I Don’t Miss Me Anymore

It was a long time coming and I’m not sure when it happened. I don’t miss me anymore. This is a strange thing to say but I know the frightening feeling that comes from loosing my sense of who I am. I know the sadness that comes from not believing there is enough left of me because of the changes in my life due to contracting a chronic condition. I really did miss me – but not any more.

Those of you who have been following my blog for a while know it was originally named “I Miss Me, Too” because that was what I wanted the title of my book – the one that I’m not writing any more – to be called. Here is what I wrote on my ‘About This Blog’ page when I started blogging. It explains how I came up with the title.

One day during that first year after being diagnosed, I was in the kitchen with my husband of 40 years. He stopped working, looked at me, and said that he knew I couldn’t help it but he missed me. He had tears in his eyes. My eyes welled up and I said, “I miss me, too.” We embraced and cried together.

I feel like I turned a corner, when I stopped missing me. How many times have I said that? Whenever I started a new computer file for my journals, the first entry begins “I feel like I have turned a corner.” There are 10 files of journals that cover 8 years – so ten times I had turned a corner. I guess you could say I’ve been around the block a few times. This seems to be my way of explaining that I made a leap of progress towards my emotional and physical healing each of those ten times – now eleven.

Those leaps of emotional healing didn’t happen suddenly. It was more like a long slow, continuous process and what happened was that suddenly I realized that I felt different. Change takes a lot of work. We have to have a vision of what we want, and maybe observe others and think about what we would like to be, and we need to practice actually being like our new vision. Sometimes we need to look at our pasts, confront old ghosts, heal old wounds, let go. Sometimes we need to acknowledge our sadness and anger. It takes conscious effort and courage and perseverance. I have been working on it for nine years so far – taking many small steps and spending lots of time on plateaus where I prepare for my next step.

I began to feel the shift to feeling more whole when I started my blog and became a part of the blogging community. Focusing on how to use a new camera and learning how to take interesting photographs allowed me to connect with a long neglected part of myself. Blogging gave me a platform for sharing the emotional turmoil of having fibromyalgia by posting rewrites of portions of my not-to-be-published book.

Writing for the blogging community was much more rewarding than writing for publishing and thus brought a dynamic, evolving meaning back into my life. My focus began to shift from sharing my illness to wanting to share the life I was living – through photography and story. I discovered that I could touch people’s lives and my life was enriched through the life stories of others. It feels like I am on a shared journey of life that is being recorded through our blogging.

The second event that seemed to give me a new sense of self was the long camping trip to Newfoundland. This trip shifted life for both me and my husband. A while after I was diagnosed, we were talking and he went into that funny mood that says he is thinking about something that needs to be said but he doesn’t want to say it. He finally confessed that he was feeling guilty because he believed I got sick because he “dragging me” on a three-week camping trip to the Canadian Rockies. It is true that I started having symptoms about 6 weeks later – but proximity doesn’t prove causation. He let go of the guilt but still had to live with the fact that our life was changed.

Lake Louise

Lake Louise (Photo credit: Wikipedia)

Our trip to the Canadian Rockies was the last traveling camping trip that we had taken and the trip to Newfoundland was similar in length and work. I had some anxiety about doing the trip but I really wanted to go and knew how to prepare. He had a lot of anxiety because he feared I would get really sick a long way from home or wouldn’t be able to participate in our travel activities. After we returned, he told me that he was really surprised that I had done as well as I had. Our eyes connected and he said that it felt really good to have me back.

I guess I am back. I’m not the same because we both know that we had to do things to take care of me – but I was alive and vibrant and involved on the trip. I worked along side of him and carried my half of the work load – almost and most of the time. It was similar to our Canadian Rockies trip, but I was different. We have adjusted to the changes in me so I can be like I used to be; even though I’m not. Maybe we don’t remember what I used to be like, but he isn’t either. In any case, we have found a way to live life fully, together, that is rewarding for both of us.

This triggers silent tears because it was hard and it wasn’t always clear that it would happen. I spent a day or two feeling sorry for myself. Not in a bad way as I would if I felt like a victim. No, I felt sorry for myself as I would feel towards someone who had gone through a really rough time. I felt sympathy and compassion towards myself. I feel compassion and love for my husband who had to endure all that I have been through but didn’t always know how to handle it. But then neither did I. It was scary and hard.

I have read a lot about grief but I have never seen anything written about the grief we feel after going through a time of healing. When I was a therapist I frequently would sit and listen to people express their joy after making changes in how they thought and felt and the big difference it was making in their life. Then they would grow quiet and their eyes would get glassy. I knew at that moment they needed to lick their wounds – they were remembering how hard it had been, how hard they had worked, how much pain they had felt as they went through the healing process. I am feeling that way.

At the same time, in a strange way, a hard to define way, I am afraid of stepping into the future. I had learned how to live with my emotional pain and sadness. I had gotten used to not knowing who I was. I had adjusted to not being able to do a lot and my husband didn’t expect me to be able to do most things. What if he forgets that I have limitations? What if he expects more from me than I can deliver? What if this living life fully, together, doesn’t last?

Can I maintain whatever it is that I’ve found – forever? I need to remember that this is a new day – singular. All I have to do is live today. I planned for my tomorrows, but none of my futures were improved by feeling anxious about them. I can plan for tomorrow, but I need to live today.

On this new day I may experience pain and fatigue and not be able to do much of anything. On this new day I may have lots of energy and be excited about the work and play I have planned. I am still overdoing on good days, and still paying for it with a day or two of not feeling well. I know how to take care of myself and I’m usually satisfied with moderation but also willing to pay the price for pushing the boundaries.

I have found ways to exercise my brain and body. I have found multiple communities in which I can nurture and be nurtured. My husband and I have settled into a fun and comfortable relationship. I can face my God and see her smiling at me. I don’t miss me any more because I have found a way to live that has integrity.

If you have written a post that expresses similar themes, please leave us a link in a comment. I would love to have us connect in this way.

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.

http://megansayer.com/2012/09/14/hearing-voices/

http://throughthehealinglens.com/2012/09/22/savasana/

http://withreverence.wordpress.com/2012/09/20/turning-an-external-encouragement-in-internally-realized-strength/

http://theretiringsort.com/2012/09/20/leading-a-textured-life

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.

The Sick Role: Restoring Our Health

network of diseases

network of diseases (Photo credit: DrJohnBullas)

In a previous blog, Being Sick & the Sick Role, I shared Parsons’ characteristics of the sick role that included: a) others recognize that the illness is involuntary, that getting sick was not the intention of the person who is sick; b) when people are sick they are exempted from their usual work, family, civic, and other obligations; c) they are expected to not want to be sick and to do what they can to restore their health; and d) are expected to seek competent help and to cooperate in the process of trying to get well.[i]

These characteristics were identified to describe how life is expected to change for people who develop an acute illness and I believe that having a chronic illness leaves us in a very strange position of both needing to use the sick role, but also needing to strongly reject it. In this post I provide my perspective on the aspects of the sick role that involve not wanting to be sick, needing the help of others and working with the medical community to restore our health.

The first, not wanting to be sick, seems self-evident to anyone who doesn’t feel well for whatever reason. I have to admit, in my BS days (Before Sickness), there could have been a few days when I wished I was sick so I didn’t have to go to work, or exaggerated a cold so I could stay home. But I don’t want to be sick to the point that I have to give up being productive. I don’t want to play hooky from life. Especially not forever.

Our culture values independence over dependency (especially for men) and achievement through work, especially paid work. But even in family relationships it is expected that everyone will pull their own weight based on age and ability. When we become sick, the sick role allows us to become dependent on others and exempt from work and social responsibilities for the duration of the sickness without being judged – but we do have the obligation to work towards getting well and returning to prior responsibilities (Kassebaum & Baumann, 1965).[ii]

Physician treating a patient. Red-figure Attic...

Physician treating a patient. Red-figure Attic aryballos, ca. 480–470 BC. (Photo credit: Wikipedia)

The sick role has the expectation that we will seek medical help so we can be treated, get well and return to our normal routines. This is where a chronic illness is much different than an acute illness. I had always gone to a doctor expecting to receive a cure or assurance that I would get better if I just rode it out. With a diagnosis that means chronic, I wrestled with what it meant to be dependent on medical help in a new way:

I don’t know how to deal with the symptoms without my doctor but also fear becoming dependent. I know this is irrational because when I feel good, I have no desire to sit in a doctor’s office. I think I can trust myself to know how to let my doctor help me while I learn how to manage my symptoms on my own. I also keep telling myself that I have a very large group of friends who love me as a “well person” but also acknowledge what I am experiencing. I spend time with them doing fun things and getting my needs met so I don’t have to depend on being sick to get attention.

I was also wrestling with whether my constant need for my doctor’s help was turning into a need to be sick. I had never been a big fan of doctors and had only needed to see one a couple of times a year at most but when I was in so much pain and was so fatigued, having a doctor help me, take care of me, felt very good. I had to keep reminding myself that I didn’t want to be sick, but I did need help in finding treatments that would help me regain my functioning. If you are reading this I can believe that you don’t want to be sick either.

The biggest challenge for me has been to figure out how to be functional with a body that is dysfunctional. How could I be sick forever and have a normal life? That was a hard sentence to write because it means that I will never be able to assume my prior responsibilities. I needed to figure out, and continue to re-figure, how to live with greater dependency, how to be content with new goals for achievement and work, and how to be content with a different level of involvement in the activity of family.

This is why I believe that the concept of “striving for wellness” at the same time as we are coping with the symptoms of chronic illness is very helpful. Here is how I described this sense of wellness in my journal a little over a year ago:

Nola Pender[iii] 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!

This sense of wellness didn’t come quickly or easily – and I didn’t always do it gracefully. I fought and I grieved and I fought some more because I refused to be sick and I didn’t want to admit that I had to give up pieces of my life. Eight years later I know my body doesn’t work right (I’m sick?) and I’ve made a lot of changes – I’ve settled into a new normal that feels like a sense of wellness. The new doctor I’m seeing has as the first question on his intake form, “Are you in good health?” I circled yes.

In future posts I’ll share how my life is different but fulfilling – and try to explain how it happened.

I would love to hear your thoughts on how you have found a sense of wellness, or wholeness, while coping with a chronic illness or chronic pain. Or maybe for you it just doesn’t seem possible – I would like to hear about that too.

[i] Parson, T. (1951). The Social System. Toronto, Ontario: Collier-Macmillan Canada, Ltd.

[ii] Kassebaum, G. G., & Baumann, B. O. (1965). Dimensions of the Sick Role in Chronic Illness. Journal of Health and Human Behavior, 16-27.

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

Trust Revisited

I posted a linked to Meryl Spiegel’s poetry and photo on Trust last week but I haven’t been able to get it out of my mind. Having a chronic illness impacts on our relationships in so many ways and at the same time our relationships become so much more important to us because of our need for added support. We need to be able to trust.

We need to be able to trust that people will believe us when our pain is invisible. We need to be able to trust that people will listen when we need to talk but we also need to be able to trust that people will love us enough to gently tell us when we need to stop whining. We need to trust ourselves enough to be able to hear.

We need to be able to trust that others will stand up to us and tell us we are being mean when we lash out because we don’t feel good.

We need to be able to trust that the people who love and care about us will be firm in their encouragement when we don’t have the strength or courage to do what we need to do to feel better.

Meryl says this all so well. Thank you.

Recovery Thru My Lens

can I trust you
to guide me
run beside me

can I trust you
to stay on track
allow no slack

can I trust you
to listen up
not to duck

can I trust you
to stand your ground
not let me down

©Meryl Spiegel 2012–All rights reserved–No reproduction without permission

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Work & the Sick Role

I have already posted on Being Sick & the Sick Role that lays the foundation for this series of posts. I also posted on how we don’t choose to be sick, don’t look sick, don’t want to be sick, and how tricky it is to help people understand how we are sick so we can get the help we need without having them treat us like we are sick. You can find that under Who Volunteered Me to be Sick. I have a lot to say about work and chronic illness so I am breaking it down into several posts.

27/365: fractured reality/grace under pain

27/365: fractured reality/grace under pain (Photo credit: kira.belle)

When people have an acute illness and take on the sick role, they are exempt from the usual work, family, community, and other obligations while they are sick. When we get pneumonia or the flu, or have surgery, we can take some time off and in fact we are expected to do this to aid in our healing. What does it mean when we have a chronic illness where healing probably won’t happen and remissions may not last long? What does chronic and possibly degenerative mean for our responsibilities to our families, our work both within and outside the home, to our community and church work? We can’t take a few weeks off, or even a few days, to get better because chronic means forever. Continue reading