-lysine..

    Hope this helps,

  5. kellyann

    kellyann New Member

    I am so sory for for pain. I would pray to God to relief.
    Prayer works miracles, and eases pain..... at least I belive it does. I will be praying for you sweetheart, your post is breaking my heart. I hope you are okay!

  6. mbofov

    mbofov Active Member

    What helps me the most is that I've refused to give up. I keep researching and try all sorts of things and I have made some progress.

    Sometimes I do get overwhelmed by the reality of CFIDS and as someone else suggested, it is good to have a good cry when you need to. And then afterwards you pick yourself up and just keep going.

    So having gratitude alone doesn't do it for me. The illness is just too awful. But I am determined to get better, and when I crash or don't do as well as I think I should have, yep, I can get very discouraged for a couple of days. But I just then switch my focus to research etc. and try not to dwell on how bad things are.

    And I have made some progress. So that helps me to keep going. I don't rely on traditional medical doctors alone. I think they are very limited in what they can do and I do my own research and read a lot on this board and have learned a lot here.

    So it's okay to be very sad, for awhile. But afterwards I think it's good to deliberately switch focus on getting better. People are making progress.

    Also, I used to take 5-htp, recently switched to l-tryptophan - I think this helps my mood. Also lots of fish oil is very good for your mood. I think this has helped me from staying down too long. But if you are taking an SSRI, then don't try 5-htp or l-tryptophan as you may develop serotonin syndrome (too much serotonin), which can be dangerous.

    hang in there - we've all been there-

  7. homesheba

    homesheba New Member

    i also hate the grieving
    and for sooo long i didnt even know what
    it was that i was doing.
    but now i see i am grieving the 'death' of the old me.
    and i have to admit-
    i hate loosing .
    i hate not being able to do stuff
    and not being able to be with friends anymore
    and all that but
    i have to believe that their is a reason and a hope for me to continue to go on.
    i keep on knowing that thank goodness
    im not in a iron lung or no legs and arms
    and worse off than i am like so many.
    if i dont stay close to my Creator-
    ill go crazy i think.
  8. also I pray I will get better at least the severe pain lessens.
  9. SpecialK82

    SpecialK82 New Member

    the grief can be overwhelming at times, especially when you think you are making progress and you are so rudely slammed back to square one.

    I read a book a few years ago, "Man's Search for Meaning" written by a psychiatrist, Viktor Frankl. He wrote about his experiences as a prisoner in a WWII Nazi concentration camp. He observed the prisoners around him and tried to understand why some people would give up (and die) and others would continue on. How do people deal with such devastation and suffering over a long period of time with no end in sight and have the desire to go on? It's a fascinating book about the human psyche, but of course, very depressing to read.

    Anyway, one of his conclusions at the end of his book has always stuck with me and I think about it when I feel lost with the DD. And it is -- The purpose of life is not happiness, the purpose is that our life have meaning.

    There are many stories of people who are sick and they work to make others aware of the disease, raise funds, etc. and that gives meaning to their suffering. For instance, Mothers Against Drunk Driving made meaning out of their children's deaths.

    So I think to myself, what meaning can my life and this suffering have? How can we use the wisdom that we have gained to help others?

    The answer will be different for everyone but when I start feeling too sorry for myself (and I do) I feel better when I concentrate on my life from this perspective.

    Hope that helps a little.

    Hugs, Kristina
  10. glenpr

    glenpr New Member

    I have similar feelings as you special. I have found that in giving to others that receive much more back.
    love glen
  11. pasara

    pasara New Member

    The thing that has helped me most with dealing with the mental-emotional effects of chronic illness has been homeopathy. I hope you can find an experienced professional homeopath to help.

    My husband has a saying:"There are two people I always pay on time: my mechanic and my homeopath."
  12. jasminetee

    jasminetee Member

    The grief with CFS is very intense especially when you're doing worse all the time. I can relate to that. People here have all had good suggestions. One thing that's helped me is pulling way back from most of the healthy people in my life. I don't mean to imply that they're emotionally healthy, I mean physically healthy compared to us at least. I find my grief is much worse when I hear about them living their lives normally and I don't feel support from them for what I'm going through.

    I don't have a problem dealing with people if they're always supportive but most aren't and many are downright toxic. It was harder at first pulling back from them and/or cutting them out but now I'm happier more often even though my CFS continues to get progressively worse.

    One thing I know about life is that there are usually good moments even when things are really bleak. Hang on to those good moments, they'll come, I'm sure of it.


    [This Message was Edited on 08/20/2008]
  13. SpecialK82

    SpecialK82 New Member

    can you explain exactly what you do that is homeopathic? I read a bit about it from time to time but I don't really get it. And how do you apply it to FM/CFS?

  14. kking0412

    kking0412 New Member

    I try not to think about how much I have lost and how small my world is now and how crappy I feel all the time. I try to find things I can do to replace the things I no longer can. I take comfort in my family, all of whom FINALLY get it. my husband, wonderful to the point of not to be believed. the constant comfort of my animals. the fact that finally, by the grace of God and my doctors, my SSD came thru and that is a blessing. I hope the move to AZ WILL make me feel better. I hope that the bloodwork Dr Brewer wants to do when the Medicare finally comes thru might turn up something treatable (Lyme co-infectants)

    and I try not to think that I am going to feel like this or worse for the rest of my life (so far, the stuff* is still progressive.) and I am only 54. and most days I do not consider this quality life.

    *SSD given on chronic Lyme, chronic pain syndrome, fibro. also have CFS, EBV, high HHV6, yada yada yada. you know the drill.
  15. pasara

    pasara New Member

    for a decent basic introduction to homeopathy you might want to check out the abchomeopathy website. they have an article entitled "introduction to homeopathy" that i think might be helpful.

    our family has used homeopathy as our first line approach to health for many years.

    As far as in my own case in recent years, homeopathic treatment has helped me significantly with the following issues among others:

    - physical trauma to body (I was hit by a car, which is what brought on the CFS and FM and CMP)
    - nerve damage
    - muscle damage
    - severe fatigue
    - the underlying issues contributing or causing pain
    - vertigo
    - SLEEP!
    - memory
    - speech
    - depression, anxiety and grief issues
    - brain fog
    - sensory hyper-sensitivity, CNS overload
    - overall strength and stamina

    If you have a chronic condition such as FM/CFS, you can't just dabble in homeopathy though. the abchomeopathy website has a so-called "remedy finder" but don't bother. You really need to find a professional homeopath with lots of experience. It is really worth the work!! If you need help finding a homeopath in your area there are a few resources I could direct you to.
    Go for it!

    [This Message was Edited on 08/17/2008]
    [This Message was Edited on 08/17/2008]
  16. tabby8

    tabby8 New Member

    once I realized how lucky I was not to have a more serious condition or disease. I have a cousin whose entire immediate family is, one by one, being diagnosed with, and dying of cancer. It is a complete nightmare. They buried their father and two brothers, two sisters had cancer surgery, and now a sister has a huge brain tumour.
    So, my plight pales by comparison. Especially when I look at all I have to be grateful for.

    Sometimes we have to look around, and say, "Suck it up, Princess!" So many have so much more to grieve about.
  17. Empower

    Empower New Member

    I cry alot

    Then, I pull myself together and count my blessings

    That I can walk (sort of), and that I can see and hear, and that we have some sort of income
  18. tabby8

    tabby8 New Member

    I am sincerely sorry for what you and others here on this board have suffered. And I will admit, after reading some pretty harrowing accounts here, that my own experience with fibromyalgia cannot match them, cannot even come close.

    But I stand by what I said. We all grieve at first when we realize life will never be the same for us again. But, you see, we still HAVE a life. Very few of us will die from these conditions. So perhaps some perspective is warranted.

    From your bio, Anchorholds, it sounds like your doctor completely failed you. Sadly, I think this is the case with many here. With better care from our health care professionals, our stories need not be so painful, so tragic.
  19. tabby8

    tabby8 New Member

    or else keep this thread going back and forth, but that, I'm afraid, will be an exercise in futility. I know you think I'm being insensitive, as you continually mention the "sucking up", but I would rather not give in to any negative state of mind as a way of life, as you seem to promote.

    What is a life without hope? It's called despair. And I cannot live my life like that, even when I'm experiencing a particularly bad flare, as many here are familiar with. I also refuse to give in to despair when I think of all the tragedies in my life I have experienced so far. You know why? Because life is beautiful. And if you can't find anything beautiful about it, or anything or anyone that fills your heart with gratitude, then I weep for you. An attitude such as that will prevent you from ever recovering.

    I would be careful about telling sufferers here that their pain and suffering is unparalleled. We should be helping each other find the path to wellness, not give each other reasons to lose heart.

    Yes, Lillie17, please keep your eye on that bigger picture!

    Hugs, Tabby
  20. SpecialK82

    SpecialK82 New Member

    thanks so much for the wealth of information.

    I've read some on the website you've suggested and do understand it better. It's interesting that they suggest a single remedy, even with so many different symptoms.

    I'm glad that you found something that helps you!