** illuminating respect: what is positivity?

“We can as easily become a prisoner of so-called positive thinking as of negative thinking. It too can be confining, fragmented, inaccurate, illusory, self-serving, and wrong. Another element altogether is required to induce transformation in our lives and take us beyond the limits of thoughts.” -Jon Kabat-Zinn, Wherever You Go, There You Are

            Ah, yes. Positive thinking. If we chronically ill people had a penny for every time we were told some variation of if you would just be more positive in your outlook... I'm pretty sure we would never have to scramble for rent money again. I don't think I'm alone in that when I'm reading some self-help book or other that is otherwise very helpful and friendly, and I come to the inevitable section on "creating positive energy", I can feel every single muscle in my body tense up.


             But there are hundreds of those damned testimonials out there, telling us that you can change your own life if you just change your own thoughts.  Nothing makes me a Negative Nellie and a Self-Righteous Sally more than than a testimonial in a self-help book. Sure, it's supposed to be uplifting,

Negative Nessie?

but those little blurbs just don't tell the whole of the story. They are the Disney-movie version of someone's hard-worked transformation. With only these big-eyed, tiny-waisted princesses of positive-thinking stories out there, it's hard to feel like that could ever work for a brunette glasses-wearing beastie like me, you know? Or am I going waaaay too far with the Disney thing? Anyway. It got to me, so I started doing some more research on positive thinking. What I've come away with is this:



              We define positivity for ourselves. Think about it. Is your chronic illness just like anyone else's? No. Are you just like anyone else? No. Our positivity is our own. For me, I try to maintain a certain base level of positivaciousness in my life. I don't try to smile when my muscles feel like they have been turned inside out and then set on fire. I don't think "Gosh, at least I'm still alive!".  But I do make up words like "positivaciousness" that make me smile. My personal positivity is the remembrance that everything is transient. This might make other people feel worse. It feels better to me to remember that my pain is going to change (if not get better, it will at least mutate into something different), that my bad mood is going to change, that the city I dislike living in will not always be my home, etc... It makes moments that are good a little more precious, remembering that they are fleeting. It makes me feel like less of a bad person when I can't summon up even an ounce of positivity. Because I know it'll be back later, and I can be a negative grouchy pants to my full capacity of negativy grouchaciousness and I will come back from it fully indulged and refreshed. If I don't let myself feel all my negative feelings when they're there, I feel like I haven't respected myself, and it turns into a perpetual wallow, which is just 100% no fun.


                     We have to respect who we are and what it is we are feeling.  I'm starting to think of "positive thinking" as "respectfully thinking". As in, when my muscles are doing the inside-out-on-fire-thing that they do, it's disrespectful to say "I AM FINE" because uh, duh, I'm not. But it is respectful, and (to me at least) still positive to think "This sucks, this sucks, this sucks. But it won't always suck. This still sucks." As long as I have the hint of "it won't always suck" flavoring my "this sucks", it feels more respectful and eases some of the mental discomfort, if not the physical discomfort of being in a situation that, quite frankly, sucks.

Everything is unfolding as it should

                 I've had difficulty doing positive mantra/affirmation meditation because I struggle to agree with most of the mantras/affirmations. I've been learning however, to alter them to my own personal tastes. Now, not only does a mantra feel powerful to me, but it feels respectful and kind. For instance, a mantra I read from astrologist Jan Spiller for those of us hanging out with a Pisces North Node** is: all is well, and everything is unfolding as it should. When I am not feeling well, it feels downright disrespectful to say to myself that all is well. But it does feel comforting to say that everything is unfolding as it should. It gives me that vague sense that while I am in a bad situation or a bad mood, it'll probably work out to something decent in the end. When I'm feeling well enough, saying "all is well" makes me feel like I'm just tempting fate. So I've just taken that piece away altogether, and now it also feels more like "my" mantra, not just one I picked up in a book.

               

  If positivity is about being respectful, then optimism about being hopeful. Most people that I have met with chronic illnesses, despite complaints that are perceived as negative, strike me as very positive and optimistic people. We try to care for our bodies and minds, and we try to keep quiet hope alive. I never hope to be 100% better, and many non-sick people view this as negative thoughts. But on every bad day, I still have hope and faith that there will be a slightly better day in my future. On every good day, I try to respect that I may not feel so well tomorrow.

 If you live with people who think you are too negative, who think you are not trying hard enough, you might benefit from really asking yourself what positivity means to you. Try to engage the people you live with in the thoughts too. You could easily be on different wavelengths, and might benefit from adjustments on both sides. I frequently have conversations with Jose about whether or not I am treating myself with respect, whether or not what he asks of me is too much (or, more commonly, if what I am asking of myself is too much). Chronic illness requires a lot of major shifts in thinking and worldviews. It's taken me years to not want to curl into a ball and cry when someone tells me to think more positively. I'm not confrontational, and I likely won't leap into telling a stranger why my worldview is different than theirs, but it helps me to know that they just don't understand my situation -- and that is not a crime.

Ponies keep me positive. 

For other fun articles on positive thinking that don't meander around philosophizing and blabberizing as much (but also with fewer pony pics), try these:


http://tinybuddha.com/blog/why-positive-thinking-didnt-work-for-me/

http://jenniferlshelton.com/2011/08/02/secretdoesntwork/




**I like looking through books like Jan Spiller's and using any mantra that feels nice. While technically I do have a Pisces North Node, I use mantras from other signs, from religions that aren't mine, and yes, from quotes in fantasy books. I liked a prayer I read in a Jaqueline Carey book so much that I adapted it for myself, even though the god it was meant for was entirely fictional. The world's your mantra oyster. Or something.

** seeds: softness, care, compassion and mercy *

This month, the only seeds I'll be planting are the seeds of compassion, softness, understanding, kindness and mercy.

karuna -- compassion

 Why no new projects? I'll be visiting my family back in Oregon for two weeks in the middle of June. Especially after such a long flare period, with only a small break between flare and travel, it seems prudent to not do much of anything.

redwood seeds (!)

Trouble is, I'm a do-er. I relish in the simple doing-ness of Doing. Choosing to "not do much of anything" is not a simple task for me. I was looking for a sock pattern, when the internet decided, instead, to show me a bit of Buddhist wisdom (perhaps I read too much cyberpunk and sci fi, but it sort of felt like the internet was responding to my thoughts, not my search inquiries. freaky, and totally beside the point). I found this little mantra gem that touches on so much of a chronically ill life -- the subject of compassion for the self, and the handling of pain :

"Karuna

May I be eased in my pain and suffering,
May I hold my suffering with softness and care,
May I respond to my suffering - and the suffering of others with compassion and mercy"**

pacifica

Reading this gives me a little ease in my not-Doing. It's not that I am not Doing, but rather, what I am Doing is holding myself with care and kindness.

In order to 'ease the pain and suffering' I'm trying to be super, super careful with my energy levels. If I even think it might wear me out, I've given myself full permission to skip it. This includes cooking, daily walks, dressing myself, whatever might possibly get me feeling notsogood.

With simplicity (and airplanes) in mind, I've chosen a simple knit for this month. I'm sticking with a plain pattern, in a lovely Knitpicks tonal yarn called "Pacifica" -- chosen because I'm heading back to my Pacific homeland!

To 'hold my suffering with softness and care' I'd like to pamper myself a little, indulge in things that make me feel good, rested, relaxed, etc... but I've been drawing a blank. When I'm in my hometown, I'll be pampering the soul a bit by spending time with my family, but I know it'll take a toll on the body. I found a few recipes for face masks, foot soaks, little things that I can squeeze in here and there, but any outside-the-box pampering ideas would be greatly appreciated. I'm not too good at "girly" things (even though I adore them) like spa treatments, so trying to do them on my own can be stressful...which is, of course, entirely not the point!

And, finally, to 'respond to suffering with compassion and mercy' -- well, I'm just going to try to keep breathing, and stay calm. I've found some "yoga breaks" from the Kripalu website, that are 5-minute podcasts I can keep on my phone and listen to. Some are meditations, some are breathing exercises, and some even incorporate a few stretches. It'll be good to have around for travel, and keeping myself grounded and aware is the best way to keep myself from responding to my pain (or the pain of others!) with anger, frustration or stress.

I know that I'm a little terrified to fly -- I haven't traveled much since being diagnosed with Fibromyalgia, and the times I have, have not gone particularly well. Two seven-hour flights sound unbelievably exhausting, not to mention the three-hour time difference. Any tips or advice for flying comfortably is always greatly appreciated (although, if you could save the horror stories until after I'm safely home, that'd be swell :) )!



Do you hold your pain with softness, or do you grip it in your fists?



**(I changed this slightly from the version found here)

** may harvesting: or lack thereof **

As I mentioned in my latest post, I've been flared up heartily. This means that many of the seeds Iplanted early this month, were not well tended. It was a good reminder that the "seeds" are really just things to try out, to see what I can maybe incorporate into my life. When I'm feeling poorly, I really need to focus on simply feeling better, and know that what I can always come back to what I started later on.

What I *do* have to share involves a fair amount of Mr. Robert Frost and his poem, Spring Pools. So here's a bit of poetry for you:

These pools that though in forests still reflect
The total sky almost without defect,
And like the flowers beside them, chill and shiver,
Will like the flowers beside them soon be gone,
And yet not out by any brook or river,
But up by roots to bring dark foliage on.
The trees that have it in their pent-up buds
To darken nature and be summer woods---
Let them think twice before they use their powers
To blot out and drink up and sweep away
These flowery waters and these watery flowers
From snow that melted only yesterday.

The sock pattern I made this month was called Spring Pools, based on the aforementioned poem. It was also the poem that I chose to memorize! However, oddly enough, Jose decided to also memorize this poem to surprise me. So when we, late at night, tried to surprise each other and started reciting the very same poem to each other, it was sort of the literary equivalent to showing up to a party to find your best friend wearing the same outfit. We laughed, because...well...how often does that happen? But I think a tiny part of each of us will never forgive the other for stealing our recitational thunder. I have not tried to memorize another one. I need more time before the wound heals...

We haven't managed many expeditions, due to my inability to function as a human being, but this weekend we did make it out to have a breakfast picnic at the nearby park.

I'm glad we usually go for morning things, because as we were leaving, the park was about to be overcome by the hordes of people getting ready for Memorial Day Weekend. I have to be honest -- I didn't know that Memorial Day Weekend was really a Thing. I guess since we don't usually have even remotely nice weather in Oregon this time of year, we just bypass it? It has been another Midwestern learning experience! Next year we'll be more prepared. 

Walks? Cleaning the house? Yoga? Sorry little seeds, 'cause NOPE. I have, here and there, gone out for my morning walk, or cleaned out the sink, or done a seated-forward-bend, but honestly...it's all been too hard to even think about doing it regularly.

 So, while very few of the things I wanted to move forward actually moved forward, I feel more confident than I have in a long time. Learning to take a flare in stride has always seemed utterly impossible. I can't pretend that I handled this one flawlessly - there was still a good deal of whining, and some temper tantrums, and a few other unpleasant incidents - but really, all things considered, I did well. I'm still not out of the weeds, but things have definitely been changing for the better, if incredibly slowly. 

** wise words: when health is not on your side **

Pre-post: Me, blogger, and Microsoft OneDrive got in a fight, and as a result, I have a wonky new layout that I don't have the energy to fix right now. Um. Just, sort of avert your eyes. Sorry.

I have a post that I was going to put up, but then I saw this come out on Michelle's blog, the Fat Nutritionist, and I really wanted to share it. I also didn't want to format my own post. Ahem. But the message that Michelle gives here is really, really important and I think many of us need to read it!

In her blog post "When health is not on your side" that I am linking here and being really explicit about because I know my links are not brightly colored and visible and I'm totally working on that, Michelle talks about what it means to try to attain "health" when, it doesn't seem like "health" the way people in glossy magazines and yoga websites talk about it. Definitely read the comments too...the people there are so smart and amusing and friendly! Their insights are usually just as good as the blog entry itself :)

** seeds: plantings for May **

OMG GUYS IT'S MAY! For someone who thought she'd never make it out of the Midwest's polar vortex alive, I'm actually a little shocked that it's suddenly not only not below freezing, but actually nice! Spring here in Cincinnati is surprisingly a lot like what I, a native Oregonian, think of as summer. Between 60 and 80 degrees with a couple of days of rain per week, it's sort of perfect for me. I cringe almost as much at the idea of Midwest summers as I do at the Midwest winters.

Here's a brief look at the seeds I'm planting for May!

• I got some lovely sock yarn in the mail yesterday from Knit Picks, and I'm super excited about it. I plan on making the Spring Pools pattern from Ravelry. I don't often use patterns for socks, but I'd like to try as there are so many out there. Technically, I started these socks yesterday. I made the toe twice -- and I made it wrong twice each time. It just goes to show that no matter how many socks you think you've mastered...you haven't.

Knit Picks "Stroll" in Sapphire Heather 

• The littlest bit of yoga. It's often suggested as an "easy" exercise for people with chronic illnesses, but the fact of the matter is that it is not that easy. It is, in fact, very easy to injure yourself trying to do yoga without much guidance, and if you've got easy muscle flare-ups in your shoulders like I do, Sun Salutations are your worst enemy. I've been practicing since I was 13 or 14 but have been struggling in modifying my practice to my body's new ramifications.  I recently checked out Yoga for Back Pain from my library, as it came highly recommended. He suggests that you find the source of your pain (in my case, I chose musculoskeletal) and practice a few poses several times a day. It seems a little daunting, but since he also recommends that you only hold each pose for 15 seconds to start, it actually has not been too hard (yet) to fit in to my day. I found his descriptions of poses to be a little confusing, and despite supposedly being for people with chronic and/or acute pain, didn't offer too many modifications. I found that yogajournal.com has an excellent database of poses that include full descriptions, tips, variations and modifications.  I'm doing: Legs-up-the-Wall pose for 5 minutes,  followed by 15 seconds (on each side) of the following very modified postures:  Head-to-Knee-Forward-Bend (I use a strap), Seated Forward Bend (strap here too), Marichyasana I, Intense Side Stretch Pose (with hands interlocked behind my back), and a Halfway Reclining Hero Pose followed by a Child's Pose. 

• Expedititions (or Expotitions, a la Winnie-the-Pooh) . Now that the weather is appropriate, and Jose is done with school for two months, we've decided to see a little bit more the city we've been (caged like angry beasts) living in.  Every Saturday, we'd like to go out and do something. We found a park nearby that requires very little effort to get to, for days when I'm not up to much. Otherwise, we've got the Ohio River Walk downtown, the Cincinnati Art Museum, the Botanical Gardens, the Zoo, plus any number of things across the river in Kentucky. If we're feeling really nuts, we might drive to Louisville or Yellow Springs.

A purple pedestrian bridge across the Ohio! 

• Similarly, we've started going for walks on Sundays in the nearby Burnet Woods. It's lovely, woodsy, and so many cardinals come out to play! It is an opportunity for me to walk a little more than my 10-12 minute daily walks. Plus -- one of the trails lets out at a bagel shop. Shockingly, we always seem to end up on that one...

Woods!

• Brainwise, I'm going to keep working on learning Sanskrit, but I'm also going to be practicing translating some poems from Spanish (I've got my heart set on re-working some of Ana Merino's work). Plus, some time in March, I attended a talk by poet CK Williams who talked about how memorizing poems can help you write poems. I do leave the writing of poetry mostly to Jose, but it did trigger a memory of how I used to memorize poems as a kid. For no apparent reason...I just liked them! So I thought it would be fun to go back and re-memorize some of those. It'll make my brain happy and strong, and I'll get to feel like a kid again. Win/win.

• My walks will change from 10 minute daily walks to -gasp- 12 minute daily walks. One of the hardest things I've learned from Fibromyalgia is that my body takes a long, long time to get used to something. So I'll only be increasing minutes in very small increments.

• I've always been interested in the Fly Lady, but find her programs too difficult to follow. They expect too much out of a chronically ill person (wearing shoes? I'm not taking shoes off every time I need to rest. Sorry.), and move too fast for me (see above, with walking). I'm not always flexible, and prefer to do things As They Are Supposed to Be Done which kind of gets me in a bind. However, figuring out that I can adapt a walking program has me realizing that I can adapt the Fly Lady's program. I already make the bed daily, so that one is an easy win. This month I'm going to practice keeping the sink clean. Erk. And I'm going to do it barefoot. So there.

Whew. That seems like both Way Too Much and Not Nearly Enough at the same time. What seeds are you planting?

** harvesting: what grew and what didn't **

Approaching the end of the month, I took a look back at the seeds I planted to see what happened.

Duds -- These seeds did not grow.

• So. The chiropractor down the street? Not so much. The building is still there, but it's empty. Whoops. Oh well. The main reason I wanted to give chiropracty a try was because it was close by. So I'm shelving it for now.

• On the sketching front, I'm a little creatively stalled. I've stopped forcing a daily sketch and while that feels right (they were getting sooo uninspired) I feel a little uncomfortable with my general lack of artistry on a regular basis. Oh well. I'll get my groove back, right?

?? -- I'm not sure what's going on here

• I've learned a handful of Sanskrit roots and some really weird sentences. The website I'm using to teach myself uses the Baghavad Gita as its main source. I've learned the words for to suffer and to lose one's consciousness. So that's something, right? It feels kind of stalled because, well, I'm not super into it. I've never tried to learn a language in such a pristine manner, only for text and not for speaking, so it's got me feeling kinda itchy and kinda what's-the-pointy. I'm going to keep going for another month or so and see if I feel better when I'm actually able to read a few sentences. For now, this is all I've got so far, and I feel a little unsure about it:

"Hey, hey, I am not your hero." Hmm.

Blossoms-- Shiny! Pretty!

• This rocked. I love knitting socks. It's nice that the project is small, portable, and actually useful. I think I'll be knitting a pair of socks every month. It feels nice to have something visibly  accomplished.  These ones are a little on the funky side, as I made them to try a couple of different techniques.  One sock has a squared wedge-style toe, and the other has a toe that I'm calling the "sweet tomato toe" as it's based on the sweet tomato heel. The wedge was way easier, but I'm a sucker for super rounded edges. I also, due to my ridiculously small feet was able to knit two socks out of one small skein, but because it was a variegated skein, um, they don't match. Oops. (Also, my photo editor is absolutely not working right now, so I apologize for the expanse of carpet and poor lighting)

Yes, my feet are that small.

Trees -- These are going to take a long time to grow, but the roots are in, and good.

I'm planning on posting more in-depth posts about these "trees" this month, as both nutrition and exercise are very crucial to health with a chronic illness but feel like an impossible maze to navigate.

• I decided to stop being just inspired by Michelle at the Fat Nutritionist, but to actually consult her. Since the chiropractor thing didn't work out, I wanted to pick something else to try and focus on.  I'm now "seeing" her every couple of weeks via Skype, and although we've only met up once so far, it was really quite monumental and life-changing. I've got a huge bag of snacks in the kitchen to prove it.  I felt like I was doing really quite well, being 5 years in recovery from disordered eating, but in just 90 minutes she ripped the bandaid off of a small yet quite serious set of issues that I probably knew I had, but didn't acknowledge. Oh boy. If you'd like someone really down-to-earth and intensely intuitive and smart about food with the added benefit of never having to leave your house, I recommend contacting her. 

• I like walking. I've been walking ten minutes a day...maybe 4-5 days a week? The first week I went out, I only went out MWF, and then it was a bit rough. I countered each ten minute walk with a 15-minute warm bath and 10 minutes of stretching. I'm now able to do a bit more stretching and have ditched the bath unless, you know, I want one. I've considered upping my time to a 12-minute walk, but I think I'll wait a little longer before I do that. The fibro body is fickle, and I want to make damned sure that I'm not going to overwork it and end up back where I started.

** seeds of spring: what I'm planting **

The seeds I'm planting this month are a variety of different plants. All of them, I hope will work together to help my health and my general well-being. When it comes to caring for a body, any body -- healthy or chronically ill -- I feel that we do best when we vary our attempts to care for ourselves. The human body is a constantly changing thing, and so consistently needs change and variation. With Fibromyalgia and CFIDS, I find sometimes that what works for me one month, simply doesn't work for me the next. And so I find myself constantly reevaluating, reassessing what my body and my mind need.


Alright, alright. This month's Seeds:

• I started learning Sanskrit. I found this lovely website devoted to teaching the language online for free. I'm interested in learning more about yoga, and poetry and Sanskrit combines both interests in one. Plus, learning languages is good for that brain thang. I enjoy learning languages, so it's a good way to combat some of the fibro fog, without spending hours bitching at the NY Times Friday crossword. 

This is your brain on Sanskrit

• I'm knitting a sock. I really love knitting socks. I just do. I mean, really, what is a better meditation than sitting there, counting stitches, counting rows? Sometimes, when I don't have anything to knit, I visualize knitting and that calms me down. True story. Also, while the research is a little spotty, and I'd like to see some studies where they monitor the brain of a knitter (or other crafter) while knitting (crafting), there is both this study and this study coming out saying that knitting really can calm depression, and help cognitive abilities. 

Strike two against fibro fog. Plus, warm feet next winter.

• Inspired by Michelle at The Fat Nutritionist, I'm trying to chill out. Particularly around food. Food is a touchy topic for me, and this woman makes me feel like it's okay for food to be a touchy topic. In her blog post about Perfectionist Cooking Paralysis, she describes me perfectly: I will eat slop that other people serve up, or at ahem Skyline, but I won't let myself cook anything that doesn't sound or seem gourmet. It takes me hours (really) every day to prepare food, and gosh, you know what? I don't have that energy. So I've been inspired by her system of levels, to try and tone my cooking down a notch. This doesn't mean I won't be getting good food, but also that I won't be making myself sicker by working too hard on a meal that I then can't enjoy because I've worn myself out. Whoops.

It's cultural. And across the street. And gross. And delicious. And cheap. Skyline is all things. **

• I'm going to try to walk more, now that the outside air doesn't paralyze me on contact. I'm not overly fond of walking in my neighborhood, as there are way too many hills. Oh well. I read this entry on how to establish a walking program for fibromyalgia, and decided I should give it a shot. Plus, all the various research out there on how cardiovascular exercise can improve cognitive function, mood, or the research that shows that walking can improve the body's anti-inflammatory response. You can read a less technical summary of studies here. It kinda seems silly not to try it. Until I look at the hills.

"Beautiful rolling hills of Cincinnati" OR "Sure. Go for a walk. MWAHAHAHAHA."

•  I'm hoping that a visit to a chiropractor once a week will help my body function better. I haven't found a lot of studies that are well-controlled on chiropracty and fibromyalgia. But I have seen a chiropractor before for multiple back and hip issues, and have had mostly positive results. I'd like to see if regular visits help keep my shoulder muscles from clenching and turning into a vipers nest. If not, then I'll move on to try something else! 

• I've switched my daily sketches in ink from focusing on inner things to focusing on outer things. In other words, I'm actually trying to sketch things and not worry so much about how awful they look. And then sketching them again and again until I get a better feel for it. Similar to knitting, drawing is shown to be particularly helpful with cognitive function. Often, though, it just makes me cranky because the things that come out of my pen should be more like the things in my mind. Whoops. There's that perfectionism again.

Yes, I have a scanner. No, I did not use it.

What seeds are you planting? Are you lucky enough to actually plant real seeds in a real garden? 

**This is a shame-free zone. Please do not shame me or others for food, exercise and treatment choices. I'm happy to hear your experience with any of these things, and always happy to hear what works for people. I'm happy to hear cautions that are worded respectfully and without aim to hurt.

** balance, depression, dishes and lumps **

“It may be that I set my sights too high and so repeatedly end a day in depression. Not easy to find the balance, for if one does not have wild dreams of achievement there is no spur even to get the dishes washed. One must think like a hero to behave like a merely decent human being.” 
-May Sarton, Journal of a Solitude

May Sarton + unidentfied feline

I adore this quote. When I first read May Sarton’s journal I was immediately in love with her. Like me, she suffered from rages of emotions where she would nearly black herself out from simply being overwhelmed with feeling. Like me, she was a snarky little creature -- and nothing is more moving to me than something poignant tinged with dry wit. Unlike me, she was super eloquent about it all. Her freewritten journals are perfect little nuggets of everything I’ve ever tried to express myself to be. (My freewrites, by the way, actually have handwritten “um” and “eh” peppered throughout.) This very quote cuddles with me on dark days, and makes me smile on bright days. Here is what it says to me, specifically:

Living with a chronic illness means struggling with the balance of: setting one’s sights too high, setting one’s sights too low, heroism, victimism, depression, and of course, dishes. All of these things reach a sort of heightened awareness to the chronically ill. May Sarton herself struggled with chronic depression (and was still a prolific writer and even turned her depression into art by publishing her journals about  it. You go girl.)

This struggle with balance isn’t new. Read any spiritual book, and it won’t be long before you run into a balance issue. Whether we’re talking about balancing good versus evil, yin and yang, kapha and vata, it doesn’t really matter.

In the Fibromyalgia world what we’ve got to work with is less clear. I like to think of it as a lump (feel free to personalize your lump, we’re all snowflakes, etc) consisting of:

paindiscomfortstressangerfrustrationhopejoyfutilityfreedomstrengthlovehateconfusion

Then we’ve got to take that lump and parse it out. Let’s start with “pain”. That in and of itself is a whole new lump:

shootingburningachingmusclejointgastrointestinalheadachenerveradiatingneckbackarmknee

At about this point you should be realizing that we are not equipped for this balancing act. Or acts. Hell, it’s a circus at this point.

This realization can possibly paralyze you with fear over the hopelessness of the situation...but my intrepid readers, I say No! Let this information instead empower us! We are absolutely not going to get our lumps (or our lives) in order by following one routine, by following one diet, by reading one book that tells us how to balance our minds. So let’s breathe a collective sigh of relief. This crap is going to take some time.

But remember that we still seek balance, no matter how difficult (or long) the path.

Like May said, we still need those wild dreams of achievement. Don’t just let those lumps speak for you, make you a victim. Keep peeling off a layer, and probing the layers underneath it.

May Sarton + unidentified canine

I have wild dreams of waking up at a regular hour, of whining less, of keeping the bathroom clean, and of painting all the things -- what about you?

* * limitations&maps of the self * *

Two days ago, I had my mind very gently blown when I came across this:

Limitations should not always be seen as negative constraints. They are the geography of our situation, and it is only right to take advantage of this.- Deng Ming-Dao 365 Tao

I have been, for the past month, using a self-help book called The Artist's Way.  It is an excellent book that helps you find your creative depths. I say "depths" to convey that it's not just a fluffy book about learning how to draw puppies realistically*. It's about finding that part of you that is creative and saying to it Hi. I respect you. Let's do this thing. ...and then actually doing this thing.

But this week, I hit a snag. Julia Cameron, a sweet but often bossy and just a tiny bit self-righteous lady, tells the reader just how many things you can get done in your life if you do not read for a week. You can, for instance: hang curtains, rearrange furniture, plant a garden, paint a shelf, cook, pay instead of procrastinate bills, go dancing.  As I read through that list, I think Well. Maybe she can do all those things. I'm pretty sure I can't.  She also makes a point of describing all the people who think that this chapter doesn't apply to them. Gulp. 

But on the same day as reading this, I ran across the above quote from Deng Ming-Dao. It made me think of why it is that I read. I have a schedule that I follow on a daily basis -- it changes from day to day, but is more or less the same. Let's say I want to work on a project. First, I figure out what the energy level of that project is. Translating Neruda poems? Low energy. I can have 30 minutes. Cleaning the kitchen? High energy. Only 10 allotted. Then I hem that project in with plenty of rest for my body and my mind. I read for 10 minutes after I've worked on my translations, and then decide if I want to continue for another 30. I read for 30 after working on the kitchen and decide if I can do another 10. Often, I make these decisions beforehand so that I don't fool myself in the moment with that sly Oh, I'm fine, I can keep going that is the origin point of every flare-up.

What do I do if I take out reading? Lay on the couch for several different 30 minute sessions? Fretting? Worrying? I already do two sessions of meditation and one session of relaxation (not to mention the multiple yoga and acupressure sessions) every day -- I spend a lot of time with my mind. Reading is a matter of pride. When I read, I am defining who I am. I am defining who I am by recognizing my limits and using them to my advantage. If I don't take moments to read, to take myself away from my pain, from my fatigue, then I lose. I lose myself in the myriad of things to do. I try to rearrange the furniture, to paint a shelf, to bake cupcakes, and I send my body into a tailspin.

My concession to Ms. Cameron is to take time off this week from social media and the internet. This is where my time gets lost. Truly, I love the ability to connect with people around the world, and adore the support for chronic illness in forums and blogs, but between Buzzfeed and reading an entire forum thread on a topic I know nothing about, I can lose three hours of my day.

I still feel just the tiniest bit guilty, like Julia is going to find out and shake her head at me. But I plan on holding my head up high, and paying attention to my own geography for once. Do yourselves a favor and take a few minutes this week to transform one of your perceived limitations into a healthy geographical boundary. How does it help you define you? Does your pain piss you off, or do you use it as a guide? Can you think of something that you can do in place of complaining for one day?

Okay, okay.

Let's be real here. We're not going to stop complaining. Um. We hurt. But, hey, maybe we can bite our collective tongues back for ten minutes and sketch a freakin' flower. Complaints may then resume. But with a freakin' flower to look at while we do it.

sorryidonthaveascanner

Happy new year, and happy mapping!


*There is nothing intrinsically wrong with drawing puppies realistically. If you can do this, I love you.

Fibro Days: Disengagement

There are times when you are simply not engaged with the world, with your spirit. Especially with a chronic illness, it can be very hard to focus solely on your own wants, needs, spiritual devotions, etc... Sometimes, we take a break. In my case, this break was not voluntary -- it was necessary. I learned an important lesson these past few months: being in constant contact with the fullness of my physical pain and the spiritual struggle that accompany Fibromylagia is too much. 

Mindfulness is a very useful tool. Yet as much as we need to learn to be aware of our pain and our surroundings, we must also know when to retreat, when to disengage. I burnt myself out trying to learn too much at once, trying to fix too much too quickly (read also: the story of my life). 

I caught a cold back in early September, and it put me down hard. I kept waiting for that day when I would get back up, and I slow began to realize that day would not come. Before I caught the cold, I had too many things going on, and I could not even begin to pick all those things back up bonus points if you can guess what caused my immune system to finally break. I started to realize that I had to go back to the bare minimum, the absolute basics. Thank you, fibromyalgia, for constantly keeping my ego in check. 

I had absolutely no desire to go back to the beginning and create basic routines that help me get up and focus in the morning,  re-energize in the afternoon, or get to sleep at night. None. But I did it anyway. Since late September, I've made a point of doing my yin yoga and meditation to wake up, journal writing and sketching before breakfast,  an acupressure session and tea mid-afternoon,  and valerian tea, yin yoga and a pain-relief acupressure session at night. I've even made a point of giving myself a week and a weekend, which, while seemingly arbitrary for someone who doesn't work, has helped bring shape and function into my life. Most days, I do these things grudgingly -- trudgingly, even. But slowly (oh good lord, so slowly) I am finding my feet again. And some days I surprise myself by the energy that springs forth from a good ten minutes of sketching, from taking Sundays off from any sort of responsibility. 

Recently, I came across this page on disengagement in the book 365 Tao: Daily Meditations by Deng Ming-Dao, and it spoke to me strongly.

       "There are some days when one is disengaged from Tao, not interested in devotion, and everything just becomes an empty form. Gone are spiritual bliss, deep insight and integration with the rhythm of the universe. Instead, there is a duty, form, and stuff discipline. One can try to remember the reasons for one's quest, think of the achievements of the past, reaffirm one's goals, and still not be inspired to do one's practice. What do you do? 

       Every once in awhile, it's permissible to skip things for a day. If you are angry, under great stress, or ill, then it is best to simply rest. But if one has made vows, if it is only a matter of laziness or indifference, then you must exert your discipline and practice even if it means that you are just going through the motions. In at least half the cases, something significant will happen. The rest of the time, going through your forms is in itself a good practice. It build a tremendous momentum that will manifest itself in later times."

It gave me courage to know that it is okay to feel disengaged, so long as we keep trying and trying and trying  (and trying) to engage. This is important in all life, but I find it especially poignant for those of us struggling with a chronic illness. It so often feels as though we are going nowhere -- and when we do feel like we are going somewhere, we run out of energy before we can get there. But these small steps, these small routines make a huge difference in the end. And when, like today, I wake up with a headache and no energy, and I find myself not daunted by the task of writing in my journal, but actually heartened by the comfort of doing so, I feel the stirrings of something different on the horizon. The moments of true engagement with myself -- not a forced or forged awareness -- are worth every moment of simply going through the motions.

Knitting Days: Tinking

The word "tink" is the word "knit" spelled backwards. It's what you do when you need to go back a bit (or a lot), but not actually scrap the whole project. When you scrap the whole project, fyi, it's called frogging. I do not know the why of that one. 

There's been a lot of tinking going on around here. Everything's going backwards. I'm still slogging. Stuck in a rough flare-up that seems to have no end in sight. I'm sure it will end, they always do.

Look how pretty! 

 But when you realize that you need to go backwards for five whole rounds (180 stitches each + bonus: cables), you feel like giving in on the whole damn thing. I love this sweater and think it is coming along rather swimmingly. Then there is that sudden realization that I missed a cable row five rows ago, and boom I don't want to even think about the sweater, I hate the sweater!

The hard truth in knitting is that you can't move forward until you've gone backwards and fixed the mistake. So last night I did tink back those five rounds, even though I did truly just want to throw the sweater in a box and never look at it again. I'm still a little mad at it (even though, yes, it was my own fault because it was the sweater's fault), so I'm not really knitting away on it today like I might have otherwise. But at least I don't have to go backwards any more, even if I'm not moving too far forwards. 

What I'm trying to say, in case you missed my ever-so-subtle undertones, is that I'm stuck. I'm stuck in a flare-up and everything I'm used to doing isn't really on the menu these days. Making pudding turned into a disaster that left my whole body aching, and me crying. Pudding should never end in tears.  So all I can do is try to not get worse, until I can start taking steps to getting better. 

My solution? Star Trek: The Original Series and juice. I'm letting Captain Kirk handle my worries for the rest of the day, and drinking juice freshly pressed from my brand new juicer. And I'm taking a break from knitting.  Hopefully I'll be calm enough to pick it back up in a few days and start moving forward.

Happy tinking, happy resting, and happy knitting!

Fibro days: Slogging

I don't have the energy for a High Five for Friday. I can't even remember what I did this week, and the only pictures I've taken were of my hair, which I've finally managed to put up with hair sticks. It doesn't even look that good, but hey, I did it! Which leads to today's topic: Slogging.

You and me both, Kate.

I think my least favorite kind of fibro day is the one where you feel like you're pushing through jello to move. Sure, sure, the pain is bad and the cognitive difficulties are bad too, but this...this slogging really gets my goat. Today, as with yesterday, my issue is energy. Ever since coming down with a cold two weeks ago, I've had no energy. I feel, today, for the first time like I have no traces of cold virus left. But my body, I guess, still has to recover from all the effort of trying to make my immune system function. And it sucks.

Slogging, to me,  is when you have brain power, and you can think about all the things you want to do, but you cannot do them. Perhaps, if I was not being mindful of my body, I would go ahead and do these things, thinking that because I am not in a lot of pain, I am having a good day. Tomorrow, or the next day, I'd find myself in the midst of a massive flare-up, where low energy would be the least of my problems. I am, instead, being mindful. And it sucks.


When I'm feeling okay, I break things down into activities that are low-energy, medium-energy or high-energy. I try to time myself to only ten minutes at a time of high-energy activities (like cleaning the kitchen,  sewing, or taking a walk). Medium energy activities (drawing, writing letters/postcards, menu planning) get 20 minutes or so. Low energy activities (reading, knitting, watching tv) get 30-45 minutes. It's important to break even those up, so that I can adjust my posture, stretch a little, etc...

Most of these things are things that I enjoy. I look forward to them. And on days like today, every single one of them feels like a chore. Low-energy activities become medium-energy activities, and medium-energy activities become high-energy activities, and I can't even fathom the high-energy ones. Slogging days like today can break a person, make a person feel like absolutely nothing is possible. One right after the other can make you feel like you're stuck in this forever.

I did, technically, have my own photos for this post, but
photobucked flipped a biscuit this afternoon. Sorry.

I'm trying to get through my slogging days by going even slower than I usually do. It feels just the tiniest bit like torture, but hopefully my body will thank me for not pushing it before it was ready to go. And maybe, just maybe, tomorrow will involve just a little bit less slog, and a little bit more fun.

How do you slog?

Fibro Days: Freedom of Expression + High Five for Friday!

This semester, Jose is teaching what is essentially a freshman composition course at UC, and he has themed the whole course around the idea of freedom of expression. We talk so much about his course plan and activities in class, that I've been thinking about it on my own too. What does freedom of expression mean in terms of blogging?

Right now, I have several blog posts that I've started writing up, and then filed away. Some I didn't even bother to save. I haven't known what to post, or how.  I didn't exactly start blogging in order to blog about my chronic illness. I wanted to blog about my life, about being human - and part of that includes my fibromyalgia. It is so easy to be trapped by the blog equivalent of the five paragraph essay: a) introduce a point of contention in your life, b) describe how it affected you and c) turn it around fast with a realization or understanding from on high which suddenly made a&b acceptable. When it comes to freedom of expression, well, everyone can have a blog on any topic that they choose. But even though the topics and themes of blogs are virtually limitless, we do limit ourselves in terms of how we express ourselves. It isn't well-accepted to write a blog about how bad a day you're having -- unless you have that turn-around moment at the end. I don't really read the blogs of other people with chronic illness because it feels like I'm watching a Disney biopic of someone's life. The formula above makes life seem, ahem, rather formulaic, and not as rich. And some moments of sweetness and revelation are for me, and me alone. 

And so many of my blog posts go unpublished because I feel like a hypocrite, writing about how I've been having a tough time, and trying to find that nugget of sweetness within it. Here's the truth:  sometimes I can't find that nugget of sweetness.  Shocking, I know, but true. And neither can you. Not always. And that's okay.

I keep forgetting that it's okay to just post a picture and a sentence or two. This can convey the strength and the stress of living (with or without a chronic illness). I think that bloggers sometimes get caught up in the traps of writing a "proper" blog entry that we forget to express ourselves. I know that not everyone out there is always feeling as hopeful as they portray themselves. I think we need more of that honesty. Sometimes, I think our culture associates honesty with whining. It's true that there is a fine line between honestly expressing a struggle and simply whining about it -- but I think it can be learned with a bit of practice.


And even though I missed last Friday, I am super excited to rock another High Five for Friday link-up with Lauren!

1. I've been spinning again! That's right, taking some wool, doing something I don't fully understand with the spindle and...boom: yarn happens. Well. Sort of. This ball here is called a ball of "singles". I'll make a couple of those and twist them together and then yarn happens. One thing I can tell you about spinning with a spindle: everyone you know will text you all at once, and you can't do anything about it because the second you even think about turning your head towards your phone, the thread will snap and you will cry. True story.

2. I thought of this, made this, and then ate this. It is a prosciutto, tomato and chive pizza. And it is lovely.

3. I knitted me some boot toppers! They are those things that you slide around your calves so it looks like you're wearing legwarmers, but you can actually still fit your legs into your boots. I didn't know these existed until recently. As soon as I learned of them, I made them. They look pretty cute, but it's still very hot here, so I don't get to wear them yet :(

4. It's been overcast and exceedingly hot here, and I have been truly miserable. I don't connect grey skies with excessive heat, and it has had me all thrown off. Today the skies have finally cleared...and it has cooled down. I still don't claim to understand that, but I'll take it. This is the view from my favorite window in the apartment! Cardinals like to hang out across the street, and I love to watch them. There is a squirrel who spends his days in the acorn tree right at the window, and I've been watching him get fatter and fatter, and I love it.

5. Last but never least, is my Lily. Alas, she has not physically been a part of my week as she still lives in Oregon, but I've missed her little white paws and disdainful glares so very much these past few unpleasant days! Some feline condescending airs really go a long way towards getting over my fussiness and frustration. 

Happy expressing!