7.20.2012

The "Chronic" I Want to Be


We had a big weekend, and Sunday afternoon I collapsed into rest mode. I thought I'd be okay if I got off my joints for several hours, but Monday I was even worse. My knees were on fire, my hip was in such pain I was nauseated, and I had no energy. Some with lupus and other autoimmune diseases call themselves "spoonies," in reference to the Spoon Theory written by lupus sufferer Christine Miserandino. In the theory, she attempts to explain to a friend how energy works when you have chronic fatigue caused by the battle of chronic inflammation and pain in a body like ours. She explains that at the beginning of every day you are given a handful of spoons and each task takes one or more spoons. Some days, she elaborates, you wake with only one or two spoons. It's those days that are killers, because you have to make deliberate choices about what's most important. Do you want to exchange your one "spoon" of energy for a shower? Or would you rather use it for running a load of laundry so your family has clean clothes to wear? 

Let's just say that Monday and Tuesday I was running on zero spoons. I rested as much as I could, around taking care of my daughters, and tried to fight the mama-guilt and the worry that comes with flares. I coached myself that a flare does not necessarily mean "new normal." Last winter, for example, I was in a long flare. I began having new symptoms like nerve pain down my leg. I got a cane and used it off and on. I spent a lot of time in my bed. I developed a new level of appreciation for things like electric blankets, wedge pillows to prop myself up, pajamas and pretty-smelling lotion. I worried a lot that my disease, Ankylosing Spondylitis, was progressing and that this would be my "new normal."


But finally, eventually, the flare eased, and I was back to my "old normal" -- battling pain, stiffness, low-grade fevers, and fatigue regularly, never feeling "good," but walking without the cane, rarely having the nerve pain, and not in bed nearly as much.

This week I worried. I worried that I, in this condition, am not Good Enough. I worried that my fatigue might overpower my will power, and wondered what life would be like with never ending Zero Spoon days. I worried that I would not be a good enough mama, a good enough (homeschool) teacher, a good enough anything.

Wednesday I was still exhausted and hurting and limping on that hip and those knees, but I had more spoons in my bouquet and I was able to run a bit of laundry and vacuum and tidy up the house. We had dinner with friends, although I didn't have spoons left to apply makeup or do anything with my hair or change out of comfy lounge clothes.

Today I made it out of the house for almost three hours. I took my girls to the park to enjoy the warm sunny day.

We did a couple of errands including picking up food for our kitten Mitzy, and checking out armloads of books and DVDs from the children's section of the library.

We came home and I finally made good on something I've been wanting to do with my girls for a couple of weeks: bake cookies.

Natalie helped me unwrap sticks of butter. Both girls helped me roll dough in sugar. We baked till barely golden brown and enjoyed a couple with squaty glasses of milk.


We waited till they all cooled and filled up our new-to-us adorable Goodwill cookie jar adorned with a kitty, bunny, bear and mouse.

By the time the oven was turned off, my spine was screaming in pain. I was almost cross-eyed from fatigue, but so happy to have mastered a day the Old Me did regularly. So happy to make memories of park fun and cookie baking with my girls.

I don't know what tomorrow holds. I don't know if at some point, the New Normal I fear will catch up with me. But I know that today we lived and loved and did what we could. I also know that without resting for a few days this week, I wouldn't have been able to do today. So this isn't a post to say, "Go ahead and use the energy you don't have because the memories will make up for it." No. We must become wise. We must know our bodies, know our diseases, know our triggers, and know when the pay off is worth it and when it's not.


Today I'm thankful for the energy to bake cookies with two little girls who call me Mama. And if I don't have any energy tomorrow, I will try to remember not to worry. I will do what I must and rest when I can and be thankful for two little girls who cuddle with me when I'm "down" for the day.

I will keep working on releasing expectations, and separating my sense of worth from what I am able to accomplish. Spoons or no spoons, I will be aware of what I am grateful for. Because I fully believe that what we are grateful for becomes enough, and gratitude creates the joy and peace we crave.

When all is said and done, I want people who knew me to say that more than chronically ill, more than chronically in pain, I was chronically grateful.

That's the kind of "chronic" I want to be.

7 comments:

  1. And that is the chronic I see, over and over again. I truly feel blessed to know you! I hope you have more spoons today. However many you have, I wish for you that they be beautiful ones.

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  2. People suffering from chronic depression have so much of what you have described. The guilt and shame from not living up to our expectations....
    "I will keep working on releasing expectations, and separating my sense of worth from what I am able to accomplish."
    Thank you.

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  3. Your are an inspiration...thank you for your honesty - and encouragement...

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  4. Catherine TidmanJuly 20, 2012 at 9:07 AM

    You are AWESOME!!!!!!!!!!!!!!!!!!!!!!! And,I admire and love you to bits and pieces.Much LOVE,Jennifer. I am "chronically" grateful to have met you and your beautiful spirit<3

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  5. It is just so comforting to know you. That's an odd thing to say, because as grateful as I am, I would rather we NOT have this in common - for your sake and mine. But we do...and I am thankful.
    That "new normal" fear....I would explain it more as a panic for me. I have to work very, very hard not to panic that those extended flares are not the new me. I worry every day about that. And in the midst of it, I tell myself all kinds of stories. But I, like you, have so far been fortunate to come back to the old normal...which is a pretty tough life to say the least, but I've "figure it out" to a point that is manageable. This will be the first year (if I make it to Aug. 5) that I have not been in the hospital...a lot. So I truly am thankful for where I am currently at - pain, fevers, nausea, migraines, neuropathy, cognitive difficulties, GI troubles and ALL!
    I like your comment, "cross-eyed from fatigue" because I have used literally those exact words. Supper time is a never ending battle for me. Even on my old normal days, by the time we get to the evening meal I am out of spoons. It really does not matter how much I rest during the day, the spoon theory seems null and void anytime after 4pm. I just don't have it. Unfortunately, this is when my family all comes home. The kids get home from school, my husband comes home from work...and they are all tired and hungry. Making the evening meal (which I have always loved to do) is very important to me. But I would do just about anything not to be sick during this time. I can hardly stand up. And the fatigue is so great that I literally - truly - cannot see well. I'm not sure what happens, if it's purely fatigue or if it's increased inflammation or what, but my eyes get very, very blurry. At times I feel like I cannot even differentiate the food on my plate. Yet, it's during this time that I want to visit with my family about their days - it's my allotted few hours with the people I love. Ugh. I told my husband just this week, I wish our big meal together was always around 11am and then everyone ate on their own for supper!
    These are the pieces of our life. And you are correct, letting go of expectations not only creates a more grateful heart, it has an impact on how things actually play out. We impact our lives by the attitudes we keep, no doubt.
    Thank you, again, Jennifer. Thank you for using some of that precious energy and time away from your girls to write these posts. They mean a great deal to me.
    Blessings, Theresa

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  6. When profound fatigue first struck me in high school, I learned very quickly that chronic, intentional gratitude was the ONLY way I could make it from moment to moment. And yet, after all these years, I still struggle constantly with the balance of spoons versus living. External forces beyond my control have intensified that struggle. I still think to myself that maybe if I just TRIED, the energy would be there. Not how it works. So this post made me weep because of all the times I berate myself for not doing enough, for all the times I try to burn into tomorrow's spoons and end up wiped out for days. I can't bear the thought of merely surviving. Gratitude is the only way for me to breathe and be alive. Thank you for this post! Love you!

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  7. I have AS,Fibromyalgia and am bi-polar. I am amazed, amused and in awe of Jennifer's writings. What a strong inspiration she is to anyone who knows the limitations of chronic illness. This is the only blog I follow...Blessings to You Jen & your Family....Cathyann

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