Cooling it in the Garden

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Since October we have been unnerved by noise at our Florida condo. The teeth jarring noise of jack hammers taking up tile and reciprocating saws going through steel beams. Wood saws vibrating onto our cement ceiling, going down the walls, across the floor, and up our bodies. Wooden mallets hitting the edges of wooden floor planks at just the right velocity to reach our temples. Owners around us are just finishing up renovating their condos and now the association has contracted to have railings fixed. Railings that are medal and embedded in cement. More nerve jangling jackhammers.

My Tuesday morning photography walks at the Naples Botanical Garden have been my sanctuary from the assault on my senses. Fibromyalgia, in part, involves a malfunctioning of the nerves that carry pain signals to the brain. Too many get through the spinal column and then the brain amplifies the signals. My nerves are fried so I seemed to focus on the simple as I walked around. I tried to limit the amount of stimulation I studied through my lens.

I focused on simple pleasures…

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and strolled down paths that are familiar.

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I was drawn to nature’s groupings that emitted a sense of peace…

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and lingered near the plants that touched my whimsy.

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Prairie Dogs Searching

And as I strolled I found some surprises to distract my focus on my frustrations.

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Sometimes life is just plain hard and I’m so fortunate to have a beautiful place to escape to, a place where nature has been nurtured to be its most beautiful. During this season of assault by noise, I found healing by sitting on benches while my senses took in the beauty of my surroundings. Yes, nature does have the capacity to heal.

 

This post was submitted to Lens-Artist Photo Challenge #33: Nature.

Still Facing Change

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Sculpture at Hidden Lake Garden, Michigan

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 sharing my struggle with an invisible audience seemed to help. Or maybe I was hoping to connect with others and my journey of healing, that was then 8 years along an “unto death do we heal” path, would give hope to others.

Most of my blogging has involved sharing photography and travels, and sharing my two neighborhoods, one in Michigan and one in Florida (USA). I have met some wonderful people through my blogging, and many of them have had to face unwanted changes in their lives and it has been a pleasure to hear their stories and to share our mutual understanding. It seems that sharing personal stories that are honest and without pretense brings us closer together. Sharing our struggles without self-pity draws others in because most people have an innate desire to help, if only to carry the yoke of emotional burden with us for a while.

It feels right to re-post this that I wrote in June, 2012:

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 different 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 possessed or dreamed that one possessed. Yet it is only when a [person] is able, without bitterness or self-pity, to surrender a dream he has long cherished or a privilege he has long possessed that he is set free – he has set himself free – for higher dreams, for greater privileges.

I need to reflect on what this means for the changes I am experiencing. There are days when I feel like my world is breaking up, I sometimes don’t know who I am anymore and whether there is enough of me left; I’ve lost the safety of knowing who I am and what my body can do. And I am really afraid of what my future will be like.

Thinking about what it means to give up my dreams and privileges will have to wait for another day, when I can muster enough courage. It has been many years since I’ve felt this much emotional pain. I had forgotten the feeling of crying from so deep that it feels like a fist in my stomach.

 Seven months later I reflected on what I had written above in the following journal:

During the past 7 months, as I had to face a very uncertain future, I tried to cling to what I had been and especially what I thought I wanted to be. I fought to hang onto my dreams and hard earned privileges. James Baldwin wrote to the privileged whites who he is asking to give up their personal dreams and social privileges for a more just world. I would have to rewrite the last sentence in order to communicate the journey I am taking:

 Yet it is only when I am able, without bitterness or self-pity, to surrender my old life – and be willing to live the life I have been given – that I am able to have a fuller life.

 I think I am mostly there, sometimes more gracefully than other times. Most days I feel a peace that comes from knowing God will use me in ways I can’t even imagine. I feel a peace that comes from knowing God will give me what I need when I need it. I’m not quite as graceful when, after I have done things that I didn’t think I was capable of, when I have pushed myself to my physical limit, I experience days of pain and fatigue. I guess I didn’t think that was a part of my covenant with God, but then he never promised life would be easy. He just promised to love me and be with me.

When I wrote the previous paragraph I believed that I was “mostly there.” I had done a lot of grieving, had felt a lot of sadness, fear, emotional pain, frustration, and anger. But I still had a long way to go because developing a chronic illness like fibromyalgia impacted on all aspects of my life and adjusting was a process that took years. At times I felt like I was taking too long but adjusting to a chronic illness is neither easy nor quick.

I was in my late 50’s when I was got sick so I also had to deal with the physical and life changes that took place as I was aging along with the changes imposed by fibromyalgia. I have been thinking about people who develop chronic illnesses in other stages of the life cycle and know that each life stage has its challenges and tasks and adjusting to a chronic illness makes accomplishing the task even more challenging. The bottom line is that no matter how old we are, being diagnosed with a chronic illness is devastating and disrupts our goals and dreams.

Here is what I wrote seven and a half years after being diagnosed explaining how I knew I had found my new normal:

I have made two interesting discoveries that have confirmed for me that I have settled into a “new normal.” One is a quote from an article that I discovered while doing a literature search for my writing. The literature review includes the work of Nola Pender[i] who proposed that levels of health exist along a continuum and interact with the experience of illness. And here is the interesting part for me: “Whatever the illness experience, the individual continues on a quest for health – a developmental process… Through this developmental process, it is possible for a subjective state of good health to emerge in the presence of overt illness or disability.”

Boy this makes a lot of sense to me when learning to live with a chronic illness. The authors have put into words what I have experienced. Even though I am very aware (when I think about it) that I have fibromyalgia because symptoms don’t ever seem to totally go away, I still am experiencing a subjective state of good health. How cool is that!

The second discovery is that my life no longer centers on fibromyalgia. Instead, I am living my life fully with some limitations due to fibromyalgia. Most of the time when I am active and doing things I love, I don’t even think about having fibro. It has become one small piece of my identity and how I live my life.

My doctor helped me understand that a new normal is not a destination that we arrive at but a new way of being right now. It is being who we are right now as we move through our life-cycle phases. It is a way of thriving as we are continually adjusting to the demands placed upon us by having a chronic illness. This means that I will face future challenges as my life circumstances change and I will have to continue to work on what it means to thrive, to live my life and be who I have been called to be.

What is encouraging to me is that I once again feel like I am in tune with my normal life cycle. I can once again take an active role in making decisions about who I am as I age and how I want to live my life, as some options are lost and new opportunities become available. Fibromyalgia will always be a factor in the decisions I make but I don’t feel like my chronic illness is in control of my life. My life has integrity.


[i] Pender, N. J., Murdaugh, C. L., & Parsons, M. A. (2002). Health Promotion in Nursing Practice. Upper Saddle River, NJ: Prentice Hall.

 

Copyright © Patricia A. Bailey and I Miss Me, Too/imissmetoo.me 2012-2013.

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Take a Deep Breath

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Lake Michigan from Sleeping Bear Dunes, Michigan

‘Take a deep breath, Pat, and go to a special place in your mind where you are happy and at peace.’ I tell that to myself often to control the stress in my life, to lessen the amount of fibromyalgia pain and fatigue. Lucky for me that I have thousands and thousands of photographs on my computer (and a few on my walls) of those special places, the ones that elicit memories of smiles and joy.

I had a doctor’s appointment this morning – of the 6-month geriatric kind. Having fibromyalgia taught me how to use doctors so I went prepared. I had identified the problem that I think is most important to work on within the poor sleep, pain, and fatigue cycle. I always ask myself if I really want help with a certain problem or is it something I need to work out myself. I don’t present a problem if I know I don’t want another prescription or an appointment for testing and another doctor. I don’t ask for help if I know I will say no to the help that is offered. I had that all figured out and I had my notes so I could be quick and concise with problem, symptoms, and questions.

I never got to my notes. The doctor came in notably frustrated and knowing what he needed to get done instead of wanting to know what I needed from him. He needed to do a drug work-up with me to document the when, what, where, and why of the controlled substances he has prescribed for me. He needs to comply with new legislation that tightens access to controlled substances at the risk of loosing his license. That is all we talked about except checking my vital signs.

I understood what was happening and why he needed to do what he was doing. But I left frustrated and very angry – not at him or the legislators who created this new law that adds another layer of regulation. I understand the narcotic crisis and am willing to live with some inconvenience, but I’m still angry.

I am angry at all the people who believe they have a right to do what they want to do to feel good or get rich or be comfortable even if it hurts other people. The Republican platform is less regulation and less government in our lives. No one has explained to them that legislators don’t have late night sessions thinking about new laws and regulations they can create. They create regulations when people do bad or stupid things, like banks giving out junk loans to people who want a bigger house then they can afford and people who do really stupid things with products so laws have to be made making manufacturing more expensive and white people believing they have a right not to feel uncomfortable because someone of color is too close to them, not breaking any law so they call gun-toting police to take them away or kill them and people believing they have the right to not do what they need to do to help themselves feel good instead of taking narcotics. I am angry because so many people seem to believe they have the right to take something they want that doesn’t belong to them (steal) that leads to all the rest of us paying more for the things we need. I hear my high school civics teacher telling us to write this down: “My rights end where your rights begin.” Maybe I’ll have a tee shirt made with that on the front and “Your rights end where my rights begin” on the back.

Two doctors and I have agreed that stopping the drugs I use for FM would be irresponsible so I guess I’ll just take another look at Lake Michigan and chill out. Two of the controlled substances are specifically for fibromyalgia, Lyrica and Sonata (short acting sleep med). I know I won’t abuse them because I have been on a low and stable dose of Lyrica since it came on the market. I only use Sonata about once a month so a 30-day prescription lasts two years. I also have a prescription for Norco that I use 1/2 dose about once a year. At that rate my current supply should last me about 59 years – and that makes me grin. But it bothers me that doctors and pharmacists will have a lot more work to do because others have abused something that was created to make life better for those who use these drugs responsibly. And we will all have to pay for it.