“There is no cure, only managing.”
Dr. Carmella Frazier Mills-Duke Dysautonomic Clinic
Dearest Readers,
Days drenched by rain, trees ravaged by wind, I fold into my raincoat and make my way to my neurologist’s office. It’s a long day. Needed, appreciated, but long.
Each visit grows my appreciation for the chronic illness I carry. I count the gifts of grace as my eyes graze the room.
A man, emaciated and weak brought in by ambulance, a young woman in a wheelchair, too young. Walkers, canes, the broken and weary fill the room. Like me, appointments fill their calendars; the long days drain the energy we hoard for other things. A short walk, a trip to the Library, the ice cream shop, or play time with our family. Doctors and specialists, physical therapy, and ordinary living take time and proper management.
Again, I hear the words, “No cure, only managing.” My resentment for the best medical advice I received has since faded away. Managing my time, my rest, and saying my best yes is how I live my days with abundant joy.
Why Managing Time Works
Most likely you have heard the Spoon Theory, how those with Chronic Illness have been given so many spoons in a day and once they are used up, there are no more. Your body is finished and will fight for rest in ugly ways. We must learn to use our energy wisely.
- I have more strength and stamina to get through my day.
- Finishing your day stronger is more fulfilling than crashing by early afternoon.
- I have more presence and less brain fog and confusion.
How I Manage Time
- Schedule with a frugality like no other. I am like a Ninja Warrior where my to do list is concerned.
- Meal preparation; my Sweet Man and I plan our weekly meals. He does the shopping, and together we work to prepare a week’s worth of meals.
- We plan shorter excursions, rather than longer ones. It is more fun to be out a short amount of time and not deplete my energy.
- I schedule a day for Sabbath Rest, giving myself grace and the space to curl up on the sofa and read.
- Napping every day is no longer a treat but a must.
Six years ago my Sweet Man was pushing me in a wheelchair, leaving the comfort of home was an overwhelming task. I took the words that shook me to my very core that long ago day, and with diligence, I made them a part of my life.
I have come to realize these principles are for anyone’s everyday life. How much more productive would your life feel if you made more space for rest? Would your life feel more at ease if you were to manage your time wisely? Could it be much better than living overwrought and frazzled?
As we close our time together, I want to give you my best offense. As I begin my day I whisper the words:
“Lord, as my day so shall my strength be.”
Gifts of Grace
PS: My first book, Mornings In The Word is available now. Order your copy today.
If you are reading Mornings In The Word, I would love for you to share something that spoke to you.
I cannot thank you enough for your love and support for this offering from my heart.
Look me up at Life Letter Cafe and read this post.
In case you missed these posts:
Strongholds: What is Your Egypt?
Remembering Stones: Why We Need Them
Coffee and Reflections: Looking Back on March
Light in The Darkness: Hope in Your Weary Days of Heavy
Serving: A Burden or A Privilege
Why Writing In A Journal Transforms Me
Spiritual Growth: Establishing A Daily Quiet Time
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I’m blessed to serve you in this place, to share with you the Gifts of Grace as I journey through the wilderness. I picture you across the table, hands wrapped tightly around your cup, sharing life, and laughter, and tears. As I share with you, my daily struggles, I long to hear what yours may be. You can do that by commenting below or reaching out to me here.
Thank you so very much for this. I had not thought about the way that this Scripture so perfectly fits in with the ways that God wants to help us pace our days. What a beautiful treasure from the Lord. I so needed this today. xo
Thank you, Bettie! I have to remind myself every day of this, especially when I am eager and overzealous.
XO
I had almost forgotten that darn wheelchair. Boy, those were the days. Remember when I tried to push you down to the ocean. I have to admire your faith, but we did fine our sweet spot. God is good.SM
Love you, Sweet Man! Your patience caring for me is tender and sweet!
Thank You for this glimpse into your day/week friend! It helps those of us who don’t live with chronic illnesses to understand the importance of managing for those of you who do. I hope to learn from you and others. Thanks for being you! Love you!
Thank you, Tara! Love you!
XO
Thank you so much for sharing your story with us. As I read your post, I was reminded of a portion of Isaiah 33:2, “Be our strength every morning…” I pray that the Lord continues to sustain you and give you the strength to conquer each day. Blessings to you and your loving husband!
In Christ,
Christin
Thank you, Christin! I love Isaiah 33:2, I will put it in my prayer journal. Thank you, for sharing and stopping by!
XO
Dear Tammy, I needed to read this tonight. I am desperately in need of managing my time better. I don’t have much of a plan and I find myself not having time to do all I want or need to do. Your suggestions here are good for anyone whether or not they have a chronic illness. Thank you for sharing and linking up with us at the #LMMLinkup. Blessings to you! xoxo
I have chosen your post as my favorite this week. It spoke to me and I’m sure others could use the encouragement you give here. I will feature your post on my blog tomorrow for #LMMLinkup.
Thank you, Gayl! It’s good to hear from you!
XO
I too enjoyed your post this week on the #LMMLinkup. Thanks so much for sharing your heart.
Thank you, Mary, for hosting!
XO
Dear Tammy, I have just stumbled (or led!) upon this segment of your blog…. I can hardly wait to research ALL of it, but before I do, I would like to ask a question. Actually, now that I think about it, perhaps a segment of your blog deals with what my husband and I are going through. He and I have have multiple diagnoses and live with Chronic Pain. I am/was an RN and he is/was a Computer Analyst. I could get sidetracked and write a book about our path. But I will jump to the present, sort of. It has taken more than a year and 1/2 for my husband to find a diagnosis, and it is still only partial…. and basically being managed by his PCP. The current diagnosis is Dysautonomia, with the primary focus as DAN (Diabetic Autonomic Neuropathy) with OH (Orthostatic Hypotension). His list of symptoms is long….. which is exactly why it has taken so long for anyone to connect the dots. The OH led him to a Cardiologist, who discovered that he had had a Silent MI, and then he began to ask us questions. We were stunned because most of the questions received a YES response, yet we had shared almost NONE of the symptoms that he was asking about. So much of these past 18+months has been dealt with by whatever symptom was worst at the moment. As I am SURE that you experience, these symptoms ebb and wane, some times ALL are active, other times, just profound fatigue, diarrhea, and brain fog. I have a zillion questions, but my main one is: His PCP hasn’t particularly wanted to send him to a specialist. After tons of research, I know that he may be being Close to “only” management…. but not yet. What type of doctor “found” your diagnosis, manages it, do you also have diabetes? As I said, “I have JUST discovered” your blog, and you may have spelled all of this out in your earlier blogs, writings and blogs…. if so, could you point us in that direction? God Bless and THANK YOU SO MUCH for sharing YOUR Story!!!!!
SINCERELY, CATHY and KEN Cockerham, North Carolina
Cathy and Ken, I’m so glad we connected. My symptoms came and went for about fifteen years. I would pass them off or convince myself I was overreacting. Six years ago the disease brought my life to a screeching halt. It’s a long story, maybe we can connect through Voxer or email, tlmashburn@yahoo.com. In the end, a cardiologist took one look at me and told us I had a neurological problem. I was immediately referred to a neurologist familiar with Dysautonomia and was sent to Duke’s Dysautonomic Clinic with Dr. Camilla Frazier Mills. It took two years to tweak medications, electrolyte drinks, physical therapy, and sodium tablet intake. It is a daily battle, most days the battles are ten times over within the day. To answer your question, I have a super terrific neurologist locally, a GP, an internist, and I go to Duke regularly. It takes a village-smile. Feel free to email me and we can talk more in depth.
XO