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I’m having one of those days filled with phone calls and waiting for test results, people wanting to know things right now, and waking up later than intended.

Honestly, it’s one of those days that could drive a person insane.

So I’m taking time for a moment of mindfulness. It doesn’t have to be a 30 minute meditation, or full-on yoga session. As one of my meditation instructors once told me, just take a moment to ask, “What is happening for me right now?”

I’m noticing my hands are swollen today…noticing myself getting swept up in thought…aware of my fingers on the keys and my feet on the floor. I’m aware of taking a deep breath, and my stomach being tense.

The world is a little less chaotic now than it was a few moments ago. Nothing has been miraculously “cured,” but I don’t feel like I’m being sucked up in some interdimensional vortex of rushing.

Part of the key to this exercise is to focus on sensations of the here and now – not thinking about the 50 things you have to do before dinner, instead examining the texture of the floor, or the nature of your breath. If you have a thought or a worry, notice that you’re having a thought or a worry.

So I’d like to invite you, if you want, to ask yourself, “What is happening for me right now?

I have been feeling pretty down lately. I suppose when body, mind, and spirit are out of whack at the same time, it affects a person deeply. For me, it felt like it was creating some sort of multi-dimensional vortex that sucked all will from my body. Or maybe that was just the medications I’ve been taking.

The weather was gorgeous today. Spending multiple days snow-bound due to blizzards helps one cultivate a deep appreciation for 60-degree weather. (That’s 60 Fahrenheit for those of you overseas, or roughly 15.5 Celsius.) I did a morning meditation outside in the garden. I was planning on doing a “body scan,” but was overwhelmed by the depth of sound surrounding me. Planes, construction, my dog, people, cars, and lots and lots of BIRDS. It was a nice 15 minutes of connectedness to the world.

My mood started dipping mid-day. No need to go into the how’s and why’s. I think all of the pain – physical, emotional, spiritual – that’s been happening lately just walloped me. Seriously walloped me into deep gloom. So deep that someone I know asked me why I was being so pessimistic lately. Not necessarily the thing to ask someone who’s already not feeling well.

Anyway, I went to meditation tonight and had an amazing experience. I’ve been dealing with a lot of anger, so I decided to mainly focus on a “loving kindness” meditation rather than a body scan. (I did do some body scanning, but that wasn’t my main focus.)

Then came the post-meditation dharma talk. I got a good chance to laugh at/with myself in a very compassionate way. It’s really hard to put into words.

My main realization echoed one of the teacher’s. That when things are going well, I think that it must be because I’m doing something “right” or “good.” And that when things are going down the toilet, I think that it must be because I’m doing something “wrong.” So I drive myself crazy trying to figure out where I went wrong, and what I can do to make it better.

Secret of the evening: sometimes pain just happens. There is no rhyme or reason, or perhaps there’s a reason that’s out of your control. Once I let go of feeling personally responsible for creating my pain, this huge weight lifted from my chest. Don’t get me wrong, my foot still hurts like hell. I just don’t feel like I’m in my personal penal colony anymore.

When I got home, I started thinking about tomorrow morning’s 10 am dental appointment. And lo and behold, my wonderful golden mood went away, to be replaced by something utterly mundane. Which will later be replaced by some other thing. That’s just the way it goes.

I think I’ve got a pretty good handle on coping with fibromyalgia-induced pain. My bipolar meds are fine-tuned enough that it’s usually under control, and I know all the warning signs and have my list of coping mechanisms ready. I do what I can to prevent migraines (wearing sunglasses, avoiding too much dark chocolate, avoiding other triggers), and have medications that usually work.

I like to think that I kind of have things “under control,” or at least well managed.

Recently I got hit with a new kind of pain. I’ve had occasional foot pain this fall, which got better when I switched shoes and insoles. On Thursday, though, I found that the occasional pang in my right foot was interfering with my ability to walk…causing me to limp…causing me to throw my body out of alignment…causing everything to hurt (an 8/10 on the “pain scale”)…causing my mood to just come crashing down. I worried about when it would end, how I would cope, and just wanted to scream. I tried doing mindfulness meditation. It helped a little bit with my mood, but I really became aware of just how much I hurt. My pain started feeling like a Jackson Pollock painting. (You know, the ones with all the paint drips everywhere?) It was a discordant symphony of pain – stabbing, burning, crawling, icy, hot, and on and on. I have a lot of experience with pain, but I had never felt anything quite like this.

There is something about unfamiliar pain that is much scarier than pain you know. There is all this emotion tied up with the pain. “When will it end? Is this something acute or chronic? How much will treatment cost? How will it affect my daily life? Am I going to be able to exercise? Am I about to go into a bout of a bipolar flare-up too? I don’t think I can take much more of this…” With fibromyalgia, it’s mostly, “Oh, this again. I know how to deal with you. If you get really bad, I’ll call my doctor.”

I woke up with pain yesterday morning, and managed to get an appointment with my physical therapist right away. She helped a lot, put tape on my knees, etc. I was pain-free all day (always a plus). Later in the evening, though, I found myself with stabbing pain in my foot when I was sitting at the computer. I quickly found the pain spreading throughout my body, and consequently spreading through my consciousness.

I ended up in bed, sobbing and having a panic attack. It was not a fun night. I’m worried about the potential cause, how long it will take to treat it, etc. I really enjoying walking as exercise, and I’m afraid my body will suffer from not being able to get out. I have to climb stairs to get to my bedroom and my office. My brain went on and on into worst case scenarios and pain, and everything started to spiral out of control.

I tried Tylenol, with no luck. I tried my usual dose of Tramadol (25 mg). I tried the higher prescribed dose of Tramadol (a total of 50 mg), and that eventually started to dull the pain. It also knocked me out, which meant I didn’t have to think about the pain for about eight hours. Sleep helped, too. This morning, I’m achy and the only real pain is in my foot.

I managed to get an appointment with a podiatrist my friend recommended. The appointment is in 13 days. I’m going to try not to catastrophize about what might happen, and try to be in the moment.

Here’s hoping for inner strength and compassion towards myself.

Early post (Tuesday instead of Wednesday) because I feel like sharing now instead of later.

Book recommendation time!

Yes, there is actually a book entitled Who Ordered This Truckload of Dung?. It’s by Ajahn Brahm, who is a Buddhist monk in the Thai Forest Tradition. (Ajahn Brahm was born in the United Kingdom, and now leads a monastery in Australia.) You don’t have to be a Buddhist to appreciate the book.

The book is composed of 108 stories, proverbs, experiences, and what have you. The title piece involves a story about someone who has a truckload of dung dumped on their front yard, and the choices it presents. Do they get angry, moan, wail, and do nothing about the pile of dung? Do they go through some of that and then move on? Do they go, “Well, dung makes great fertilizer for the garden…” (I won’t spoil it any further, as you really should check it out yourself.)

There’s also quite a good section on sickness, grief, and death. One story that I particularly liked was entitled, “Visiting the Sick.” Ajahn Brahm shares some useful advice:

“[The nun] explained that when all her other friends and relations came to visit her, they became so sad and miserable seeing her dying that it made her feel much worse. ‘It’s bad enough dying from cancer,’ she said, ‘that it’s too much to deal with my visitors’ emotional problems as well.’

She went on to say that I was the only friend who treated her as a person, not as someone dying; who didn’t get upset at seeing her gaunt and wasted, but instead told her jokes and made her laugh. So I told her jokes for the next hour, while she taught me how to help a friend with their death. I learned from her that when you visit someone in hospital, talk to the person and leave the doctors and nurses to talk to the sickness.”

I remember when I was dealing with some pretty serious depression. People would ask me how I was feeling, and I’d just want to scream. I was fighting nightly with thoughts of suicide, and someone wanted to know how my day went? I know that these feelings come from a good place. I just couldn’t hear that at the time.

I would add to Ajahn Brahm’s story slightly. My folks have been incredibly supportive, both emotionally and in terms of dealing with the myriad of phone calls to doctors, insurance companies, pharmacies, and all the other rigamorole that comes from being ill. If someone asks you – and they’ll probably be close enough to you that you know who you are – being an advocate/ally for a sick person is an incredibly valuable thing. Someone to research treatment options, ask your doctor about them, that sort of thing. (Caveat: Do this only if asked. Unsolicited advice probably falls in the “not helpful” category.)

Periodically, I go through phases of wondering what life would be like if I didn’t have a mental illness, if I didn’t have fibromyalgia, if I fit into some preconceived box of “normal” and “able.” These trains of thought are usually exercises in futility. There is no good answer. At best, thinking this way leads my mind in fruitless circles. At worst, these thoughts torture me with images of what “might have been.”

I am a big fan of speculative fiction (also known as sci-fi/fantasy), which is essentially the genre of “all that might be.” It’s entertaining, creative, and often has a useful perspective on “real life” that might be hard to write about in other genres. One of my favorite authors is Terry Pratchett (although he’s recently been knighted for services to literature, so I guess I should call him “Sir Terry Pratchett”). His books are usually set in “Discworld,” but he recently wrote one set in something very much like the South Pacific. (He is emphatic that it is not the South Pacific, though – perhaps more like an alternate universe version of it.)

The book is called Nation. One of the main characters is a boy named Mau, who was canoeing back from an initiation on the Boys’ Island when a tidal wave sweeps through the entire region. When he returns home, he finds his entire home altered. His family and community have been killed by the tidal wave, and the only other living person on the island is a “ghost girl” (read: white girl) who was shipwrecked on the island. Gradually, other survivors begin to trickle into the island. I don’t want to spoil it too much, but Mau does a lot of growing up. There’s a really excellent section of the book that addresses some of my own questions regarding what would have happened if I hadn’t gotten a disability. In Mau’s case, someone asks Mau if he would rather go back to the way things were before the tidal wave.

“How can I answer you? There is no language. There was a boy called Mau. I see him in my memory, so proud of himself because he was going to be a man. He cried for his family and turned the tears into rage. And if he could, he would say, ‘Did not happen!’ and the wave would roll backward and never have been. But there is another boy, and he is called Mau, too, and his head is on fire with new things. What does he say? He was born in the wave, and he knows the world is round, and he met a ghost girl who is sorry she shot at him. He also called himself the little blue hermit crab, scuttling about the sand in search of a new shell, but now he looks at the sky and knows that no shell will ever be big enough, ever. Will you ask him not to be? Any answer will be the wrong one. All I can be is who I am. But sometimes I hear the boy inside crying for his family.”

If I hadn’t been diagnosed with any disabilities, I would probably have graduated “on time,” have gone to graduate school already, have some sort of career. And yeah, having a disability sucks sometimes. Pain, fatigue, times when I’ve been so down I thought I could never get up again. But those are the kinds of experiences that make you grow. In my general experience, life lessons can be excruciating when you’re learning them – and amazing once you begin to learn from them. I feel more empowered to take my own path in my life, not following the dictates of what other people expect.

And there are times when another tidal wave comes, and knocks you off that course, and destroys things that you hold dear. Those things are unavoidable. If it had not been a disability, something else would have happened to shake my world and my preconceptions apart. And I know that there will be more tidal waves, because that’s part of life.

I am who I am because of the events of my life: the way they have shaped me and the way I shape them. I cannot take them back without taking back parts of myself – and I like myself.

So perhaps asking “what if’s” is the wrong type of question. Though I think that the asking provides an opportunity for compassion to myself. A time to grieve for what I have lost, and to be thankful for what I’ve gained.

I had my first “topic request” for a post. (Please pass on more requests in the comments section, or as an @ request on the Twitter feed.) A friend asked me to write more about my reaction to pain mentioned in the previous post. She described my reaction of “Oh, I’m in pain…it will pass” as being potentially very alien to people.

I’ve drawn a lot of inspiration and methodology from mindfulness meditation, so a lot of what I’m about to say is my interpretation of wise things I’ve been told. I learned a lot of this from Insight Meditation Community of Washington (IMCW) meditations I’ve attended. One of the people who leads discussion after the meditation is Jonathan Foust. He actually has a 30 minute (or so) podcast about “Working with Pain” on his website. If you’ve got the time, it’s a wonderful talk. There’s also a guided meditation mp3 on the same page.

I could talk about a lot of pain theory and techniques, but instead I think I’ll describe one of my first IMCW meditation experiences. This was the experience that made me really “get” mindfulness meditation, and totally convinced me how wonderful it is. It was also a – pardon the pun – insightful experience. Read the rest of this entry »

I read an article, “Is it All in My Head?”, from Psychology Today recently, and I really feel like it has a lot of good content about the role of the mind-body connection in chronic pain syndromes.

“Capping her frustration, Howard cannot be sure to this day why she became ill. But her best guess is that the self-imposed stress of her ambitious lifestyle played a role….Howard’s suspicions are confirmed by many researchers, who are coming to believe that psychological factors play a crucial role in perpetuating many physical illnesses, particularly a subset of chronic ailments that defy logic, diagnosis or a cure. It seems that the way you think about your illness can actually affect how sick you get.

These “multi-symptom illnesses”—which include chronic fatigue syndrome, fibromyalgia and potentially others such as Gulf War syndrome, irritable bowel syndrome and the condition known as multiple chemical sensitivity—have provoked intense controversy. Because they have no obvious biological cause, some doctors and researchers dismissed them in the past as hysteria or the “yuppie flu.”

Many patients, in response, became equally determined to prove that their disease was just as real and as biologically legitimate as heart disease or breast cancer….

However, the war between doubters and advocates has waned. The consensus is that these illnesses are truly mind-body diseases, in which biological and psychological causes and dysfunctions are inseparably intertwined. The mind seems to play a key role in kick-starting and perpetuating illness—but it’s not that sufferers are simply malingerers. Their bodies are sick, and their reaction to the illness often makes it worse.” [emphasis mine]

I definitely would have had a hard time hearing this when I was first diagnosed. I was in the “camp” trying so hard to justify my pain to people who didn’t seem to understand. Heck, I even had a “Fibromyalgia is Real” awareness bracelet.

That mindset didn’t help me get better. I just stayed trapped in what Buddhists would call dukkha, or suffering.

Allowing myself to feel pain – but not dwell in pain – is probably the single most important lesson I have learned from my experiences with fibromyalgia, if not my life. Read the rest of this entry »

My Etsy Store

A fibro-friendly item from my Etsy store

I've been working on making fibro-friendly jewelry. I'd love it if you checked them out by clicking the image above, or going to www.etsy.com/people/RogueCrafter

About Me

This blog is intended as a place for me to reflect on my own healing journey, in the hopes that others may also gain insight from my experiences. I've "borrowed" a line from Robert Frost's poem, The Road Not Taken:

'Two roads diverged in a wood, and I
I took the one less traveled by,
And that has made all the difference.'

I think the most important thing for me now is that I feel empowered to be a force for positive change in my life. And that, my friends, has made all the difference.

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