I can already tell this post is going to be scattered. If I could label it “miscellaneous,” I would probably do so, only–miscellaneous things are supposed to come at the end and I feel like the topics I want to cover today should go here, rather than there.
Again, I’m going to result to bold (emboldened?) headings. Proceed with caution.
I did promise not to dwell too much on religious or spiritual subjects, and I’ve kept that promise. However, I would be remiss if I didn’t mention anything spiritual here, as it’s one of my main coping strategies. My beliefs give me a sense of stability: I can rely on God to be there for me, when I’m otherwise alone. I can rely on Him to understand me, when no one else can. I turn and ask God, if I’m ever confused about what I should do. My faith also allows me to trust that, well, my illness isn’t the end of the world. It keeps me from pitying myself too much, and gives me the courage to meet my challenges. Through the lens of God’s immortal eyes, I can see how much I’ve gained: compassion, for one, knowledge, experience, and patience are worth the price I’m paying for them.
And the hope: everything will work out in the end. If it hasn’t yet, then that simply means it’s not the end. Goodness exists. Happiness can be found in any situation, yet sorrows are real, too, for even God weeps. I have worth no matter how I feel or what I can or can’t accomplish, and so on.
The old fall-back is, of course, “eat well and get your exercise.” For all the things that are wrong with me, my vitamin levels are actually doing quite well. I try to eat as balanced a diet as I can, with plenty of fruits and vegetables, and a variety of foods in every meal. Even when nauseated, I try to eat something and keep my blood sugar up and my body fed. Sometimes I have to result to sipping Sprite to keep my food down, (probably about twice a week), but what works, works.
As for exercise, I take a 20 minute walk about four days out of the week. It’s highly refreshing to be in the sun, the fresh air. I can’t necessarily look at things around me. Everything is kind of blurry, and I often only have impressions of things here and there.
For example, on my route, a tree has bled sap all over its side, leaving a cloying stench in the air. There’s another tree with an overhanging branch that I touch as I pass, to remember what the texture of bark feels like. It grounds me. One house has a little yapper-dog that greets me angrily with every walk. At one point, I try to be sure to stop, because the vista is worth focusing on, and if I don’t stop and wait, I won’t be able to see it.
But suburban nature or not, the sun, the air, the walking refreshes me in one way and exhausts me in another. Both are worth it.
Biofeedback + Guided Meditation.
In my post on symptoms, I mentioned briefly that at the Mayo Clinic they taught us how to reset our stress responses manually, since my body can’t regulate itself.
One of the ways they taught is called “biofeedback.” Essentially, it’s breathing slowly, evenly, deeply and from the diaphragm. 6 full seconds in, 6 full seconds out, ideally for two fifteen-minute intervals per day. There are many things about how our bodies operate that we can’t control just by thinking about them, but how we breathe is one of the things we can control. So, deep, relaxed breathing even when the rest of my body simply can’t relax, helps the body to slow down and ease out of the tight coils of stress and panic.
(There is more to it, like being aware of if our muscles are tight and clenched, or relaxed and loose, but for this discussion we’ll just stick to breathing.)
However, as I’ve already mentioned, I have a hard time concentrating. I can’t focus on something for more than a couple seconds at a time. So how am I supposed to focus on my breathing for over 12 seconds? It doesn’t work, no matter how many times I’ve tried.
Again, I need help. But I’m not going to ask a friend or family member to sit with me saying “Breath in, breathe out.” That’s a little ridiculous. Instead, Mayo Clinic also introduced us to guided meditations. Basically, they’re recordings of a professional speaking, guiding the listener to imagine or think about specific things in a soothing way.
I was first introduced to the idea by a couple of “hippie” art teachers in junior high. The guided meditations I listened to with them were about beaches and mountain paths. Pretty, yes. Relaxing, yes. A little strange, but kind of fun? I thought so, at least.
The ones I listen to now, however, are by Healthjourneys.com by Belleruth Naparstek. The collection I use most often is “Relieve Stress,” though I also own the one she did for “Fibromyalgia and Chronic Fatigue.” I lie down, I listen to what she has to say, and I breathe. Our imaginations–and what we believe about ourselves–are powerful things. Admittedly, turning ourselves over to another person–even a recorded person–makes us vulnerable, and I am well aware that not everyone reading this is willing to do that, or to take time out for themselves. However, I’ve found that what she has to say and how she says it are so spot-on that sometimes when I listen I find myself crying. She gets it. Like a deep-tissue massage she goes right to the heart of it, and eases the trouble away.
Anything that relieves tension is what I need. So…I find myself listening to a lot less rock than I used to. Rock is like candy now, for special occasions.
I won’t go into my full list of current favorite musicians, but I do want to promote one singer and harpist, because when it comes to my illness, she’s been a true heroine. Yasmeen Olya has kept me company through a lot of dark nights and troubled days. There’s just something intrinsically sublime and heavenly about her music. She sings and plays from her soul, and though few of her songs have anything resembling traditional lyrics, they’re not needed.
I only have her 2008 album, but I intend to get her others.
Humor & Stories.
I have never appreciated the power of humor as much as I appreciate it now. I never realized how much of a burden intense and dark stories put on their readers before I got sick, either.
One of my main coping strategies is to escape into the world of fiction and story. This actually bothered me quite a bit for a long time. “Escapism” is a derogatory term, and reasonably so. Men make fun of women who read nothing but romance fiction but can’t manage to have a good, healthy relationship of their own and point out the mirage the books create as the cause. Others mock the geek for burying himself in science fiction novels but, despite knowing how spaceships work, he can’t for the life of him operate on a person-to-person level in the “real world.”
However, my “real world” is filled with pain and hardship. Is it a weakness to want to leave it for a few hours? Rather than grit my teeth and bear everything?
And yet, what do I have to gain from staying and letting the spiraling sink hole get me when I could leave and travel alongside someone else for a while? (If the sin is gluttony, not fiction, then let me beware and find balance, rather than feel guilty for escaping.)
And so I delve into fiction, and the humorous stories are the ones that have eased my burdens the most. Here are a few of those I’ve read and reread:
- The Emperor’s Edge series by Lindsay Buroker
- Austenland (audiobook) and Midnight in Austenland by Shannon Hale
- Howl’s Moving Castle (audiobook) by Diana Wynne Jones
- Seraphina by Rachel Hartman
The stories that have helped me the least are the darkest or most intense ones, where the authors believe in “highest stakes, no matter the cost” principle. As in, the stories ratchet into higher and higher intensity, greater and greater stakes, with few breaks or places for the reader to rest their emotions or receive some sort of resolution.
These stories actually damage me, and I’m left quite ill, sometimes for days afterwards. If I’m listening to one of these stories as an audiobook, say goodbye sleep. Just last night I was listening to a new audiobook where the stakes/intensity were too high. My body went all out of wack. I couldn’t get back control, and so I had to stop listening and put in Howl’s Moving Castle again, just so I could have some help relaxing.
My defenses are fewer than they were, so I have to choose everything carefully.
Looking for the Good.
Finally, it’s important to remember there is good in every situation, no matter how bad it appears. I’m going to do a post on this more later, but I thought I should point it out here, as well. No matter the disadvantage, there’s an advantage to be found in it. No matter how dark, there is still light. No matter how badly things are going wrong, there is always something that can turn out right.
From February to October 2011, I kept a daily pocket-journal (which I bought at Mayo Clinic’s hospital shop) that helped me specifically to look for the good in every day, and to record my concerns so that I wouldn’t have to keep them rattling around inside me. I’m pretty good at spotting the good in what I do and how I live each day now, but at the beginning it was difficult.