Im sad

[Dreambirdie]

Somehow expressing my sadness, and seeing it mirrored, has lightened the load tremendously.

Me too! Thanks for inspiring us all with your true expression.

My sadness stays - think it will for a while - it's warranted, but it is a minor theme now. Threads of community, compassion, relativity, peace, joy, acceptance, pragmatism and nowness are swelling again.

Yes, we are all on this ride together... wild mythical teacup ride it is!

 

[silicon]

I am grateful to shrewsbury for starting this thread, and I very much appreciate the moving and profound and insightful comments shared by many others, which all hit home. I also appreciate the reminder that i am not the various aspects of my mind and body that tend to form the perception of my (ego-)identity. I also grieve for the very painful losses, in so many ways, we have each endured with this illness. I find that I feel somewhat alienated from normal society, and generally prefer connecting with those also stricken with this condition, since it seems that generally only we are able to most deeply appreciate this struggle. It heals my spirit (a little) to read this thread.

 

[starryeyes]

Having CFS makes me feel lost like Alice:

But I'm so glad I get to be here with all of you here who understand what it's like to be mad and sad about being ill:

​

starry

 

[Stone]

The loss of one's sense of self and consequently those people who liked that self is one of the hardest things to deal with, I think. I haven't worked in 15 years but I still frequently have dreams that I'm back at work. I have very few of the same friends now that were my friends before I got sick, maybe one or two. When I was well, I'm not kidding, at least once a week someone told me I was the funniest person they have ever met, and at least once a week someone told me I should write a book. I can't tell you when the last time was that I've heard someone say either of those things to me. I'm a completely different person now. My IQ has literally dropped well over 35 points. I never cook, and I used to be a fantastic cook, so much so that people used to pop in unannounced just to eat because they knew I would be cooking something great and I loved it. In the early days of my illness, a psychologist told me that, based on my personality, I would probably have a difficult time adjusting to chronic illness, and that the sooner I could accept my illness and, get this, begin to see myself as a sick person, the better it would be for me. I was appalled by what he said, but looking back now, I can see that he was right and he knew he would piss me off by telling me that but he really did me a favor. He didn't mean that I should give up, he meant that I should live in the moment, the present time. I haven't given up and I'll never give up, but there is a place of acceptance in which I find from time to time some kind of peace. In that place of acceptance, I can take stock of my new skill set, not my lost one. Now I have the ability to offer comfort to others who are suffering. I can spend time with people that nobody considers fun or cool. I can be content with less of this world's goods. I don't feel compelled to put on make up or style my hair if I don't want to. I can be happy with my house a little out of order. I'm not embarrassed because my car isn't new. I can feel God. I'm more patient, less judgemental and less afraid of everything, including death, not that I welcome it or anything. I truly appreciate the good days, and the parts of my body that do work well (I have great elbows!). I actually feel sorry for people stuck in the rat race I used to live in. Yes, I've lost so much, I won't even tell you; I don't need to tell you, but I have gained some things and much of what I've gained is priceless. I've gained some skills that well people will never have, and that's valuable. If I had been given a choice, I would not have chosen this illness, and I would not want to repeat what I've been through, but by the same token, I wouldn't trade the experience for anything. Now, bring on that test, and that effective treatment by compenent medical professionals, and let's get back at the business of being functional. Just imagine what we CFS veterans could contribute to society if we all became well enough to get back to 'living life' but bringing with us what we now know about suffering, patience, lonliness, joy, peace and the truth about what's actually precious and what is not! Wouln't that be something? May we all live to see it.

 

[helsbells]

The loss of one's sense of self and consequently those people who liked that self is one of the hardest things to deal with, I think. I haven't worked in 15 years but I still frequently have dreams that I'm back at work. I have very few of the same friends now that were my friends before I got sick, maybe one or two. When I was well, I'm not kidding, at least once a week someone told me I was the funniest person they have ever met, and at least once a week someone told me I should write a book. I can't tell you when the last time was that I've heard someone say either of those things to me. I'm a completely different person now. My IQ has literally dropped well over 35 points. I never cook, and I used to be a fantastic cook, so much so that people used to pop in unannounced just to eat because they knew I would be cooking something great and I loved it. In the early days of my illness, a psychologist told me that, based on my personality, I would probably have a difficult time adjusting to chronic illness, and that the sooner I could accept my illness and, get this, begin to see myself as a sick person, the better it would be for me. I was appalled by what he said, but looking back now, I can see that he was right and he knew he would piss me off by telling me that but he really did me a favor. He didn't mean that I should give up, he meant that I should live in the moment, the present time. I haven't given up and I'll never give up, but there is a place of acceptance in which I find from time to time some kind of peace. In that place of acceptance, I can take stock of my new skill set, not my lost one. Now I have the ability to offer comfort to others who are suffering. I can spend time with people that nobody considers fun or cool. I can be content with less of this world's goods. I don't feel compelled to put on make up or style my hair if I don't want to. I can be happy with my house a little out of order. I'm not embarrassed because my car isn't new. I can feel God. I'm more patient, less judgemental and less afraid of everything, including death, not that I welcome it or anything. I truly appreciate the good days, and the parts of my body that do work well (I have great elbows!). I actually feel sorry for people stuck in the rat race I used to live in. Yes, I've lost so much, I won't even tell you; I don't need to tell you, but I have gained some things and much of what I've gained is priceless. I've gained some skills that well people will never have, and that's valuable. If I had been given a choice, I would not have chosen this illness, and I would not want to repeat what I've been through, but by the same token, I wouldn't trade the experience for anything. Now, bring on that test, and that effective treatment by compenent medical professionals, and let's get back at the business of being functional. Just imagine what we CFS veterans could contribute to society if we all became well enough to get back to 'living life' but bringing with us what we now know about suffering, patience, lonliness, joy, peace and the truth about what's actually precious and what is not! Wouln't that be something? May we all live to see it.

I only wish I could share your acceptance and patience of the situation, I am actually very uncontented. I can share some I value people more than status now and I am more philosphical about life and death but I actually find god harder to reach and I feel more closed off. I do have profound brain fog and it may actually be physiologocal rather than spiritual but in some ways I feel smaller since my illness.

 

[willow]

Yes, I've lost so much, I won't even tell you; I don't need to tell you, but I have gained some things and much of what I've gained is priceless. I've gained some skills that well people will never have, and that's valuable. If I had been given a choice, I would not have chosen this illness, and I would not want to repeat what I've been through, but by the same token, I wouldn't trade the experience for anything.

I agree with that yet at the same time the grief is like a knife tearing through my heart... (A dirty one, perhaps my penknife that needs a bit of sharpening, it's a dirty jagged cut.)

I was ill as a child and because the doctors couldn't find anything wrong with me I was not ill to my parents either. I didn't have prolonged periods off school but i cannot begin to describe what a struggle life was. To be 10 or 12 or 15 or whatever and to be unrecognised as ill, to decide at that age that I had to conceal it becuase not doing so caused arguements and further isolation.... And the isoaltion was on several levels.. Isolation because I was unacceptable as an ill person, so I felt an unacceptable person, isolation because I was unable to join in with what most of my age were doing and alone at such a young age carrying that myself... Compleltely alone. Coming up with survival strategies, certainly self support strategies.

It is very strange to have had a life and a childhood that is so different to most. I feel huge saddness that there will be other children out there going through something very similar. Pray I can one day do something that eases another such child's saddness because for me being a child like this was much harder. (I used to do some talks in schools for a development aid charity promoting awareness... perhaps that idea could be developed...)

Anyway Shrewsbury, I'm sorry I've gone OT. I wanted to thank you for starting this and everyone for their insights. I'm having a period of grief. My health is improving and I think some of it is about an emotional awakening and a greater realisation of all my losses.

There's a dualism.... conflict. On the one hand it's enriched me and kind of distilled who I am and guided me to some amazing people some of who are inspiring friends.. But there is still a huge, stinging saddness and loss for the more numerous parts of me that see no daylight.

...Think I've lost is a bit. Sorry if it's unfocussed waffle... You've probably been here too!

 

[julius]

Hey Shrewsbury,

I just read this and am surprised how much it resembles my situation with freinds and family. I am actually going to copy and paste it into an email to send them. I have been trying to explain for years why I don't keep in touch, that it's not because I don't care about them.

You said perfectly what I have been failing to get across all these years.

Thanks

 

[jeffrez]

I only wish I could share your acceptance and patience of the situation, I am actually very uncontented. I can share some I value people more than status now and I am more philosphical about life and death but I actually find god harder to reach and I feel more closed off. I do have profound brain fog and it may actually be physiologocal rather than spiritual but in some ways I feel smaller since my illness.

+1 I just wrote some stuff and wasn't going to post it, but since reading your post I think I will.

I'll never "accept" any aspect of this illness. I accept that it's happening, but I don't accept or accommodate it any more than necessary as far as the physical/mental limits themselves impose. It's not "normal" to be sick like this, it impairs and impedes a normally functioning and productive life, and therefore I view it completely as the enemy. I will never "accept" or give in to chronic fatigue syndrome.

I'm a Buddhist, but I'm not much of a "new ager." In fact I resent the extent to which a lot of the new ager jargon and mentality has contaminated original buddhism and has seeped into the culture as the definition of what 'spiritual' is. A lot of that has come from the mahayana/theravadan split itself, but a lot has come from frauds like Joseph Campbell and all his "power of myth" b.s. that everyone seems to worship. I was spiritual BEFORE getting sick. I was intelligent BEFORE getting sick. I was a good person BEFORE getting sick. Getting CFS has only damaged, reduced, and impaired that capacity, just like it has everything else, not improved it.

The idea that a sickness like CFS can "improve" spirituality, which requires MASSIVE energy, concentration, and discipline, I think in most cases is wrong. The new agers have contaminated spirituality to the extent that we are led to believe we are supposed to be "passive" accepters of things like CFS. Nothing could be further from the truth. CFS is anti-spiritual, anti-energy -- indeed, almost anti-life. It diminishes every aspect of our being. It's not something to revel or delight in, or "accept." It's something to fight with every ounce of ourselves, like the warrior samurai who were so skilled and concentrative they could split a hair down the middle lengthwise with their swords. That concentration, skill and power requires the one thing CFS robs us of: normal energy. So to "accept" a disease that has robbed me/us of pretty much everything it means to be human just seems wrong. That "sour grapes" mentality just makes me sick, no pun intended.

 

[MEKoan]

I wonder if Shrewsbury could have predicted what an important teaching this thread has become. I have read, slowly and carefully - nodding thoughtfully, every response and learned from each one.

I think that all life experience offers us an opportunity to, as they say, live and learn. Personally, I've learned way more from adversity that I have from the good times. I don't know why this is but, for me, it's true. I do learn from "good" experiences but more slowly; there is an urgency about adversity that is very useful: I can become just a little bit more graceful and emotionally agile or I can succumb to despair. Either way, the teacup is gone.

Mr. Kite, I am not a big fan of "new age" thinking either. I can get very judgemental about that, actually. ( I am riddled with hooks for snagging shenpa, it would seem.) I am not a seeker, nor do I have wide ranging "spiritual tastes". I am an unorthodox, unaffiliated Buddhist who works hard every singe day to work hard in each moment (which I do not actually manage to do) to understand the 4 Noble Truths and live my life according to the 8 Fold Path and the unadorned teachings of the Buddha. I am neither Mahayana nor am I Theravadan nor do I practice Korean Zen though I do struggle to develop Don't Know Mind. Practicing, in a most wonky fashion, non-judgement as part of my practice has forced me to accept that there just may be something to the ideas of the Joseph Campbells of the world and wisdom in the Bhagavad Gita, the old and new testaments... but my nature remains skeptical. The Dharma has taught me that I just don't know. And, I came to the Dharma through ME. I would never have been able to overcome my judgemental nature without being knocked down and nearly out. I would have kept shoring up the nice warm fire I kindled around my ego and I would have felt that, in order to compete, I had to know and I had to judge. So, all of this to say: for me ME was an opportunity. I'm not saying that I could not have found the Dharma as a well person but I suspect I would not have done so. I also suspect that, if I did find it as a well person, I would have become all caught up in the various schools and judged this one wrong and that one lacking and had I been able to shop for a sangha I would have judged them all lacking somehow. But, as a person with an illness, I needed the tools and the skills the Dharma provided in order to live without despair. I did not jump, I was pushed. (You had the wisdom to jump, Mr.Kite, I didn't.) I can't be sorry.

Anyway, thank you again to everyone who opened their heart in response to our wonderful Shrewsbury with her mad courage!

This thread should be mandatory reading for... ahhhh... everyone!

 

[Dreambirdie]

I'll never "accept" any aspect of this illness. I accept that it's happening, but I don't accept or accommodate it any more than necessary as far as the physical/mental limits themselves impose. It's not "normal" to be sick like this, it impairs and impedes a normally functioning and productive life, and therefore I view it completely as the enemy. I will never "accept" or give in to chronic fatigue syndrome.

Hi Mr Kite--

Thanks for your passionately angry response. I've had CFS for 33 years, and there are definitely times when I have felt very pissed off too, at my limitations, at my symptoms, at ignorant people's inconsiderate remarks and reactions to my illness. So I know where you are coming from, and I can even empathize with some of your feelings.

There have been times when I have found it extremely necessary to be a WARRIOR--to put on my combat boots, bear my fangs, and duke it out against destructive forces (both outer and inner) on behalf of my life and my survival. Often the ugliest and most emotionally brutal battles I was forced to engage in were with those people that I thought were "supposed to be" my allies, and included most of my Darth Vader related family members, my stupid jackass doctors, and my self-centered narcissist boyfriends. But there were also the icky introjected inner voices of self-loathing and self-condemnation that I had to contend with, which could be just as brutal, the ones that insisted I was: worthless, useless and helpless. I still hear from them at times, but thankfully not as much.

Like you, Mr Kite, I don't care for most new age thinking, and I don't consider myself Buddhist, though I have gone to Vipassana sittings a number of times, when I was able to drive and get out of the house. Unlike you, I have found a certain definite comfort in mythic images, even before I knew much about Joseph Campbell. Dreams and myths have always had a great appeal to me, even in childhood, long before I became ill with CFS. But even more so now that I can appreciate the function they have served in my life, and the transcendent reality they have allowed me to experience. Maybe you have to be an introvert to really know what that means.... I don't know. All I do know is that we all do what we can and what we need to do to survive. As long as we are being true to ourselves and aren't hurting someone else in the process, then there is no WRONG way.

 

[Dreambirdie]

Here's a Buddhist myth some may enjoy.

I really like that guy Yama. He reminds me of my favorite meditation teacher.

A Buddhist depiction of life in the cycles of Samsara.

The Tibetan Wheel of Life represents the essence of Buddhist life and the endless cycles of Samsara, or impermanence. It also shows the path out of Samsara, in the form of the Buddha standing on a cloud.

The wheel is held by the deity Yama, the lord of death. This is another representation of impermanence and Samsara, and the fact that eventually we will always come to death unless we can escape the wheel. He is shown as slowly eating the wheel which only reinforces the futility of remaining in the cycle.

However as well as this there is the image of the Buddha pointing to a cloud which shows the way out through enlightenment. This escape from the wheel is a way of hope for many practicing Buddhists. Through enlightenment they may escape the cycles of Samsara after seeing from a step back the whole picture.

Inside the Wheel there are four parts, one with a three animals consuming each other in a cycle, this is the center; the next showing people climbing up one side and falling down the other, showing karma; another, the middle depicting the realms of existence and the outermost depicting the stages of life and Samsara.

The innermost circle depicts a snake eating a rooster, which is eating a pig, which is eating the snake. These represent the three root delusions of hatred (the snake), ignorance (the rooster) and greed (the pig). These are the three aspects that we must conquer if we are to escape out of the wheel (however there are also many aspects that we must develop and sub-aspects of these root delusions.).

The next ring depicts people climbing and falling those climbing are ascending to higher realms due to good karmic actions, while those falling are descending to lower realms as a result of ignorant or evil karmic actions or due to a lack of any good karmic actions (usually as a result of removal from being in a God realm).

The next part of the wheel depicts the six realms, the lower ones, those of the Hell beings, Hungry ghosts (Pretas) and Animals and the higher ones, those of Humans, Asuras (Demi-gods, Titans or Fighting demons are other common Western names) and the Gods (or Devas).

The realms of the Asuras and Devas typically involve longer periods of life and many worldly desires as well as very limited suffering. However these worlds are still subject to the rules of Samsara and so eventually every Asura and Deva must die. Usually the fall from these realms is significant as these beings develop incredible arrogance, greed and ignorance while there.

The realm of Humans is defined as the only realm that one can escape the wheel from and enter Nirvana. This is due to the fact that Humans have the awareness to reach Enlightenment and also a balance of other factors. This meaning that there accumulated karmic potential for there actions is at a sufficient level, while also they do not have the distractions of the Heaven realms to develop ignorance and greed in them and do not have the hatred of the world developed through a stay in the Hell realms.

The realm of Animals is seen as closely related to that of Humans other than the fact that Animals are not seen as having the awareness to reach enlightenment. However they have many of the qualities required to quickly reach the Human realm.

The realm of Hungry ghosts is signified by beings with some unquenchable thirst for anything they cannot attain. Often this involves food and liquids and so they are shown in ways such as having large stomachs but small mouths or holes in there stomachs where all drinks drain out from.

The Hell realms are usually reserved for those with the greatest negative karmic potential. They involve much constant forms of suffering and little in the way of any pleasures. Denizens of these realms may spend extended periods of time in these realms similar to the length spent by Devas in the Heavens. However even those with great negative karma eventually have all of the seeds ripen, and usually are born into the Human or Animal realms afterwards.

The realms are sometimes seen as being individual worlds however they can and are also seen by some as merely states of being in one single world that we are in.

 

[Greggory Blundell]

Of a mind...

You know, it pisses me off that my IQ has dropped by 30 points. That's pretty intimate stuff. That's me that has shrunk! I use to be an intellectual snob and now I can no longer indulge that itch. 30 points. Know what my insurance carrier said? "A drop of 30 IQ points can only be attributed to an extremely serious condition, which you don't exhibit..." Yeah, but I still lost one quarter of me, and that's not insignificant. When your intelligence diminishes, so too do you. You can't shrug that away. We should be screaming that this isn't small change; this is us losing us! Anyway. Pisses me off.

 

[jeffrez]

Here's a Buddhist myth some may enjoy.

CFS = hell and hungry ghost realms. In fact at one point I had a reaction to a supplement that caused severe daily hypoglycemia (pronounced, not easily quenchable "hunger") and weight gain around the middle for about a year and a half, until I partially fixed it accidentally with neurofeedback. I remember thinking at the time, "this is exactly the description of the Preta ("hungry ghost") realm," down to the fact that I actually feel like a "ghost" to society and the world most of the time.

 

[MEKoan]

Hey Greggory,

Your post triggered lots of thoughts but I'm not a good communicator these days so please forgive any idiocy you may encounter in my response.

I used to worry a great deal about not being smart enough. There was no limit on how smart I thought I should be in order to be smart enough so I was never going to be satisfied... ever. When I encountered a limit on how smart I could be, given the limitations of a broken brain, I had to give in. I had to give up an identity based on being smart... or, actually, being never quite smart enough. (Interesting.)

Anyway, when I had to just suck up being stupid, I decided that I would work on becoming kind. What a revelation that was! I began to understand that so much of my desire to be smart was hooked up to my suspicions that I wasn't good and not being good was all about believing that I was not kind enough nor compassionate enough.

So, I had been using clever to flee from facing what I assumed was a bad and worthless "I". When I was no longer smart enough to run, I met an "I" who was deeply flawed and oh so human but who could get down to the business of becoming more kind. I have a long, long way to go but I feel this is a worthwhile effort in a way I never felt being clever was. For me, being clever was a way of distracting myself from the swift and painful fears that always dogged my heals.

Pisses me off, too, sometimes, though, must say.

Peace out,
Koan

 

[Greggory Blundell]

Koan, kind is a helluva lot better than being a smart ass. Your words resonate. Thanks.

 

[MEKoan]

Thank you, Greggory.

 

[Dreambirdie]

Oh yeah, that "smart thing" can be such a pisser. Growing up in a way too smart family, with degrees plastered all over the walls, and being repeatedly rewarded for "how smart" I was, I became one of those kids who fretted over 96% on a test, because it wasn't 100%. No amount of smart was EVER smart enough, brilliant enough and good enough. And it was at the expense of all other inner development--kindness, compassion, real intimacy with others, and the humble awareness that my brain was not the center of the universe. OMG--rude awakening that was! No offense to my brain's intelligence, but now at least there is a little bit more balance in the cosmic order of who I think I am.

 

[awol]

Hey Greggory,

Your post triggered lots of thoughts but I'm not a good communicator these days so please forgive any idiocy you may encounter in my response.

I used to worry a great deal about not being smart enough. There was no limit on how smart I thought I should be in order to be smart enough so I was never going to be satisfied... ever. When I encountered a limit on how smart I could be, given the limitations of a broken brain, I had to give in. I had to give up an identity based on being smart... or, actually, being never quite smart enough. (Interesting.)

Anyway, when I had to just suck up being stupid, I decided that I would work on becoming kind. What a revelation that was! I began to understand that so much of my desire to be smart was hooked up to my suspicions that I wasn't good and not being good was all about believing that I was not kind enough nor compassionate enough.

So, I had been using clever to flee from facing what I assumed was a bad and worthless "I". When I was no longer smart enough to run, I met an "I" who was deeply flawed and oh so human but who could get down to the business of becoming more kind. I have a long, long way to go but I feel this is a worthwhile effort in a way I never felt being clever was. For me, being clever was a way of distracting myself from the swift and painful fears that always dogged my heals.

Pisses me off, too, sometimes, though, must say.

Peace out,
Koan

Koan I like your strategy in theory, but in practice for me it would not work. Because you see, along with my brain I have also lost my sense of humor, and my ability to understand people. Not understanding plus extreme fog and sensory overload equals irritability, equals opposite of kindness. Just keeping my outbursts in check is the best I can do. I am definitely not more kind than before, nor am I likely to be. I can only imagine how depressed and frustrated I would become if I began to feel too guilty about my irritability because I can not meet my standard of kindness.

 

[Greggory Blundell]

Dreambirdie, I hear you. But it's still part of you being ripped away by this illness. On principal alone I want to reach out and denounce its ability to do so. It's wrong. Dylan Thomas had it right, I think, when he said "I will not go quietly into this night..." or something to that effect. Koan's points are spot on. Still, I resent anything marginalising me, including this illness. The insurance folk just add fuel to the flames.

 

[MEKoan]

Hi Awol,

I hope I did not give the impression that one "should" not feel what one feels in all its horribleness. Who is to say that you are not exercising extreme kindness by studiously keeping your temper in check as you do? Who is to say that you are not a model of compassion? Not I!

I never understood the whole "love yourself" thing before I did. I really thought that loving myself was bad because, well, I deserved to be treated the way I treated me: harshly. Then, I just tried including myself in my practice of compassion and I got it! Just being freed up from the energy it took to justify treating myself badly was really liberating. I began to forgive myself for being human: cranky, frightened, judgemental, irritable, reactive... for the simple reason that I was a sentient being, too, and if others could be forgiven so could I. Whoa!

I found out that I was redeemable! That was huge! I found that I could only be kind to others when I practiced radical kindness to myself.

Who is to say that you are not doing that? Who is to say that you have not transcended our ordinary notion of what compassion means by simply identifying the folly in guilt and meeting one's own standards. We cannot know the full landscape of another's effort. We cannot know just what they are overcoming and how much courage and kindness they bring to bear. I think we struggle even to understand ourselves.

I'm so sorry that your sense of humour is MIA! While I understand that it may simply be a biological nasty, I would try a session of (please be patient with me here) Laughter Yoga to see if I could jump start the humour, find a way around the obstacles, rewire funny again!

Thanks for your honesty, Awol, we all get irritable and it's a painful thing.

Peace to you,
Koan