June 15, 2010

Living with RA and Fibro – Part 1 (or you’re not in Kansas anymore)

So I've received a nudge (from my friends and my Friend) to write about how I am living, vitally and without pain, with rheumatoid arthritis and fibromyalgia. And it seems that I can't get a real book going, given my full schedule. So here are a few beginning thoughts, and I hope to add to them from time to time through the summer. I want to start with the history.

I first received a diagnosis of fibromyalgia back in 1993. I was in nearly constant pain, with flares that came and went. I kept going back to the doctor complaining of the "back pain" (somehow I didn't think the pain in my hands and feet mattered) and fatigue. They checked my thyroid, checked for infection, all clear, I'm fine, go home. When I was persistent, the doc finally said, "Well, you've probably got fibromyalgia, which is just another name for unexplained back pain. I can give you some antidepressants to help you sleep." I refused.

Then I met a woman doctor who was more convincing about the antidepressants. Took 10 mg of Elavil every night for awhile and gained 30 pounds. I stopped.

Then I met a rheumatologist who put me on some supplements, gave me some nutritional advice (stop yeast, red meat, alcohol, caffeine, msg), some of which I had been practicing already. I did. I felt some better. This went on for several years, until I started getting worse. Enter another diagnosis: rheumatoid arthritis.

You have to understand I was working in a high-stress bureaucratic setting. High stress for most of us there, and especially for me since I didn't fit in and was also recovering from some extreme childhood trauma which resulted in being an outcast in my family. I was seeing a psychoanalyst three times a week – you read that right – and enjoying the emotional and psychic growth I was experiencing. But work was awful, mostly because I wasn't using my best gifts, and because I wasn't socially accepted among my immediate colleagues. So, even though I valued the work, the job, and the health benefits it afforded me, I wanted to be somewhere else for more than eight hours a day. This is not a good treatment for an autoimmune condition!

Meanwhile my spiritual life was paradoxically exploding with vitality! I was growing in the Spirit, learning new things, hearing the voice of God, having ecstasies, feeling impassioned, and beginning to open to the energies that are part of Mother Earth. I took training in spiritual direction and reconnected with my Christian roots. Jesus came back into my life, visions were abundant, and strong leadings often came to me. It was actually during this time that I learned to stay with challenge, discern leadings, trust them, and be faithful to them. But I was also feeling out of synch with my Quaker meeting, and couldn't find anyone locally with whom to explore the earth energies. Some of my Quaker friends distrusted ecstasies, did not want to hear about God, definitely distrusted "earth energies," and thought I was just plain weird. Or, at least, that is the way I took the energetic "push backs" I received in Meeting for Worship. So my vital spiritual life was, in many ways, pretty isolated. This is also not a good treatment for autoimmune conditions!

I remember the day when I "got it" that I was suffering because I could not accept my own limitations due to the illness, and I could not accept that my employer had no loyalty to my well-being. I kept trying to get the higher ups to understand what was going on for me, while also pretending that my work wasn't being affected by it. "Please take care of me, help me because I'm sick and tired, but let's pretend that I'm meeting my deadlines and nothing is wrong." It was irrational. Also not a good treatment for autoimmune disease.

That day I'd had a hard meeting with the young, charismatic woman who supervised me. She was pushing, and I was resisting. I got angry and scared that I was going to lose my job. When I returned to my cube, I sat with the tension of very uncomfortable feelings, opening to Spirit, asking for release from the feelings. And then the feelings intensified, I didn't know how I was going to handle this in such a public place; they broke, and released in tears. And it was revealed to me that I was hiding from my disability by pretending that my work wasn't being affected. In that moment I accepted that I had a disability. And then I felt led, knowing it was risky, to open up to the supervisor. I cried and so did she. It appears that she had a good, if sometimes hard, heart.

So steps #1 and #2 for me in learning to live with RA and fibromyalgia: 1) Ask Spirit for assistance in learning what can be learned from the condition, i.e. treat the condition as a Teacher. 2) Fully accept that this is a disability which affects your life, in good ways and challenging ones. You're not in Kansas anymore.

Next: What the Teacher taught me, or lessons learned the hard way.


Joann said...

Thanks for this message, Merry! This is a lesson I recognize. But perhaps haven't codified. Looking forward to the next installment!
Love you -- your whole lovely, tender, fierce, centered, passionate, powerful, discerning, reverent, creative, disabled, insightful, smart, feisty, courageous self!!

Kristen said...

Merry, this was exactly what I needed to read today. I've been struggling the past two weeks with the reappearance of my crazy (and unexplained and seriously uncomfortable) skin rash, along with a flare-up of my reactive arthritis--which hadn't flared in over two years. On top of physically feeling like I've been hit by a truck and like my skin is on fire, I feel emotionally disheartened, discouraged, and downtrodden. Your message really spoke to me, because accepting my condition(s) and learning to live with it, rather than struggling against it, is a lesson that I'm only beginning to learn. I recently took an 8-week mindfulness meditation class, based on Jon Kabat-Zinn's work, which has helped me immensely in this regard, but I have a long way to go. This week, my struggle has really been to try to figure out when my work nourishes me (e.g., when I'm working on something that I'm passionate about, such as helping refugees) and helps me move beyond the pain/itching, and when I need to recognize and accept my limitations and step back from work (e.g., when I really need a 2-hour afternoon nap). Your message really spoke to where I am right now. Thanks for giving me the shivers and bringing a lump to my throat!

Merry Stanford said...

Ah, Kristen, I know the struggle. It's a natural response to the experience of limitation. I'm glad you are learning when to step back, and when to push through. It's a great lesson to learn - most of us have to wait until end of life to learn it, but you will be able to carry the riches of that learning for a long time, into increasing vitality. Many blessings!