My Wish has been Realized – Now I Want it Back.


This year I wanted snow during our Michigan stay for the holidays. Last year there was a big snow the week before Thanksgiving, that was gone by the time we flew in, and the rest of the winter was relatively mild. The five weeks we were here it didn’t snow because it wasn’t below freezing very often – as I remember.

On the first Sunday evening of this December, JB called me to look outside and there it was. It was as magical as it had been when I was six. If I were six I would have begged to go out to play, but now that I’m in my 70’s I grabbed shoes and jacket, tripod and camera. I didn’t wander off the porch because my stiff and aching body had different ideas of what it means to play.


The stillness of a winter garden.

We have had snow accumulations several times since that first Sunday evening’s delight. I still get excited when I see those great big flurries drifting and dancing their way to the ground – even JB shows some excitement but not quite as much as I do. He is responsible for snow removal, aka, shoveling the stuff.

It is colder this year and I am feeling it. I remember why we go to Florida during the winter months, it is so difficult to keep my fibromyalgia under control. The lower temps and higher humidity of this winter are making my muscles hurt so much that I frequently find it hard to stand erect. I do my twisted penguin walk.

I’m not complaining – okay, yes I am. But not really because I am still doing most things I want to do – like shop and decorate and have friends over for supper. JB and I were laughing the other day that our life seems to revolve around food now that we are older. My best times are sitting around the table with friends and/or family. I enjoy cooking for them and enjoy them cooking for me even more. We laugh and talk a little politics and try to laugh about politics, and of course make plans for our next meal together. And I get really tired – but it is a good kind of tired. I have loved my way into fatigue.

We are hosting our card club tonight and I have a little more decorating to do. My posts take a while to write because I work a little and rest a little (with my computer) and then work a little more. I get most things done if I pace myself this way – at least the most important things. I find that what doesn’t get done, doesn’t really matter anyway.

Over the next couple of days we are suppose to get some more lake-effect snow. Some are saying 2-3 inches, others say up to a foot. JB finally decided that he really did need to get the snow blower out of the shed and start it up – just in case. And I am happy we got some snow – but it also feels like enough. I’m ready for a 70 degree day instead of the teens that are coming. I hear more pain and fatigue in the forecast. I also predict more posts in the near future as I rest and watch the snow fall outside my window.

I got my inspiration for this post from Krista who works hard to inspire us in our blogging. The photo challenge for this week is “New Horizon” and she prompts us to, “Look ahead! How will you make the best of this beautiful day?”

Menacing Barn

Maple Dale 059

This is the second time that I photographed this barn – and both times the barn feels menacing, maybe sinister. It is a good photo for me to post today because right now I’m feeling a little surly. I had a great day shopping with 13 year old granddaughter Emily and I am working on the quilt I’m making her for her bed (and college dorm). I’m paying the price with a very sore back and fatigue and that is frustrating. I’m tired of chronic pain that always has to be pushed through if I want to have a life. I’m frustrated with having to always pay a price for having fun.

There, I’ve had my pity party and now I’m ready to get our supper of fresh sweet corn, hot dogs, and peaches with blueberries from my favorite fruit people at the farmers market. Then I think I’ll work on the quilt a little more, soak and polish my feet, and then Emily and I are watching Christmas Holiday together. She said it is really funny and I know laughter produces more feel-good chemicals in the brain. I wish I could get this barn to laugh.

Life in Paradise

I don’t think my life can get any better. When so many of my relatives have died and most of my friends have serious health issues, I know that life is precarious, even tenuous. Seeing the morning light is a glorious experience. Feeling the freshness of a new day after a good night’s sleep fills me with excitement. Being able to capture it with my lens is pure joy.

Morning light silhouetting the palms of Florida.

Morning light silhouetting the palms of Florida.

I don’t need caffeine to start my day but I love the smell of freshly-hubby-brewed coffee and feeling the warmth of my favorite chipped mug in my hands. I have one of these mugs in Michigan and another in Florida and they are very dear to me. They began as favorite mugs and my husband chipped both of them – he felt so bad about it. The chips make them even more special because 1) he did it while cleaning up the kitchen and a chipped mug is a small price to pay for a clean kitchen, and 2) living with him is like, well… paradise. Those little chips are my reminder that I am able to share another day with a wonderful man who loves me with all his heart.

While I sip my coffee, I work the cross-word puzzle and Sudoku in the morning paper. The pain I experience in my muscles impacts my brain, producing a brain fog that makes remembering words difficult. I find joy in exercising my brain and believe doing these puzzles helps my thinking and my speeling spelling.



Every day should include exercise because I experience less pain when I engage in some moderate activity. If I don’t exercise, I have muscle pain. For the record, I believe that Paradise, the real Heaven, will not require exercise to stay healthy, lean, and pain-free. This morning I rode my bike to keep my replaced knees working good. Wait a minute – those knees are titanium and are the best working part of this aging body. The muscles around, above and below those knees need the bike ride.

I prefer walking because I can carry my camera with me. Funny, but when my camera is around my neck, my eyes see more. Yesterday I walked, and look what I saw when I peeked between the trees of our neighbors yard.

Does this look like paradise?

Does this look like paradise?

An elderly man walking his dog saw me taking this picture. After his dog loved on me and we shook hands (the dog and I), the gentleman told me that I really should see the rest of the garden. He said I should just knock on the door and the guys (Ken and Dennis) would be happy to show me around. My hubby stopped to talk to them a while ago so I think this will be on my agenda one of these days.

But back to walking. I don’t walk far in distance, about one half to one mile a day, but I’m gone a long time and return with lots of fun pics. Some of them I even keep and use.

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Buds and flower hanging in a tree.

Chairs on a dock.

Chairs on a dock.

A lone, big, beautiful hibiscus bloom.

A lone, big, beautiful hibiscus bloom.

A sagging dock.

A sagging dock that made me smile.

I took many more photographs but some have stimulated ideas for future posts and I’ve already shown you the mockingbird that serenaded me on this walk. A day without new photos is an incomplete day.

Most days include a lot of time processing photos and blogging. Posting photos with a brief story is a fun quick post for me – and I get quick feedback on my photography. It is rewarding when other bloggers tell me how good an image is or tell me they are seeing improvement in my photography.

Blogging fun.

Blogging fun.

Occasionally I write about life – more accurately, I write about me. It would be presumptuous for me to write about other people’s life because all I can see is the superficial part – the outside, visible part. Writing about my inner experiences with chronic pain, aging body, and changing relationships requires that I draw from my knowledge of human development and to be transparent. Using my knowledge and experience to write is fun, sharing who I am in this moment is scary. I know it is an irrational fear, but it is there every time I click that publish tab.

A favorite evening activity is going to the beach to walk a ways, watch the sunset, and of course take some more photos. This is Easter evening on Naples beach.

Gathering to talk and watch the sunset.

Gathering to talk and watch the sunset.

Spirited ball game - glowing youth.

Spirited ball game – glowing youth.

Peace at the end of the day.

Peace at the end of the day.

And I did have peace at the end of this Easter day. It started with a spiritually renewing religious service, breakfast at our favorite restaurant, and ended holding hands on the beach. Peace in Paradise.

Time Heals

Astronomical Clock

Astronomical Clock (Photo credit: simpologist)

Time heals. We tell that to young people who have had their hearts broken. Sometimes we say it to people who have had tragic losses, when we know how much they are hurting but don’t know what to say to help them hurt less. If we are the one hurting we probably need to hear it, we need to know that the emotional pain will lessen – will get easier to bear. But when we are in the middle of our pain we also want to scream “How do you know? How can you possibly know that this all-consuming pain deep in my gut will ever end?”

The experts on grief say that the only way to find resolution is to face our loss and feel our pain. This is hard work and no one can tell us the best way to grieve because there are so many different factors, such as the type of loss and the personality of the person. The grief following developing a chronic illness (fibromyalgia with chronic pain and fatigue) was a different kind of hard than other times of grief. Developing a chronic condition, especially one that involves pain, seems to changes so much about our lives and our sense of self.

"falling apart"

“falling apart” (Photo credit: Quasimime)

I have heard many people say, on blogs and discussion boards, that chronic illness and pain makes them feel like their life has fallen apart and they have lost their sense of self. I felt like I had lost my internal bearings, my security, something at my very core, something very important, but it was difficult for me to identify exactly what it was. I kept wanting to say that I had lost my self, but obviously that wasn’t true; my self was still waking up in the morning, fixing supper, brushing my teeth, going to the store for a gallon of milk, going to work, having lunch with friends. But I also wrote in my journal that I didn’t think it was an exaggeration to say I didn’t know who I was any more – and this brought tears to my eyes.

What caused me to cry most often was my fear of not being able to work; I wrote about that here. But it wasn’t just “work” work, it was being able to do the work of living my life fully, to be who I had known me to be as a wife and mother and friend and grandmother and church member and aunt and neighbor and… In some inexplicable way I had lost “me” and I didn’t know if I would ever get “her” back.

What does it mean to lose our self? In part it involves losing our ability to fulfill important roles. If we define our self as a parent, we lose our ability to parent, if we pride ourselves on being a caregiver we lose our ability to give care, a clear thinker can no long think, a provider can no longer provide, a hard worker can no longer work hard, a gardener can no longer garden. Sometimes it felt lost – totally gone. Sometimes only altered. Most of the time I didn’t know what was happening to me and this was scary. So much of my life activity was changing – I’ve written about that here.

My fear of so many losses led to a lot of emotional pain. I cried, sometimes so hard I doubled over. I sobbed. And I was angry – really angry. I went through a few months of being numb to the world – of being depressed and feeling the sadness at the back of my eyes. And then I cried some more. This didn’t happen in public, although some of it showed up in the form of more swear words leaking out inappropriately and less time on the outside of my door. I spent a lot of time staring into space trying to figure it all out.

This work of identifying what I was losing, according to the experts, is a necessary task if I was to heal. There was another aspect, however. People who develop chronic illnesses frequently feel defective. The loss of physical ability made me feel diminished, like less of a person. I worried about whether other people, my husband, family and friends, would still like me. After taking care of myself, I didn’t feel like I had anything left to give so why would they want me in their lives. From my journal:

UP 050

I looked at the cows at the farm today and was struck by how boring their life must be. All they do is eat and poop and sleep and eat and poop. I wonder if I am struggling with whether my life has any worth if I can’t be productive, if I can’t do for and give to others. Radical thought: Could it be possible that the sole purpose of my life is just to enjoy being alive? Lord, what do you want from me at this point in my life? Your second greatest commandment is to love one another. What does love look like when I have fibromyalgia? Does how I love change because I am sick? There is a flip side of this. Does being sick change how I let others love me? Does being sick make me less loveable? This question has some emotional kick.

Becoming aware of my fears, bringing them out into the light of day and rational thought, made it possible for me to begin to manage them. But getting control of my fears and feelings of loss wasn’t enough – I also longed to find a part of me that still existed. I began looking for evidence that I still had worth and had the same core self even though I felt vulnerable and my life felt uncertain.

Our beliefs about ourselves, our sense of self, are formed and transformed within relationships with others – what others mirror back to us (for a review of the extensive literature on this see Mikulincer & Shaver). I knew it was important to balance the negative thoughts and feelings I was experiencing so I looked for validation of my worth from within my relationships. I needed to reassure myself that the people in my life could see worth in me even when I felt defective. Here is a list I wrote in my journal:

  • My husband still loves me and desires me.
  • A valued friend is always eager to have lunch with me and understands the impact fibromyalgia is having on my self-esteem because of having Graves’s disease last fall. She treasures me for all else that I am. She wants my help in picking out quilt fabric.
  • Another friend was excited to see me and wants to have lunch with me on Monday. She also told me my suggestions for teaching her pharmacology course were very helpful.
  • Our long-time friends still want to get together for dinner and cards every month.
  • An esteemed administrator said she has missed having me on campus. She also said she really enjoys my insights into the books we read for book club.
  • A colleague who works under me said I am missed and my sabbatical has just started.
  • A friend sought me out at the picnic last weekend and really seems to enjoy how we kibitz with each other.
  • Another very capable colleague/friend said she enjoyed having supper with us and believes I can accomplish the program expansion we are going to propose. She loves the colors I chose for my living room.
  • A newer church friend seeks me out and has invited us to two different events.
  • A long-time friend asked me to run over to their house to give my opinion on their living room decorating.
  • Three different people went out of their way to say hi to me when I was on campus last week.
  • A colleague said she appreciated my encouragement and insight into starting her Ph.D. program.

I made these lists in my journal several times over the next few years as I was struggling to find emotional healing. They were an important way for me to find meaning and re-define myself. I was looking for a new way of living that didn’t include the sick role but instead had integrity. I was struggling to continue my life history, my story line, to include living with a chronic illness but also to re-member who I was; to put myself back together. Parker Palmer wrote these powerful words that resonated with what I was experiencing.

Re-membering involves putting ourselves back together, recovering identity and integrity, reclaiming the wholeness of our lives. When we forget who we are we do not merely drop some data. We dis-member ourselves, with unhappy consequences for our politics, our work, our hearts.

A large part of being able to continue my life story was figuring out how to connect who I once was with the person who now has limitation due to FM. Although the wonderful people who are a part of my life help to define me, I also knew there was a core me that I didn’t want to lose but no longer knew (or remembered). I was searching for some continuity of me. Here is a journal post from the third year after developing FM:

 I found a picture of me when I was about 2 years old that delights me. When I look at the picture, I see myself now. That little girl striking a pose is so “me.” There I stand, looking up at the giants, with my feet firmly planted, my hands on my hips, training panties on, one sleeve pulled up, a smile on my face, and a goofy but cute hat on my head. (Personal Journal, 2007)

I hadn’t lost me after all; I just had to look way back to remember who I am. And knowing who I am on the inside gives me the courage to continue the work of emotional healing and maintaining wellness while living with a chronic illness. Yes, time heals.

Here are some bloggers who have impacted on my life and my healing in ways that relate to this post, at least somewhat closely. They are expressing their reality, and in many ways also reflecting mine. Maybe they will bring some emotional healing to you. Together we will make sense of physical and emotional pain.

If you have posted on a related topic or we have inspired a future post, please feel free to leave a link to your blog in a comment with a sentence or two describing your topic.

Doctors Not Taking Pain Seriously

do you have chronic pain?

do you have chronic pain? (Photo credit: Kate Tomlinson)

So often I hear that people go to doctors and the doctors don’t take their pain seriously. I also know that most doctors are afraid of prescribing narcotic pain medications for people who have fibromyalgia. As I have been looking for a new doctor, one that I went to said that he would be willing to work with me to keep symptoms controlled but he doesn’t prescribe narcotics for people with FM.

Here is a link to an interesting article by a doctor who experienced chronic pain after a car accident. His experience with other doctors led him to change how he practiced medicine.