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?

Oshogatsu – Japanese New Year 

I love Japanese new year. In my extended family it was more important than any other holiday, and the one time we all got together. And oh the food!! Most things were Homemade from scratch. Barbecued teriyaki chicken, gyoza, kinpira gobo. Platters of sushi. Even the rainbow finger jello! (hey, we’re Japanese American

But because of my multiple chemical sensitivities and intense fatigue from Mylagic encephalomyelitis, I haven’t been able to travel at all and haven’t been able to have people over to the house in a long time. Things like the lingering scent of shampoo, Deodorant or drier sheets can make me really sick. But slowly I’ve been collecting a small group of wonderful people who are scent safe for me, or are willing to make the effort to become scent safe. 
I live in Olympia, WA so many people are already aware that artificial fragrances are really poisonous and don’t use those kinds of products. One of my friends was willing to do a special load of laundry with products I can tolerate (and already doesn’t use drier sheets), and wash with products I sent over to her! I even had a friend who is even more sensitive than me attend via Skype! 

Ever since my husband and I met, on new years day we make mochi and ozoni, both traditional lucky new years foods. Mochi is sweet rice, pounded to be a soft dough. My husband makes batches of this to give to friends and family. 

A man is smoothing out a large round of mochi, about the size of a large pizza and an inch thick, on top of a piece of canvas covered with potato starch. He is in a messy kitchen.

Ozoni is a soup, usually with mochi in it. There are a million ways of making ozoni, and we like to have a variety buffet for people to assemble their own ingredients. We make almost everything from scratch. This year we had two kinds of broth: pork and veggie (for the vegetarians). In the bottom of the bowl went either a crunchy (toasted) piece of mochi or a soft (boiled in broth) piece of mochi. On top of that went the broth and any other fillings they wanted: broiled pork pieces, Shiitake Mushrooms, carrots, nappa cabbage, enoki Mushrooms, konyakku (yam cake), daikon (japanese radish), green onions and three kinds of miso, red and white soy based miso, and Chickpea miso for those who can’t have soy. 
A bowl of soup with miso, pork, Mushrooms, Daikon, carrots shaped like cherry blossoms, konyakku and green onions.

It was super delicious but the best part was having people I love over that were willing to make the effort it took to keep me safe. I might have far fewer people in my life now, but they are of far higher quality. 
Happy new year! 

A group of 9 people of a variety of ages, Caucasian and Asian, smiling cheerfully. There is a blurry image of another person on Skype on an iPad being held by somebody

No More Menstrual Migraines?

This is going to sound really bizarre, and I really don’t understand it myself, but it seems like I’ve gotten rid of my terrible migraines during my period!

For more than a year I have had migraines so terrible during my period that I have seriously considered doing harm to myself. I have had times where I have had to talk myself down from getting a drill, wanting to put a hole in my head. That sounds extreme, but that is the level of pain that I was in. I could honestly understand why some indigenous cultures did trepanning, where they would drill a hole in their head to let the evil spirits out. I was in so much pain that I honestly would have done just about anything to make it stop.

a_human_skull_showing_signs_of_trepanning-_wellcome_l0035690

Skull with signs of trepanning, from WikiCommons

I have always had a difficult period but I haven’t always had this level of pain. But the brain fog makes it difficult to remember when they started. I keep a bullet journal of symptoms to track my symptoms, medication,  what I’m eating, etc. However I didn’t start the bullet journal till after the terrible migraines had started.

In talking to my doctor about how to manage the extreme level of pain, he encouraged me to take a second look at my bullet journal to try to see if I could figure out what possibly could be causing them. I didn’t think that would work but I gave it a shot just in case. Going through my bullet journal I actually did not have a terrible migraine in the month of June and July. The only things that I could figure out that was different during those two months were these:

1. Eating potatoes and potato chips

2. Putting on weight

Okay, okay, I know this sounds ridiculous, but those were the only things I could think of that were different. And as I said I was willing to try ANYTHING.

My period was due in a few days but I decided to eat a bunch of potatoes and potato chips and not worry at all about calories. Up until then I had been eating really strict keto diet, because that is supposed to help with killing off Lyme disease.  I have late-stage chronic lyme disease that is extremely debilitating.

In just a few days of eating potatoes and potato chips and not worrying about calories, I still had a very painful migraine but it wasn’t the dear God I think I need to kill myself level of migraine. It was bearable. It was something I could live through it without wanting to hurt myself.

For the next month I continued to eat potato chips and potatoes and not worry about calories. I put on about 10 pounds. Everytime I started to worry about weight and disliking the way it felt on my body, I just remembered that I would do anything to get rid of those migraines.

MY NEXT PERIOD I DID NOT HAVE ANY MIGRAINE AT ALL. Just a bad headache, which to me is absolutely nothing at all. In addition my cramps were much much better.

I asked my doctor why this was happening and he said something about levels of hormones and that fat can help with transforming hormones or something like that. Honestly I don’t really remember the details. And right now I don’t really care. My next period is due in about a week and I desperately hope that this will be my second period in a row without a migraine.

Finding Rest and Saying No on the Holidays

andrew_stevovich_oil_painting_woman_with_autumn_leaves_1994_36-_x_72

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

Pacing

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

Xx

Explaining to the lay person what chronic Lyme feels like | Liberation through #Lyme #chroniclife

“I have no doubt that my husband loves me but I know that it frustrates him when I try to explain that he will never be able to understand what I’m experiencing. After a great talk today I think I may have come up with a way that can help him at least wrap his brain around it. I thought I would share it with you all too.

Imagine the worst case of Mono that lasts for 3 months, leaving you unable to lift your head off of the bed or take care of your basic personal hygiene unassisted. Now add in…”

https://lymemoksha.wordpress.com/2015/05/16/explaining-to-the-lay-person-what-chronic-lyme-feels-like/

Spoon thief stole my spoons when I wasn’t looking #spoonie #chroniclife

One of the most frustrating things about the chronic life is that with out any warning at all, I can be suddenly exhausted. And for no reason I can see. Today I was doing pretty good, relatively speaking, when I felt my energy just draining out of my body. Like an invisible vampire, draining the life out of me. Was it because I didn’t eat enough? Was it because I didn’t take a break soon enough? Was it because I did quite a bit of cleaning yesterday? I have no idea. I tried to take a nap but it didn’t work at all. I just lay there, getting more and more frustrated. Probably about an hour. But the exhaustion didn’t go anywhere. Then I started to feel almost drugged – light headed, dizzy, and having difficulty thinking. And crazy food cravings. I rarely get food cravings anymore, now that I am on a strict elimination diet. I am home now and crashed on the couch. It is hard to hold my head up. My wonderful spouse is making me stir fry, with garlic, bacon, chicken and broccoli. If a normal person felt like this they would probably go to the hospital. But for me it’s just another day dealing with lyme disease and this chronic life.