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 what I was doing. This is what I needed to do and because of it I was slowly getting better. I wasn’t getting the life I had known back – but I was getting control of symptoms and I was hanging onto a sort-of life.

For a long time I fought hard to get my old life back by doing everything right but the progress was usually so slow that I wasn’t able to see it. Maybe I couldn’t see it because I was looking for evidence of my old life and wasn’t willing to recognize anything different. Sometimes I just got tired of fighting and then I would rebel. You have heard of the fight or flight response when we are in danger? Well I saw losing my life and my sense of self as a huge danger and it didn’t seem like fighting for health was working. My rebellion would involve something like a “flight away” from it.

In my anger, I backed off from what I had been doing. I tried to pretend that I wasn’t experiencing pain and fatigue. I tried to pretend that pain wasn’t controlling my life. I tried to tell myself that most of the time the pain wasn’t strong enough to make a difference in my life, but it was always there. I tried to convince myself that the pain didn’t keep me from doing the things I wanted to do, but the pain did interfere because it tired me quickly. And I discovered that pain was controlling my life, even if I didn’t want it to or told myself that it wasn’t. The pain was an ever present part of my life, even if it wasn’t intense or always in the same place. And the pain was so unpredictable. I continued to live with the frustration that there didn’t seem to be much I could do to make it better or know what made it worse.

These funks when I would try to flee from having FM didn’t last long – probably because they were less productive than facing the illness head-on. After stomping my feet and having my temper tantrums I would settle down to figuring out what I needed to do to control my symptoms and continue to focus on living my life. And believe me, being sick never was at the top of my fun-in-life list – but it was there because that is what having a chronic illness means.

We can have control of our lives and maybe sometimes even control some of our symptoms of our chronic illness. I just had to figure out how.

Have you struggled with feeling you no longer have control of your life? Please comment.

Related articles

• Honoring Pain or Not? (thetawny.wordpress.com)

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