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Hello everyone! First, I want to thank Jundo and Kokuu for allowing me to assist as co-host in this forum. And grateful to everyone in this group for your patience with me!
Chapter 14 discusses “wise action” – what to do, and what not to do, to manage our symptoms in a better way. This chapter also has a section for caregivers with similar objectives – self-care, mental health, and respite.
This topic is so important because when we practice better self-care, we make less work for our loved ones/caregivers!
Perhaps, during the time each of us have lived with our respective illnesses / disabilities, we have already figured out (the hard way?) that some activities or habits make our symptoms worse, and others help ease our symptoms. This is certainly true for me, and I’m still learning almost every day.
So, Toni discusses this – ‘wise inaction’ – as what NOT to do so as not to make our symptoms worse. She refers to not leaving the house when she is feeling particularly unwell, even when remaining housebound would inconvenience her in some way – because leaving the house causes exhaustion and a flare-up of her symptoms. I know this is often true for me as well!
She discusses several other ways that ‘wise inaction’ supports our illnesses and well-being, along with an exercise called “just sit and do nothing” (sounds a bit like …. zazen!).
Can you think of other ways that ‘wise inaction’ applies to your life and supports your illness and wellbeing?
Next, Toni discusses ‘wise action’ – what she calls “finding the middle ground” between our former abilities, and where we are now. For instance, I used to be able to walk a few miles easily, used to go jogging, biking, worked in an office, took classes full-time, and ran volunteer groups. I was an active, involved, constantly “on the go” young woman. Now, 100% of my work and volunteering is online (for now), and I move and feel like an unwell elderly woman. However, not all activities can be online, which Toni also covers – avoiding extremes, not too much one side or another.
One thing at a time – I know Americans love to multi-task -- we’re not good at doing AND thinking about JUST one thing at a time. Jundo gives this teaching often as well – when reading, just read. When eating, just eat. When sweeping, just sweep. I haven’t mastered this yet. (Even now, I’m having a snack, reading, and typing!)
Next, Toni mentions pacing. This is a big one for me, I mention it often – to my family and to almost everyone I work with. I found Toni’s explanation of pacing interesting (her version is so much more eloquent than mine is!), and it helped me to understand why I pace, and how to pace myself better. I tend to ask people for deadlines, information, resources, etc., far in advance of the deadline, and some find it a bit odd. I do this because I know how unpredictable my illness is, and that I need time. The less work I have to do in a hurry, the better off everyone is – or at least if I know what I am facing, the better prepared I’ll be to plan ahead, and the less chance of a flare.
Caregivers –
I cannot speak as a caregiver in this close capacity, so I will simply post the topics with descriptions to consider. If you are a caregiver, I invite you to share your experiences and/or expand upon this topic to help us all learn from the trenches, and it would be good also to learn more about how we can support our caregivers. So I am hoping some of our caregivers will share their experiences here.
Toni explains that what is good for the patient is especially good for the caregiver!
Wise Inaction: Don’t try to be “Super Caregiver”! Don’t force yourself, don’t go full throttle, 100% every time. You’re human, you get tired, sometimes you won’t always be “on”, and that’s okay. We have up days, and we have down days, and we have “so-so” days …. It’s normal. Just be.
Pace Yourself – what is true for us, is especially true for caregivers. Caregivers can bear a much bigger share of the load than the patient, as they are nearly invisible to society, and can be mostly unseen when crises happen, in our worst moments, and caregivers are closest to us.
Toni’s advice is also to “schedule time for Caregiver Inaction” – find a way (through a respite service, a friend, another relative, or a time when your loved one is settled for some time) to have coffee with a friend, to go shopping for a bit, take a refreshing walk, take a NAP, or whatever nurtures your body, mind, and spirit. Take care of your own health, make self-care a priority – if you fall apart, what then?
Find and try a support group for caregivers. Talk to others who are in your situation (or similar). Sharing with others, or even listening/reading from others in similar situations can validate your feelings and help relieve pent-up feelings, stress, frustrations, etc. Whether online, or at local places of worship, hospitals, rec centers, support groups are usually plentiful and offer a wealth of resources and shared experiences.
Let go of the guilt – be compassionate towards yourself, and remember that you are doing your best with the circumstances and resources you have to work with. You will have ups and downs in your emotions and feelings towards caregiving. This is normal. A reminder that Chapter 8 has exercises for self-compassion practices when you’re feeling particularly low.
Questions for reflection and practice for caregivers and patients:
Have you tried any of these approaches? Do they help you?
Are there other approaches or methods you like to use?
Some takeaways and exercises to try from this chapter:
Make a schedule, remembering to pace, wise inaction/action.
Do tasks more slowly, remember to “do one thing.”
Try doing 50 percent of one task as a pacing method.
When doing too much, stop what you’re doing and take three conscious breaths. (pacing)
gassho, meian st lh
__________________________________________________
Hello everyone! First, I want to thank Jundo and Kokuu for allowing me to assist as co-host in this forum. And grateful to everyone in this group for your patience with me!
Chapter 14 discusses “wise action” – what to do, and what not to do, to manage our symptoms in a better way. This chapter also has a section for caregivers with similar objectives – self-care, mental health, and respite.
This topic is so important because when we practice better self-care, we make less work for our loved ones/caregivers!
Perhaps, during the time each of us have lived with our respective illnesses / disabilities, we have already figured out (the hard way?) that some activities or habits make our symptoms worse, and others help ease our symptoms. This is certainly true for me, and I’m still learning almost every day.
So, Toni discusses this – ‘wise inaction’ – as what NOT to do so as not to make our symptoms worse. She refers to not leaving the house when she is feeling particularly unwell, even when remaining housebound would inconvenience her in some way – because leaving the house causes exhaustion and a flare-up of her symptoms. I know this is often true for me as well!
She discusses several other ways that ‘wise inaction’ supports our illnesses and well-being, along with an exercise called “just sit and do nothing” (sounds a bit like …. zazen!).
Can you think of other ways that ‘wise inaction’ applies to your life and supports your illness and wellbeing?
Next, Toni discusses ‘wise action’ – what she calls “finding the middle ground” between our former abilities, and where we are now. For instance, I used to be able to walk a few miles easily, used to go jogging, biking, worked in an office, took classes full-time, and ran volunteer groups. I was an active, involved, constantly “on the go” young woman. Now, 100% of my work and volunteering is online (for now), and I move and feel like an unwell elderly woman. However, not all activities can be online, which Toni also covers – avoiding extremes, not too much one side or another.
One thing at a time – I know Americans love to multi-task -- we’re not good at doing AND thinking about JUST one thing at a time. Jundo gives this teaching often as well – when reading, just read. When eating, just eat. When sweeping, just sweep. I haven’t mastered this yet. (Even now, I’m having a snack, reading, and typing!)
Next, Toni mentions pacing. This is a big one for me, I mention it often – to my family and to almost everyone I work with. I found Toni’s explanation of pacing interesting (her version is so much more eloquent than mine is!), and it helped me to understand why I pace, and how to pace myself better. I tend to ask people for deadlines, information, resources, etc., far in advance of the deadline, and some find it a bit odd. I do this because I know how unpredictable my illness is, and that I need time. The less work I have to do in a hurry, the better off everyone is – or at least if I know what I am facing, the better prepared I’ll be to plan ahead, and the less chance of a flare.
Caregivers –
I cannot speak as a caregiver in this close capacity, so I will simply post the topics with descriptions to consider. If you are a caregiver, I invite you to share your experiences and/or expand upon this topic to help us all learn from the trenches, and it would be good also to learn more about how we can support our caregivers. So I am hoping some of our caregivers will share their experiences here.
Toni explains that what is good for the patient is especially good for the caregiver!
Wise Inaction: Don’t try to be “Super Caregiver”! Don’t force yourself, don’t go full throttle, 100% every time. You’re human, you get tired, sometimes you won’t always be “on”, and that’s okay. We have up days, and we have down days, and we have “so-so” days …. It’s normal. Just be.
Pace Yourself – what is true for us, is especially true for caregivers. Caregivers can bear a much bigger share of the load than the patient, as they are nearly invisible to society, and can be mostly unseen when crises happen, in our worst moments, and caregivers are closest to us.
Toni’s advice is also to “schedule time for Caregiver Inaction” – find a way (through a respite service, a friend, another relative, or a time when your loved one is settled for some time) to have coffee with a friend, to go shopping for a bit, take a refreshing walk, take a NAP, or whatever nurtures your body, mind, and spirit. Take care of your own health, make self-care a priority – if you fall apart, what then?
Find and try a support group for caregivers. Talk to others who are in your situation (or similar). Sharing with others, or even listening/reading from others in similar situations can validate your feelings and help relieve pent-up feelings, stress, frustrations, etc. Whether online, or at local places of worship, hospitals, rec centers, support groups are usually plentiful and offer a wealth of resources and shared experiences.
Let go of the guilt – be compassionate towards yourself, and remember that you are doing your best with the circumstances and resources you have to work with. You will have ups and downs in your emotions and feelings towards caregiving. This is normal. A reminder that Chapter 8 has exercises for self-compassion practices when you’re feeling particularly low.
Questions for reflection and practice for caregivers and patients:
Have you tried any of these approaches? Do they help you?
Are there other approaches or methods you like to use?
Some takeaways and exercises to try from this chapter:
Make a schedule, remembering to pace, wise inaction/action.
Do tasks more slowly, remember to “do one thing.”
Try doing 50 percent of one task as a pacing method.
When doing too much, stop what you’re doing and take three conscious breaths. (pacing)
gassho, meian st lh
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