today's experiencing of living with fibromyalgia

Today, I realized that I hate when people ask me something like, "what's wrong?" as in I know you are in pain but I don't understand why you feel so bad. Earlier today, the question I thought was, "How do you answer when someone asks you what's wrong" when what is wrong is a result of your fibromyalgia? I've tried, "well, you know, I have fibromyalgia" and the one word reply "pain," but those answers don't seem to be what they seek. Later, I realized that I don't too much care to come up with a satisfactory answer because they know I have fibromyalgia and they know I'm in pain when they ask. What do you want me to say? Is the question really just an acknowledgement that you know I'm having a bad day? Probably not for those that keep their eyes on me waiting for an understandable answer. Oh. It just occurred to me that maybe I should name everything that hurts when they ask; will that deter future occurrences of that conversation? This morning, it could have gone:
Staff: Look, there's that Amy coming in to work over 1 hour late and look! She's using a cane. Does she really need that cane?
Me: Good Morning. Click, step, step. Click, step, step. Click-- darn, it's hard to open doors when using a cane.
Staff: I hear you don't feel good. What's wrong?
Me: Snarling- My thighs, calves, back, and biceps hurt. I'm a level 10 on a scale of 1-10 but only because 10 is where the scale ends. It's really much worse. How are you?

That mock answer doesn't even seem to begin to express what today was like for me. And did you notice that I had my cane? It was its first public appearance. It was more embarrassing that humbling; I'll still have to work on "humility". I noticed that I looked down a lot as I walked and suspect that was because of embarrassment and not wanting to see others looking at me or wondering why, not because looking down when walking makes the process easier. Although I love when cars stop so I can cross under normal circumstances, I don't like it with the cane. I move much slower and feel the need to rush. Imagine crazy (young) granny flying across the street, stick in hand. But, those people were kind. I fully acknowledge that. I'd prefer to be invisible and left alone when having a day such as today. Except Susan can see me. She's angel-like. She doesn't give me those looks; she knows.

I went to work because one of my 3 people that have to move in 30 days or less, against their will, had an appointment with Town and Country property management this morning. My plan was to transport him, be back in my office by noon, then go to the doctor. Damn, people always catch me. So, I left for Physcian Quality Care at 1:45 pm and ended up missing my 4pm dental appointment (rescheduled for tomorrow). My hope was PQC 1-3:30, dentist at 4. PQC rocked! They offer you beverages, laptops, movies, and cable TV in the exam rooms. But, it took me over 2 hours to check in and be seen. But then the doc gave me muscle relaxers (thank God! It's been a tough few weeks) and loratab. My pain went from more than a 10 to a 9 today so the level of pain did diminish significantly. But who wants to spend a day at a 9?

I'm satisfied with my actions today. I pushed, pushed, pushed to get in the office for someone else because I told him I'd be there. I sought medical care because it was time. I'm headed to bed because rest is what I've really wanted most of the day. I realize that being out of it today jeopardizes so much of my plans for the rest of the week. I must remember that when things go undone, it is because of good reason. Ciao.

P.S.- I tried that thing where I breath in the pain and suffering of others and breathed out something good. I suck at that.

getting over your shit (4-6)

Chapter 4: The Universal Law of Impermanence

The chapter opens with a beautiful quote from The Buddha:
"Better a single day of life seeing the reality of arising and passing away than a hundred years of existence remaining blind to it."

Toni Bernhard has a practice she calls "Weather Practice" Basically, it acknowledges that thoughts come and thoughts go, just like the weather. You might feel that a certain type of day (or weather) is probable and maybe that's what you get. But storms, they head our way but a wind can cause it to totally miss or hit our city. She talks about not being able to force your mind to think a certain thought and that trying to not think about something is a guaranteed way to think about it. That all sounds logical to me, but where do mantras fit into that thought? Mine lately has been, "I am safe in my house and my mind is at peace." That intentional thought is how I am learning to think about the snake that was outside of my house less and how I am convincing myself to stop searching for it everywhere, inside and outside.

Next, she talks about "Broken Glass Practice". This one, I like. Your glass breaks; you're pissed. Why be pissed? It's glass. It's breaking is inevitable. It was broken from the very beginning, that's just not the form in which you were seeing it. ["Can you prevent something that's breakable from breaking? It will break sooner or later. If you don't break it, someone else will. If someone else doesn't break it, one of the chickens will!" ~ Ajahn Chah as quoted in How to be Sick] Water is ice, ice is water. It's always both. It just appears differently and is in one form or the other when you see it.

I miss my Superman mug. I love that mug. But it was already broken; that was its essence. The man came to the clinic. He was peeved because his daughters spilled tea in his van. But the tea was already spilled; he accepts that.


Chapter 5: Who Is Sick?

"Munindra-ji said, "There is heat here, but I am not hot. There is hunger here, but I am not hungry. There is irritation here, but I am not irritated." Bernhard translate that, "There is sickness here, but I am not sick." That is sometimes a difficult thing to realize-- I am not sickness. I am not fibromyalgia. I am not she who is too tired to do anything that requires substantial energy output. I am weather practice. I guess a life-long question, healthy or not, is "who am I?" How often do you hear or read that question? This is another way of asking that question-- I am not sick, so who am I?

Chapter 6: Finding Joy in this Life You can no Longer Lead
The title of this chapter brings on a spontaneous, "Yes, and I f_cking hate it!" from my insides. Hating, not the finding joy, but the parts of life I can no longer lead. I miss revealing in the idea of hiking and just waiting on the opportunity. I miss so many pieces of my former life....

This chapter talks about the 4 sublime states (brahma viharas). These are the places where we wants our minds to dwell, the place of the enlightened. They are, and I can do nothing but directly quote here:
Metta- loving-kindness (others & self)
Karuna- compassion (others & self)
Mudita- sympathetic joy; joy in the joy of others
Upekkha- equanimity; a mind that is at peace in all circumstances

Mudita is her rock. It's like empathy for positive things, instead of negatives. It's like me looking through a facebook album recently posted by my friend Andrea and smiling ear to ear, having fun by looking at the pictures she took at the carnival. It's like being joyous that she can take hikes through beautiful, hilly areas. It's to feel that joy but not becoming angry or sad because you realize that you are simply watching someone else's life. Mudita happens in my life naturally, as shown by the example that immediately came to mind. Putting it into intentional practice, I'm sure, is much more challenging. "Mundita is a powerful antidote to the poison of envy." What a beautiful quote from Toni's mouth.

The other sublime states are picked up in chapter 7....

How this teaches me Buddhism? I get to learn the sublime states but more importantly, I'm challenged to practice them. I tried using metta or karuna when I was in massive pain last week but I failed miserably. More on that later. I think that Buddhism is much about mindfulness, as are the techniques discussed in these three chapters. The teachings pull one from oneself and instructs one to refocus on the rest of the world. That sure ain't man's instinct. Blessed be.

beginning (reviewing) How to be Sick (the book, not my self-pity)

Several months ago, I decided to read How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers after reading a clever and witty bit by its author, Toni Bernhard. I thought she would be my Buddhist Anne Lamott, using amusement and real life/real language to tell it how it is. For her. A chronically ill person living with chronic fatigue syndrome. Early in the novel, I was disappointed to see that the reality was far from that. I thought a better title would have been How to be Buddhist, but I stuck with it to see what I can learn from this serious, mostly non-humorous non-fiction work. I was still disappointed that the book was framed only from that of Buddhism. There is no "how I learned to deal with my illness," only "what Buddhist practices I use to survive this life". Sure, there is overlap between the two but.... This book is geared towards those interested in Buddhism, not so much those open to hearing what a Buddhist woman has to say (unless they're open to hearing her teach them specially about Buddhism).

Anyhow, over the next several weeks, I will share the information from the book here because reviewing it and organizing it as such will help me mentally categorize it, encourage the use of some techniques, and allow me to discard ones I don't want to invest energy into. It will also teach you my interpretation of her interpretation of Buddhism.

If you are interested in learning more about Buddism, this book would be an interesting beginner's choice. Obviously, she veils the intro behind the theme of helping one learn to deal with a life that sucks ("life is always all right") but it helped me understand major Buddhist themes, unlike talking to interested-in-Buddhism-people or reading that "Buddhism" book I have started reading every other year for the past decade.

Chapter 1: Her story of becoming sick. She remembers her beginning, whereas I only remember realizing I might be sick-- I wonder for how long. I still ponder where the illness really began.

Chapter 2 is called "Staying Sick: This Can't be Happening to Me." I'll let you guess what that chapter is about. I might be finally settling into this disbelief something like 3 years after I realized I was sick. Well, I'm not quite settling yet....

Chapter 3 makes me familiar with the term "dukkha". She says that people often translate that to "life is suffering" but that the simplicity of that statement takes away from the depth of the Buddhist word. Why so shallow? Because life is not only suffering; dukkha simply acknowledges that suffering will be part of our lives. In this chapter is a quote that I like:

"We all know each other. We've all had our hearts broken by the relentless search to avoid suffering."
~ John Travis at a Spirit Rock retreat

Toni notes that this search brings more suffering.
Dukkha is the first noble truth. (Bold like a vocabulary word, mind ya. I made "dukkha" bold after bolding "noble truth")
Throughout the book, Bernhard quotes Zen Buddhist teacher Charlotte Joko Beck: "Our life is always all right." Conceptually, I understand why that might encourage her. Intuitively, I find it saddening. The quote continues, "There's nothing wrong with it. Even if we have horrendous problems, it's just our life." I suppose that half might be a tiny bit better than the first, the idea of it truly being "all right". What an odd thing to trouble me, I know. It's also something that often comes to me while living.

In Chapter 3, Bernhard prepares you for what the rest of her book aims to teach one to do: end mental suffering. Well, she shares methods to temporarily relieve, rather than to end it in its entirely.

I love this: The second noble truth says that the reason for dukkha (mental suffering) is the truth of tanha: thirst
I love it because it's also here: James 4: 1-3:
¹ What causes fights and quarrels among you? Don’t they come from your desires that battle within you? ² You desire but do not have, so you kill. You covet but you cannot get what you want, so you quarrel and fight. You do not have because you do not ask God. ³ When you ask, you do not receive, because you ask with wrong motives, that you may spend what you get on your pleasures.
James is one of my favorite books in the Bible.
The third noble truth shares that the end of dukkha is possible (what?!). In the fourth noble truth, the Buddha teaches how to accomplish this (the Eightfold Path). Enlightenment comes once dukkha ends. That's deep, cause one would have to be pretty freakin' enlightened to end dukkha imo.

wise speech in blog?

This week and next, I commit to reading How to be Sick: A Buddhist Inspired Guide for the Chronically Ill and their Caregivers. Chapter 16 is focusing on wise speech. The Buddah's teaching on wise speech is often summed as, "Speak only when what you have to say is true, kind, and helpful." What if one compares a blog, or this blog specifically, to wise speech? What I say is either true or my subjective truth on it. What I say is not always kind; often, it is not unkind or it is unkind but purposeful. Helpful? That makes me laugh. What jumps out is wise speech is not whining or venting and I often use this blog to vent. I generally write this blog as if no one is reading and frankly, not many folks are. My agreement for this blog has always been to write for me. When I was a child, I had Lisa Frank (diaries), then beautiful paper journals, now this. The agreement to self and the test for wise speech do not mesh well. Could it be because wise speech is very much an external thing-- which things do I let past my filters into the public spear-- while "dear diary" is an internal thing, something historically thought of as not to be shared with others? Ummmm. I have no conclusion, only an observation. Ragan's blog is true, not kind but purposeful, and helpful. Citizen's K's blog is more like stuff than words-- physical stuff is true in that it is there, it is kind as love radiates from her works, and really (mostly), the stuff is helpful to those gifted with it or those that choose said purchase. Maria whom I love's blog is true, it's not un-kind, and often it is helpful. When telling about one's life, I think the challenge to be helpful is tough--- unless it is considered helpful to pin words to a virtual page so that others who care can see what is going on with you. I suppose in that respect, Maria's blog is always helpful and mine too. lol. Again, I laugh when applied to self. Truth is not always kind. What an interesting pairing to put in this summation of wise speech. It also talks about proper timing-- perhaps there is kindness in that.