Lupus and “Les Miserables?”

“There’s a grief that can’t be spoken, there’s a pain goes on and on…” Those words from a song in the musical/play/movie, “Les Miserables” resonated with me this morning. In 30 seconds I made a decision which will likely change the way I experience life.

What was this decision? Well, it revolves around how I experience losses. The decision I made was to feel the loss and the grief; without allowing them to penetrate everything I do for the rest of my life.

For example, because of my illness, I am no longer able to be as active as I used to be,  and too often I sit in a chair too sedentary for my own health. Rather than realize that fact that there is little I can do to walk and be more active, I’ve started spending time thinking of ways to overcome my too sedentary lifestyle. I need some exercise to tone my muscles and heart ad lungs.  You’d be amazed at how much exercise can be had in a seated position in a chair with cans of soup and bands!

In my new life, there’s no room for toxic emotions, like anger. They only pave the the way for permanent feelings of self-pity. Many of you have heard me say that self pity and getting on our ‘pity-pot’ is alright. It is, but we need to give sitting on out ‘pity-pot’ a  ‘statute of limitations. We do need to grieve our losses, then get off the pity-pot and move forward; realizing that just because we grieved our losses, the sadness, the ache can be with us for our whole lives.

After forty-five years of fighting, ‘tooth and nail,’ refusing to accept the losses that each chronic illness has brought, I finally decided to accept them. It may have been kicking and screaming, fighting tooth and nail; but I accepted. I made the choice to accept my losses and play the hand I was dealt. Inside, I felt so much peace when I decided to stop digging in my heels. And just think; this was all accomplished in 30 seconds, but it represents a change in the way I think, behave; a lifelong change.

But, replacing those dreams creates a void where other dreams went, so now I can look at life as a ‘do-over.’ for all of us with chronic illnesses. Most people don’t have  the ability of trying more than one set of dreams. But, those of us with chronice illness have been granted a second chance in the dream/do-over department.

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6 thoughts on “Lupus and “Les Miserables?”

    • This piece really brought out SPIRITUALITY AND RELIGIOSITY of having a chronic illness and dealing with life’s difficult situations. This musical is one of the most religious and spiritual I’ve seen. Have you seen it?

  1. I do think at times anger needs to be expressed. It’s part of the normal grieving process that anyone with chronic illness goes through. No one should get ‘stuck’ in one area of the grieving process, so constantly feeling anger is not healthy of course. But none of this is a normal life and it’s OK to feel pissed off at times. If you don’t get that out and always repress all anger it’s going to come up in other areas of your life and often in how you do or don’t interact with others. Knowing when and what is OK often needs outside help be it private counseling, group counseling, pastoral counseling, exercise therapy, and a whole variety of various ‘therapy’ forms. Different things work for different folks. I like that you qualified the pity party as having a ’statute of limitations.’ No one should get stuck too long in one overwhelming phase of emotional grief. It’s also important to know that anyone who lives with chronic illness will go back and revisit many times over all the areas in the grieving process. Taking cues from not only your own self but from how others who know you well (both personal and those in a professional sense like councilors, PT trainers etc) is important. We are not always in the best position to realize how we are coming across to others be we in an overly positive mode or a pissed off ‘pity party’ mode. We still have to deal with life outside our chronic illness and integrate with well people all the way along. Certainly no one knows as well as another who also has chronic illness what the range of emotions are like, but those who are close to you who you value their continued support and friendships, we all need to listen to their perceptions of our mood and behavior. Sometimes we need to help explain the why we are feeling this way to others. Keeping open dialog so that who we are comes across to others who are not living in our shoes is so important. There is no world that is only made of of chronically ill folks and we need to remember that. It’s so important to know we have to help ourselves as well as others close to us how best to support us.

    I have had some lousy advise a # of times from professional councilors. I even had a shrink tell me to forget about going for further surgery that I very much needed to have. He was convinced I lived from surgery to surgery at that time he was seeing me that visit. I made a mental note of it and the next visit brought it up to him and how he made me feel. He appreciated the feedback. He said I made him remember that his words can be biting too and taken maybe out of the context he meant them in.

    I find personally for me, what keeps me on the most even distribution of the emotional end is to keep up my exercise routine and keeping healthy diet as well too. When I am in the dumps, a good exercise session even if it’s only standing up and stretching and doing some deep breathing and help me so much. It often takes little to help in my own case get the endorphins flowing that helps pull me out of the angry phase and pity party.

    • We all need to determine for ourselves how WE are going to approach grief, anger, the misery, the sadness that goes with having a chronic illness. Two people may have been ‘robbed’ of the same thing, and EACH experiences this loss in a different way. Someone who has just one loss may have a TOTALLY different experience than another and one who experiences loss all the time may (OR MAY NOT) have the same grieving patterns as someone else who experiences loss for the first time.

      Our grieving a loss falls into a pattern, which may be different from situation to situation from person to person. A maladaptive coping style develops when one ‘hops’ on a pity pot (“woe is me,” “I feel sorry for myself”) and several years later is still on the “pot”

      An adaptive style is an intermittent ‘pity pot’ stay to ‘lick one’s wounds’, but then to GET OFF and when we get off, there’s hope that we feel refreshed and ready to try to rejoin life.

  2. Big decision! One I’ve had to make and it does work. I can more easily focus on all that I CAN to. And I look around and it’s easy to find people worse off.

    • Lois, how to cope is one tough decision. How long do I stay on that pitty pot? How long is too long and how long is not enough? And how long is JUST RIGHT? There’s no guidebook I’ve found; it’s different with each situation.

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