steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Living Well With Lyme Disease: 5 Tips to Be a Better Husband in 'Sickness and in Health' 01/25/2016
When you take your partner's hand in marriage and swear to love this person "in sickness and in health", no one really expects the sickness part to come first.
Especially when it begins on the honeymoon and you just turned 27.
The sun crested over Mt. Kilauea as Kaitlyn and I drove our Jeep rental up the big island of Hawaii. Just days into the honeymoon, we had that glow about us much like two kids shuffling off to prom: giggling, canoodling, and posing for far too many photos.
Our nostrils flared at the sulfuric smell of volcanic ash and molten lava as we pulled up to Hawai'i Volcanoes National Park and began to explore the area.
My appetite for geology giddied up like a scientist and I pulled Kaitlyn with me to "get a closer look."
But when I walked forward, she tugged backward. With a look on her face that screamed doomsday, she felt intense fatigue, joint pain and mental cloudiness. Anxiety stiffened her natural mellow posture.
This preliminary symptom precipitated into with what we eventually discovered to be Lyme Disease: a severely debilitating disease passed on to humans through a tick bite.
300,000 cases are reported each year in the U.S. alone, yet news of the disease rarely makes international headlines. It affects everyone differently, but the most common include crushing fatigue, severe mental cloudiness, migraines, and intense joint pain.
After becoming infected, many with the illness struggle to find the energy to do simple tasks like making breakfast.
It's been five years since that day on top of Mt. Kilauea. In that time, Lyme Disease took Kaitlyn from running a marathon to riding in a wheelchair to go to the farmer's market.
Through this experience, I've grown to learn a bit about what it takes to be a better husband when your spouse depends on you to be the caretaker.
For all of you out there who currently play the role of caretaker and strive to be the best spouse for your partner, understand that you're not alone on your journey.
As I continue to share my story and talk to other caretakers, I am overwhelmed at the amount of people who keep their story hidden behind the cloak that "everything is okay" when in actuality they are struggling to find balance between their role as caretaker with other roles such as parent, friend, employee or business owner.
Many feel they will be looked at as weak if they are honest about their struggle. Consider instead what Joseph Campbell teaches us about the struggles in life: "Opportunities to find deeper powers within ourselves come when life seems most challenging."
5 Tips to be a Better Man in "Sickness and in Health"
1. Continue To Be Compassionate When Acute Turns Long-Term Pema Chodron, author of Living Beautifully, often reminds us that the best person we can be is a compassionate one.
When we have compassion, we treat everyone around us with love and understanding. And when your spouse is sick, they need a whole lot of love and understanding.
But when acute sickness turns long-term, this isn't so easy.
You need to constantly set reminders and cues to help instill compassion. After six months, even seemingly big events like driving to the emergency room can start to feel routine and you may be less compassionate when taking care of your spouse.
Long-term illness breaks a person down, mentally and physically. Imagine a finish line that keeps moving further away during a marathon and you begin to understand where I'm coming from.
But there's a deep well of compassion inside all of us. Dr. Paul Coleman, author of Finding Peace When Your Heart is in Pieces, reminds us that "Even when you're tired and you have a lot of heartache, giving to others is not impossible...
compassion may not end your heartbreak, but it could mend heartbreak."
2. Forget Your Plan and Set Intentions to Live in the Present A hero of mine, Joseph Campbell, once said "You must give up the life you planned in order to have the life that is waiting for you."
Campbell hits the nail on the head with this one. Before we got married, Kaitlyn and I planned to travel the world and vagabond -- soaking in the multi-cultural beauty on this planet.
We imagined a standard poodle, a baby, and buying a home in San Diego on the beach within the first five years of marriage.
It's been over four long years and no baby, no poodle, no house on beach (yet). No San Diego (yet). But that's okay. We've learned that extending happiness to hopeful outcomes does little to find happiness in the present.
Instead of dwelling in the negative sea of despair, Kaitlyn has set aside her career as a teacher since leaving the classroom due to her medical condition three years ago and has focused on what she can create.
She's written a fantasy YA novel, created a jewelry line based on the elemental healing properties of gemstones for her novel's characters, and has turned our kitchen into her home office.
As much as we would never have chosen this path, we can't ignore the remarkable beauty that's come out of it.
3. Find Time for Intimacy When you become someone's caretaker, it becomes difficult to switch between playing the role of caretaker and then of a lover.
But you need to touch. You need to spend time physically touching each other. This could be as simple as cuddling or a light massage if sexual intimacy is too difficult.
Try this: at night hold each other in an embrace and share three things you each are grateful for.
4. Make Sure to Speak Their Love Language Gary Chapman, author of The Five Love Languages, shows us that we can exhaust ourselves showing love to our partners, but if we're not speaking their love language, our effort goes to waste and love may not be perceived.
You may just be speaking a different love language if you're left feeling exhausted and your spouse still doesn't feel loved.
If "Words of Affirmation" are what your spouse needs, for instance, then you need to speak this language, even if another love language like "Acts of Service" or "Physical Touch" is your favorite form of expression.
When your spouse suffers a long-term illness, they will need more love than ever to help them not feel abandoned.
5. Add "Yet", Avoid FOMO, and Embrace a Beginner's Mind For all those things you feel you are missing out on (and the Fear of Missing Out can be a dangerous negative spiral), consider adding the word "yet" to these. You can be anything you want to be even if it hasn't happened... yet.
Consider the concept of "Beginner's Mind" to curve FOMO.
Having a beginner's mind allows us to approach everyday experiences like we did on day one, with awe and appreciation.
To the beginner, all it takes is a simple sunrise to smile.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Steve, Thanks for posting this. As I feel myself drowning in the sea of a flu induced TBI relapse, this post gave me a nice attitude adjustment that will help both me and my hubby.
I try to work from a place of acceptance, mindfullness and the beginners mind each and every day. Great post! DW
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Ann-Ohio
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Member # 44364
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Wow!
-------------------- Ann-OH Posts: 1589 | From Ohio | Registered: Aug 2014
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
FOMO.... hmmmm..... my husband didn't have this while going through MY worst rough time, but I did. and I still do now that my life needs to start anew.
some days I can have that peace and serenity of living in the now, but since sick dug in its claws I have a very hard time with this overall. but , yes, beginner's mind.... I hope I remember to keep that in my mind.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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steve1906
Frequent Contributor (1K+ posts)
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Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
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yes, hope....
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I ditto the "wow"
I guess im both caregiver and caretaker
That brought up a lot of feelings
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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