"As Soon As You Stop Wanting Something You Get It."

[Chris]

T
I just reached a certain point where I got so sick of talking about all this stuff, endless hypothesizing about very far flung and unhelpful ideas, banging my head against the wall with the medical profession, supplements, etc. At some point I just had to ask myself where is this getting me?

Accepting my symptoms at any given moment is one of the only things that's brought me any measure of relief so it's something I am going to explore further. I think it's about a lot more than simply acknowledging the reality of the illness...I wish this were a situation in which I could wage a battle and fight to take my life back. I've got a whole lot of that in me. I've shown that over and over again in other periods of my life but it just isn't getting me anywhere with this so I have to look for another way. I can't put my life on hold any more. I have to somehow learn to live this and I think that that in and of itself may be healing.

Mike--So sorry to hear you are not feeling well. I get what you are saying above. Here's something I've been considering:
Resignation is a word that probably sounds very negative to most Americans--we're such a go getter bunch (we did win the war). In japan there is a saying, shi katta ga nai (it means roughly, there's nothing we can do about it)--it expresses a kind of resignation.
When I lived there it really captured a spirit that was foreign to me-- the sense of resignation. I didn't get it.
At this moment, I notice that a kind of resignation is really not depression, and its more relaxing than fighting (banging head against wall). I am thinking about resignation in a way that is not negative like its usually viewed -- not defeatist. there's a serenity to it--it sounds like giving up, but it's not. As a go getter American, it doesn't really seem like an ideal state, but it's kind of neutral, and I kind of like it.
Just a thought . . .

[Mike]

I would probably need to start with saying that the extreme type of psychological conditioning that is WD, has made me more and more, at times to the point of automatism, switch the thoughts from what I don’t have into what I do have, or its sub-type; what more I do have comparing to what I less had months or years ago, and that the “glass-filling” will continue.

In 2010 when the SS-like symptoms had been gone for 2 years and everything else was very slowly improving it was easy to do what you describe above. I was guardedly optimistic even excited at times about the prospect of recovery. But now that the SS-like symptoms have been back for more than two years and I am in such discomfort it's really hard to see it this way. 80% of the time it's just feels like endless suffering. I can still see modest improvement in my non-episodic symptoms but it's just so hard to see the glass as half full when there is so much minute by minute suffering (confusion, severe muscle discomfort, agitation, etc).

Another thing that helped me was finding something worth living for, “creating” something. For me it would be contributing all I can to this our place here. And, even with my “calcified pineal gland”, lol, (and despite it sounding a bit lofty) I can feel to what extent it is, in fact, a spiritual fight for all of us.


My "something" is cycling.... I have intense interest in it and love it when I can do it but lately exercise has been causing confusion, etc. This is a problem that I've had for 15 years so it seems I may be left with a passion that I can't pursue... Thank you for all of the good work you do here. You are very thoughtful and knowledgeable about withdrawal and living with chronic illness. Keep up the good work.

This last paragraph ties in well with what you wrote, Mike; “I've been putting off living until I am well vs just giving it a go while I am sick”. I SO get it. Here’s how I see it; what helps in my case, is compensating my lack of “living on the outside” (isolation going on in my “real”/more physical life, inability to do things considered so everyday by most of the “healthy ones”) by “living on the inside” as much as possible. And doing it until the next and next stages of recovery are reached. This “living on the inside” I imagine for many of us as exploring the highest floors of the Maslow’s Pyramid, or even adding more levels to it (WD forces us to do it).

I do this for hours and hours a day reading cycling journals. It's very enjoyable but I have to wonder what the point is if I am never going to able to do what I want within cycling. It's not looking so good after 12+ years of illness, 15 years of exercise reactions, etc. I guess it's time to turn to other things, reading, writing, meditation...

At the same time though, trying things out is a way to go, too. You wrote, “On a good day I might push myself a little more and take small risks, small experiments”. I feel the exact same. For a long long time, when, b/c of my “explorative” actions, I brought about a darn wave, I blamed myself terribly. But, as the improvement kept happening, even if so slowly, plus I managed to learn more and more about the dynamics of WD, there’s less and less of the blame these days. In One Flew Over the Cuckoo’s Nest, there’s this scene, in which the main character McMurphy, after having lost the bet about his being able to lift this heavy hydrotherapy console, says to others “But I tried goddamnit. At least I did that.”

I agree with all of the above.

No need to reply to any of this. I am stepping away for a while but will check in down the line.

Thanks again,

-Mike

[Mike]

Interesting, Chris... Yes, accepting the things we cannot change (the serenity Prayer that Sheila mentioned above). That sort of neutral stance can reduce suffering but as Sheila alluded it's about balance and there's a time to be a go getter too. The trick is knowing when to do former and when to do the latter. Thanks,

-Mike

Mike--So sorry to hear you are not feeling well. I get what you are saying above. Here's something I've been considering:
Resignation is a word that probably sounds very negative to most Americans--we're such a go getter bunch (we did win the war). In japan there is a saying, shi katta ga nai (it means roughly, there's nothing we can do about it)--it expresses a kind of resignation.
When I lived there it really captured a spirit that was foreign to me-- the sense of resignation. I didn't get it.
At this moment, I notice that a kind of resignation is really not depression, and its more relaxing than fighting (banging head against wall). I am thinking about resignation in a way that is not negative like its usually viewed -- not defeatist. there's a serenity to it--it sounds like giving up, but it's not. As a go getter American, it doesn't really seem like an ideal state, but it's kind of neutral, and I kind of like it.
Just a thought . . .

[Sheila]

Mike – Now I’m wondering if part of what you’re referring to when you say “acceptance” is related to what I call “self-compassion.” Most of us are too self-critical coming into w/d, and then the neuro-emotion fans that fire. And then, the syndrome is odd, insidious, unrecognized by the authorities, etc. so all that makes it even more likely we will be very self-critical – “Why am I not getting well? What am I doing wrong? I’m too xxx. I’m not enough yyyy.”

And, I think it’s soooooooo good to do whatever we can to be kinder to ourselves and cultivate self-compassion – perhaps we will end up with even more self-compassion than we had before meds.

[Sheila]

Chris – Oh, yes, we U.S. people are steeped in a faster-is-better, we-can-improve-it culture. It’s a tremendous, and unrealistic pressure. What a great cultural artifact you brought back from Japan!

[squirrel]

hi Mike for what its worth i am right there with you!

[stan]

[B]
In 2010 when the SS-like symptoms had been gone for 2 years and everything else was very slowly improving it was easy to do what you describe above. I was guardedly optimistic even excited at times about the prospect of recovery. But now that the SS-like symptoms have been back for more than two years and I am in such discomfort it's really hard to see it this way. 80% of the time it's just feels like endless suffering. I can still see modest improvement in my non-episodic symptoms but it's just so hard to see the glass as half full when there is so much minute by minute suffering (confusion, severe muscle discomfort, agitation, etc).

My "something" is cycling.... I have intense interest in it and love it when I can do it but lately exercise has been causing confusion, etc. This is a problem that I've had for 15 years so it seems I may be left with a passion that I can't pursue... Thank you for all of the good work you do here. You are very thoughtful and knowledgeable about withdrawal and living with chronic illness. Keep up the good work.

I do this for hours and hours a day reading cycling journals. It's very enjoyable but I have to wonder what the point is if I am never going to able to do what I want within cycling. It's not looking so good after 12+ years of illness, 15 years of exercise reactions, etc. I guess it's time to turn to other things, reading, writing, meditation...

Thanks again,

-Mike

i understand all this, but the physical technical logical pattern of recovery is strange, maybe it is as always a last long wave which will vanish

[Mike]

Mike – Now I’m wondering if part of what you’re referring to when you say “acceptance” is related to what I call “self-compassion.” Most of us are too self-critical coming into w/d, and then the neuro-emotion fans that fire. And then, the syndrome is odd, insidious, unrecognized by the authorities, etc. so all that makes it even more likely we will be very self-critical – “Why am I not getting well? What am I doing wrong? I’m too xxx. I’m not enough yyyy.”

And, I think it’s soooooooo good to do whatever we can to be kinder to ourselves and cultivate self-compassion – perhaps we will end up with even more self-compassion than we had before meds.

We could all use more self-compassion. I have been tough on myself when looking back at my life and interpersonal mistakes I make in my current life. I also have shame about where I am in my life, how adrift I am at this age... I've been working on self compassion lately and it really does help.

As far as my illness. I don't really have self critical thoughts similar to the ones you mentioned. I don't think "why am I not getting well" because I know that not everyone this far out heals completely. I haven't put that burden on myself. I don't think "what am I doing wrong" because other than basic supportive behaviors I don't believe that healing comes from something external. I don't see this as a mystery that will be solved with hard work.

What I mean by acceptance is kicking and screaming less on difficult days. Letting go. I have found that this reduces symptom severity. Also more generally working on living with the illness vs. waiting to live until the illness is gone. Also, going back to the title of this thread I can't help but wonder if letting go of the outcome is paradoxically healing.

But as you've said before it's a balance there are times when it makes sense to fight hard through certain circumstance. I am just trying to get the balance right for me.

[Mike]

i understand all this, but the physical technical logical pattern of recovery is strange, maybe it is as always a last long wave which will vanish

I know what you mean about the pattern, Stan. I can't think of anything more perplexing. I had the classic wave/windows patterns in my 2+ year long benzo withdrawal years ago but not so much this time around with the antidepressant withdrawal. Mostly it just feels like one big wave that sometimes gets bigger. I can think of one person whose symptoms did resolve quickly toward the end so who knows it's possible.

[Iggy131313]

who was that Mike? was it the guy you talked about, someones father who stared at the ceiling and then one day was healed?