1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Article: Who cares that I feel like crap? Not me (anymore) by Suzanne Wigginton

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 12, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    650
    Likes:
    1,012
  2. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,332
    Likes:
    1,851
    Australia
    I agree with the spirit of this post, but as far as "I can write, organize, relfect, meditate, dream, plan, love, communicate and live." goes, the fact is that our quality of such is limited. From personal relationships (due to lack of energy), to our ability to write for more than a few minutes, the fact that our plans (even if we lose our former ambitions) are difficult to carry out etc.

    It is wise to not be all-consuming in a desire to seek a cure that does not exist, but we still need to do something so that a reasonable treatment might exist in the future.
  3. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Lovely post Suzanne - I can certainly agree with your sentiments and wow how research has moved from stagnant 11 years ago.
  4. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    Please don't take this personally, it's not and i know it's important each of us finds a way to deal with the condition one is living in.

    But i think we should never accept this to be our future. We should demand being restored to good health and fight for it. What other illness, especially one that affects so many people, is there, where they would tell people "Just accept it, don't look for a cure"? Unfortunately this is how we have been treated and we have to some degree accepted it (that includes myself), but it's wrong and to be honest, borders insanity. We should strive to achieve the same situation most other ill people are in and that is that you go see a doctor, the doctor prescribes you some sort of therapy and after a while you are well again. And we can do that. Look at this thread as a good example http://forums.aboutmecfs.org/showthread.php?9968-The-answer-is-simple. I believe this is the attitude that will get us all we are denied and what everybody else is enjoying every day. I'm convinced we can do this. XMRV has energized our community and i think we not only have to continue in this spirit, we even have to intensify our efforts, grow them and cooperate across national borders. We need to get up (not literally, but there's much one can do from the bed or chair, with a laptop and an internet connection), move towards a treatment and better health. Push harder and harder and not stop until we are there.

    I have the greatest sympathy for Suzanne, as for anyone who has ME/CFS, so again, this is not personal at all. I want her and all of us to be better and as quickly as possible. Don't let anyone tell you it's not possible. I think we have lived in that state of mind (especially in Europe) for much too long and lost valuable time. Progress probably won't come or won't come fast enough, if we don't go and do it ourselves. Where would we be today without what the Whittemores have done? It would not be the same situations, probably. We need to believe in our success and do it. Then we will have it.
  5. Sing

    Sing Senior Member

    Messages:
    1,302
    Likes:
    422
    New England
    Thank you, Suzanne! I followed what you wrote with my feelings and experiences, questions and seeming dilemmas as well. Your last lines I want to remember:

    "During this season of thanks, I am grateful for the opportunity to try out a new perspective. Do you have unexpected or unconventional blessings to add to your own gratitude list?"

    I appreciated the compassion, honesty and realism of the other posters here too.

    You have evoked a deeper conversation--

    Sing
  6. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    Sorry i have to counter here a bit, but it's just something that's very important to me and not meant in a personal way...

    Do you want to live with this? I DON'T! No :Din' way! It seems a bit like a self fulfilling prophecy. If we think we have to accept it, we might really have to and if we decide to overcome it, i'm pretty sure we will be able to.

    People with cancer, AIDS, pneumonia etc. would just die if they and doctors and researchers would have decided to accept illness. As long as you can't change it, you have to accept it, but only for that moment, while doing all you can to make sure it will change in the future. That's how i see it. And it's not only about us, in the end we owe that to our families and societies as well.
  7. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Thanks Aruschima, I would never want to replace advocacy with 'acceptance' and I agree that some people might draw the conclusion that the two are synonymous.

    It is hard to discern the difference between 'acceptance' and inaction at times. For me acceptance means not allowing the frustrations and fears of ME/CFS to derail me from effective action. Getting angry certainly can propel me into action and it has many times.

    Getting overwhelmed with those problems, which is very easy to do, on the other hand, can be exhausting and disempowering. I feel that working on accepting my situation and allowing it to be just as it is and as it is not allows me, personally, assists me in being more effective.

    I think of 'acceptance' as allowing me a more clear-eyed view of the situation.
  8. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    I understand what you mean Aruschima. I also accept that there are individual cases (sorry for that word, i don't know a better one) where there can't be a cure. But i don't accept the fact that for an illness in general there can't be one. Yes, there are some illnesses, where at this moment, there is no cure, but i believe it is possible to find one, given that the necessary resources are invested.

    I just feel very much, that we have swallowed the "there is no cure for CFS" line much to much. How could there be, with the little money that has been spent? Spend the same for ME/CFS as there is for other illnesses and then see where we can get. We have not even started yet.

    I also don't run for any cure, in fact i have never had any treatment so far, so i totally agree with you that an individual person has to carefully make his decisions and not exaust or hurt oneself through the effort of finding a cure. I think we have to fight smart and my idea of that is to pace ourselves, take good care of ourselves, so we can survive until there is a good treatment and at the same time do all we can to arrange things in such a way that we will have that treatment as soon as possible. And that means money, in the first place.

    I don't think we should wait for the train, we have to build it. In Europe, we lack that spirit a bit, i feel sometimes, that's why i admire what the Whittemores have done. Of course, it's easier if you're rich.

    Take care ;)
  9. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Bingo! We've hardly even started!
  10. sandgroper

    sandgroper

    Messages:
    71
    Likes:
    35
    west australia
    acceptance is an activity

    My ME symptoms have been so severe that the even reading this post would have been impossible, let alone responding. Acceptance is definitely something I aim for. Its a fundamental aspect of my philosophy of living.

    This is not to say I find it easy. I don't. Because acceptance is an action (the reverse of resignation) I need a certain level of wellness to be able to do it. Hopefully I am going into one of those spaces where I can write a little and plan a wee bit. For 5 years I have not been able to much of either.

    FOr years before that I tried to live as though I was healthier than what I was. SO acceptance of the illness and the situation with regards to the mistreatment I have received as a result of the illness, may paradoxically I may actually improve as the quality of life as (as suggested). That may not make sense but I do not think acceptance means that we do not work for change in ourselves, in advocacy, in our envirnoments. Its part of the phiosophy of mindfulness.

    When I am very ill there seems to be an uncontrollable rage which I also have to accept - sort of accepting non acceptance.

    So I sort of agree with all the coments (if that makes sense).
  11. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    I can already hear the bulldozer :cool:
  12. Xandoff

    Xandoff Michael

    Messages:
    292
    Likes:
    184
    Northern Vermont
    The spirit, the body, the heart, the brain and our soul all weigh in the balance to eek out a life through the heavy lens of our CFS lives. Who really does care..or can even fathom that we feel like crap, especially when we look somewhat normal. I applaud Suzanne's voice and thank her for sharring some of the complexities we all know as the CFS blues.
    I have arthritis, stenosis and a pinched nerve (from cervical disectomy with fusion) that is aided and abetted by the Marhall Amplifier of Pain known as Fibromyalgia. I tested positive for XMRV.

    Managing my pain and dealing with a system that doesn't work is a big fat stressor.

    "The fact that there are things on the could-do list that are out of my reach is a blessing of clarity about where my time and efforts are best spent in the moments that make up my today."


    Thanks Suzanne...I enjoyed "hearing" your voice.
  13. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    This is interesting to me because acceptance does take some work and if you're really out of it that would make it more difficult.

    The other side of acceptance is, as you say, accepting how ill you are - instead of pretending that you're not....and finding what is truly the right level of activity for you. I think that's very hard to do!

    Of course that's impossible for some people financially but if you're not in that situation then accepting that I'm in pretty bad shape and I just need to rest - and not do alot of the things I want to do - can obviously be quite helpful.
  14. Sue C

    Sue C Sue C

    Messages:
    33
    Likes:
    1
    NJ
    This is an intense thread, due to emotions raised when one tries to express their innermost experiences. Somedays, cannot even read the Forum as am too sensitive and reactive. It has been the nature of the beast. Can see the truth in the many comments given. Yet, have found honesty and compassion right here with the company of you who struggle, too. Many as mentioned longterm have seen development of secondary diagnoses that can lead to more frustration as if you are doubted to the existence of the primary illness, then to get a second or third dx that is recognized as a real illness....is almost too much to bear. That is what am facing now. My cognitive area has downgraded recently, so I humbly attempt to make sense and thank all who contribute whether it is activism or turning inward seeking balance and quality in whatever way one is guided. As you, Suzanne, I have been inspired by Laura H. and her will to achieve beyond her physical limits. To me, she is an activist in every interview never shielding her dx of CFS. As a former medical professional, that term still creeps me out. In attending last NJCFSA conference, it was empowering to be in company of researchers and doctors who have dedicated years of their lives to make the gains, fighting for us, for a better outcome.. A dollar, a prayer, good intent their way is all that many can spare but can do. Balance is so important and anger depletes. Thank you Suzanne, for your thoughtful effort to share. And to Cort for having PRF as a touchstone. _SueC
  15. ahimsa

    ahimsa Senior Member

    Messages:
    1,051
    Likes:
    917
    Oregon, USA
    I'm not at my best mentally right now, so I might be repeating a thought or idea that someone else already posted, but here goes:

    I don't think that ME/CFS advocacy is in any way opposed to acceptance. We must first recognize and accept the present situation, whether it is our personal situation or the current state of medical research on ME/CFS, before we can figure out what might be helpful in dealing with the situation.

    Acceptance is about the present moment. You can't accept the future because no one can predict the future.

    In other words, acceptance doesn't include anything about the future, such as, "I give up" or "I will always feel this way" or I will never get better" or "there will never be a treatment or cure." To me, acceptance must always be phrased in the present tense, such as, "this is the way I feel now" and "denying my symptoms is not helping me" and "it's okay if I need to rest." It's not only living life "one day at a time" it sometimes comes down to living life "one minute at a time." THIS TOO SHALL PASS.

    We (and I include myself) do tend to live our lives as if tomorrow will be pretty much the same as today. But really we don't know what each day will bring. We can only do our best to live our lives in the best way possible (and what is "best" differs for each person's situation). Yes, we do have some influence over what happens to us but many things are out of our control. Acceptance is about not fighting against the present moment, not being in denial, not judging ourselves harshly for our shortcomings (whatever those may be). It says nothing about not trying to work for a better future. In fact, I think acceptance is a key factor in helping to make a better future.

    :hug: Sending healing hugs to all! :hug:
  16. Questus

    Questus Senior Member

    Messages:
    125
    Likes:
    87
    Sufferers have life expectancies thirty years lower than average.

    Where did you find this information??? Please support this statement with a link!

See more popular forum discussions.

Share This Page