I just got off the phone from a wonderful radio chat with Lisa Copen, as one of 20 seakers for the free National Chronic Invisible Illness Awareness Week virtual conference. This was my second year to experience the blessing of sharing for NCIIAW - feel free to listen to last year's program on infertility, medications, chronic illness and the desire for motherhood at http://harvestinghope.blogspot.com/2008/09/blog-talk-radio.html
This year we were talking about Coping With Crisis on Top of Chronic. I had the chance to share the first half of my notes for today's talk back in August and wanted to post a few more points here today. If you haven't had a chance to listen yet, please take an hour to join Lisa and I at today's archived show:
http://www.blogtalkradio.com/invisibleillnessconf/2009/09/15/Coping-with-Crises-on-Top-of-Chronic--Chat-with-2-Gals-Who-Understand
(Note to listeners who are currently facing infertility, Lisa and I are both after-infertility moms, her through adotpion, I through childbirth, and there are some references to motherhood, including the final caller who asked about deciding to have a second child while facing chronic illness.)
As HarvestingHope.blogspot.com was the only website address that was given out during today's radio interview, I also wanted to direct you to my sidebar where you will find links to several of my other websites and/or blogs. A few to highlight are:
Hannah's Hope is my book website where you can read a free chapter of Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss and learn about other infertility and loss support resources.
InfertilityMom.blogspot.com is pretty much my "everything" page and certainly my most personal blog. It's a slice of just about everything in my life from reflections on infertiltiy and loss, to the joy of motherhood after infertility. I talk about homeschooling, and writing, and work from home businesses. Here I share more details about my personal health journey in ongoing journal format, in contrast to the more devotional and slightly one-step-back from my ongoing personal struggles that tend to be more reflected here at Harvesting Hope™. And I love to toss in some "just for fun" stuff there, like the latest contest I'm entering or occassional give-aways from me. If you want the whole package and get to know the real me with the ins and outs of my daily heartbeat, InfertiltiyMom.blogspot.com is the blog you will want to follow.
Inner Beauty Girlz is the blog I referenced on today's radio show when talking about finding a passion. It started as a little place to explore my own curiosity about natural and affordable beauty alternatives and also to journal and reflect on God's call to make myself beautiful in spirit and how I can take things I learn about caring for my body and apply them to my thought life and attitudes.
I am a consultant with both Affordable Mineral Makeup™ and Gurrlie Girl™ Christian Jewelry so I also use this blog to post product information, discounts, specials and give-aways along with my beauty hits, tips, tricks and devotional reflections.
As a quick review, my first three tips for Coping with Crisis or Chronic (click here for detailed explanations of each) were:
1. Quiet Time
- non-optional daily priority, both to refresh body and spirit
2. Laughter is the Best Medicine
- seek joy even in dark seasons, not "Polyanna theology," but "Apostle Paul theology" as found in Philippians 4
3. Support Resources
- it is critical to find, or make for yourself, a support network
Added to these, my other three tools in my survival tool belt are:
4. Find a Passion
- When chronic illness hits, it's like a rug is pulled out from under my feet. Everything I have known and simply accepted is turned upside down. Things I took for granted in the past can no longer be presumed. Skills, abilities, perhaps even joys and interests, are suddenly lost. For example, I used to do counted cross stich constantly, but when CFS hit, I no longer had the strength in my arms to hold and stich, the mental focus to count and properly follow a pattern, nor the ability to focus my eyes on those little squares without triggering a migraine. This may seem like a small loss, but it was something that had meant a lot to me and brought me much pleasure for many years, then suddenly it brought only pain and frustration. Not only did I loose something I had loved, but because of my illness and the need to lay in bed for hours on end, I had much more "time on my hands" than I knew what to do with and what I normally would have turned to as a hobby wasn't even an option.
Part of the grieving process of chronic illness is learning to let go of what I can no longer do. But on the flipside, sometimes I am forced to explore new options I might not otherwise have ever considered, and this can be a blessing. I turned to writing, initially sending long letters to my fiance who lived far away, then I began journaling in earnest, and eventually I began writing articles for publication. Had I not lost my favorite hobby, I might never have ventured onto the internet and found a world of support resources, nor written a book, nor become a blogger.
My health struggles themselves led me to search out healthier alternatives for personal care products such as makeup (since I began having allergic reactions to all the chemically based brands I tried, even "hypo-allergenic" lines) and that led me into a whole new nitch of writing on beauty, along with leading me to become a consultant with companies I found to fit my needs. So while I'm too sick to work outside the home, the hobbies that my health unfolded before me have become a small source of "egg money" income that allow me to occassionally help out with a few little extras for our family budget and I find fulfillment in pursuing my new passions in the process.
5. Be Gentle with Myself
- Others may not be, so I need to be! There will always be those who don't understand, but I am the one who lives moment-by-moment with the ebb and flow of my body's demands. I can get caught up in all the "shoulds" that other people put on me, or I can be honest with myself about my needs and abilities and give myself some room to simply "be".
In my case, my doctor has made it very clear that if I push myself as hard as I can just because I have something left to give, that my body will never fully heal. I have always had a very driven personality and want to go and do and give. But if I cannot give myself permission to make my own needs a priority, I'm headed for permant disability and continued decline that will not be able to be reversed.
Putting this concept into practice can be more painful than I wish it were. For instance, I have a heart for anyone who may be lonely or hurting. When a new woman joined church recently, she commented that she had not been able to really establish friendships at her last church, so it became personal to me to see that she felt welcome and found a sense of community quickly. She readily accepted my invitation to come over with her kids for the afternoon, though I had to postpone it several weeks due to ongoing health issues. She then exchanged the invitation and generously watched my kids for several hours while I went to the hospital to be with my parents for my mom's surgery. Since then I've not only been involved with my mom's recovery, starting a new homeschooling year with my kids, but have had a lot of medical procedures, appointments and endless medical phone calls to keep up with, including a trip out of state to see the only specalist my insurance would cover.
I simply find myself too exhausted to reach out right now. She's left the ball in my court with "call me if you want to connect," and my heart aches that she may feel like I don't want to befriend her, when the truth is that I would like nothing more, but simply have nothing to give right now. I have vaguely explained my health to her and will do my best to explain my heart and my physcial reality in more detail soon (hard topics to plunge deeply into with a brand new friend), but in the end I will simply have to accept my limitations and realize that we will have to "do friendship" on the terms by body sets forth for us, and I'll have to be OK with that reguardless of how understanding she may or may not turn out to be.
6. Let Go and Let God
- All of the above tools ultimately point to one simple fact. I can't do it all! I must let go of unrealistic expectations of myself (and of others - it's easy to become disillusioned when others I depend on or place my hopes in fall short of my expectiations) and look fully to God as not only the source of my strength, but the one who gives wisdom and directs my steps moment by moment.
He never has unrealist expecations of me. He is always gentle with me and knows, truly understands, what I face moment by moment.
My job is simply to do what He calls me to for this moment and leave the rest to Him. Some days that may simply be getting through the day without giving into utter despair that I can't raise my arms with enough strength to brush my hair. Some days that may be trusting him that if my new friend needs friendship that I'm not equiped to give, that maybe I'm instread called to pray that God will meet that need for her through someone else.
When recently undergoing some very frightening treatments that had me reflecting on my own mortality, I realized that I was not really handing the reighns of my life to God. I had written love letters to every family member and placed them in my journal where I thought they would be found if I should die. I was peaceful about the prospect of death for my own sake, but I was a ball of nerves for the sake of my husband and children, grieving for them about what they might endure should I die. And then it occured to me of how arrogant I was being, to say I could trust God with my eternal future, but then actively distrust Him to have a perfect plan for my husband and children!
Just simply realizing that a God big enough to hold my eternity in His hands would have a great plan for my family too was a significant "letting go" moment that marked a wonderful return to a peaceful heart for me. As it turned out, I was His ongoing plan for my family and I had let myself get all worked up for something that never was really even an issue, but I pray that I will hold onto that life lesson next time I'm tempted to try to micro-manage God's plan rather than just resting in Him that He will take care of every need, big or small.
I would encourage you to take advantage of any or all of the 20 Invisible Illness Week seminars available to you this week, and archived for ongoing listening, at http://www.blogtalkradio.com/invisibleillnessconf. Please log back in here at www.HarvestingHope.blogspot.com again on Saturday as well, for a special post on Hope in the Shadows as part of the (In)Courage blog tour.
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