Make sense of/Observe/Honour Feelings and Emotions in the context of Chronic illness

[Ester]

Hi,


For context I have diagnose of ME/CFS that appeared around 2017. This illness, for who doesn't know it, affects many (maybe all) systems in the body and makes hormone levels and other regulators do crazy fluctuations. It also makes my heart rate increase or to be irregular. It all has the effect of, sometimes, "creating false" emotions that have nothing to do with my real situation and my real mental state. For example, I may be having a wonderful day, my life is nice and the day is sunny but suddently I feel anxiety or sadness. This is consistent with the research on the illness, and knowing that the emotion is disconnected with my reality helps to cope with the emotion. But it still sucks, of course.
On the other hand it has taught me to, more easily, observe my emotions and feelings and not to indentify myself so much with them.
Also, in NonViolent Communication it is said that feelings help us to understand when our needs are met or unmet (needs in NVC are, for example, love, security, connection...) and that all emotions are to be aknowledged and honoured. But since the onset on ME/CFS my emotions are not always useful to understand my unmet/met needs.

In this context I'm trying to figure out how to better understand and relate to my feelings and emotions specially in the context of my practice.

I'm not struggling. It's not something that is creating much suffering and I relate with this situation with a sense of openess trying to learn from it. So, I'm grateful for any insights, reflections and comments.
Thanks!!
Gassho,
Ester
Satlah

[Kokuu]

Hi Ester

Thank you for writing about this. I have been living and practicing with the same condition since 1996 and find my experiences are pretty much the same. Living in a body which I do not feel in control of, and which can change how it feels at a moment's notice does bring a need for openness to what is happening right here, right now, and doing what is needed in the moment rather than being able to plan. Of course, all human lives are like this, but living with chronic illness pushes the dial up to 11.

I find wisdom in the koan Master Ma is Unwell (case 3 in the Book of Serenity):

Master Ma was unwell. The monastery superintendent asked,

“Master, how has your health been in recent days?”

The Great Teacher said, “Sun-face buddha, Moon-face buddha.”

Sun-face buddha lives for a very long time, whereas Moon-face buddha lives for one day and one night. Sometimes we feel like Sun-face Buddha, sometimes like Moon-face buddha. All we can do is acknowledge the reality of how things are and know that whether we have a Sun-face or Moon-face in a particular moment, we are still buddhas.

Impermanence is one of the three marks of existence identified by the Buddha but impermanence itself is not the problem, it is our wish for things to stay the same, or only to change in ways that we desire. Learning how to live with this is a practice that is especially necessary with chronic illness and we can notice the fluctuation of physical sensations, thoughts and emotions without needing to cling on to any of them or push them away, just making space for everything.

As you say, Ester, that doesn't mean that it doesn't still suck, but it definitely makes things easier.

Thank you for your practice.

Gassho
Kokuu
-sattoday/lah-

[Matt Johnson]

I have nothing to offer regarding CFS/ME specifically. But where I see a lot of overlap with my illness is how useless modern medicine often is with regard to many illnesses (up to and including not being believed). Now that is a conversation I could get into.

Here is an interesting meta-analysis to open up some discussion. How do you feel about this?

https://pmc.ncbi.nlm.nih.gov/articles/PMC8305555/

_/\_
sat/ah
matt

[IanSmith]

SFZC Dharma talk "Gratitude" by Myogen Steve Stucky, Oct 2013 may be helpful.
Gassho
Sat/lah

[Kokuu]

SFZC Dharma talk "Gratitude" by Myogen Steve Stucky, Oct 2013 may be helpful.
Gassho
Sat/lah

Thankyou for that suggestion, Ian. it looks like one that Steve gave near the end of his life.

Gratitude is a very helpful attitude and practice for chronic illness, and much more besides.

https://www.sfzc.org/teachings/dharma-talks/gratitude

Gassho
Kokuu
-sattoday/lah-

[Koriki]

but impermanence itself is not the problem, it is our wish for things to stay the same, or only to change in ways that we desire.

Yes, that. Just that.

I do find that I try to focus on acceptance most of the time, but I do put my "this is unacceptable" hat on from time to time, which does motivate me to try to find a new treatment, make a doctor appt that I've been putting off, etc. I'm trying to see it more from the perspective of "If life puts you in a cage, turn it into a Zendo" mindset, but it's an easier thing to say than to do.

Steve Stucky's talk was inspiring, but more from a view of Zen practice while dealing with a sudden terminal cancer diagnosis. His diagnosis was clearly very new and he was just beginning to process it. His grace under pressure was quite inspiring.

I find gratitude to be somewhat elusive in the sense that profound gratitude isn't accessed directly. Yes, we can do gratitude lists and the like, but that deep feeling that all is just fine as it is (which seems to naturally lead to gratitude) is something that for me doesn't come up when I'm looking for it. I'd suspect it happens to me the more still that I am, but it is probably triggered by other things as well.

Gassho,
Koriki
s@lah

[Kaitan]

Hi Ester,

I do suffer from burnout caused by trying to not make mistakes and has stacked for many many years. I'm starting to learn to Gasshō to all my problems and that has slowly cultivated compassion to myself for even not having compassion all these years (a dimension I didn't know could be experienced before practice).

So what you said about honoring your feelings resonates a lot with me, thank you, and I'm glad you have found a way to live with your struggles. Being open and vulnerable also helps other people in one way or another.



stlah, Kaitan

[Houzan]

Hi Ester. Thank you for sharing this. Your story is an inspiration for all of us You obviously have a wise approach already so not sure if my input will be of help.

I suffered a lot from long vax for a while, and still do but to a much lesser extent. My life now is close to what it used to be, and I’m very grateful for that. I found acceptance, curiosity and purpose to be very helpful in this suffering.

Acceptance in terms of deeply understanding that this is my path and that comparing this path to an ideal is just delusion. There are no alternatives. It’s a sense of completely surrendering to the situation so that it’s not really a situation any longer, it just is. Nishijima put it really well: “Buddhism is a religion of realism”.

Curiosity as in being mindful of the emptiness of all the emotions and sensations. As Joko Beck said: “emotions are really a combination of thoughts and physicial sensations”. Physical sensations a combination of temperature, pressure, wetness, etc. It helps me just receiving it all and not rape reality with concepts and parasitic processing.

Finally, defining a life purpose aligned with helped me a lot. It made me see my life as a life of service: I serve my two girls, my family, my friends, and this sangha. I changed my job to help accelerate the green transition. And I prepare everyday to, at some point in the future, be able to introduce zen to people who are resistant to the traditional packaging of our way, improving their lives. It puts my suffering into perspective and infuse it with meaning, and our way is at the very core of all this.

Sorry for running long.

Gassho, Hōzan
satlah

[Onki]

Thank you everyone for sharing your stories. It takes courage to speak about these parts of ourselves. At least, it used to for me. Now I won’t stop talking about them! Hahaha!

I am still coming to terms with having fibromyalgia and BPD all within the same year. For so long I have pushed away my symptoms, ignored them, brushed them under the rug.

But you cannot run for long.

As Kokuu said, each and every single day is completely different from the last. One day my body can be feeling relatively good. I am able to go for a walk, do some photography, drive somewhere. Then the next day I can barely get out of bed.

I understand life is ever changing, Impermanence is real. And that doesn’t make it suck any less. Desperately holding on to some sort of “control” where I am the one in control, I call the shots, things never have to change… but that isn’t reality.

Reality is growing old, accepting that I cannot control everything, managing the best that I can with what conditions I have. It isn’t easy. There are times where I wish I was my former, younger self. He didn’t struggle so much… his body was in terrific condition, and he could easily hide his mental illnesses rendering them almost undetectable. But that was then.

How I enjoyed those times where I didn’t have to worry about medications, specialist appointments, steroid injections (for fibro), hospital visits, whether I could get out of bed in the morning, how long and far I could walk before needing to stop and rest, losing the ability to do my favourite activities…

As I said, I am still working on acceptance. I still grieve for the body and mind I once had. It is all a process. Not a fun process, but a process nonetheless. I am learning to sit with these uncomfortable emotions when they come up and not running away as I previously would have done. Giving them space, letting them know that all thoughts are welcome, to a point. Once the thoughts become overwhelming or intrusive, for me I need to regroup and try a different strategy.

Letting go of control has quite possibly been the most difficult thing. I still grasp onto thin air, hoping things will change. But they haven’t.

However, I am able to feel when a BPD/depressive episode is occurring (most of the time), I can tell when I am in a fibro flare, I know when my blood glucose is getting too low, I am learning about pacing myself and my body etc.

Maybe I am not completely out of control. There are in fact, things that I am able to do to try and help myself. They may not all work but at least I have tried.

Gasshō,

On

[Ester]

Hi Ester

Thank you for writing about this. I have been living and practicing with the same condition since 1996 and find my experiences are pretty much the same. Living in a body which I do not feel in control of, and which can change how it feels at a moment's notice does bring a need for openness to what is happening right here, right now, and doing what is needed in the moment rather than being able to plan. Of course, all human lives are like this, but living with chronic illness pushes the dial up to 11.

I find wisdom in the koan Master Ma is Unwell (case 3 in the Book of Serenity):



Sun-face buddha lives for a very long time, whereas Moon-face buddha lives for one day and one night. Sometimes we feel like Sun-face Buddha, sometimes like Moon-face buddha. All we can do is acknowledge the reality of how things are and know that whether we have a Sun-face or Moon-face in a particular moment, we are still buddhas.

Impermanence is one of the three marks of existence identified by the Buddha but impermanence itself is not the problem, it is our wish for things to stay the same, or only to change in ways that we desire. Learning how to live with this is a practice that is especially necessary with chronic illness and we can notice the fluctuation of physical sensations, thoughts and emotions without needing to cling on to any of them or push them away, just making space for everything.

As you say, Ester, that doesn't mean that it doesn't still suck, but it definitely makes things easier.

Thank you for your practice.

Gassho
Kokuu
-sattoday/lah-

Thanks Kokku,
sometimes I feel like life has put me on a Master's degree on acceptance when I was still in kindergarden.
But I'm trying, I'm trying.
This book of serenity contains by any chance more teachings on living with illness?

Gassho,
Ester
Satlah

[Onki]

Thanks Kokku,
sometimes I feel like life has put me on a Master's degree on acceptance when I was still in kindergarden.
But I'm trying, I'm trying.
This book of serenity contains by any chance more teachings on living with illness?

Gassho,
Ester
Satlah

Hi Ester,

I found this:

Case 94
The Book of Serenity
Dongshan is unwell

• A monastic asks Dongshan, "You are ill, teacher, but is there anyone who doesn't get ill?"
• Dongshan replies, "There is"
• The monastic asks, "Does the one who doesn't get ill look after you?"
• Dongshan replies, "I look after him"
• The monastic asks, "How is it when you look after him?"
• Dongshan replies, "There I don't see that he has any illness"

https://everydayzen.org/teachings/do...0and%20fearful.

Gasshō,

On

[Ester]

I have nothing to offer regarding CFS/ME specifically. But where I see a lot of overlap with my illness is how useless modern medicine often is with regard to many illnesses (up to and including not being believed). Now that is a conversation I could get into.

Here is an interesting meta-analysis to open up some discussion. How do you feel about this?

https://pmc.ncbi.nlm.nih.gov/articles/PMC8305555/

_/\_
sat/ah
matt

Thanks Matt,
I'll take a look at your link and I'll let you know what I think and feel about it.
I'm familiar with the feeling of not having your symptoms believed to be of physiological origin. It can be quite frustrating.
And with the feeling of medicine admittedly being unable to offer anything to help you with your illness but, if you are lucky and find a knowledgeable doctor, some advice on how to manage it in your daily life.

Same goes for alternative healers. Many believed that they knew how to cure me. Some made me worsen, or waste a lot of money, or both.

The only thing that has worked and made me improve a huge lot was an alternative neuroplasticity program. I went from needing a wheelchair to be able to, some days, hike some kilometers and from being unable to focus enough to read to be able to read again. I was life-changing.

Gassho,
Ester
Satlah

[Ester]

SFZC Dharma talk "Gratitude" by Myogen Steve Stucky, Oct 2013 may be helpful.
Gassho
Sat/lah

Thanks so much! I'll listen to it with interest
Gassho,
Ester
Satlah

[Matt Johnson]

Thanks Matt,
I'll take a look at your link and I'll let you know what I think and feel about it.
I'm familiar with the feeling of not having your symptoms believed to be of physiological origin. It can be quite frustrating.
And with the feeling of medicine admittedly being unable to offer anything to help you with your illness but, if you are lucky and find a knowledgeable doctor, some advice on how to manage it in your daily life.

Same goes for alternative healers. Many believed that they knew how to cure me. Some made me worsen, or waste a lot of money, or both.

The only thing that has worked and made me improve a huge lot was an alternative neuroplasticity program. I went from needing a wheelchair to be able to, some days, hike some kilometers and from being unable to focus enough to read to be able to read again. I was life-changing.

Gassho,
Ester
Satlah

Yes please don't get the impression that I am giving advice or suggesting ignoring medical advice. I can only look to my own experience in not being believed about my disability or not believing myself to fight for what I need. Also not being empowered to be an active participant in my own healing. I also wonder sometimes if we find our way to meditation because no one else seems to be able to do anything for us...

How do I deal with the feelings of lack of worth?

Why do I feel the need to make up for my disability? To compensate for it...?

Why do I feel guilty that I am not the mother, father, sister, brother, son daughter etc that I want to be.

Sorry I made this about me

_/\_
sat/ah
matt