Still Facing Change

I must be going through another period of change brought about by growing older and the challenges that entails. I’ve been going back and rereading some of my early post, back in 2012, when I was a new blogger and using my posts to share my struggles in learning to live with fibromyalgia. Writing was an exercise in healing and […]

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Coping with Change

It’s that time of year when things are a-changing for me. It’s that time of year when I move from my winter home in sub-tropical Florida to very early Spring in Michigan. This isn’t the first time I’ve made this change and probably not the last time I’ll write about it. I’m at the point in the process where I have to stop to think where I keep the sharp knives, the spoons for my morning cereal, my favorite spatula, and my whisk. It is the time when I turn on the bathroom faucet to a harder flow instead of turning it off because the faucets work in different directions at each place. It’s a time of achy body and exhaustion – for a little while until I adjust or the weather gets warmer. And it is the time of shifting friendships. Most of the migratory condo residents had left before we did so I had to give good-bye hugs and feel the sadness of loosing them for a few months. We have lived there long enough to become close and really care about each other. We left a few behind who won’t be leaving until May and I worry about them becoming lonely – like I was becoming without everyone being there. I really appreciate that we have made close friends who will be excited when they see us next October or January. There is a bond that has […]

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Sharing the Big “F’s”: Frustration & Feelings

 I started keeping a journal when I was diagnosed with FM 8 years ago. I am now using those journals to identify the issues that I faced, some of the lessons I learned, and to share my journey of coping and healing. During that first year I felt very lonely because I didn’t know how to talk about my frustrations and feelings with family, friends, and the people I worked with. Maybe I was afraid to talk about them. Almost everyone I knew was aware that I was diagnosed with fibromyalgia because they had been very worried when I got so sick so quickly. Our local newspaper also ran a feature article on someone with FM right after I returned from Mayo with a diagnosis. Because the people around me cared and were informed, they would ask me how I was doing and usually I would say fine and changed the subject. It just didn’t seem appropriate to say things like: I’m angry because I don’t have the energy to get my work done; I’m scared that I won’t get my life back; or, I’m so frigging tired of being tired (or hurting, or crying). Sometimes I would talk to people about how I felt when it seemed appropriate and I thought I could trust them. Sometimes these people had their own health problems and frustrations. Sometimes my experience became a shared experience that brought us closer together and we […]

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Facing Change – Maintaining Integrity

My doctor introduced me to the term “new normal” and it intrigued me – probably because I was well on my journey to finding one. And it was a hard journey, as bumpy and wild as the five-day tour of Kyrgyzstan in a 4-wheel drive van driven by a guide who had fantasies of being a bronco rider – more about that in future posts. The journey to a new normal was full of doubt, fear, pain, sadness, and anger and it required a major change (not just a shift) in how I thought about myself and my life. It took courage and perseverance; sometimes I wanted to give up but I didn’t know how. Even though I became discouraged at times, I always had a strong drive to find a way of living that had integrity. But what does a new normal consist of? I wrote this in my journal in October 2004, ten months after being diagnosed. For many years I have found strength and direction in the following words by James Baldwin (1961, Nobody Knows my Name, p.100):  Any real change implies the breakup of the world as one has always known it, the loss of all that gave one an identity, the end of safety. And at such a moment, unable to see and not daring to imagine what the future will now bring forth, one clings to what one knew, or thought one knew; to what one […]

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Losing Control of My Life

When we get sick we need to shift our attention, and our energy, from our normal activities to getting well. I will be sharing information and my thoughts on the sick role in future posts under the category In Sickness and In Health. In that first year I had a really hard time getting my mind around the fact that chronic meant forever, maybe because I was so afraid of what forever in pain meant for my work and play. I began to understand, but really didn’t want to know, that it meant I was never going to get well, that I would have some level pain and would need to work to maintain my energy – and I probably would never get back the life I had known. Although I had a strong desire to continue working full-time and to have a life outside of work, being sick seemed to become who I was and what I did. I had lost control of my life to sickness. My life became weekly doctor appointments to adjust medication dosages, discuss ways to treat new symptoms, or for acupuncture for pain. Life was also consumed between appointments by doing things to get the most from my time with my doctor, like creating charts of sleep quality, or pain levels, or amount of fatigue. I was thinking about symptoms all the time which meant that pain and fatigue were controlling my life. Don’t misread me – I’m not criticizing […]

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