This Illness: Effort does not Equal Recovery

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Nov 4, 2009.

  1. Elisa

    Elisa Member

    Hi All,

    I have had this DD for about 14 years. In the last several years I have not held my ground - mainly because of a fever for the last 2.5 yrs.

    I have noticed that my family thinks because I am not improving or getting better thay insinuate that I have "given up." Sometimes I want to, no question, and sometimes I feel like I am hanging on by the tiniest thread.

    But what is so upsetting is the concept that recovery=trying OR improvement=effort OR giving up = going downhill.

    I feel I have tried as hard as I am able for the longest time. In fact, I remember as a young girl feeling sad about having the flu and then thinking I will be well soon I just have to wait a few more days. And that is what made it tolerable - knowing I was going to recover.

    Having an illness for so long without the true notion that I will recover is nearly unbearable - does that make sense? That is what makes this DD so so hard.

    Anyway I am looking for communication tips with my family/parents - so that I can stand my ground. Mainly - explain to them that my recovery is not tied to my efforts - in fact it feels the opposite some days.

    Obviously I feel very bullied...I wonder how many of you feel this way. It's an intolerable burden on top of an impossibly difficult illness that seems to respond to very little - at least for me.

    Love to hear your thoughts...

    God Bless,

    [This Message was Edited on 11/04/2009]
  2. jasminetee

    jasminetee Member

    I happen to be watching the PBS version of Queen Elizabeth I. I just had to share that with you. :)

    I'm sorry to hear you've been so ill and with fever for so long. That indicates to me that you are in a severe stage of CFS and rest is what you need. That's not giving up, it takes a lot of discipline to do it. I hope and pray that you start to feel better and that your fevers stop.

    I've been bullied too by certain people in my life and it is extremely difficult to bear when one is suffering continuously with no end in sight.

    There are several books that have helped me deal with this. There is a book called Controlling People by Patricia Evans that I've read and highlighted and earmarked and also the Boundaries series by Cloud/Townsend. They have a workbook that I filled out completely as well and has helped me a great deal.

    Also, the CDs by Byron Katie have taught me to accept reality, as in, that I can't control or change other people, only how I respond to them and what I think about how they treat me.

    Being bullied is one of the worst things I've had to deal with. I didn't know before I started learning about it that it is very detrimental to our physical health as well as mental and emotional. One of the places that talks about this is a site called

    The truth is you can rarely change others but you can learn how to respond to them and take your power back. Once you've tried to educate them about how pushing is detrimental in CFS then they should be supportive of your needs, whatever they are at the time.

    I've heard of PWC who have gone into a recovery state by resting and taking it easy for long periods of time. Our bodies want us to rest so they can do the work of trying to heal us. Often pushing through that can make us much worse.

    I know how daunting it is every day to deal with the prospect of not ever being well again. If we have any chance of recovery then we must rest as much as we have to.

    A suggestion I have is to try to educate your family about this aspect of our illness. It's completely different than any other illness I know of in this regard. Then lay down the law. They are not allowed to discuss how you are handling your health unless they are being supportive. You have that right.

    [This Message was Edited on 11/05/2009]
  3. Ales

    Ales New Member

    I experienced the same kind of maltreatment from my parents for 11 years. I think it's some kind of superstition, the notion that one would not recover from say cancer if he "gave it up". The Psychosomatic Superstition also serves healthy people not to accept the painful fact that our lives are so dependent on physical causes over which we have no control.

    If the causative role of xmrv or of something else in CFS is established we should document carefully the decades long abuse of CFS patients by not only health proffessionals and medical and social institutions but also by ordinary people, relatives etc. It should be similar to what have been done for the documentation of holocaust so that mankind get learned.

    Excuse any possible imperfections of my English
  4. Dlebbole

    Dlebbole New Member

    Hi Elisabeth, I have been thinking of you and your chronic fever. I tried to look at your previous posts, but I got overwhelmed! Can you please briefly summarize what you have tried for this? It doesn't have to be all-inclusive....I just want to know if anything (other than sunshine!) has really helped as of yet....? Hang in there!
  5. Elisa

    Elisa Member

    Hi Tee!

    I love Queen Elizabeth really good? I should look for it. Last PBS program I watched was the Jane Austen series - I loved it - I even ordered Sense & Sensibility - really really good.

    Thanks so much for your reassusrance about my fever. It really helps me.

    And a very big thanks for the book suggestions. I use amazon alot and will write these down. I read the Bounderies book in the past and it was really helpful - so I should re-read it to refresh my recollection - and help myself.

    I like the idea of a CD too - I can listen to it in bed while resting - excellent suggestion. I am having a hard time accepting the reality of this illness - even after all these years.

    I'll check out bullying website - so I can understand it better.

    You are so wise - you're can't change others - it's a hard thing to accept - especially around sensitive subjects like this illness.

    I need to put up signs in my house - REST, REST REST - ITS OKAY TO REST.

    And another from your suggestion - REST to get BETTER!

    I do send my family e-mails of articles and my Mom even went with me to see Dr Cheney yrs ago - but they have Puritan work ethic ideas - all about will and hard work and not letting up. So you can see where I got it from - now I need to unlearn it to survive.

    But I am so grateful for friends like you - you all are my lifeline and your voices are comforting and your supportive words, ideas and advice follow me throughout my day.

    God Bless and Hugs,
  6. Elisa

    Elisa Member

    Hi Ales,

    Excellent English!

    You are so right - healthy people can not comprehend the loss of control in our lives and the hard reality of living this way.

    I so agree about documenting the treatment we have suffered - I was just thinking about the Holocaust last night. Yes, we must all learn to care and love each other and not increase suffering. Our doctors so need to learn this too. If they can't identify an illness it doesn't mean it's not real. And it doesn't mean we are crazy either.

    Blaming the patient or worse stigmatizing the patient because he/she doesn't get well - is a medical crime.

    There is a big lesson on compassion that needs to be learned by many in the medical profession.

    Thanks so much for your support!

    God Bless,

  7. Elisa

    Elisa Member

    Hi Caldonia,

    Thanks - that's great advice. So do you rotate Cat's Claw and GSE - say weekly? Any others you use?

    Do you feel that your fever was fungal/bacterial/viral? How fast did you respond?

    You always have the greatest advice...thanks so much!

    God Bless,

  8. Elisa

    Elisa Member

    Hi Dlebbole

    Gosh the nicest words I could hear are ...

    "I have been thinking of you and your chronic fever."

    I am so grateful for your help and for thinking about my situation.

    I have been sick for about 14 yrs. About 5 yrs ago or so I got a bad lung infection/breathing problem - severe - couldn't breath - out of no where - on top of the CFS. In the back of my mind I always thought it was my teeth - had no cavities until age 35ish then wham one root canal after another. In fact the last root canal I had early this year - messed up my swallowing - now I puree my food - good grief.

    Anyway I have tried most supplements, antibiotics (for 4 yrs - azithromycin). My fever started about two yrs into the antibiotics and about a few months after I started B12 shots.

    My blood work shows multiple elevated viruses, elevated ANA, and super widely fluctuating thyroid TSH (from .01 to 3).

    Sometimes large doses of Vit C brings the fever down - or really good sleep. But my fever never stays normal more than 5 days in a row - maybe in the last 2.5 yrs.

    It is a fever that sometimes goes away at night and sometimes not. I guess when it goes away at night it's called diurnal. I have studied fever patterns - for clues.

    I have a mainly organic diet, some raw, and gluten free diet. I have celiac - by blood work and genes.

    I take many supplements daily - including ribose, CoQ10, grape seed extract, zinc, magnesium, Vit C, lots of green drinks (Field of Greens by Vibrant Health) and juicing, MSM, multi, selenium, milk thistle, cod liver oil, flax oil, flax seed, biotin, B complex, RNA, whey protein, st johns wort. I've probably left out something.

    I've tried oregeno oil, melatonin, a little transfer factor...colostrum.

    I hope this helps a little...

    God Bless You,

    [This Message was Edited on 11/05/2009]
    [This Message was Edited on 11/05/2009]
  9. Dlebbole

    Dlebbole New Member

    At my low, quercetin helped me significantly....not a complete answer by any means, but it got me to the point where I could leave the house and that was big, at that point.

    Turmeric too is a biggie for me. While we are waiting for effective treatments, finding things like this is the only game in town.

    The fact that you know the sun helps you makes me think it is worth the risk (the tanning beds). Sigh....good luck! I will follow your progress...