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

You can view the page at http://forums.aboutmecfs.org/content.php?364-Who-cares-that-I-feel-like-crap-Not-me-(anymore)-by-Suzanne-Wigginton

 

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.

 

Lovely post Suzanne - I can certainly agree with your sentiments and wow how research has moved from stagnant 11 years ago.

 

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.

 

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

 

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 in' 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.

 

Reflection

Accept ILLNESS as part of life ?

Or fight illness in general ?

Who has more right to live, the virus or me?

Do we have to accept the the consequences of illness in general ?

Or is it about the consequences of miss information about our illness, which is affecting us and our children so much more ?

These are all different issues, and once to often get mixed in our emotional struggle to live with what we have to live with: a severe miss perceived and stigmatized disease.

It would be just like any other disease out there (accepted by sufferers - hard - but so be it ), if we and our children get the right to live a dignified sick life !

What we do not have to accept is that health institutions and governments around the globe failing to acknowledge the disease as a serious acquired neuro-immune disease, refusing to invest in research and the possibility of a cure.

The consequences are severe

Around the globe, millions of people (including children) live with severe pain, muscle weakness, bone-crushing physical exhaustion, post-exercise malaise, sleep disturbances, cognitive dysfunction, mental fatigue, severe headaches, just to name a few of the symptoms. Many are home or bedbound for years.

Many patients develop life-threatening complications after being sick for decades and 6% develop Mantel Cell Leukemia. Sufferers have life expectancies thirty years lower than average.

Many patients live in poverty, because they can no longer work; they lose their careers, their businesses, their savings, and their homes. Most are denied disability benefits, by governments that have falsely claimed that ME/CFS is a “psychosomatic disorder”.

Doctors are not trained, or are misinformed about the seriousness of this acquired neuro-immune disease and refuse to investigate their symptoms, or even provide basic, supportive medical care. In some countries, ME/CFS patients are “sectioned” to psychiatric institutions, and are denied the appropriate medical treatment they so desperately need.

Children suffering from ME/CFS lose years of education and normal social interaction with peers. Some school systems refuse to accept or accommodate a sick child’s medical limitations, worsening the child’s condition.

Child welfare officers sometimes remove children who are sick with ME/CFS from loving
and caring homes. Parents are unjustly accused of child abuse, and children are institutionalized or put in foster homes.

As a result of the flawed case definition as well as an inappropriate, trivializing name, patients face discrimination in health care, and alienation and isolation from family, friends and society.

Due to this magnitude of difficulties, suicide rates in ME/CFS patients are very high.

So do not forget, living with a disease is one thing, fighting social injustice is another !

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.

 

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

 

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.

Take care

Bingo! We've hardly even started!

 

acceptance is an activity

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.

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).

 

mir si ues ja einig, hoere me uf stuerme



Just building the train has been tried for twenty years; that's a very long time to fight and hope for cure ! I do not even see the train tracks in all the forest of misinformation and vested interests !

Maybe we do have to build the bulldozer first

I can already hear the bulldozer

 

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.

 

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).

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.

 

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

 

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.

Sending healing hugs to all!

 

Sufferers have life expectancies thirty years lower than average.

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