Article: A Choice

You can view the page at http://www.forums.aboutmecfs.org/content.php?197-A-Choice

 

Lisa! I think about you and Jeremy often. I am so glad you have found away to embrace what you have now. I know, with your determination, good things will come your way.

 

I just think the idea of 'stopping resisting' and stopping railing against the way things are - as difficult as it is - is very helpful - its healing (without being curative, unfortunately!). If you're going to have a chronic illness why not work on having as high a quality of life as possible? It is work but it does help.

 

Lisa,

Thank you for sharing your story. The notion of choice is so important.

I made a choice of my own after three years of this disease (early 1997). Everything was falling apart and as you say "chained to a body incapable of hardly even moving at times" there wasnt anything I could do to stop it. My career was dissolving before my eyes, I had lost my apartment (living in the Bay Area at the time - it didn't take long), my saving were gone, I had cashed out my retirement and bill collectors were calling everyday (looking for payment on medical expenses I was sure were going to get me back on my feet). And every time I tried to "will and work" my way out of the downward slide I just got sicker.

I was in a great deal of pain, I couldn't sleep, I was angry, frustrated, confused and going through periods of severe depression. I was starting to seriously consider killing myself. I put together a "suicide kit." In brief, one night I wanted to find out if I dared use it. I woke up the next morning face down on a plastic bag.

Everyday since then has been a choice. No one is forcing me to live with this. Since that day the pain has gotten worse, the disability dramatically so, recently there have been several "life or death" medical emergencies. What I didn't expect was that in a very real way, dealing with ME became a bit easier from that morning forward.

Another important shift has been in my relationship with doctors. When they would say "there's nothing wrong with you" my response was anger, indignant rage and to try and convince them of the seriousness of my illness. Eventually, I came to hear these words as coming from someone who was more afraid of 'not knowing' than me saying "I can't help you and I don't have the courage to simply say 'I don't know what is wrong with you'." I now have a wonderful primary care physician who calls himself my air traffic controller as he manages and coordinates the care provided by a number of specialists, all of whom I respect a great deal (if I didn't respect them, I wouldn't have bothered with a second visit).

 

Hi Everyone! I hadn't been by and seen that Cort started this thread, sorry to be so late!

Thank you for sharing your story CBS. There's something about walking with death for a while that can completely change the way you look at life.

Cort - Thank you for putting my story up on the front page. It is always a great honor!

Frickly!!! It brings a great big smile to my face to see you here.

Rainbow hugs for everyone! Lisa

 

The idea of 'choosing' to be where you are at - if you are in a bad place - is certainly counter-intuitive; our natural instinct is to struggle against it but I think it makes it worse. Sometimes its not the problem but what we say about the problem that makes it so emotionally difficult. Altering how we are oriented to the problem - are we reacting to it? Or are we making a conscious choice to accept it - to let it be - is definitely tension relieving and helpful. I think this is particularly true with pain - research has shown that negative emotions can really increase the pain experience. Far better, if you can, to be in the midst of the situation and not react to it as much as possible - its definitely not easy for sure, its something I'm always kind of working on.

I can see from CBS's avatar that he was really perturbed at what was going .

 

The idea of 'choosing' to be where you are at - if you are in a bad place - is certainly counter-intuitive; our natural instinct is to struggle against it but I think it makes it worse. Sometimes its not the problem but what we say about the problem that makes it so emotionally difficult. Altering how we are oriented to the problem - are we reacting to it? Or are we making a conscious choice to accept it - to let it be - is definitely tension relieving and helpful. I think this is particularly true with pain - research has shown that negative emotions can really increase the pain experience. Far better, if you can, to be in the midst of the situation and not react to it as much as possible - its definitely not easy for sure, its something I'm always kind of working on.

I can see from CBS's avatar that he was really perturbed at what was going .

Over a decade ago I visited a new CFS support group. We went around the room introducing ourselves and sharing a sentence or two about how the CFS had affected our lives.

Several attendees before me stated that they were grateful for CFS as it had taught them lessons about themselves that they would have never learned otherwise. Then it was my turn. CFS was the last thing I wanted in my life. I introduced myself and said that I couldn't feel more strongly that for me, CFS had been a disaster on a number of dimensions and that whatever lessons I was supposed to be learning, there was nothing I could not have learned in some other less catastrophic manner or that there were "lessons" that were in no way shape or form, this important.

In general, my views have not changed but I've stopped waiting for something to come along so that I can get back to my life. Like it or not, for the present (and that is all we ever have), this is my life - all of the ups and downs, the small pleasures and the major frustrations. I can choose to waste the little that I do have wishing it all away or I can find a balance of fighting and acceptance that works for me.

I can't stay angry all of the time (and I can't spend my days making worrying about this or that conspiracy). I really liked Eric's comment on CFSCentral.com regarding the CDC:

To me it seems the way forward can hardly be to prove that they are providing bad work (even though we should do it, if we really can) but for others like the WPI, Dr. Bateman/Singh, Dr. Alter etc. to prove the XMRV/CFS connection, if it exists.

Don't prove that the others don't want to find it, prove that it's there by finding it yourself.

I find that the hardest aspect for friends with CFS and my own friends and family is accepting that THIS is my life, and it's their lives as well. They can accept that this is where I am now (I'm not saying they have to be passive) and me or they can always choose not to be a part of it.

 

Several attendees before me stated that they were grateful for CFS as it had taught them lessons about themselves that they would have never learned otherwise. Then it was my turn. CFS was the last thing I wanted in my life. I introduced myself and said that I couldn't feel more strongly that for me, CFS had been a disaster on a number of dimensions and that whatever lessons I was supposed to be learning, there was nothing I could not have learned in some other less catastrophic manner or that there were "lessons" that were in no way shape or form, this important.

I've always felt the same way. If CFS is a learning experience its been an extremely slow one. I feel I would have learned much, much more if I had been healthy.

 

I think ive learnt far more with this immaginable (have i the right word?) illness. Thou I dont know if they are lessons I would of really wanted to have. It's taught me as much negative as it has postive.

 

I just think the idea of 'stopping resisting' and stopping railing against the way things are - as difficult as it is - is very helpful - its healing (without being curative, unfortunately!). If you're going to have a chronic illness why not work on having as high a quality of life as possible? It is work but it does help.

Much agree Cort acceptance along the way and of something not understood quite yet - but boy are they working on it. Personally been through the worst. As they say "our day will come" and prove the doubters thoroughly wrong. Hope they may learn from their mistakes.

 

In that awesome photo I see you as the horse in the middle rising up on two legs.

 

In that awesome photo I see you as the horse in the middle rising up on two legs.

It is an awesome photo isn't! I keep a file of pictures I might use on my blog at some point and soon as my eyes fell on this one I knew it was perfect for the task. The image of wild horses being free and vibrantly alive is a very powerful one for me. :Retro smile:

I have to agree with earlier comments about CFS being a growing experience. MCS is a heck of a growth motivator too. :tear:

At times I feel as though I've learned enough for several lifetimes though in truth, I also feel like there is a tremendous amount more waiting for me to discover it. Crazy as it may sound, sometimes I am grateful for having been pulled out of my previous life full of normalcy and allowed a chance for personal growth that would be nearly impossible to find while living in that world.

Of course, I would much rather have had a brilliant insight of self discovery which led me to abandon my average American life and journey on a path of enlightenment - minus the huge health constraints ... :tear:

Hope you all have a beautiful day! Lisa :Retro smile:

 

For me I was on a personal growth pattern until CFS interrupted it. I was into meditation as a teenager - I would've been doing some crazy stuff over time, damn - I was checking out Buddhists and Native Americans early on.....and then bam CFS hit, I was back living in suburbia in my parents house. It was unbelievable.

After my mother tried EST I took it and it was really helpful in getting me going but in the state I was in I could hardly digest it.....My concentration sucked, my body hurt, etc. CFS put the kaboong on doing on meaningful progress in that area for decades. I wish I had delved more deeply into that stuff, for sure - it certainly would have helped but I just couldn't imagine it

 

Cort, that is interesting that you took EST. I was actually in the last day of an EST type program the day I crashed. Those kind of programs take a lot of energy. I guess I used the last of my energy doing it. I can't imagine doing it while you are ill.

I am still glad I took it though. I think it cemented a personal outlook for myself that has enabled me to endure this terrible illness.

Lynn

 

Hi Lisa,

I just read your story for the second time, and appreciated it even more the second time around. Thank you for taking the time to write it and share it with us.

I started a thread about a year ago on the Prohealth board entitled, "The Most Important Thing We Do Every Day". It was an enjoyable thread for a number of us, and it all pretty much centered around the topic of choice.

I've appreciated the other responses on this thread and will try to post more at another time. I'm wearing down a bit at the present time.

Lisa, best to you and Jeremy as you focus diligently on the task at hand. I find myself wishing there was something I could do to help, especially since we're neighbors and all (only about 500 miles distance within the great Northwest).

Thanks again for your article.

Warmly, Wayne