#SpoonieWay Chapter 3 – Recovering a Sense of Power

The wonderful @NomTweet is guest posting for chapter three! 


Yuri is short on spoons this week, so I’m stepping in with a guest post to discuss chapter 3.

To begin, we technically began chapter 3 two full weeks ago… but this is SpoonieWay and we all know sometimes stuff just takes a little more time. We also know sometimes brainfog hits and we can’t be bothered to remember what week it is. So this is our third week on chapter 3, and we’ll start in on chapter 4 next Sunday. In the Twitter private message group we’ve decided our new battle cry is “SpoonieWay Foreverrrr!”. We’ll get through the book eventually.
I came to chapter 3 feeling very angry at my lack of spoons, and a bit miffed at chapter 2’s ableism… and was startled that it began with “This week may find you dealing with sharp peaks of anger…” why yes, book! Indeed! 
Just the idea of feeling powerful awakens a lot of frustrations for me about how my illnesses have gotten in the way of my life plans, and my ability to paint, and do all the other things a career as a painter requires. The whole idea of growing creatively seems like adding *more* stuff into my life… and I can’t always manage what’s on my plate thus far.
Julia Cameron suggests:

“Anger is meant to be listened to. Anger is a voice, a shout, a plea, a demand. Anger is meant to be respected. Why? Because anger is a map. Anger shows us what our boundaries are. Anger shows us where we want to go.”
So, in the last two weeks, I’ve been writing through my anger in my morning pages. I’ve been writing in the wee painsomniac hours of the morning – and my anger seems to be particularly loud then! Julia’s suggestion of anger as a map made me want to try to draw my own metaphorical map a bit more accurately – and I’ve been surprised to find I’m beginning to daydream about the future, in a way I haven’t since my illnesses have progressed in the last couple of years. I’m wondering “what do I want to be when I grow up?” …and imagining a beautiful life, even with my illness. I’m not able to think that way all the time. Depression and exhaustion and pain and anxiety mean that sometimes, I can’t think that way…. but still, the dreams are sneaking into my days, like a sliver of light leaking in from under the door.
Another theme in this chapter is “synchronicity.” Synchronicity is Julia’s word for good stuff showing up in life right when you need it. You could call it answered prayers. You could also consider it awareness: naming the thing you want clearly, so that then when opportunities arise around you, you notice them.
My illnesses have made me wary of the idea of answered prayer. I’ve been very clear with the universe/God/myself that I would prefer NOT to be sick… and I definitely have my eyes out for cures! No luck thus far. However, for the sake of SpoonieWay, I’ve tried to allow the possibility of synchronicity, just in the “art-making” realm of my life. That’s my baby step. I wrote some big, lofty artistic dreams in my morning pages. Grandiose “if I could have anything” dreams (but just art-related ones. Baby steps). And guess what? Something happened. 
One thing on my list was “write a book.” I think I was thinking nonfiction. But then one night my morning pages turned into a short story. And then I got brave and let someone read it. And then they shared it with another person. And then they told me I was a wonderful writer and my story made them cry. I was startled! I haven’t written a story since I was a kid. I thought I was just messing around, not “really writing.” So this week, I wrote in my morning pages: 
“I’m a writer.”
 I’ve never said it before. It was a big moment for me. Step 1 towards writing a book: be a writer. check! Thanks for the encouragement, universe.
“When a man takes one step toward God, God takes more steps toward that man than there are sands in the worlds of time.”

   –The Work of the Chariot
“The universe will reward you for taking risks on its behalf.”

  –Shakti Gowain
“A discovery is said to be an accident meeting a prepared mind.”

  –Albert Szent-Gyorgyi
The chapter also addresses the concept of God in this attribute: helper of artists. If “God” is a fraught name for you, perhaps the idea of a “Genius” living in the walls of your art studio might work better: I’d like to recommend Elizabeth Gilbert’s TedTalk on creativity if you haven’t yet watched it:
The big idea seems to me to be that “power” might not only come from within us… but also from around us. On that note: the twitter private message group and the people using the #SpoonieWay hashtag are incredible supports, encouraging one another with the daily difficulties of spooniehood as well as taking good baby steps forward creatively. If you haven’t yet joined in, feel welcome to! We won’t bite. (I don’t think so, anyways.)
The last half of the chapter addressed shame & criticism. Shame tends to get in the way of creativity in all sorts of complicated ways… shame around failure, shame at success when we feel like imposters, shame at succeeding “the wrong way.” Julia suggests we nurture and protect our artist child from shame past and present, and from criticism inside and out:
 “Art requires a safe hatchery.” 
For me this means giving myself permission to paint badly, write badly, take wild stabs at creative stuff I haven’t tried before (like that short story) without judgement. Believing that small acts of making stuff… even listing stuff I might someday make… are creative acts, and they’re good forward steps, even at Spoonie Speed.

“Whatever you think you can do or believe you can do, begin it. Action has magic, grace, and power in it.”

I’ve had a couple of good artist dates! One day I was feeling well enough to walk around an art museum. Another great artist date -from the couch- was watching the movie “Paterson.” It’s available for rent on the Fandango app, and is -synchronously- about making art amidst the everyday, and about synchronicity. I recommend watching it with a hot cup of tea, and a cat, if you have one available!
As always, please feel welcome to discuss the chapter and your experiences in the comments here or at the #SpoonieWay hashtag on Twitter.
Wishing you spoons,


#Spoonieway Chapter Two – Identity 

Video for Chapter Two – Identity 
Chapter one went really well! I was really glad that we switched to doing two weeks per chapter. I feel like I got a lot more out of the chapter in the second week than I did in the first week.

One of the things that I got during the chapter was a sense of wonder. It became more about the experience that I was having rather than checking off a list.

A common question during that chapter was why do I avoid self care? My daily Pages help me find the answer for myself. Instead of beating myself up, I came to recognize that I may have a good reason for not wanting to do self-care. It is an old reason, a reason that doesn’t serve me anymore, but it was a good reason. Recognizing that when I was little the people around me squished me down whenever I became expansive, made me realize that I am continuing the squishing down of myself today. And made it possible for me to work on starting to heal that and accept and support myself when I am expansive and big in personality.

I only did 5 daily Pages during two weeks but they were a really great experience. I feel like they really helped me shift a lot of things.

The time-travel task I thought I could not do because of my brain fog and really bad memory. I felt super resistant to it and really didn’t want to do it. But I was really surprised at what happened when I sat down to do it. I remembered that I used to dance with a lot of enthusiasm in both gym class and in ballet class. I remembered that I found out that some of the popular girls were making fun of me behind my back in front of the whole class and felt incredibly humiliated. I stopped dancing after that. It was amazing to remember this because I had completely forgotten it. It felt very freeing to realize this. Instead of trashing the monster as Julia suggests, I drew myself dancing freely as if it had never happened. It was also very exciting to be drawing because I usually have a lot of self-criticism and don’t let myself do that. So it felt very freeing on many levels!

I love the imaginary lives task. And it’s also a great source of artist dates! One of my imaginary lives was national park ranger. I can’t really go outside much with my illnesses, so instead I watched a documentary on Netflix about national parks. It was a very spoonie friendly adjustment to the activity.

I did a lot more artist dates than writing, which feels unusual for who I think of myself as. But it really worked for me with my spoonieness, particularly with just being in the experience. I also have a lot of hand pain so it makes it difficult to write. Again a good spoonie friendly adjustment. 

Chapter two Recovering a sense of Identity 

I feel like a lot of the language used in this chapter is ableist and stigmatizes mental illness. I had to really reframe it for myself. That process actually helped me go a lot deeper and be more authentic and more accurate, so I’m appreciative that it happened.

As we move into our creativity and prioritizing ourselves it feels really scary, uncertain, strange, frightening, awkward, etc. We may seem erratic at first. It is like learning any new skill. I had to remind myself that I am learning to play t-ball, I am not playing in the major leagues yet! Being patient with myself and nurturing and praising my early efforts, is a very important part of creativity recovery.

Julia says that we will be attacked from the inside with self-doubt but also from the outside. I call the people she refers to as “crazymakers” as emotional black holes. People that are very needy, get upset when I draw boundaries, make things about them, get upset when I don’t give them attention, etcetera. But I realize that this is also really from the inside – to what degree am I willing to give away my power in a way that doesn’t feed me? 

Of course we have to compromise in life, but if in 24 hours I can’t carve out just 30 minutes to feed my own soul then I am making that choice for myself. I am learning to make new choices that feed my soul and my creativity.

This includes my illness. It is very draining and of course it is necessary to take my meds, Pace myself, and do all the things I need to do around my illness. But I can still carve out that space.

I may not be able to physically escape the draining things (including my body) or people but I can work on changing the amount of space that they take up in my head.

Julia says that the way to manage emotional pain and to bring forth creativity is attention. Really paying attention, in the moment, to the little things. I would call this mindfulness or intention. How can I be really present in each moment and appreciate things like the fall of light through the window, the expression on my cat’s face as he is sleeping?

There’s a book I really like that does a really good job of explaining this. The Sound of a Wild Snail Eating. It’s by a woman who is bed bound and so exhausted she can’t even watch TV or listen to the radio. A friend gives her a terrarium with a little snail in it. Through the process of watching this snail she feels connected to the wider world and feels a sense of wonder about living things.

My own daily Buddhist practice and of chanting nam-myoho-renge-kyo helps me to do this. I feel way more appreciation for the little things, a sense of hope and optimism, and connected to the larger universe and a sense of my own eternal soul. I am able to notice, appreciate and find joy in the little things.

This I think is the essence of this chapter. How to move from and cultivate this place of Freedom, connection and creativity.

#spoonieway map

Here is an easy map to the links to #spoonieway, the #spoonie version of the Artists Way by Julia Cameron. I will continue to update as we go along. The videos and written blogs for each section are similar but each have a few things the other doesn’t. 
Getting ready info by video and written

Spoonie friendly Artist Date Ideas 

Chapter One Safety by video and written 

Chapter Two Identity by video and written 

Spoonie friendly Artist Date Ideas – #spoonieway 

There’s been a lot of discussion  in the group about the artist date. In thinking about the artist date, I realize that I was actually kind of fuzzy on what it really is. I went back to read that section in the book The Artist’s Way. 

Julia Cameron says that it is about magic, delight, fun, mystery. I would describe it as containing a sense of wonder, so that my body actually feels lighter, more joyous. Julia also says the artist date is “filling the well”. The act of creativity causes us to draw on the resources in our lives, and we have to fill up that space inside us to have something to draw on. She says that art is sensual, and composed of image and felt experience, even when we are writing. Does not pain she says that makes us better artists, but focused attention. And pain is one common way to get more focused on the things around us. I take it as bringing intentional Focus to the moment, bringing mindfulness, and feeling and experiencing the moment. This is the heart of the artist’s date. 

Words are brightly colored and in a variety of fonts. It says Artist Date is intention, magic, wonder, fun, delight, mystery. @IngredientsWeCh

To me this is very different from self care or pacing. If we don’t do careful self-care and pacing we will get sicker, in a serious and tangible way. If I don’t fill the well, I’m not as creative but it doesn’t damage my health. 

One person asked how they could do the artist date when they were exhausted and unable to get off the couch. Does Netflix count as an artist date? 

I think it depends on the intention we are bringing to the moment. If I am watching Netflix just to zone out, that is not an artist date, although it is important self-care and pacing. However, if I am watching Netflix and really checking into the experience, being aware of the sensuality of the images, sounds and imagining the smells, filling the internal well with these experiences, then I would say it absolutely is an artist date!

I would say the same thing about being on the internet. If I am just surfing the web mindlessly to self soothe then I don’t think that is an artist date. However if I am being deliberate about my experience then I think it can be. For instance if I decide my theme is Japan and I search for videos on YouTube for a day in the life of Japan, that can definitely be an artist date. Especially if I decide to add green tea, Japanese candy, incense or other tangible sensual experiences related to Japan.

Here is a list of spoonie friendly artist date ideas, that I will be updating throughout #spoonieway.

  • Play dress  up
  • Spa day with simple nontoxic ingredients: salt and scent make a great bath soak; oil in sugar makes a great scrub; rosemary and Thyme as fresh herbs can scent the bath
  • Change perspective – sit in different chair, on back of couch, upside down – sketch it
  • Create a new Pandora station with bands that are new to you /different genre than you usually listen to
  • Go outside and use whatever you find to make something, even if it is drawing in the dirt with a stick, or arranging blades of grass on the side walk
  • Browse online art catalogs 
  • Go to museum websites, especially those in other countries 
  • Use Google maps street view to wander the streets of another city, especially one you never considered going to before 
  • Jump on the bed
  • Walk in your backyard barefoot. Go slow and observe all the little things 
  • Google your favorite childhood cartoon. Draw your favorite characters 
  • Learn something from YouTube: belly dancing, singing, spinning etc
  • Create a memory box – put in things that represent you, photos, rocks, an earrings, etc
  • Decorate a corner of your room to be your happy place/ clubhouse /fort
  • Listen to Buddhist chants
  • Watch a movie in a foreign language with no subtitles. Optional: make up what they are saying
  • Marathon watch as many unwatched movies from your Netflix queue as you can 
  • Pick an unwatched movie from your Netflix queue. Watch to the very end. When it’s over, select one of the suggestions Netflix offers. Watch to the very end. Repeat. 
  • Play with your food. Create edible or even inedible art! Explore textures, colors, scents and flavors 

Suggestions from other spoonies:

Collect #quotes that resonate with you on a topic with meaning to you, no telling what’ll be #inspired. @coffeesister

Super-luxe bath, with candles, music, bubbles, and poetry. @NomTweet

Faux-travel. Randomly pick a place on a map. Google accordingly. Find music from there, and visual art, and historical tidbits. @NomTweet

Take  your artist-child self shopping. Budget for a small amount on Amazon prime. Nothing practical allowed. Toys, bubbles, etc. @NomTweet

Make your Spoonie-nest into an actual blanket fort… like, clothespin up some sheets. Read a YA book by flashlight. @NomTweet

Watch an old black-and-white movie. Something you wouldn’t usually watch. Make popcorn. Put on lipstick- it’s a date. @NomTweet

Find a short story that’s a “classic” by an author you’ve never (or hardly) read. Read it out loud, to yourself. @NomTweet

Browse free online at books from the MET. [I don’t read the text, just look at the pictures.]  http://www.metmuseum.org/art/metpublications/titles-with-full-text-online
Spoonie friendly ideas from other websites :

From http://whereverthewindtakesme.com/2013/03/20/99-ideas-to-bring-play-into-your-life-via-the-artist-date/

  • Make an image board of where you would like to go on your next holiday – find a pile of old magazines, tear out any images you like, and stick them on a big piece of paper
  • Buy a colouring book and some pencils, and spend an afternoon colouring in.
  • Go to a restaurant and try a dish or cuisine you haven’t tried before. [or order in] 
  • Anonymous love letters http://lifeislimitless.com/have-i-told-you-lately/
  • Put a key word like ‘inspiration’ or ‘courageous’ into TED  and watch 5 of the videos that come up.
  • Go out and take photos of everything that you see that is red (or blue etc). [or take screen shots of images]   Make a collage on your computer or better still, print the photos out and make a collage in a frame.
  • Make a fort/den out of blankets, cushions, pillows, chairs and tables.  Snuggle into it and read a book and drink hot chocolate or herbal tea.
  • Send 10 postcards even though you’re at home.
  • Make your own ‘scavenger hunt’  – decide on 20 things you need to find and then head out for an afternoon to take photos or bring them home. [or find them online] 

From http://theartistswayblog.wordpress.com/2010/10/17/101-artists-date-ideas/

  • Take a self-portrait everyday for a week.
  • Create a piece of artwork entirely with things from your recycle bin
  • Read poetry aloud… to yourself

The Spoonie version of the Artists Way #spoonieway 

Cover to the book artists way: a spiritual path to higher creativity by Julia Cameron. There is a drawing of a mountain top and cranes flying by in Sumi ink.

The artists way is a fantastic book by Julia Cameron that is a 12-week self-directed course on recovering and healing our creativity. I have tried it many times before and gotten a lot out of it, but I’ve never actually finished it. And as I have a little bit more energy then I’ve had the last few years, I find that I feel a certain kind of restlessness that is soothed by being creative. To me, creativity is a wonderful outlet for the pressures and stresses of spoonie life. It helps me feel like a whole person, beyond just my illness.
If you are going to do this along with me, I strongly recommend getting the book because it is almost like having a therapy session with her each week. She goes in depth into the topic of each week, such as safety. But I also recognize that on spoonie budgets it can be very difficult. I will be posting a summary of what I am getting out of the book each week. And I am going to try, spoons permitting, to do a video each week. Hopefully this will be helpful to other people. Here is the video for this week, with most of the same info as this post: https://youtu.be/NAHj0xK4v8E
In doing a spoonie version, the focus will really be on what serves my highest health, rather than just getting things done. A successful week will be where I get even just one thing done. The challenge for me will be to let go of what I was not able to do, and move forward with the learning, healing and benefit that I got from what I was able to do.

This week is getting prepared, and getting familiar with the structure and basic tools of the daily pages and the artists date.
I will be doing this from Sunday to Saturday. That means on Sunday I will be reading the new chapter, and speed writing through the exercises that I can manage to do that day. Then throughout the week I will be trying to do the daily pages, the artist dates, and some of the tasks at the end of the chapter, as spoonieness allows.

In choosing which of the tasks at the end of the chapter to do, Julia says to pick those that appeal the most and those that appeal the least. She says to leave the more neutral ones for later. And to remember that in choosing we often resist what we most need.

What I am calling the daily pages, Julia calls the morning pages. However because of my illness, I never know when I will be able to write. I like calling them daily pages because then there’s less pressure to get it done in the morning. It reminds me to write when it is not negatively impacting my health. The daily pages are free write, or you could also call it a brain drain or verbal vomit. It is just getting things down on paper. Practicing the art of flow. Julia says to be clear that it is not “real writing” and not to get hung up with the internal censor. Part of the purpose of the daily pages is to practice writing while ignoring the internal censor.
The book calls for daily writing three pages which she said should take about 30 minutes. However, for myself my goal is to write one page a day.
Julia says that the daily pages are about getting stuff out and the artist date is about putting things in. An artists date is basically a personal playdate done with me and my inner artist. No one else tags along, no friends, kids, spouses, etcetera! It is about giving your inner artist time and attention. It’s not about doing culturally edifying things that we “should” appreciate. It’s about having fun.
The examples that Julia gave were a long Country Walk, church gospel music, or even bowling! Some spoonie friendly ideas that I thought of so far are getting Google glasses that you can view virtual museums with, listening to music in a dark room, getting library books on visual topics that I like, or watching a Bollywood film.
Julia said that we are likely to find ourselves avoiding the artists date. She said we should recognize this resistance as a fear of intimacy – self intimacy. She said that to have a real relationship with our creativity we must take the time and care to cultivate it.
Julia has a contract in her book for people to fill out to make a commitment to this process. Here is my version of it

She also has a list of basic principles of the course and she says to read them once a day and watch for any shifts in attitude or beliefs. I’m actually pretty resistant to most of them so it will be interesting to see what happens. You can see where I scratched out and wrote in new words with the words that I find triggering.

Julia says that in this process she sees a lot of defiance and giddiness at first, followed by anger, grief and alternating waves of resistance and hope. She said this choppy growth phase is followed by a strong urge to abandon the process and return to life as we know it. She calls this the creative u-turn. This is where I have always stopped in the past. She says that after this in the final phase of the course there is a new sense of self marked by increased autonomy, resilience, expectancy, and excitement and much more actually producing creative works. This is where I hope to get to.

I also hope that by posting each week that it will help me through this process to not give up! The spoonie community on Twitter is so supportive in so many ways. I know that the support that we can give each other as spoonie artists using #spoonieway will help each other with this process!

To participate, use #spoonieway on Twitter and join our private messaging group on Twitter by sending me a request @IngredientsWeCh 

February #SpoonieMonthlyChallenge 

Each month, I post a question a day on a spoonie related topic for the first days of the month. The theme for February is self care! Many spoonies have been talking about how they wish they were better at self care, and we certainly need extra self care at this time. 

Each day I’ll add the daily #SpoonieMonthlyChallenge  question here. 

#SpoonieMonthlyChallenge Day 1. What are some things you do for self care?

Background is two tone ombre going from green to yellow. Text is #SpoonieMonthlyChallenge Day 2. Two things I'd like to start doing for self care are...

Image is an overcast day at the beach, calm grey water, and the back of a woman in a long brown sweater looking out to sea. Text is #SpoonieMonthlyChallenge Day 3 is there an unhealthy strategy you want to let go of

Image is blurry lights going from orange, yellow, green, white, blue, purple and red. Text is #SpoonieMonthlyChallenge Day 4. When you think about self care what color comes to mind? How can you incorporate more of that color in your life?

Image is blue water with ripples across the surface. Text is #SpoonieMonthlyChallenge Day 5. What helps you stay hydrated?

Finding Rest and Saying No on the Holidays


Woman resting on fall leaves, from Wiki Commons

Nothing else is worse for trashing all my spoons than the holidays. I don’t know what it is, but when I get around my family specifically at the holidays for some reason it is so hard to draw boundaries or do pacing. Maybe it’s that I revert back to being 12 again and feel like I have to live up to everybody’s expectations of me? Normally I am really good at saying no. Even when someone isn’t asking me to do something, I feel this nebulous exterior expectation of how things “should be” and I feel a great deal of anxiety about living up to it.

This isn’t conscious. Consciously I completely disagree with this and actively work to undo it. But in the moment I find myself acting unconsciously and before I know it all my spoons have slipped through my fingers and shattered across the floor.

Normally I’m a huge advocate of direct communication and working things out with the other person. However I recognize process takes a lot of spoons then I may not have, especially with all the hustle and bustle of the holidays. Sometimes I just have to do what I have to do to take care of myself. And that comes first before anything else. I don’t actually owe anybody any explanation and feeling like I do is just socialized pressure that impinges on my health.

These may not work for you, but hopefully they spark some ideas


Find ways of getting a break. I set alarms on my phone reminding me. Even just 5 minutes every hour helps me a lot. Good ways to get a rest if it feels hard to just say it directly:

  1. Put reminder on my phone to never expend more than about 30% of my spoons at a time. By the time I notice, I’m flagging it may be too late
  2. Go to the bathroom and stay a long time. If asked, say not feeling well. I don’t need to explain that I always feel unwell
  3. Say I’m not feeling well and find a bedroom or quiet space to lie down
  4. “Forget” something in the car, then rest there
  5. Go for a “walk” and find a place to sit
  6. Say I need something from the store, drive to store, nap in car. If asked, say it was hard to find what I needed (since this is probably true)
  7. Arrive late and leave early
  8. Put a relative who likes to be bossy in charge of making sure I take breaks. Gives them purpose and reminds me to do it
  9. Anything I do, like chopping vegetables, try to do it sitting down


Saying No

This can be so hard! And often the person I most need to say no to is myself. Questions I ask myself to help myself figure it out:

  1. Am  I willing to do nothing else today and the next few days if this takes all my spoons?
  2. What will happen if I don’t do this?
  3. If I don’t do this will anybody be seriously harmed?
  4. Is it more important to do this thing or is it more important to spend time with loved ones?
  5. Will anybody remember that this wasn’t done in 10 years?

When the person won’t accept no as an answer or it would just take too many spoons to have the conversation (this includes getting out of political conversations):

  1. Excuse myself to go to the bathroom.
  2. Say I need a kleenex
  3. Say I’m going to see if ____ needs help.
  4. Ask friend to call with urgent problem. In a huge pinch, just pretend someone is calling, preferably work
  5. Avoid areas like the kitchen or people who get into politics
  6. Cough on them and say I think I’m getting a cold
  7. Start talking about graphic medical procedures I’ve had

Some of these are rather silly but the trick is for each of us to find what works for us. We are worth the effort! Wishing you a high spoon, low pain day


Why can’t I just relax? Embracing my own life #Spoonie #chroniclife #Spoonieproblems

It is amazing how hard it is to just let myself do nothing. I’m lying on my couch, feeling like crap. I’ve been taking silver at night, to kill the lyme. This morning I started the morning dose. I’m exhausted. That deep down in the bone exhausted, that can’t really be explained if you haven’t experienced it. I’ve never had chemo, but from what I’ve seen and heard that has a similar exhaustion. Like I’ve been up for three days doing hard labor. Like I’ve been drugged, which I actually have been – I was roofied at a bar one time. Luckily, nobody got me, but I could barely function and ended up passing out in my locked car.
Myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), also known chronic fatigue and immune dysfunction syndrome (CFIDS), is a complex and debilitating chronic disease with a serious impact on one’s quality of life.”
Um, did I mention the brain fog? Where was I…
Right, exhausted on the couch. And I know all this stuff about what Lyme does, what chronic illness is, about what myalgic encephalomyelitis / chronic fatigue is. And yet, it is still so hard to let myself just be on the couch, doing nothing but resting. I keep thinking I should be doing laundry or something. Guilt.
But guilt for what? Who am I hurting by resting?
I think the unconscious thoughts are that I don’t deserve to live if I am not working hard. That I can’t justify my existence if I’m not doing things. And thus that I should be rubbed out.
I don’t consciously believe this. At all. In fact, one of my values is that all life is precious no matter what. But it’s there. Buried deep. With insidious tendrils reaching into every part of me.
A lot of this is from a childhood filled with loneliness. I always felt I was a bother, and in the way. Disliked, or just tolerated. And I was sick, physically and emotionally, from the lyme. I could never keep up. Always sensitive, I felt the impatience and contempt.
A therapist once told me that the human psyche is deeply damaged by neglect, just as much as by abuse. We cannot tolerate it. It rips at our souls.
An echo of that ripping is what I feel when I lie on the couch and feel guilty for not doing things. I unconsciously fear people will turn their backs on me, in contempt and judgment. Maybe I am turning my back on myself. I need to really embrace myself with compassion and care. To treasure my own life. To be patient and kind with myself. That is the most powerful healing I can do.

How Chronic Pain and Illness Fan the Flames of Uncertainty | Psychology Today

” Here are six ways in which uncertainty is a particular source of stress for the chronically ill:

1. Uncertainty about what plans to make with people

We spend a lot of time figuring out what’s best for ourselves. On the one hand, we don’t want to over-commit to others and then have to cancel. On the other hand, we don’t want to unnecessarily isolate ourselves too much. This constant need to assess what’s best for us to do is hard and exhausting work. In the end, because of the uncertainty of our symptoms, most of us must simply make an educated guess and hope for the best.

2. Uncertainty about how we’ll feel each day…”

To read more and suggestions for helping: