One Story of Recovery

[Jj85]

I'm sure a lot of people have already read this, since it's one of the first links that comes up when you type in cfs recovery on google, but I found that it was a very reasonable and comforting look at the story of one person who recovered (and who was in his 50s), slowly but gradually, over the course of 8 years. I put it in the Gupta section because there seems to be a lot of overlap between what worked for him and what Gupta says will work for us.

http://www.recoveryfromcfs.org/introduction.htm

It's made me realize that I probably still have a long way to go when it comes to deeply accepting my illness-- but that's a good thing. It means I have more room left to improve.

[neil25]

thanks for posting this. his account is similar to a lot of other recoveries. I think most people don't want to look for treatements which can make us better but more on how we can manage the condition. i have made drastic lifestyle changes and barely lead the life i used to. i do accept my limitations and when im tired or sore i lie down. however i've got to be honest my cfs symptoms have not changed, lieing down and resting doesn't work for myself. the way this guy speaks is that many cfs patients push themselves too far which i personally dont think is the case i certainly don't go out running, i wish i had the energy but i dont. i think this guys attitude is actually quite ignorant he makes it sound like if you make lifestyle changes your symptoms improve, hardly the case for me yeah pushing myself makes me a lot worse but when i rest and work within my limits my symptoms are not drastically better.

I really wish someone would treat this as a real pyhsical illness rather than the usual attitude you just have to live with it. im sick of hearing that, ive accepted the fact that i may never be able to do anything like i used to, but i'll tell u my symptoms are still present. until doctors can help us these recovery stories are not really helpful. plus one more thing there are some people who are severly affected and are in bed all day. How on earth are they pushin themselves.

[Jj85]

Well that might be a little too critical. He devotes a whole chapter to the advantages he had in getting better over those of others. He admits, for example, that his case was not as bad as other people's, and that being single with plenty of money saved made recovering a lot easier.

That being said, I think we all really have to ask ourselves if we've really, truly accepted that this might be something we have for life. Is that a potential reality that's so scary that we're always holding out desperate hope that things will be better?

I, for one, still get in a bad mood when my symptoms dip, even with all the meditating and other techniques to manage stress. And I know from the tone that a lot of us have here-- myself included-- that we haven't gotten to the point of deep acceptance that may be necessary before recovery can really begin. So I know I, at least, have a long way to go. Also, he said that he would improve at most 1 or 2% per month, and sometimes not at all. He's not trying to make it sound easy. The point is, his advice-- especially the stuff about avoiding any situation which might cause adrenaline-- is still really good, even if for a lot of us, it won't be enough to get us all the way back.

[neil25]

i think its pretty common knowledge by most of us that we know that our symptoms worsen with stress so we usually avoid stressful situations.

I don't think anyone would want to accept cfs, when its at its worst you feel like dieing and to be honest nothing changes that for me. I've come to accept my limited life which is why i dont push myself but i dont think anyone ever comes to terms with the pain and tiredness just cos its so severe. I think people would be insane for accepting cfs on a deep level, natural instinct is that you want to do anything to feel better which is why we keep searching and if it does nothing at least we are trying instead of just sitting doing nothing about it. The xmrv is an interesting area.

[Gattone]

I thought that all gupta programme is about NOT accepting the illness, gupta talks about not only recovery but full recovery, there is a whole section in the programme that wants to convince you can get better, thinking that is possible getting better is a part of the programme

[Jj85]

I think that the Gupta Program is very compatible with deep acceptance. Acceptance here doesn't mean that you're resigned to the fact that you'll never get better. It means that you deeply accept how you are (this sounds a lot like EFT)-- that you don't try to mentally fight against your symptoms all day long. It means that you're simply prepared to experience a lifetime of symptoms, and have the attitude that happiness doesn't completely depend on being healthy.

Again, I think this is just an ideal. I'm sure it would take a long time to get to this point, and I'm nowhere close. But I hope that one day, as an example, I'll be able to feel a stabbing pain in my forehead, and instead of getting angry or frustrated at the impact that headaches and brain fog have on my life, I'll treat that pain as neutrally as possible. I won't wish desperately for it to go away, or think about how much better I'd be able to handle school if I could stay up late and study, or if I could focus better. I won't get depressed when I see other people jogging or playing sports.

In this ideal future, I'd just live alongside the pain and fatigue. I remember one night a few months back where I experienced an amazing retreat of symptoms just by visualizing and planning how to make the most of my life if I never got better.

I think that you can have this outlook, and, at the same time, believe that it's possible that you will get better and also work to get better. The key is just attaching as little emotion as possible to whether or not you actually DO get better.

[efly]

Thanks Jj85,
Good article. I agree ACCEPTANCE ......is part of healing... Not resignation...But acceptance to what is NOW..Not identifying with the state.... seperating from it.The soften and flow IS going into the pain.....accepting it.
This TAKES a deep stress off the body and mind and I think allows the body to heal.''That attitude '' I MUST GET BETTER'' is a flight fight reaction........ increasing adrenaline.
Thankyou for posting.
efly

[Jj85]

Yeah, "going into the pain." I like that, but didn't really know how to express it. I guess it's a pretty basic Buddhist principle, and one that I've begun to apply to a lot of other disappointments and frustrations in my life ever since I've looked towards meditation as a means of treating CFS. We spend so much effort and energy trying to suppress or get rid of our sadness or anger or jealousy, instead of simply trying to live with these emotions-- be "inside of" them. Again, I know that I'm a long way off from being like this, but it's nice to have that ideal there to work towards.

[fox]

It means that you're simply prepared to experience a lifetime of symptoms, and have the attitude that happiness doesn't completely depend on being healthy.

I think it's important to be prepared to experience the symptoms just NOW!

Gupta talks exactly about this, we focus on the future, we focus on the past, both is totally useless and often adding to the stress.

I we manage to be totally one with the terror in the here and now, there is a chance that peace can arise. Thereby reducing the stress, and claming down the overreactive nervous system.

The stress eraser biofeedback device does this trick best so far. Also the stop-technique seems now to relax my mind.

[neil25]

agree with some what u said, u do have to be one with the symptoms. this is why i use the gupta meditation cd. but you did describe it as a 'terror', i dont usually fight the symptoms and but lets be true there is only a certain amount of physical pain people can handle and its at these times i really dont know what to do. when the pain flares up its very difficult to just put a smile on your face and get on with things, its human nature that we find it difficult to cope with physical pain. I thing that i found is that we can just spend all day trying to relax things have to go on, life must go on life is full of stresses thats normal.

[Gattone]

http://www.amazon.com/Full-Catastrophe- ... 0385303122
this is about meditation in cronic pain and illness very good book

[Recovery Soon]

John Kabat-Zinn is one of the pioneers in bringing meditation to the West.

I read one of his other books- "Wherever You Go There You Are" over 10 years ago, and have meditated nearly every day since.

My favorite book of all time.

I've also attended 3 of his workshops, and he is the living embodiment of mindfulness.

Can't say enough about him or his work.

[ldg]

Yes I was thinking of recommending John Kabat-Zinn as well as I read through the posts. Mindfulness is seeing that you are not it, the pain arises and passes away. And what is not painful. I found it impossible to meditate though when I was really bad.

Another way of putting what others have said is what you resists, persists. And that is not incompatible with believing you can get better, which I think is important. Resistance and aversion creates a lot of stress and tension.

Something that I find interesting is that people with multiple personalities can have an obvious symptom/illness with one personality and not the other.

And I think it is counterproductive to be fearful about the future. No one knows what is going to happen so just let it go.

[fox]

Yep, to call this illness 'terror' is actually another case for the stop-technique.
But I think it can be helpful to fully admit how bad it really is. Then we go 'one step further' and stop all 'name-calling'.
We don't define the illness as bad anymore, but also not as good either. (It could be seen as good, because one has to change one's life completely)

Just all definitions are superfluous mind-agitation, which further stresses our systems.

In this context, I love the 'Great Way' by Sengcan.

If you wish to see the truth then hold no opinions for or against anything.
To set up what you like against what you dislike is the disease of the mind.
When the deep meaning of things is not understood,
the mind’s essential peace is disturbed to no avail...

[ldg]

What is also good is the work of Byron Katie, start with the web pages. I really got a lot out of her books, start with Loving What Is, her first book.