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Monday, September 15, 2014

** 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:

**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.

Monday, August 4, 2014

august seeds: respecting the self

"For healing to occur, we must come to see that we are not so much responsible for our illnesses as responsible to them."
-Christiane Northrup, M.D. Women's Bodies, Women's Wisdom

I meant to take only a week or so off from life once I returned from my trip to Oregon, but as I kept checking in with myself, asking if I was ready to return to "work", the answer continued to be a resounding no

When I say "take a week off from life" what exactly do I mean? I mean that I stopped implementing changes, making focused attempts at things. I told myself I didn't have to blog, I didn't have to knit, I didn't even have to shower if I didn't want to. And guess what? I often didn't want to. But I'm slowly feeling myself reviving and feeling the desire to cook something that doesn't come from a box, the desire to actually wash my hair, the desire to stretch and go on walks again. 

I started to get scared a little that "it" would never come back to me, that I would become stuck in a slovenly cocoon of my own filth. I also began to realize that the innate desire to actually take care of myself is strong. And that sometimes, not showering can be just as much of taking care of myself as showering. 

I don't feel good. I almost want to say that I don't even feel better than when I first returned from my trip. What I do feel is more aware, and more kindly disposed towards myself. 

I don't feel up to setting tasks for myself, like I might normally do with my "seeds" at the beginning of the month. Rather, the seeds I'll be planting will be respect. Respect for what my body goes through, respect for what it can do and respect for what it can't do. Respect for the notion that what it can and can't do changes on a minute-to-minute basis.

Of course, respect isn't easy. It's hard to change a long-standing cultural mindset that there is something inherently wrong with our bodies, rather than simply different. I've got some ideas that I want to share, some informative websites, books, articles, etc... And while I'd like to spread the information out in several installments over the month, my body might be asking me to do something else.

There is also nothing wrong with the occasional:

Because if that's how you wake up feeling? Respect that too!

Friday, July 4, 2014

**illuminations: coming home **

I have moved at least once every year since 2006. It was a very special feeling when we opened the door to our overheated, musty apartment at 2AM last Thursday to find it just as we left it. We were not returning just to pack up, nor were we arriving to an empty place and a future of unpacking, furniture moving, and food scrambling. Food was ready in the freezer and the cupboards, the only unpacking was the single bag we shared on our trip, and the bed was made.

Having spent two weeks visiting family, returning to a place that was mine was incredible. Returning to routines that I know take care of me has been overwhelmingly beautiful. It's all very simple, and it's still too hot and still too loud and still too ... Cincinnati, but this little corner of it is adapted to me and my needs. I never fully understood the impact of constant moving (although I suspected) until I came home.

 I feel split constantly -- here I have a home and my partner and a space to live my life, but in Oregon I have trees and unnoticed unshaven legs and trees and Yumm sauce (and trees) . While visiting Oregon, I realized just how much I feel like a fish out of water in Ohio. Some day I hope to make a space for myself, with these trees looking out over me, keeping me safe. But for now, I'm content to heal from the exhaustion of the trip in my own space, with memories of friendly trees. I hope to be active again on this blog soon, but please forgive me if I take some time and silence while I appreciate the simplicity of living a quiet life that's all my own (if somewhat lacking in trees).

Thursday, June 5, 2014

** 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 :


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"**

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)

Tuesday, May 27, 2014

** 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, 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'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. 

Wednesday, May 21, 2014

** illuminations: permission to chill **

I'm flared. Like. Badly. I've been flared since I wrote my seeds of May post. It happens. But, well, I'm not finding myself able to follow my normal routines, my normal "functions".  Usually this results in a serious panic attack, multiple tearful rants about not being able to be useful, but this month...well. I dunno. I sort of accidentally forgot to get upset about it. 

My body feels like an etching by Goya. Not good.

And you know what happened? I didn't end up having much to be upset about (okay. that's a lie. one has every reason to be upset about sciatica/it band/digestive system/musculature/nerve failures but, still. that's plenty to be upset about, why add more?) 

Theoretically speaking, I don't think that the purpose of life (especially a chronically ill one) is to do, do, produce, and then do again. But it is helpful to do things like "get dressed" and "sit up" and even go so far as to "brush teeth" and even "clean kitchen".  And when we flare up, we find ourselves worried that we'll have forgotten how to do these things when we return (if we ever return, it always feels matter how many times we've been through the cycle, it always feels like this time is the time that it simply won't end) to a better state of being, we will have to start all over again, learning how to cook, clean, go for walks, open our eyes, etc...

And generally, I feel that routines have an excellent basis in our chronically ill lives. We have to know what we're doing, even a little, in our lives to feel know...we ought to keep on living 'em. But when I flare up -boom- routines totally explode. And normally I get really upset about that. 

Usually, I try to do anything active in the mornings and save my afternoons for couch time - that's usually in keeping with my general energy patterns. But in flares, everything goes nuts, and I get stubborn and try to make myself do things in the morning when I'm totally worn out, and then keep myself on the couch all afternoon when I'm actually feeling kinda restless. It's really kinda silly. This time around, I've been trying to keep a mental list of things I'd normally do, and try to check them off at random points of the day. I've realized slowly that the world does not, in fact, end, I clean the sink at 4pm instead of 9am. 

It is hard to continually give myself the permission to things at different times than I normally would, just like it's hard to continually promise myself that I'll un-flare at some point. But in the end, staying as stress-free as possible is what is going to get me out of this flare, so if it means I'm not accomplishing much of my goals, that's okay. My goals have gone from "walking 12 minutes a day" to "not ending up in an exhausted tearful heap by noon". And I'm actually doing kinda okay at that. 

Thursday, May 15, 2014

** 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 :)

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