How to be Sick – Chapter 2

[Kokuu]

Disclaimer:

This group is not part of the regular Treeleaf forum. To take part, you must have registered on the original thread (https://www.treeleaf.org/forums/show...Practice-Group) and agreed to the group rules.


Hi all

There were a few answers as to the pace of the reading so we are continuing on. If it turns out that many people are finding one chapter a week to be too fast then we can slow it down or give extra weeks to some chapters. So, please don't feel you are being rushed along.

In this chapter, Toni talks about her experience of returning from Paris and gradually growing stronger, allowing her to attend a meditation retreat at Spirit Rock, only for her symptoms to reoccur. She also talks about trying to go back to work and the difficulties she had in doing that.

How much do you relate to Toni’s experience of the onset of her illness? Was there a sudden shift for you? Were you able to live life somewhat normally for a time or did it require immediate adjustment?

Did you, or do you still, have secret coping mechanisms to minimise how your illness looks to others (in disability and illness communities this is often referred to as “passing” as in passing for a well person)?

How did it feel if and when you had to make big decisions about life such as the work you did, relationships you had, where you were living etc?

For carers, how have you found watching the person you care for come to terms with their new limitations and the adjustments they have needed to make in their life? Did their condition occur suddenly or was it more gradual in onset? Have you had to encourage them to make the kinds of decisions they might need to make?

Feel free to reflect on any of those questions or speak about any other part of the chapter which you found to be particularly meaningful for you.

To borrow Shoka’s words from the book club, please talk amongst yourselves here too, comment on each other’s comments, and allow time for others to comment. This is a book discussion group, so let’s make it a conversation.

Gassho
Kokuu
-sattoday-

[Kokuu]

On a personal note, yesterday my back became very weak, to the extent that it was a struggle to sit up for long. I was leading Tonglen in the evening and my whole body started to shake halfway through. I guess I could have stopped it but instead just focussed on my breath to stay upright and get through it.

That seems to be one of the secret coping mechanisms that Toni talks about, not letting on what is happening to your body when in the presence of others. I suppose it is a way of not revealing vulnerability and probably unhelpful but it feels like a hard habit to break.

Gassho
Kokuu
-sattoday-

[Yokai]

Thanks Kokuu for being vulnerable and sharing this You lead by example

Metta to you brother.

Gassho, Yokai (Chris) sat/lah

[Risho]

On a personal note, yesterday my back became very weak, to the extent that it was a struggle to sit up for long. I was leading Tonglen in the evening and my whole body started to shake halfway through. I guess I could have stopped it but instead just focussed on my breath to stay upright and get through it.

That seems to be one of the secret coping mechanisms that Toni talks about, not letting on what is happening to your body when in the presence of others. I suppose it is a way of not revealing vulnerability and probably unhelpful but it feels like a hard habit to break.

Gassho
Kokuu
-sattoday-

I do not know how you do it man

My wife and I recently got COVID; I didn't have it bad, she got pneumonia. She is also pregnant (we're having a boy in April!). We are both fine now thankfully.

In any case, and this is not the same level of illness I know but I can relate to Toni a bit ( a tiny bit). The first week was like a mild cold; the 2nd week I had to go the ER where I found I had covid; I couldn't breath and thought I was going to pass out. I was very scared. But nothing was wrong! These symptoms have subsided but they lasted for a month; out of nowhere I would have to make myself breath. Apparently it's a nice neurological feature that comes with it. hahaha

But even now, when I workout, I have to pace myself; it's like my body is still feeling fatigue etc. I have to step back and just realize where I'm at now is not where I was and that's ok.

I know what I experience is not anywhere near what others are experiencing; I just wanted to share something. As my wife would say, when I get sick, everyone knows because I remind them constantly. hahahahahah

I've gained a new respect for everyone sharing here, and I'm glad we are practicing together.

Gassho

Risho
-stlah

[Shonin]

Still reading through the chapter and answer each question 1 by 1 so bear with me.
How much do you relate to Toni’s experience of the onset of her illness? Was there a sudden shift for you? Were you able to live life somewhat normally for a time or did it require immediate adjustment?
For me it was sort of slow, It started with going days without proper sleep. I remember(not comfortable sharing the delusions with others) the instant I went into psychosis. It was like a switch flipped in my head.My family didn't understand what was going on.I finally got myself to the hospital. Was a week and a half stay to get me stabilized enough to go home. Once I was stabilized I was good to go for a bit till the next event which was months down the line. When my meds are working I'm "normal".
Dave
SAT/LAH

[Jinyo]

My illness was of a sudden onset - I have the same condition as the author but no period of getting by in my former life with the illness. Within the space of six weeks I went from an active, healthy life to being bed bound.
I think the aspect of chronic illness that comes across in the chapter is the double edge to being chronically sick - not wanting others to know/yet really needing others to know and understand.
I'm not sure why as humans we feel a sense of shame in being ill but we seem to - perhaps its a modern phenomenon. I know I try to cover up a lot of the time. I also feel its really difficult if we have others depending on our being well. Not being able to put into action our care for others is very hard and I think that contributes to the 'cover up'.
In the last part of the chapter Toni lays out her various diagnosis - (working to the earlier book here so may have changed?) I think this illustrates that she wants the reader to fully understand the complexities of her condition.I relate to this need but often hold back and talk in generalities - 'not so good today' or 'pain levels tricky'.
Admitting we're ill means accepting within ourselves that things have changed - perhaps radically - and opening up to vulnerability, as others may not like this new 'version' of how we now are.
I prefer listening to talking so being ill makes me uncomfortable about taking up space - I retreat when things get really bad. But, I don't mind
writing things down, especially if I feel that might offer empathy and help to others.

It's all a journey, lots of adjustments to be made along the way.

Gassho

Jinyo

[Koushi]

How much do you relate to Toni’s experience of the onset of her illness?

For the PTSD, it was like a light switch and needed immediate changes. After years of domestic violence and abuse, I went from being OK (as you could be as a child dealing with that) to feeling overwhelming fear seemingly out of nowhere and at random, let alone with the triggers. This continues to this day separate from depression/panic disorder, as any type of aggression or yelling will trigger an episode (I had to turn off the only US Presidential debate this year because of it), and so will random dreams or flashbacks. The panic disorder has progressed over the decades, until now, where I'm pretty homebound/agoraphobic. I understand the physical symptoms are harmless (yet uncomfortable), but it's still hard to allow them and try to cope while driving/out in a place I can't "escape," etc. The back issues are constant, especially while sitting or exertion, but don't require *too* much change in daily life.

Did you, or do you still, have secret coping mechanisms to minimise how your illness looks to others?

I do. It's almost impossible for most people to tell I'm having a panic or PTSD episode — but I'm always on the lookout for how to stay near the closest exit, carrying soda/water/sweets if I feel faint (although I've never fainted), keeping headphones close for music or podcast distractions, etc. I also try to stay "cool" and lean against things when I'm standing, just to pass as someone who doesn't have chronic balance issues.

How did it feel if and when you had to make big decisions about life such as the work you did, relationships you had, where you were living etc?

That's the biggest thing for me. I feel a lot of guilt and shame about my limited lifestyle and eventually asking for help for some things (such as rides to appointments, having groceries delivered, etc). I've had to scale back my career and university to remote-only, even before the pandemic, and I haven't traveled for many years now. This has caused my last relationship to end — and the one I'm currently in now likely won't survive the distance due to it. Where the shame is what I feel because of my conditions, the guilt I feel because I almost can't imagine asking someone to care for or love me in a state that's so limited.

Gassho,
Koushi (Jesse)
ST

[Shoki]

My IBS/Lymphocitic Colitis came on all at once. Not in the same universe as Toni's illness but had to make immediate drastic changes once I was diagnosed. Even now with all the medicine, diet, etc. it's still not all that good. Still trying different things.

This all started around April of 2020 so not much was normal with Covid. It got even more abnormal quickly. Thinking of a post-vaccination world, unless I get a dramatic improvement, I don't know about eating at a restaurant, going to someone's house for dinner, a day at the beach, or a barbecue. Even going out for a day or evening, I'm not too sure about that.

Coping mechanisms? If anybody asks how I'm doing, I'll tell them. But I don't want to go on and on so I will just change the subject.

Gassho
ST-lah
Shoki

[Meian]

Apologies for my long post.

I have multiple illnesses, but the most problematic and dangerous one, lupus, has been both gradual and sudden. It took a blood test to tie years of weird symptoms together when doctors were dismissing it as psychosomatic. I developed pneumonia within days from a cold virus about two years ago. I sometimes wake up with weird problems or changes that weren't there the day before. I'm currently trying to recover from another back spasm that happened while sitting. What other people's immune systems can handle, mine will launch a full-on assault against my body.

I don't usually raise the topic of my illness with people anymore. I answer questions, however, especially since I get asked often if my lupus is "better yet" or offered "cures" -- as if I have a case of the sniffles. Of course, that may just be their way of asking how I am (often followed by unsolicited advice) or wanting to be helpful. I'm slowly learning, through Zen, to try viewing well-meaning comments in this light.

What I usually tell people -- including my own family -- is that lupus never takes a day off. I have no pain-free days. Fatigue is relentless. It's a matter of degree, not if. Manageable days are a 4-6. I have 8-9 days also, and my brain seems to block out memories of anything higher. There are no 1-3 days -- I coexist with fibromyalgia. My daughter told me that because I have a full life and look "together," it confuses people that I have lupus -- my body's war is invisible, except for my face.

I've been using a cane recently at home, due to pain levels. I'm guessing it would be more obvious if I use the cane on errands also. I've been resisting this for a while. I had used the cane last summer and it helped, though.

If I talk about what I'm experiencing, to American ears it sounds like complaining or whining, or I get told what a mess I am. It also doesn't help anything, so I'd rather stay silent to handle things my way and not be a problem for anyone.

Sadly, I see this as a problem with American culture (too individualistic, lack of community and compassion), but in my experience American culture tends to view people with disabilities and chronic illnesses as burdens and invisible instead of an equal part of society. So, I look after myself as best as I can, but advocate when I can also.

Apologies again for my long post.

I am so grateful for this opportunity to learn about your illnesses and how you experience them. Deep Bows.

Gassho, meian st lh

Sent from my SM-G975U using Tapatalk

[Shonin Risa Bear]

First, metta to all here. And I think long posts will be the standard in groups _()_

How much do you relate to Toni’s experience of the onset of her illness?

Other than kidney stones, gall bladder failure, and run-ins with strep (including the brain infection that nearly got me) I haven't had much in the way of chronic illness, just chronic conditions -- the severe hearing loss from an early age, the lower lumbar failure. These I adapted to on the run, so to speak, and I haven't had that sense of a door closing on my "future," on the scale she speaks of, until recently.

Did you, or do you still, have secret coping mechanisms to minimise how your illness looks to others?

The hearing loss industry goes to great lengths to help hide appliances, with tiny flesh-tone hearing aids. I was fitted with fake glasses with aids in the temple bars at six years old, to forestall bullies who were known to go after anyone with a pocket aid and a wire to the head. But bullies were after me for a quite different reason. Nowadays I prefer a "pocket talker" -- big box with two AA batteries and a directional microphone -- will shove its red light in the direction of anyone speaking and say, "don't worry -- you're not being recorded." A little humor goes a long way.

That other matter, which bullies detect in you at a very early age, is known as "gender dysphoria." It was assumed I would grow up gay and I was actually stoned at eighteen months. I basically died and my mom resuscitated me, so I'm told. It was at about the same time I lost most of the ability to hear. Not until I was 50 did I face what was was going on with me and transitioned at 56. You would not know it to look at me now, as I am just this sort of neutral old thing, but I blended in well -- was able to keep my library job serving the public -- what is known as "stealth" -- it's a security measure. I was far safer in restrooms than cis women who didn't visually meet expectations. I can still do this but rarely get out with Covid, so I'm losing the touch.

How did it feel if and when you had to make big decisions about life such as the work you did, relationships you had, where you were living etc?

Late-in-life transition is scary and it affects everyone around you but things normalized pretty quickly. I have had a far easier time of it than most and no one has tried to murder me. The other thing that's going on, short-term memory loss mostly, had more impact. About 2007 this began to affect my work, and I discussed early retirement with family and my boss and co-workers, and permanently left the prairie dog farm, as we called the cluster of work carrels behind the service desk, in 2009 at 59. My spouse (of 44 years now) takes up the slack, running family finances, etc., and I mostly do the things I did when I was that other person -- house and yard maintenance, getting in the firewood, microfarming. Buddhist activity is affected. I find Zen remarkably ableist in its culture, and the things that are wanted of unsui -- what are called the practice positions -- bells and smells work -- are very difficult for me to learn. I'm balky and unreliable and that has caused some strain, I think. Now that, because of the increasing mobility issues at age 71, I'm mostly in a zero gravity chair at events, and because events are on Zoom, I'm being, shall we say, adapted to by others more. I can work from a script, I have an earbud and can hear cues, and the chair serves as a visual reminder, like a wheelchair, that I have to be adapted to. This seems to be working.

gassho
ds sat and some lah.

[Kaishin]

I had typed out a long response, tried to edit it and--poof--it's gone 😢

I'm too tried to try to retype it all, so I'm just going to drop a link to a news story I came across today about how Covid patients with long-term lingering symptoms may help shed light on CFS/ME. Might be of interest:

https://khn.org/news/article/long-haul-covid-cases-cast-new-light-on-chronic-fatigue-sufferers/

Thank you all for sharing. I found myself nodding my head frequently while reading your posts.

And congrats to you and your wife Risho! Your life is about to get busy 😁

[Jinyo]

Hi Kaishin - sorry your post disappeared but thanks for the ME/CFS link.

If history is anything to go by, without a lot of research Long Covid patients may sadly go the way of ME/CFS patients - doctors seem to struggle with what they can't visibly see under the
microscope or on a scan. The effect on patients of not being believed is huge. Its taken decades for ME/CFS to be taken seriously despite millions of sufferers globally.

Personally, I believe there's an underlying 'switch' to many illnesses and we need to think less binary and more unified (two sides of the same coin) - we need more Buddhist medical researchers
who can think outside of the box

[Dee Sunyata]

Thank you for that link Kaishin (I also have ME/CFS).

[Meian]

Shonin, I've been thinking about a phrase from your post since last night, "I haven't had that sense of a door closing on my "future," on the scale she speaks of, until recently."

I started getting that sense some time last year, probably around when the first major back spasm occurred in August (when I nearly couldn't walk, such excruciating pain). And then I couldn't find practitioners who would agree to treat me, once they learned of my combined diagnosis of fibromyalgia and lupus -- everyone referred me back to my rheumatologist to handle it. So I was back on heavy/toxic meds to calm down my turbo-charged immune system. My doctor warned me then, that I could not continue with my history of going on these emergency meds 2 to 3 times a year. I pushed that nagging feeling out of my mind that told me again "your old life is gone, you have to figure out another way before this kills you." (My PCP called today about my latest blood test results .... one challenge at a time!)

My "door to a future closing" I think came yesterday -- when my husband was speed-dialing me from the pharmacy, which had to know if I had ever taken morphine before they'd allow him to pick up a prescription painkiller for me in addition to the steroid treatment for my spine. I was so shocked by the question, I couldn't answer at first. My spine surgery was when they gave me morphine, and I also had the drug in question. As a rule, I don't touch alcohol or narcotics -- I generally have a high pain tolerance, except for these last two spasms that have felt like lightning bolts in my spine. My whole body now hurts (not sure why, tension and struggling to move, I guess), but my sitting and sleeping has changed over to wooden and metal boards, and a flat cot on the floor -- all per my saying that I can no longer tolerate soft/cushy surfaces to sit or lay down on. Hard surfaces can cause numbness, but I already have much nerve damage, so this doesn't really change much for me.

With the pharmacy, I thought, well $#!&!! So I'm back on toxic meds again -- and a painkiller .... followed by physical therapy, scans, and possibly surgery. How did I end up here?!?!

And trying to adjust to the "me" that has been moving around with a cane for most of the week, one-stepping in some places, and not being able to maintain my usual routine of caring for house and family, even the simplest, most basic things. That has been my closed "door to a future" and trying to figure out -- who or what am I if I can't live my life?? But then I also think, how can I adapt my life to make it work for me -- this was not my doing, and while self-care is essential, it will not "fix" me. So I am also reflecting during this time, on ways I can live my life with meaning and purpose, despite the naysayers who act like it's nothing, and with changing abilities and skills.

Updated goals -- in two weeks, I'll be updating my volunteer training with my local Lupus Foundation of America chapter. With the pandemic and nationwide shutdowns, they've updated their trainings to help us learn more advocacy skills online, and more self-care resources as research improves on lupus. I will also attend a webinar with the Arthritis Foundation (which also covers lupus) for plant-based eating menu planning and nutrition for special dietary needs. I mention these only because, had my life not changed so completely, I would not even know about these trainings. My life has completely changed since I got sick.

gassho, meian st lh

[Shoki]

Meian,
Back spasms. There's nothing like them. I've had a couple where for days all I could do was crawl to the toilet in agony and then back to bed. Don't know if you have access to accupuncture, but that was the only thing that helped, besides sickening drugs.

In general, I keep going back to that quote from a Youtube channel of someone with serious IBS who said that one of the main pieces of advice for anyone with chronic illness is; Say goodbye to your old self. I find this works well with Toni Bernhard's viewpoint.

Gassho
ST-lah
Shoki