Fibromyalgia update

It’s been over two years since my diagnosis of fibromyalgia, and I thought it might be a good time to take stock.

I’ve certainly come a long way from those early months of incessant, debilitating pain. Do I still have chronic pain? Yes. Is it manageable? Absolutely. I even have days, many of them, in fact, where the pain interferes very little with my daily functioning. I go to work, I do housework, drive the kids around, and even exercise (moderately—no marathons!). I do occasionally have bad days or even bad weeks, sometimes a few in a row, but I know now that they will pass (with a little help from my osteopath), and I’m becoming more and more competent at preventing them.

Flare-ups now are usually due to one of two factors: stress, and overdoing it physically. Stress is something that is impossible to avoid, especially when raising teenaged children, managing a household, and working. More insidious is the emotional stress that we continue to carry around with us from childhood, despite years of therapy or other interventions. What I’ve learned is to control what I can control, and be as prepared as possible for what I can’t.

I prevent stress where I can: I’m trying not to repeat the mistake of last summer when I booked surgery for my husband, renovations, the kids’ first time at sleepover camp, and a huge family event all for the same 6-week period. It took me a very long time to get over the pain that developed before and during that time; on top of all that the uncontrollable happened–2 friends of my son died (see here)—adding to an already charged emotional load. The trick is to keep the controllable under control so that when the uncontrollable happens you have the resources to deal with it. Not always easy, but definitely achievable with a little practice.

As for chronic emotional stress form childhood, while I absolutely recommend therapy, I think it’s important to acknowledge that no amount of therapy will make childhood pain disappear, especially when current events re-trigger it. I know now though that’s it’s OK to just feel bad for a while, knowing that it will pass, and I know also what types of things trigger these bad feelings, and I also know that it’s good to express them either by writing, singing, listening to music, or just walking or meditating.

In addition to managing stress, I’m learning how to manage my expectations and physical limitations. One of my biggest challenges is learning to tell myself to stop. If I wake up feeling great, I think of how much housework I can get caught up on. After the 5th load of laundry a little voice starts saying, “OK, that’s enough now, you’re going to pay for this tomorrow,” but another little voice also says, “Maybe now you’re strong enough—let’s keep going.” The thing is, sometimes the second voice is right, which is very exciting! But usually the first voice is right, and there’s never anything wrong with erring on the side of caution. Again, it’s a question of controlling what you can in case something uncontrollable comes up: you may be fine doing 5 loads of laundry, but then if someone spills sugary coffee all over the kitchen floor, will you have the strength remaining to clean it? I have to constantly remind myself of that old anti-drug slogan, “Just say no!” And after all, laundry and housework should be easy to say no to.

The things that help me the most are exercise, meditation, and making sure that I always have a bit of time to myself, every day. Exercise is crucial: after years of chronic pain, the muscles learn some very bad habits, and become weak from underuse or improper use, and this is part of what causes the pain. I work with an athletic therapist, and again, I constantly have to stop myself from doing too much or wanting to go too fast. As someone who used to be in relatively good shape, I find it almost unbearable to not be able to do what I want to physically, to not be able to push myself, but I constantly have to remind myself to slow down. The aim is to achieve full function before actually “getting into shape.” So until I get to a point where I’m more or less pain-free for the entire day, and able to do what needs to be done in a day (I’m often there now, as long as I don’t want to do too much), I can’t think about pushing myself to get in shape. Every time I push myself I end up hurting myself and then I’m back to square one. At the moment I’m alternating days of strength training (and by strength training I mean a couple of very conservative resistance exercises for the upper body, and a few easy exercises for the lower body) and cardio (and again, I’m being conservative: walking briskly is what I can manage at the moment). I do have goals: I want to be able to swim laps by the summer, and I want to take up cross-country skiing next winter.

What’s most important is the change of attitude I’ve cultivated. Up until very recently, I thought of recovery as a linear process, that I would generally keep getting better and stronger and eventually return to my pre-fibromyalgia self. I do think that may be true, but the path is much less linear than I had imagined. Now when I have a setback, I don’t think of it as a setback on some linear path, I think of it as a bad period out of which I will eventually emerge, at which point I will get back to the exercises that I am able to do. And when I’m doing well, I try not to think of it in terms of being cured, but rather as a good period during which I can enjoy doing more, knowing that I still have limits. It’s a type of acceptance, not of a life of chronic pain, but rather of my own limitations and the fact that I have certain challenges I have to deal with. I’m also not afraid to take medication when needed, although I do take pleasure in going for days or occasionally weeks without needing advil.

Other than exercise, I try to meditate, if only for a few minutes, most days. This lets me reconnect with myself and calm my mind. And I’m still working on not feeling guilty for taking half an hour, every day, to write or play piano or sing or walk or, my favorite, watch one of my favorite tv shows in the middle of the day while eating lunch.

Life's Little Ironies and a Week Five Realization

Sometimes life is so ironic. I had been working at TAW so diligently, doing the morning pages every day, trying to do as many of the tasks as possible, doing my best with the artist’s dates, and thinking that this newfound creative outlet would help to cure me of my chronic pain issues. However, as the month of September went on, I couldn’t understand why my back was hurting more and more. In my efforts to watch out for synchronicity, I even clipped a horoscope out of the paper one day that said, “All your aches and pains are the result of inner turmoil.” And so I wrote more and more, hoping to work out all that inner turmoil (not because I believed the horoscope, but because the horoscope—which I would normally not even read, let alone “believe”—confirmed some deeply held suspicions). And still the pain got worse.

Well, sometimes a rose is just a rose, or in this case a pain is just a pain, not an inner turmoil!! It finally dawned on me that the day on which my pain had started to increase corresponded to the day after I had started working on my laptop at my dining room table. No good back-supporting chair, tiny screen, tiny keyboard, shoulders rising because the chair is too low for the table, morning after morning, day after day. And when I wasn’t working at the dining room table, I’d carry my laptop around with me and read my blogs in a rocking chair on the patio, or the squishy chair in the living room. In other words, I was constantly stressing my upper back, all in the name of creativity! Finally one day something blew, and by the time I got to work I was in tears; I started to teach my class and had to leave 10 minutes later. The next day I saw my osteopath, who informed me that even someone with a strong back (unlike me) would hurt themselves working in the posture I was in day after day.

Thus the break I’m taking from TAW. I probably shouldn’t even be typing this post, as I should save any computer strength I have for work, but I’m feeling rather down because I’m not writing at all. I had managed to finish week five, although I never did the “check-in.” At this point I’m not going to start again, because I’d really like my back to feel much better than it does, and to set up a better work area, which will involve spending money that I don’t have right now. So I’ll look on in envy as my fellow TAW bloggers continue their work, and try to post random thoughts as usual as they occur to me.

I will say, however, that during week five, when we were supposed to collect images of things we wished we had done, or would like to do in the future, I realized that I used to love traveling, and most of what I wanted to do (in the past and in the future) was travel, and that I actually don’t travel at all and have in fact developed quite a fear of traveling. During that week I tried to figure out a way I could travel some time in the near future, and that’s something I’m still working on. At first I thought I’d try to go away with a friend on a last-minute deal to the Caribbean or Cuba (I’m Canadian—we're allowed to go!), and then more recently my brother called from Israel to tell me he’s getting married, for the third time, on Christmas Day. Since I missed his first two weddings, I’m thinking maybe I’ll try to attend this one, despite the fact that I’m afraid of flying, that I’m even more afraid of flying overseas, especially to the Middle East, that I’d have to leave my husband and kids over the holidays, and that tickets are a fortune and I’m broke. The whole enterprise has opened my eyes to how much fear (and lack of money, but really that’s secondary) can restrict your life experiences.

Creativity and Healing

According to an article in the June 2008 edition of Scientific American, blogging is good for you! Apparently expressive writing not only serves as a means to cope with stress, but also

• improves memory and sleep

• boosts immune cell activity

• reduces viral load in AIDS patients

• speeds healing after surgery

Furthermore, cancer patients who write just before treatment fare better mentally and physically than patients who do not. Like running, listening to music, and looking at art, blogging might trigger the release of dopamine, a neurotransmitter associated with the pleasure systems of the brain.

Wow! Here I was thinking it would help me, and maybe even help someone else, to put some of my thoughts down on virtual paper and send them out there into the blogosphere, and . . . I was right!

This confirms what I’ve suspected for some time now: that creativity is crucial to healing. I don’t think anyone’s saying that writing or singing or dancing will cure cancer or MS or other illnesses (although I’ve met people who swear it does), but I think it can speed the healing process, possibly prevent illness, or at the very least, help people cope with illness and enjoy better quality of life.

Creativity seems to counteract the stress response, which has been shown over and over again to induce a wide array of illnesses, from heart disease to cancer. When we are working on a creative project, we enter into a state that psychologist Mihaly Csikszentmihalyi calls "flow," during which we are making something happen, rather than passively experiencing the world. Often in these situations we are stretching our abilities while trying to accomplish something challenging but worthwhile to us. We lose track of time, stop thinking about the past and the future, and are completely alive in the present moment. In that way, being creative is like meditating, which also has healing benefits.

Often people who are unwell physically or emotionally feel isolated. Being creative is a form of communication, and although many people are perfectly content to keep their creations to themselves, many others derive immense pleasure from sharing (this is especially true for blogging, where you are potentially—if not actually—sharing your thoughts with millions of people out in cyberspace). Communication, especially in the blogosphere, leads to community, an important marker of health. A study undertaken by Statistics Canada, for example, reported that Canadians who have a strong sense of belonging to the community in which they live experience excellent or very good general health, whereas those with a weak sense of belonging don’t view their health as favorably. Creativity often leads to or is part of community building, which is in turn good for your health.

Finally, creativity is about self-expression. More and more health experts are insisting that one’s ability to express oneself and one’s emotions is crucial to good health, and vice versa, that emotional inhibition can lead to ill health (see, for example, this book, or this one). Creativity is one of the most efficient ways to get in touch with, explore, and express your emotions.

In the past I always believed that creativity was about accomplishing something, some perfect finished product. So for many years I didn’t do anything creative, because the stakes were too high, and I knew I wouldn’t measure up. Now I realize that it’s the process, the pleasure, the enjoyment, the expression, and the communication that count. And certainly when I look back at the times of my life that I loved, they were spent lost in play or creativity. When the demands (some real, most self-inflicted or perceived) of perfectionism come into play, stress starts and can eventually lead to ill health. Real creativity is about getting back to that childhood state when you get lost in the present moment. The big question for me is: can this bring about physical healing? Is anyone else out there finding that creativity is bringing about mental, physical, spiritual, or emotional healing?

The Artist's Way: Week Four

Week four is drawing to an end in a few days and I fear I have failed miserably, at least where the reading deprivation is concerned. I have read every single day. I just can’t not read. Not reading is like camping to me: very uncomfortable and not really worth the effort. That being said, although I couldn’t quit cold turkey, I did manage occasionally not to read at times when I normally would. Twice I managed to go to sleep without reading my novel, and once or twice I managed not to read in the late afternoon when I’m really tired. Once I just sat there and watched my cute pet rabbit. But I did end up watching a little more TV than usual, and one day found myself rather obsessively reading stories online. Maybe I will try the reading deprivation another week, when I feel more capable; this week was rather stressful (one son almost broke his arm in a skateboarding mishap and had to see several doctors before learning that it wasn’t broken--and actually didn't read a single word in the waiting room, even though I brought my book with me--and the other was home sick two days, which wasn’t stressful but did limit what I had planned to do). I'm realizing to what extent reading is a narcotic for me, but hey, whatever gets you through the night. It could be worse.

On a more positive note, I did do morning pages every day, although the day of the almost-broken arm they were cut short. I had planned a great Artist’s Date for yesterday, put it off until today, and have yet again canceled it because my son’s home sick. I’ll try to steal an hour or two tomorrow if I can, but I have no idea what I’ll do. All that comes to mind is the library or a used book store, both of which involve reading, so either I admit complete failure or I find something else. I’m finding the Artist’s Dates the hardest part of this program.

The tasks went well, although I found I had a huge emotional reaction to the letter from my 8-year old self to me now. That was hard, but probably therapeutic.

And finally, in the last 3 or 4 weeks, I’ve written 3 songs. In the past 20 years, I wrote one, despite the fact that my training is in music, I play piano, and I’m a music (history) teacher. I think that’s significant. It’s funny, because I originally planned to do TAW because I feel blocked as a writer (of words) but most of what’s coming out is music. And what’s most amazing is that I’m working on these songs with other people (alone is usually my default setting). At first I was very afraid to do this, but when I gave one of my songs to one of my musician friends, he did amazing things with it; so I brought another unfinished song to another singing partner last night, and together we wrote the words and added some harmony. It was one of the most rewarding creative things I’ve ever done. Maybe I’ll post it after we work on it some more….

Good luck to everyone with the rest of the week.

The Artist's Way: Week Three Roundup

I just finished week three of TAW, and it seemed a more volatile week than the earlier two. I was much more emotional, and felt not totally in control of my emotions. In fact, I was a bit of a basket case. I found the experience rather unpleasant; I felt stressed. Now this might not be completely due to TAW, but I can’t help thinking that it’s at least partially due to the muck-raking taking place in my morning pages. I found that partway through the week I had very little to say in the morning pages, and then at the end of the week a ton of stuff came pouring out, so something was going on there. Again, for the third time in a row, I had a hard time with the artist’s date. I went on a couple of walks (which I do anyway) and decided that that would do for an artist’s date. And I took an amazing nap on Saturday, so I guess that could be an artist’s date too. Before starting TAW I had great ideas about going to the farmer’s market, or to the used bookstore, or the library, or art exhibits, or cafes, or museums…. you get the picture. But it just seems too difficult to fit those kind of trips in, and it’s so much more comfortable just to walk. Or sleep. I’m not sure if I’m “cheating” or if I was just expecting too much of myself.

For my hour of artist brain activity I played around with the playlist I’m putting together for my friend’s birthday. To me making playlists is a very creative activity: I check that each song follows nicely from the previous one, and that the overall message or narrative works, and that the songs won’t give any kind of negative message, and so on. I actually love making playlists for friends, and for that matter for myself (although I hardly ever do).

The thoughts about childhood I found rather difficult. I had a hard time coming up with five things I like about myself as a child, which I found rather sad, and the food I ate from my childhood turned out not to be quite as good as I remembered: a sandwich made from white bread, mayo, a processed cheese slice, iceberg lettuce, and ruffle potato chips. I’m not sure why I expected it to taste good, although I do remember loving to eat those sandwiches at my best friend’s house when I was young, and craving them during my pregnancies. Blech.

A strange object came to me in a dream one night too, a delicate gold Star of David that I think I may have worn on a necklace when I was very young. The image was extremely vivid in the dream; the gold was bright, thin and crenelated, and so fragile and easy to bend. I’m sure it’s some kind of link to the spirituality inherent in TAW, but I’m not sure exactly what the connection is.

Tomorrow I’m starting week four, in which we must suffer reading deprivation. This is filling me with dread, as I am indeed addicted to reading, but I’m going to give a try anyway. It’s only one week….

Finally, a note about the timing: my friends at The Artist’s Way blog are taking two weeks to complete each of the first four weeks, which is a fantastic idea. I’m worried that with my work schedule I’ll be needing to take extra time in November to complete the tasks, so I’m barging ahead with the folks at The Creativityist now, so that I won’t feel so guilty when I fall behind in a month or two.

Have a great week everyone!!

Finding balance in life: tai chi

In my seemingly neverending (alas!) quest for lasting pain relief (I have fibromyalgia) I have recently started practicing the Chinese martial art tai chi. I am by no means an expert on the subject, and have only taken two classes so far (although my husband has been practicing for two years now) but from what I’m learning and observing, tai chi is basically slowed down kung fu, used primarily not for self-defense but rather as a moving meditation that results in many health benefits, including better circulation, better balance, increased strength and flexibility, and more. The student learns a series of 108 movements, which are strung together in a fluid and continuous manner to make a sort of slow-moving dance. In addition to these movements are some foundation exercises and breathing exercises. According to my teacher, it takes one year to learn the movements and 99 to master them.

One of the purposes of tai chi is to circulate vital life energy (chi) through the meridians of the body. According to my teacher, pain indicates blockage; through the practice of tai chi we can learn to unblock the energy and get it circulating again, thus reducing the pain. According to my physiotherapist (who recommended the teacher), the energy meridians often referred to in the Chinese healing arts (tai chi, acupuncture, acupressure) correspond closely to our nervous and vascular systems. The practice of tai chi can ameliorate poor posture, alignment, and patterns of movement, all things I have been working on with my “Western” osteopath and physiotherapist.

People have often recommended tai chi to me because it is gentle and slow, and because you move at your own pace. However what I noticed during the very first class was that inherent in the slow, smooth, reflective movements was a sort of aggression, assertiveness, or even violence. Now on the one hand that shouldn’t be surprising, given that tai chi is a martial art; however it is usually thought of as a soft, or inner martial art. Still, this balance between aggression and meditation struck me as extremely interesting. I think I’m beginning to understand the underlying principles of yin and yang, the duality that is often evoked in Chinese martial arts and medicine. As my teacher explained, you can’t really achieve yang, or that kind of outward, assertive, efficient energy, unless you have fully attained yin, or that soft, relaxed, meditative quality. As a musician I can draw an analogy with playing the piano. If you bang out loud, hard, passages on the piano, you end up injuring yourself unless you are in a completely relaxed state. If you stay tensed at all times, the music suffers and so do you. Similarly, if you watch Roger Federer play tennis (for example), you can see that he is completely relaxed and focused, and that it’s precisely this state that allows him to seemingly effortlessly hit winning shots over and over again. The man doesn’t even sweat, or look like he’s working hard!

I’ve spent the past two years, almost, trying to unwind, to achieve a meditative state where my nervous system is calm and I have some sort of inner peace, all in the hopes of reducing my physical pain (and because the pain keeps me from doing more active things). Frankly, I’ve had enough of stillness. Not that I want to go back to my old Type A craziness, but a little balance would be nice: I’m ready to fully embrace life again, but without driving myself as hard as I used to. Although I’ve been interested in tai chi for some time now, I was worried, or perhaps disappointed, that I was taking up yet another calming, meditative endeavor. It seems that tai chi is that, but it’s more, too. It’s balance: between yin and yang, between inner calm and outer action. I think the key is that the outer action is controlled, efficient, and always coming out of and going back to the inner calm. I think this might be the key to achieving balance in other areas of life too. In terms of pain relief, well, that remains to be seen. The teacher says that it’s a long slow process, so check back in in a few months or a few years. All I can say now is that a few months ago I didn’t think I was physically capable of starting a new physical activity; at the moment I’m a little more hopeful. Perhaps tai chi will give me the balance I need to deal with life in a new way.

The Artist’s Way: Week Two (postscript)

I finished week two of TAW a couple of days ago. As I have already written about some of the experiences I had during the week here,I’ll keep this wrap-up short and sweet. What stands out for me in retrospect is the synchronicity that Cameron talks about, and the way that synchronicity is linking two important areas of my life: healing and creativity.

My decision to do TAW program itself arose out of a sort of synchronicity. My brother and his wife split up a year or two ago. Since they had always lived overseas, I didn’t know my sister-in-law very well, having only met her a few times. (Strangely, although we lived at opposite ends of the world, we had both chosen the same dishes for our wedding registries: the first synchronicity!) I always felt bad that I had never really gotten to know my sister-in-law, and worse that she and my brother got divorced. So at some point I sent her a little email message, and somehow we connected. I showed her some of my writing (on this blog) and she shared with me her dream of being a dancer and quitting her job to teach dancing. She recommended TAW. From one recovering creative person to another, with my brother as the unknowing hub.

Since starting TAW September 1st I have noticed several more explicit incidents of synchronicity. To begin with, as I was starting I found two other groups online who were starting Aug. 31st and Sept. 1st: here and here. I wasn’t looking for them at all, but literally just stumbled upon them. It’s great to be doing TAW as part of these communities, especially when I started out fully expecting to be on my own.

Last week for my artist’s date I went to get a massage. Since I was seeing a new massage therapist, I had to explain to her my history of chronic pain. We briefly discussed pain management techniques, and she asked me if I did a lot of reading on the subject (which I have). She then said that if she could recommend only one book, it would be . . . The Artist's Way. In fact, she even said it would cure me.

Now people have recommended many books to me over the years in connection with my back problems and chronic pain, but this is the first time that someone has recommended TAW in connection with physical healing. Which confirms my belief that burnout, fibromyalgia, and probably many other health issues are symptoms of spiritual crisis, and creativity is the path to healing. I know that sounds flaky, and would never have said something like that 2 years ago. Oh well, say hi to the new me!