Camping and fibromyalgia (part 2): Afterthoughts

Going to sleep with a view of pine trees and innumerable stars, waking to bird calls and dew: these are the things that make camping worthwhile. Some parts of my strategy for camping with fibromyalgia worked very well; others need improvement. Here’s a run-down of the results.

• Getting there: the drive to the campground was okay. We stretched several times and stopped for lunch. The drive back was harder. The total trip was 355 miles, as we spent a fair bit of time driving around the area checking out different beaches and looking for restaurants. We were in a hurry on the way back, and didn’t stop as often as we probably should have. This was beginning to trigger a pain flare, but I managed to nip it in the bud.
• Having a co-camper ally to help manage the gear worked like a charm. (Thanks, camping buddy!) We’d both practiced setting the tent up recently, so that went off without a hitch.
• Sleeping arrangements: my camping mat and other gear kept me warm, dry, and comfy. I do have some ideas for making sleep even better. I may want to try using an air mattress in the future, as a friend tipped me off that it’s even more comfortable than a thick camping mat. It may be more bulky to move around, though. It’s something to try. Another consideration is that I did two trial runs in the backyard this week, for a total of three nights sleeping on a mat on the ground. The extra runs made me a little extra sore. The trial runs won’t be necessary next time, fortunately.
• Morning stiffness – I did some stretching, and that seemed to take care of most of it.
• Other issues: We should have done more research on where to eat. We planned to eat out and not worry about cooking at the campsite. A number of restaurants were closed as it’s the off-season at the beach. It seemed like the only restaurants we could find had fried food or $30-a-plate dinners. We also looked for restaurants when we were already hungry – a sure way to get cranky and desperate.

Overall, it was a good trip. I did have to take steps to prevent a pain flare when we got back: medication, hot shower, lots of stretching. In the future, I may want to try using an air mattress, planning restaurants in advance, and taking my own advice about spacing out time in the car.

Coping mechanisms

People always talk about finding positive coping mechanisms, and I always find they’re hardest to remember when you’re not feeling well. It’s helpful to have some sort of plan, as discussed in one of Health Skills’ blog entries on coping strategies.

Perhaps you could say this post is more for my own reference, but here are a few “healthy” coping mechnanisms that I try to keep in my knapsack:

• Going for a walk
• Go swimming
• Creating something – a physical craft, a work of writing, a batch of vegan cookies…you name it
• Petting my dog. He can always use more belly rubs.
• Sitting in the garden or some other place outside
• Light gardening
• Reading one of my “comfort books” (Pride and Prejudice springs to mind)
• Meditating
• Stretching/doing yoga
• Making a point of eating breakfast and other healthy foods
• Buying a bouquet of cut flowers, especially if it’s winter and there are none in the garden
• Planning potential vacations for when I feel better (even if I never actually go, the thought of going to the Caribbean always perks up my mood)
• Bird-watching
• Listening to music or a stand-up comedy tape
• Lighting a candle
• Talking to friends and others in my support system

Recently life was difficult because life circumstances made it very difficult to utilize a lot of my coping mechanisms. (It’s hard to go for a walk when your foot hurts if you put any weight on it.) That’s when it’s hardest to use those healthy skills, rather than fall back on things like eating lots and lots of chocolate. It’s still a work in progress for me. I’m hoping having a record of this will help with future flare-ups.

Always with me: Lessons from songs

I recently re-watched Hayao Miyazaki’s Spirited Away, a Japanese animation (anime) film about a girl who is transported to a world of spirits. A sorceress tries to steal her name, she helps a river god, and undertakes a journey to help a friend. Not to mention saving her parents from their own stupidity. It’s a “heroic journey,” a la Joseph Campbell. It’s a really great film – beautifully animated, great score…I could go on and on.

The real point of this is that the closing credits have a wonderful song, which definitely made me cry the last time I watched it. The English translation is:

Somewhere, a voice calls, in the depths of my heart
May I always be dreaming, the dreams that move my heart

So many tears of sadness, uncountable through and through
I know on the other side of them I’ll find you

Everytime we fall down to the ground we look up to the blue sky above
We wake to it’s blueness, as for the first time

Though the road is long and lonely and the end far away, out of sight
I can with these two arms embrace the light

As I bid farewell my heart stops, in tenderness I feel
My silent empty body begins to listen to what is real

The wonder of living, the wonder of dying
The wind, town, and flowers, we all dance one unity

Somewhere a voice calls in the depths of my heart
keep dreaming your dreams, don’t ever let them part

Why speak of all your sadness or of life’s painful woes
Instead let the same lips sing a gentle song for you

The whispering voice, we never want to forget,
in each passing memory always there to guide you

When a mirror has been broken, shattered pieces scattered on the ground
Glimpses of new life, reflected all around

Window of beginning, stillness, new light of the dawn
Let my silent, empty body be filled and reborn

No need to search outside, nor sail across the sea
Cause here shining inside me, it’s right here inside me

I’ve found a brightness, it’s always with me

I’m guessing you can probably tell why someone on a healing journey might tear up at that song. I thought you might enjoy it, too.

Here’s a youtube video of the closing credits, complete with a decent audio version. To truly appreciate it, you really need to see the film yourself.

Sunshine, gardens, and coping

I spent some time outside in the 74 degree weather Thursday (that’s roughly 23 celcius). It’s amazing. The birds are out calling to each other, some chickadees are inspecting our bird house, we’re cleaning up the garden after the big snowstorms.

It’s amazing how much the weather affects my mood. It’s just so wonderful to be outside.

I got my hands in the dirt today, as I worked a bit to clear some space for a new vegetable garden. Mostly I was putting old leaves in brown paper bags, and then spreading a bit of compost. I’m trying to work within my body’s limits, but also stretch those boundaries a little bit. I have a feeling my arms may be feeling it tomorrow, even though I did some stretching. It’s a constant quest for balance.

It’s so nice to have something to focus on. It helps my mood – it gives me a purpose and something to work towards. Knowing that there may be a tasty payoff is an extra incentive. Planning the garden is fun, too (although it can be a little overwhelming). What I’m really looking forward to is when I can go, “Hmm, what shall we have for dinner?” and then saunter outside to grab some tomatoes and basil and maybe even some garlic and whip up a quick pasta dish. Mmm…

I suppose you could say that the garden has the potential to be a giant coping mechanism. I know it is for a lot of people. It lets me use my body, I get connected to the earth (both through cultivating it and through getting it all over my hands), it may reduce the number of trips I have to make to the grocery store, I get healthier food…not to mention being good for the environment. All in all, a win-win situation.

Unfamiliar pain, fear and pain spirals

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.

Reactions to a snow-induced pain flare

We had the mother of all snowstorms this weekend, with 29″ dumped on every surface. It’s beautiful, and it also presents many practical challenges. (These include power outages, being housebound, snow-weighted trees, and making a space for the terrier to go outside and use the bathroom.)

Saturday night I was keeping my friend company while she started clearing off one of our cars. The power was out all around the neighborhood. The storm clouds had passed. The sky was a deep purple, reflecting the light of the snow and city lights in the distance. All of our street lights were out, giving a much better view of constellations punctuated by the occasional whispy cirrus clouds. Partway through shoveling, the power came back on. Some of the constellations disappeared, but my disappointment was tempered by the promise of having heat for the night.

That was the wonder of the snowstorm.

We also probably lost at least two trees, which succumbed to the weight of the snow and ended up almost touching the ground. I spent a good bit of the day of the storm wading through the ever-accumulating snow (it ended up reaching almost to my hips) and shaking trees off to prevent further tree death. My friends did a lot of the work, but just “walking” through the snow proved difficult.

Then came my body’s reaction to the experience.

I won’t bore you with an entire catalog of the pain. Suffice it to say that every joint in my legs was sore and burning. Other parts of my body would periodically pipe up, as though saying, “Me too! Pay attention to me too! I hurt too!”

I knew what would help: very light exercise (stretching or walking), meditation, medication, a hot shower, taking it easy by staying out of the snow…

Knowing is easier than doing. It was as though the pain had taken over my brain, and all I could focus on was how much I hurt. Add to it the increasing dismay at being housebound AND in pain, and I was not a happy camper.

I recruited my friends to help me out. Sometimes I just need encouragement to take steps in the right direction. I unhesitatingly took my pain medication, and got to verbally express some of the pain I was feeling. My friend helped me pick out some nice shampoo, and I took full advantage of my shower chair and hot water. I just let it wash over me.

Then I took my big step. I decided I would get situated for a meditation. I got out my mp3 player (which has several guided meditations on it). I decided I would see how meditation went – I wouldn’t force myself to do it for a certain period of time. I just let my meditation be what it was – a way to get in touch with what was going on in my body.

It was painful, at first. But because I have some experience with doing mindfulness meditation while I’m in pain, it was not unexpected.

There was this remarkable feeling of openness that happened during my meditation. I realized how much of my body actually feels pretty good.

This next part may sound crazy, but bear with me. (Having a familiarity with the Buddhist idea of equanimity might help.) I realized that when I found a part of my body that was not in pain, I thought, “Oh good, it feels great!” When I found a part of my body that was in pain, I thought, “Drat, that hurts. Maybe if I focus on it, it’ll stop hurting.”

Then I tried something different – letting go of the idea that pain is good or bad. However terrible the experience of pain is, it is a million times worse if I dedicate my conscious mind to thinking about how terrible it is. I also have a tendency to dedicating my conscious mind to how I want to feel good all the time when I’m enjoying myself. If I do that, I’m not actually enjoying myself anymore – I’m just dwelling in the desire to feel good more often.

So I just let go. I allowed myself to be in pain without judgement. The pain was still there. It still hurt. But it wasn’t in control of my consciousness anymore.

Now I can just be.