[HealthDharma] ME/CFS and Rohatsu

[Gooey]

I would like to join in with Ango this year but am feeling apprehensive about how my body will handle the Rohatsu sesshin due to fatigue from ME/CFS, even though it is short as far as sesshin goes. I know we have several other Treeleaf folks who also have ME/CFS who have experience with this - I'm wondering if you have any words of advice or things that have been useful for you? I would also welcome hearing from anyone else who experiences chronic pain and fatigue, and post-exertion malaise in particular.

Gassho
Gooey (sat/LAH)

[Matt Johnson]

Hi Gooey, I don't have ME/CFS though I think Kokuu does (I have a feeling he will respond in due course). I do have chronic back pain and I meditate lying down.

My feeling on this is to participate in any way that makes sense for you. If all you can do is sleep the whole way through then sleep as mindfully as you can. If the pain keeps you awake then sit with it as long as that makes sense for you.

ME/CFS sounds like a terrible combo. Maybe you'll find yourself in a good balance between falling asleep and being in pain? But again only you can decide where that edge is for YOU.

Warm regards,

_/\_
sat,/ah
Matt

[Onki]

Hey Gooey!

I have fibromyalgia which makes sitting Zazen challenging at times. I used to force myself to sit on the floor on the zafu because if it was in any other position I felt like I wasn’t “really sitting Zazen.” Of course nowadays, I understand that way of thinking is not helpful and is actually quite self deprecating.

I discovered that ALL ZAZEN IS ZAZEN; whether you are standing, sitting, walking, or lying down. It does not matter. What matters is the intention that you have set in your heart.

I decided that, as someone that has fibromyalgia, in order for me to sit Zazen comfortably (relatively comfortably as we all know sitting can sometimes be uncomfortable) I would need to “let go” of my Perfectionism just a little bit. That in itself is a struggle that I continue to deal with. When I am having a particularly bad pain flare I will do lying (reclined) Zazen on the couch, bed, and sometimes the floor. During my regular sitting Practice I sit on the couch with a few strategically placed pillows behind my back to take some pressure off. I sit Burmese style, with one leg lying in front of the other. Sometimes I will put a pillow under my legs and sit with legs uncrossed.

You need to sit in a way that allows you to sit comfortably (relatively comfortably). If you need to change positions during the sitting period, do so. In this case for me I will gasshō, change positions, gasshō again, and return to sitting. Do what works for you.

We would love to have you participate with us during Ango Please let me know if I can help.

Gasshō,

On

sat today/lah

As Bodhidharma says, “Not thinking about anything is zen. Once you know this, walking, standing, sitting, or lying down, everything you do is zen. To know that the mind is empty is to see the buddha.... Using the mind to reality is delusion. Not using the mind to look for reality is awareness. Freeing oneself from words is liberation.” - “The Zen Teaching of Bodhidharma”, p.49, Macmillan.

[Koriki]

It's a valid concern Gooey. I also have ME/CFS and have done two Rohatsus. The first I crashed and burned at the end of the first day and then couldn't do the 2nd. Last year I was able to do pretty much all of it. As you know, even for those of us with ME/CFS there is some variation in symptoms, so bear that in mind. For me there is no kinhin. Kinhin periods in Zazenkai are breaks for me to recline quietly. I don't remember exactly, but I think I may have mixed in some reclined zazen with my sitting for Rohatsu. For the 4 hour Zazenkai I noticed that I nose dive energy wise if I sit on the zafu during Jundo's talk, do my hands only hokey pokey ritual seated on the zafu, and then sit zazen again without getting up. So I sit more comfortably during the talk then switch to the zafu. So, for me I try to avoid too much repeated zafu time. Rohatsu has a lot of non zazen breaks for samu, Oryoki, etc, which are also times when I recline quietly and maybe listen to a dharma talk (Zen related audiobook). Bowing out for a period of time works as well. There aren't too many people that push through the whole day due to time zone issues, so don't be concerned with stepping in and out of the zendo when needed. So, do what you can, modify as needed, check in and out, etc. But the opportunity to do a sesshin while having this illness is not something I thought would be able to happen for me and I'm still so grateful for it.

For those who are unfamiliar with this illness, the kind of fatigue we're talking about is not like being sleepy (a universal misconception). It's more about not having energy in the first place. An analogy I like is that I'm like a cell phone whose battery only charges to 5%. It doesn't matter if you charge it overnight or keep it plugged in all day, 5% is all you get. And the phone generally works ok, you just have to really ration your use to get through the day. And once it gets below a certain number, say 2%, it starts malfunctioning. But with 5% you can still get some stuff done. So, if you have a conversation with someone with this illness, see a post by one of us, or see us at Zazenkai, just know that it must have been important to us as we just burned through most of our battery to do it.

Gassho,

Koriki
s@lah

[Kokuu]

I would like to join in with Ango this year but am feeling apprehensive about how my body will handle the Rohatsu sesshin due to fatigue from ME/CFS, even though it is short as far as sesshin goes. I know we have several other Treeleaf folks who also have ME/CFS who have experience with this - I'm wondering if you have any words of advice or things that have been useful for you?

Hi Gooey

Everyone has given really good advice. The bottom line with Rohatsu is to only do as much as you can and even then to modify your sitting and other activities to minimise your energy usage and levels of pain and discomfort.

It may be that some sessions you can just watch from bed and even sleep through. Being there in your heart is the most important thing. Or you may need to just do certain parts of the sesshin.

I tend to take it slow especially on the first day rather than burn out and be unable to do any of the second, and many years I have needed to prioritise giving a talk or leading a ceremony or session. One year I had to drop out from giving a talk, howeer, and one of my wonderful dharma sisters ended up doing it for me. All we can do is what our bodies allow us to, but Ango and Rohatsu are a time when the sangha all comes together and it is wonderful to be able to be involved in that, whether you manage to sit with all of the Rohatsu sessions or just a part of one.

Gassho
Kokuu
-sattoday/lah-

[Matt Johnson]

It's a valid concern Gooey. I also have ME/CFS and have done two Rohatsus. The first I crashed and burned at the end of the first day and then couldn't do the 2nd. Last year I was able to do pretty much all of it. As you know, even for those of us with ME/CFS there is some variation in symptoms, so bear that in mind. For me there is no kinhin. Kinhin periods in Zazenkai are breaks for me to recline quietly. I don't remember exactly, but I think I may have mixed in some reclined zazen with my sitting for Rohatsu. For the 4 hour Zazenkai I noticed that I nose dive energy wise if I sit on the zafu during Jundo's talk, do my hands only hokey pokey ritual seated on the zafu, and then sit zazen again without getting up. So I sit more comfortably during the talk then switch to the zafu. So, for me I try to avoid too much repeated zafu time. Rohatsu has a lot of non zazen breaks for samu, Oryoki, etc, which are also times when I recline quietly and maybe listen to a dharma talk (Zen related audiobook). Bowing out for a period of time works as well. There aren't too many people that push through the whole day due to time zone issues, so don't be concerned with stepping in and out of the zendo when needed. So, do what you can, modify as needed, check in and out, etc. But the opportunity to do a sesshin while having this illness is not something I thought would be able to happen for me and I'm still so grateful for it.

For those who are unfamiliar with this illness, the kind of fatigue we're talking about is not like being sleepy (a universal misconception). It's more about not having energy in the first place. An analogy I like is that I'm like a cell phone whose battery only charges to 5%. It doesn't matter if you charge it overnight or keep it plugged in all day, 5% is all you get. And the phone generally works ok, you just have to really ration your use to get through the day. And once it gets below a certain number, say 2%, it starts malfunctioning. But with 5% you can still get some stuff done. So, if you have a conversation with someone with this illness, see a post by one of us, or see us at Zazenkai, just know that it must have been important to us as we just burned through most of our battery to do it.

Gassho,

Koriki
s@lah

Hi Koriki. Could you explain a little more? That brief explanation was fascinating. My main question is what do you do normally when you don't have any energy to do whatever it is that you think you should be doing? What is the default state when you have no energy?

_/\_
sat/ah
matt

[Koriki]

Hi Koriki. Could you explain a little more? That brief explanation was fascinating. My main question is what do you do normally when you don't have any energy to do whatever it is that you think you should be doing? What is the default state when you have no energy?

Oh that's a great question. Using the phone analogy once more, I have to pay attention to which "apps" use more battery and which use little to none. For example, the in-person group conversation app is one that enjoy, but it drains my battery quicker than most anything. Probably all the information processing involved. The walking app just burns through the juice as well. Whereas sending short text messages through my PC uses way less battery than talking on the phone.

Watching mellow videos while reclined is a common fall back if I'm near empty. I have a reclining office chair with a padded footstool that I use to recline/lay down at my desk where I have a monitor on an arm. With this setup I'll watch videos of people fishing or old football games where I already know the outcome. Stuff where information processing is minimal. For some people their default no energy state is lying in bed in a dark room with an eye covering and noise canceling headphones on.

Interestingly, the zazen app for me is kind of like turning off the phone for awhile in terms of battery use. And afterward the "apps" that I use seem to run a bit more efficiently. I try to use that app a lot.

Gassho,

Koriki
s@lah

[Matt Johnson]

When using the Zazen app do you find your battery at all recharged afteror just not draining much power? Does this change if you sit longer? How would rohatsu differ to "insta-zazen"?

_/\_
sat/ah
matt

[Koriki]

When using the Zazen app do you find your battery at all recharged afteror just not draining much power? Does this change if you sit longer? How would rohatsu differ to "insta-zazen"?

For me it doesn't feel so much like a recharge after zazen. Even though in theory, a rohatsu amount of sitting might be beneficial for me in some ways, having everything scheduled and on zoom does add some challenge to it that can be quite wearing. Of course this is just me and the benefits I speak of I think are due to the effects of meditation on the autonomic nervous system, which has been studied quite a bit. Nice to have a side benefit of zazen, but that's not why I do it. I'd do it even if it burned a lot of fuel. Speaking of fuel, I'm on E. Time to sign off. Thanks for the questions though.

Gassho,

Koriki
s@lah

[Gooey]

Thank you so much for these responses - I really appreciate reading everyone's experiences and advice. Koriki and Kokuu, it is so helpful to hear from you both about your experiences doing Rohatsu with ME/CFS. Koriki, I also don't tend to do kinhin and sit quietly as I find the muscle control needed to walk slowly like that very fatiguing. I have really appreciated getting to sit with you at the weekly Zazenkai. I did notice there are lots of short breaks in the Rohatsu schedule, and I think that with some planning I can make it work, which is exciting as I also thought that sesshin might not be possible for me.

Matt, Koriki's phone battery analogy is excellent, and most of what he describes is very similar to my experience. One thing I will add is that the "post-exertion malaise" or "PEM" that I mentioned means that if you completely drain your battery and then try to recharge it, it might only recharge to 2% instead of 5%. This can last days or weeks (for some people even months or years, especially if that metaphorical battery is drained for a longer time). So any extra exertion needs to be pretty carefully planned for and managed. On good days I'm grateful for all these lessons in patience and persistence but I still have a lot to learn.

Gassho,
Gooey (sat/LAH)

[bonsai23]

I am so grateful that you have posted this question. I also have CFS, and I was concerned about attending Ango this year as well. Thank you for posting this, and thank you to everyone who has shared their advice and experience!
Gassho!
Syd

[Jundo]

We are just now setting up our "Alternative Paths for Jukai and Ango" posting, which will have one of our priests with health issues (Onki) helping folks through who could use some accommodation for health and body reasons. Please stand by a day or two for that.

Gassho, Jundo
stlah

[Seiko]

I would like to join in with Ango this year but am feeling apprehensive about how my body will handle the Rohatsu sesshin due to fatigue from ME/CFS, even though it is short as far as sesshin goes. I know we have several other Treeleaf folks who also have ME/CFS who have experience with this - I'm wondering if you have any words of advice or things that have been useful for you? I would also welcome hearing from anyone else who experiences chronic pain and fatigue, and post-exertion malaise in particular.

Gassho
Gooey (sat/LAH)

Hi Gooey,
Like you, I live with chronic illness. ME/CFS is one of my conditions.
Be kind to yourself. Taking care of your own health needs is a must.

Gasshō
Seiko
stlah

[Onki]

We are just now setting up our "Alternative Paths for Jukai and Ango" posting, which will have one of our priests with health issues (Onki) helping folks through who could use some accommodation for health and body reasons. Please stand by a day or two for that.

Gassho, Jundo
stlah

Hello Sangha!

As Jundo said, I will be the Alternative Paths for Ango and Jukai Shuso beginning in September. I am honoured to be taking this role and promise to do my best in helping those that need accommodations and/or assistance in any way in order for them to succeed.

If you have questions or concerns about the Alternative Paths route please don’t hesitate to message me or Jundo and we will do our best to help you.

We are all in this together.

Gasshō,

On

sat today/lah