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I’ve been keeping a fairly comprehensive log of pain, sleep, exercise, food, weather, and general health. I’m still collecting data, and figuring out the best ways to analyze it. (How do I isolate variables when there are so many? I guess I should collect a lot of data points.)

There was one correlation that lept off the screen, and I thought I’d share it here in visual form. The two lines are “sleep quality” and “morning pain level,” both ranked on a 1-10 scale. In this case, one is the best possible scenario. Ten is really, really terrible.

See if you notice a pattern.

The part towards the right where it appears that there is only one line is actually the two lines overlapping.

I recently realized that I dread going to sleep. It’s not a nice, relaxing, mmm-this-is-going-to-be-good experience. I basically feel as though I go to bed, am unconscious (hopefully) for a number of hours, have the occasional bizarre dream, and wake up just as exhausted as when I first went to bed. I do not feel rested.

Apparently this is not normal, even though I’m so used to it at this point that I forget some people actually enjoy sleeping. Long story short, I’m going to see my doctor about sleep quality. Poor sleep is associated with fibromyalgia. I’m just hoping that something can be done about it.

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?

You hear references sometimes, many conjuring up images of toothless old geezers sitting on their rocking chairs, complaining about how they can tell a storms a-comin’. They can feel it in their bones.

Much has been written about possible connections between pain and weather – just do a quick google search on “pain and weather” – and there isn’t much agreement. There is some suggestion that barometric pressure, or particularly rapid changes in weather, are a strong indicator for increased pain. Still, it varies from patient to patient.

I haven’t researched this extensively lately – my main sources at this point are a 1995 N.Y. Times article and a Weather Channel article on Aches & Pains 101. Admittedly not the most reliable or exhaustive study. I would search more, except I’m recovering from a migraine that means that looking at the computer screen for too long makes me slightly queasy. Scratch that – I feel slightly queasy anyway. Of course, reading a mystery novel set in the practically tempest-filled Dartmoor, England probably didn’t help. (The book is quite good, though.)

I just started a new pain journal – more on that in another post – and have been tracking weather patterns, as well as things such as exercise, sleep, food, and of course pain.

What does today’s flare-up indicate? Inconclusive at this point.

The most I can point to is that it was an unfortunate conflation of triggers. I didn’t sleep until 3 am, and got up at noon. Spending so much time in bed hurt, and I forgot part of my previous night’s medication. It was bright and windy outside, and I had chocolate (a known migraine trigger). True, the barometric pressure changed rapidly – dropping from 29.96 inches Friday to 29.69 Saturday, then increasing today to the 30.11 range. (I use averages for simplicity.)

Is it the pressure? The chocolate? The sleep patterns? Or some nebulous interaction?

One data point amidst four days of symptom tracking doth not a pattern make. It does strengthen my commitment to keeping a pain log, to see what I might find.

This was just too humorous for me not to post. I came across a great scientific study while reading one of Flourish with Fibro‘s blog entries.

According to a study published in the journal Neuroreport:

Swearing increased pain tolerance, increased heart rate and decreased perceived pain compared with not swearing…. The observed pain-lessening (hypoalgesic) effect may occur because swearing induces a fight-or-flight response and nullifies the link between fear of pain and pain perception.

What I want to know is whether that means swearing counts as aerobic exercise, too. (After all, you’re raising your heart rate, right?) I need something new to do in my current, unable-to-walk-properly state.

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.

My body is all kerfuffled at the moment.

I have a Morton’s Neuroma on my right foot, which basically means that the tissue around one of my nerves there has thickened. As you can imagine, this is fairly painful. I started having a really bad pain flare – triggered by the foot pain, but spreading throughout my body. Add to that some depression due to all the pain…

I managed to see a podiatrist, and he started giving me diluted alcohol injections to break down some of the tissue. Or something. Don’t ask me exactly how it works. This has improved my mood greatly in some respects, as I’m not in as much pain. However, my foot just feels weird sometimes. Like there’s this ball of tissue that I can’t feel, so I don’t quite know where to put my weight. I’m hoping it’s not permanent or anything. The thought that it might be is slightly worrying. I need to call the podiatrist, I suppose.

Anyway, I’ve still been having a continuous pain flare of sorts. It varies in intensity. Not enough exercise, too much exercise, being thrown off balance because of my foot…it’s hard to get my body centered again once it’s gone into a really bad flare. I consoled myself yesterday by buying three new books, and I have a pile of books I want to reread. Currently, I’m alternating between speculative fiction and books on postmodernism. My dog is also an excellent console-r and nurse, as he likes to snuggle. Family and friends are being very supportive.

All in all, it could be worse. However, it is one of those things that’s just very frustrating. I was doing so well. I know this state of affairs is only temporary…

This could be seen as a roundabout way of saying that, while I’ll try to stick to schedule, updates may be slightly sporadic. When I’m in a lot of pain or I’m doped up on painkillers, it’s hard to write a coherent post. I have a few posts saved as drafts for occasions such as this one.

Drugs and medication have an interesting way of interfering with my mindfulness practice.

I spent much of Tuesday and Wednesday drugged on Tramadol, which I’d taken to deal with the pain/fear spiral that was going on this weekend. The Tramadol made me groggy, sleepy, and ill-coordinated. My brain felt like someone had shoved cotton balls into it, and I couldn’t get to all the important bits.

I suppose the Tramadol did its job in other respects: I wasn’t in as much pain, I could walk (or hobble) when needed, and I wasn’t having panic attacks from fear about how long the pain would last. The pain was not out of control.

I decided to try some mindfulness meditation to cope with my relationship to the pain.

When I started doing some breathing and focusing inwards, I really felt as though my brain was on some bad carnival ride. When I closed my eyes, I saw a pink trapezoid that kept moving and rolling as though it was in a fun house. There were pink elephants and other objects that kept shifting in and out of view.

When I tried to focus on my body instead of on the happy-fun-trip going on inside my mind, it was like wading upriver through sludge. I could kind of feel myself through a dim haze, but it was a lot of effort. The pink elephant kept calling me back.

Eventually, I fell asleep.

I suppose the mindfulness didn’t work in the way I intended or expected, but it did give me insight into the workings of my brain when I’m taking “heavy duty” painkillers. (Tramadol is a “mild narcotic.”) It feels like the medication is closing a door on the parts of my mind which might experience pain. Clobbering them over the head and sticking them in a closet, if you will. Then it distracts the rest of my mind with smoke and mirrors.

This doesn’t usually happen – as much – when I take Tramadol. I think it was because I took a larger dose than usual. However, the feeling of “wading upriver” when trying to practice mindfulness while on Tramadol has happened before.

Fortunately for me,  I managed to see a podiatrist yesterday. I’m narcotic-free today, and I feel like I have my mind back.

Note: This is another early post (Thursday instead of Friday), because it again relates to how I’m doing right now. We’ll see what the weekend holds, and if I do a “weekend extra” or not. It probably depends on how much pain I’m in, or what medication I’m on.

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.

Today is my birthday. I feel as though I should write something birthday related on my birthday, but really wasn’t sure what. I thought about writing about age-ism, or about reflections on my life thus far.

Really, though, this birthday has made me think a lot about my 21st birthday. It was my first birthday party after being diagnosed with fibromyalgia, and I was (am?) still adjusting to life with the “disability” label. I’d just applied for Supplemental Security Income. It was difficult for me to socialize much, as a lot of my friends were in other states or simply outside the distance I could comfortably drive.

It was so amazing to have a night with friends, to really feel surrounded and supported and loved. We went to a drag show at a local bar. It was exciting to be able to get into a 21-and-older establishment, and to order an obligatory alcoholic beverage. I had fun tipping all the drag queens, and they singled me out for having a birthday.

I know that people usually don’t like the whole have-everyone-at-the-restaurant-sing-a-song thing, but I really enjoyed it that night. Basically, a drag queen pie-d me in the face with a whipped cream pie while my friends laughed and took pictures. That probably sounds horrible and humiliating, but I actually felt…normal. Like a human being, instead of some fragile, trembling creature who was afraid to venture out of the house for fear of pain.

I was a bit worried about having a pain flare from the chairs in the restaurant. They were plastic patio chairs, and not ergonomically designed at all. I sat in them for four hours or so, and didn’t get up to stretch. My doctor would not have been pleased.

Imagine my surprise when I got home and found out that I wasn’t in pain. Anywhere. I usually have some sort of “background noise” of pain that never really goes away, even on my better days. My shoulders ache, or my hands are swollen. Something like that. For my 21st birthday, my body decided to give me some time without pain. It was incredible.

I decided I would use my new energy and pain-free body to do something “productive.” I went to sort and clean and organize, and soon found my body brought back to earth and pain. I learned an important lesson. If your body is feeling good, savor it. Experience that moment. Cleaning can always wait until another day.

If I ever needed a reminder that the mind-body connection is a real and vital part of life, I’ve gotten it recently. There have been a lot of new changes and new beginnings (no need to go into it here).

The thing with change – it’s hard, it’s difficult, and it’s absolutely essential to growth and development. (Just google “death and rebirth” if you want more examples.) That’s really a topic for another post, which will come at some point. But back to mind-body connection.

I went through a whole wealth of emotions recently – fear, anger, compassion, elation, frustration, and so on. I ended on a high note, and was really feeling proud of what I’ve accomplished.

As for my body – there was a delay of about 2-3 days, and then it started processing all that change physically. I’ve been dealing with a fibro flare – pain, fatigue, and fibro fog. This morning my stomach started acting up at about 6 am.

The thing is – it’s not a bad thing that my body is going through all these changes so rapidly. It’s only natural that with so much change going on, my body needs to process it too. When I go through emotional changes, I expect to cry. Why shouldn’t my body cry, too?

I know it’s going to get better. I just have to be with it for awhile, and let the changes happen. I don’t think burning up is a particularly pleasant experience for a metaphorical pheonix. But being reborn – that must be something.

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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