the Lymie Diaries: Cindy's Guest Post

May 21, 2015


I am so excited to have Cindy share her heart today about her experience with Lyme Disease. Cynthia Dainsberg, RN, FCN is the author of "Practical Care Tips for Those in the Lyme Fight- an interactive Care Handbook for Those Battling Lyme Disease and Other Chronic Conditions, with Special Notes to Caregivers", which is available through Amazon. She is such an encouragement to me personally and I am so thankful for her willingness to share with us today!
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Taming a Wild Ride

In a few months, I will be ‘celebrating’ four years of treatment for Late Stage Lyme Disease plus 5 Co-infections. It was a very long road to getting diagnosed, and it’s been long road in treatment.

Am I well? No.  Am I better? Yes, and no. Yes, many of the symptoms I’ve experienced have abated, or come less frequently, and with less intensity. Still, as with many of you, as the layers of Lyme are dealt with, in addition to keeping Lyme at bay and dealing with the body systems it broke… other issues are uncovered and must be addressed. (MCS, Mold Toxicity, life-threatening allergies, food sensitivities….) 

Much of my journey has thrown me onto a perceived intense internal roller-coaster of experiences, and feelings.  Thrilled with a day there is enough energy to do something fun, besides what ‘has to be done in order to be and do’- a time to be a life participant.  Other days are arduous, with duty magnified and consuming the day- where I feel I am just working so hard to do the very minimal to survive.

Interestingly, the days in which I find myself doing life in horizontal mode, still take me by surprise, and they cause me to get down and to wonder how long it will last this time to recover, what will I miss this time…  I tell friends I’m down today; they respond with a cheery note and get about their lives.  I realize my being down isn’t anything new to them; it doesn’t take them by surprise anymore.  How nice it would be to hear, “Wow, it’s happened again?  I’m sorry to hear that- let me do (something) for you to help.  And, how can I be praying of you?”  Those responses are rare now. As I’ve said, it’s been a long road.

My tendency is to allow myself to passively ride along this crazy roller coaster.  Of course, I can’t change the majority of circumstances- but I’ve come to realize that how I view the ride is the important thing.

Over the past six months, I’ve come across an ancient practice, discipline, called “Consolation and Desolation”. This tool was first written about in the 16th century by St. Ignatius of Loyola in his book “The Spiritual Exercises”.  Practicing these, one can go through their day with more of a birds-eye view of the coaster life, instead of a side-view. It is an especially good way to put-the-day-to-bed, or start-the-day.  

It isn’t so important when it is done during the day, that is personal, but it can be and important tool, which used regularly may help stabilize your ride in the world of chronic illness.
I don’t know about you, but I’m a ‘bad news first’ kinda person- so I will begin with explaining Desolation.  Here is a list by Margaret Silf:

Desolation: 
-          turns us in on ourselves
-          drives us down the spiral ever deeper into our own negative feelings
-          cuts us off from community
-          makes us want to give up on things that used to be important to us
-          takes over our whole consciousness and crowds out our distant vision
-   covers up all our landmarks
 -   drains us of energy

In other words, “What pulls me away from God?  For what am I least grateful? What drains life from me?”

Continuing on with the ‘good news’, Silf explains Consolation as:
-          Directs our focus outside and beyond ourselves
-          Lifts our hearts so that we can see the joys and sorrows of other people
-          Bonds us more closely with our human community
-          Generates balance and refreshes our inner vision
-          Shows us where God is active in our lives and where He is leading us
-          Releases new energy

In Consolation we ask, “What draws me close to God? For what am I grateful? What gives me life?” 

(If you need help with words to express your feelings- just try using your internet search engine and keyboard in “word list, feelings” or “word list, values”.  It can be very therapeutic and cathartic to find just the right word with which to express yourself.)

The questions Silf gives us great direction.  Perhaps you are a journaler, and you can incorporate the practice of answering these questions of Desolation and Consolation in your journal.  Or, you may be like me- a ‘jotter’, making two columns and jotting down a bullet-point list.  Another idea may be to have someone who is close to you, agree to practice this with you verbally- sharing these things together… No matter how, or when you may incorporate this into your daily protocol- I’d encourage you to then follow up your journaling/jotting/sharing with a prayer- handing all of it over into the loving hands our Lord. 

The LORD gives, the LORD takes, He Sees, He Hears- He is trustworthy, and in Him alone is our Hope Secure.  We first must make sure we are secure in Him as we take this wild ride. 
I cannot trust in my circumstances, ideas, feelings- or those of others, to give me hope. But, the Lord Jesus is Hope, and He has indeed proven Himself trustworthy over and over again.  Doing the Desolation and Consolation exercise helps me to be less mercurial, less reactive, and to be more at peace that in all things God is working things out on my behalf, with great depth and dimension, beyond what I can even imagine.   With Him, I can be authentic and honest about all I am thinking and feeling, He is safe with whom to share anything; I can give all these things over into His capable hands…and begin to find more enjoyment in the ride.

Taming a Wild Ride, written by Cynthia Dainsberg, RN, FCN  Author of “Practical Care Tips for Those in the Lyme Fight- an Interactive Care Handbook for Those Battling Lyme Disease and Other Chronic Conditions, with Special Notes to Caregivers”, available through Amazon.com  Also some time Blogger at http://encouragementforlymefighters.blogspot.com/, and on Facebook at Cynthia Dainsberg, RN, FCN 

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Thank you so much Cindy for sharing your heart today! What a beautiful piece of encouragement this is for all of us Lymies and anyone going through a "roller coaster" season of life!!

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