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Marriage is hard work to begin with, let alone throwing in a curve ball like chronic illness. Join Kami & Trevin Lingren as they discuss the challenges Lyme disease has brought into marriage and hear answers to some of the Living Grace readers' questions.

Podcast Episode: Navigating Marriage in Chronic Illness

Over the summer I ran a survey here on the blog, asking you readers what sort of things you were hoping to see. Topics you were interested in, ways to connect more here on the blog and social media and a variety of other ideas. Your responses were so helpful in shaping this blog space and today I’m introducing the Grit & Grace Podcast!

In today’s first episode, I’m integrating some of the questions from my Q/A corner on the topic of marriage in chronic illness. I’ve received a bunch of questions over the last few months so I envision this being a series we revisit to work through some of the common themes.

Marriage in chronic illness is tough. And there’s no way to sugarcoat it, it just IS.

So I’ve invited my husband on the podcast today to offer his unique perspective as the spouse of someone fighting chronic illness. Because, if you’ve been fighting illness for more than a minute you KNOW that this battle affects them, too.

So pour yourself a warm fall drink (or an icy beverage if you’re still in summer’s unending heat) and hit play to join our conversation!

Episode 1: Navigating Marriage in Chronic Illness


Listen in as husband and wife discuss some of the challenges that come with marriage in chronic illness, ways they are learning to navigate the grit of this life, and answers to some of readers' questions.

Resources mentioned in the podcast:
(Disclosure: This is an affiliate link, which means I may receive a portion of your sale at no extra cost to you).

How We Love Book by Milan & Kay Yerkovich

To email Trevin: trevin@livinggraceblog.com

We’d love to continue the conversation with you in the comments below, whether you’re in a relationship or wishing you were. Your story matters.

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Three ways to support your spouse

Marriage in Chronic Illness: 3 Ways to Support Your Spouse

I wrote the following article for ProHealth and it originally appeared in their Inspirational Corner here.

In the midst of all the challenging constants in this life with chronic illness, one thing I’m sure many of us are thankful for is the consistency of a loved one’s care. My husband has been the most important part of my treatment plan. He gives so much while bearing his own heavy load as we fight this illness together.

As appreciative as I am of his selfless care, it is has been quite a process figuring out how I can best support him. Those that stand beside us truly sacrifice so much and I know their need for care is just as important as our own.

Here are a few things I’ve learned that can hopefully be a starting point for developing ways you can support your spouse (or whoever your caretaker is).

Communicate

Do we know how our partner is doing? In the midst of the daily grind of living with pain, managing treatment and just getting through simple tasks it’s easy to forget that this life is hard on them, too.

Asking our partner how they are doing, as well as listening well can go miles. Their feelings and needs are important, too, and we can find ways to communicate that.

I’ve also found that communicating my needs is not just part of my self-care, but it’s also part of helping my husband. He wants to know how I’m doing. He would rather know if I’m having a hard day and can’t prepare my meals than to find me in tears over the stove (true story).

Tangibly Show Your Appreciation

As I mentioned above, so much of our conversations can center around symptoms, doctors, treatment and care. I don’t always remember to show my love and appreciation for my husband in ways that tell him “you are a rock star and I NOTICE.” But he sure deserves to know!

Search for ways within your abilities that you can show your spouse your love. How does he or she best feel loved? Is it through words? A hand-written note or an e-card telling them why they’re so awesome may be the thing that brightens their day.

Do they feel most cared for when you tangibly do something for them? Maybe you could take a task (even a small one) off their plate to show them you care. Washing a load of laundry or scheduling a payment for a bill so they don’t have to worry about it.

Fostering healthy relationships in chronic illness: Three ways to support your spouse.

Encourage Their Self-Care

Illness can feel lonely and draining for us, but our caretakers are not exempt from this. Just as we need encouragement, friendship and soul care, our spouse needs an outlet for those things as well. If I’m honest, it hasn’t always been easy for me to support this since I spend a lot of time at home, but I began noticing the difference it made.

I could see how refreshed and lighter his spirit was when he came home from a night with the guys or meeting up with a friend. So now I make a conscious effort to support the things outside the home that nourish him and lift his spirits!

Is your caretaker taking the time they need to refuel? Encourage them to meet up with a friend or to talk with a counselor to process the challenges of caring for a spouse. Maybe they would benefit from joining a Facebook group just for caretakers where they can safely share while connecting with others who understand.

Whatever outlet you believe will give him or her a healthy dose of refreshment, encourage it!

We may think we have little to offer in the realm of caring for our spouses, but it couldn’t be further from the truth. I know we have so much love and kindness to offer!

Each of us understands the value of being heard. We have experienced how great it feels to have a helping hand. We know the importance of finding release and encouragement from a friend.

It may take some creativity and a whole lot of mindfulness, but we can find our own unique ways to give of ourselves within our limitations. To let our caretakers know: you are special to me and your needs are just as important as my own.

Marriage in Chronic Illness: Supporting your Spouse
Trevin and I on our anniversary. 

I’d love to hear from you! What would you add to the list? 

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Authentic Love: An Open Letter to My Husband

To my heartthrob, love, partner, caretaker: Trevs. This open letter is for you and that enormous love of yours. XX

If I were asked to describe you to someone who had never met you, I could easily rattle off a list of my favorite qualities of yours. You’re witty, a great listener, vibrant and have that unmistakable BIG laugh – the kind that makes me feel like I could star in a hilarious comedy hit. (Of which I couldn’t, but thanks for the ego boost anyway). 😉

Or I could share one of the many stories of the authentic love you live out day to day. The kind of love that does something. That puts heartfelt sentiment into action.

Like the time my legs became too weak to walk and you carried me back to the car. Or the countless times you loaded up the wheelchair and took me with you on an outing or to an event. Where you likely could only half-enjoy the moment because you had my health and stamina on your mind.

My perspective of love has largely been shaped by the relationships I’ve known during my 29 years on this earth.

I saw love in my mother, who gave up her career to stay home and raise us kids.  In my father who worked long, hard hours to build a business and provide for his family.

Two brothers and a sister who still love me despite all the years of having an extra “mommy” bossing them around throughout childhood. (And all the firstborn children face-palmed at the memories of Oldest Sibling Syndrome. Younger siblings, we repent).

Family and friends who’ve rally around us to help raise funds for my Lyme treatment, as well as our recent move. At times they’ve brought meals, made grocery runs, or sat quietly with me on the couch when there haven’t been words to speak.

And then there’s you, my Trevs.

 

loving your chronically ill spouse
photo by Christina Patmore

Through the thickest of disease and the thinnest of resources and normality, you have faithfully cared for, protected, supported and LOVED me well.

Long before anything romantic happened between us, your friendship was steadfast and strong. God taught me much about true character through that friendship that grew between us.

Honesty, faith, and loyalty were qualities I saw clearly in your life.

You offered sound advice, a listening ear, a challenging voice when I needed one. Throughout our conversations you were genuine and real.

Two years into friendship and a whole bigger story later, I fell in love. Neither one of us could have known how deeply you would be tested through the coming years of loving me back.

You were there after I received my first diagnosis of multiple sclerosis. You saw the relief for an answer mixed with uncertainty as we sat with fear over the unknown. I’ll never forget you sharing the prayer you offered up that God would give us 50 years together. 

Less than a month later you proposed, your commitment unshaken by our new reality of illness. Five months later, we were married.

Then when my health suddenly fell apart a year into marriage, you were there for me.

When I’ve felt like I couldn’t take another minute of this illness, you have held me. You’ve reminded me I’m not fighting alone.

You felt the weight of the news that I had been misdiagnosed. It was heart-wrenching that we had lost so much time and that any hope of seeing improvement or healing felt impossibly distant. You sat with me when others rejoiced over our qualified glimmer of hope and all I could feel was the heaviness of the journey ahead.

You’ve been with me through so many moments of writhing pain, going in and out of consciousness, and far too many death scares. You were in the room when I flat-lined after a severe heart episode and were there to kiss me once they had my heart beating again.

Together, we have grieved the loss of normalcy and friendships, lost our unborn first child, and have fought so hard for our marriage.

Where many others would have walked away, you’re still here. Consistently offering compassion, support and care. I know it hasn’t been easy.

You deserve to know that second to God keeping my heart beating, you are the biggest reason I’m still here fighting. Your wisdom, level-headed nature, empathy, provision and unconditional love have been the best treatment I’ve received in these years of sickness.

You’ve reminded me I CAN do this because WE can do this.

love in chronic illness

I want to proclaim loud and strong how hard you’ve been fighting this battle, too.

I wish more people would see it that way…that they would see you for the warrior that you are. That more people on the outside would be sure to ask about your well-being when they ask you (or myself) about mine.

Because it’s you who’s here on the battleground with me. Every. Single. HARD. Day.

You help keep tabs on my symptoms, monitor my flares, and help me wade through pain attacks.

You pick up or prepare dinner when I don’t have the strength to stand, and will even tackle the dishes after.

You graciously help me in and out of the tub when I’m too weak to manage.

You grocery shop, pay the bills, help with laundry.

Beyond the emotional weight, your job description as caretaker seems never-ending, yet you never ever complain.

Your perspective on illness has been forcefully transformed through these years of seeing your wife’s declining health, I have no doubt.

You’ve known the feeling of helplessness as you try anything and everything to help me find relief, healing, or any amount of improvement in these moments of unrelenting pain.

When neurological symptoms began taking a more drastic toll on our conversations and our marriage, you worked through each moment with me and I know it took great effort (and still does). From drastic mood swings and memory loss, to severe sensitivities to sound, light, movement and touch that can suddenly send me into a tailspin without warning: you truly experience me at my worst.

I know this life with illness has weighed heavy on you. And while I’m so thankful that you’re here, my heart breaks that you’ve had to endure so much of this head-on.

You’ve advocated for me at every doctor’s visit, championed sleepless middle of the night ER trips, and challenged doctors to consider the effects of a disease they know little truth about. You have guarded your bride, and I’m forever grateful.

This is most definitely not the life we envisioned. Many dreams have been put on hold, new layers to my illness and healing continue to surface, we’ve moved, left a community and we are TIRED. We are worn.

But at the center of all the very real bitter parts of this, I’m thankful God has managed to keep some sweetness intact.

So much of that sweetness is found in your partnership. Your laughter. Humor. Kindness and warmth.

Your beacon of love and unfailing commitment.

You and all the other faithful partners out there, fighting alongside their sick loved ones, are some of the bravest people I know.

You’ve shown me, and others, what an authentic, unwavering love can look like. That love that can be lived out in every season and stage of life.

You’ve demonstrated a love that’s not merely based on the feel-goods or ideal circumstances that our culture tends to idolize.

In sickness and in health

Thank you for reminding us all that the fight for love, relationship and wellness is worth it.

Simply because we made a vow and I’m forever your lobster.

I’ll be ever thankful for YOU and your generous, authentic love.

YOU ARE MY FAVORITE.

XO,

Your Babah

 

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Living with chronic Lyme disease

Life with Lyme

Lyme is a disease that affects the brain and nervous system, muscles and joints, heart and circulation, digestion, reproductive system, the skin…and the list goes on. 
Lyme patients may “look healthy”, but that in no way describes what they go through on a daily basis. I’ve been told, “you look great! I’m glad you’re feeling better!” – even though I never said I was. 
For better questions to ask, consider reading my mini series on caring well for the chronically ill {here} and {here}.

I know others mean well, but looking normal (sometimes with the help of a little makeup) is honestly the only “upside” to this disease. It is no reflection of what I, or others, are suffering through. So, in light of my recent diagnosis, I thought I would offer a better picture of how this disease, which we now know is Lyme and not MS, has affected my life.

I’ve chosen to share, not for those who read to pity me, but because…well, honestly, it’s because I think we all have a desire to be understood. So, even though it’s uncomfortable for me to share, I’m going to anyway. 

I figure the best chance for those who don’t have Lyme to begin to understand and have compassion for those who suffer with the disease (or any chronic illness for that matter), is to hear the stories of those of us who experience and live with the effects daily.

These symptoms be cray cray.

As I mentioned in my last post, I suffer over 60 different symptoms. Each day I experience anywhere from 20 to 30 of those symptoms, many of which are constant, including: severe fatigue, moderate to severe head pain and pressure, dizziness, joint pain, vision abnormalities, muscle spasms, numbness in my limbs, nausea most days, and leg stiffness/weakness…to name a few. 

I won’t share all of my symptoms, since there are so many, but they often come on fierce and all of a sudden (ex: chest pain, stabbing pains, heart palpitations, migratory pain, and more) – which can be both stressful and frightening.

Mornings and nights

These are usually the hardest points of the day for me. I’m at my weakest and often in the most pain. my mornings usually start out with me moving from bed to the couch and staying put for the first several hours. 

Afternoons are my best bet (but not guaranteed) to have slightly less pain and symptoms, but by the time evening rolls around I’m usually ready to lie down again. Sometimes I am able to push myself through a short outing on better days, but I typically pay for it in heightened pain & symptoms later on. 

The simplest tasks, like cooking, washing a few dishes, or a load of laundry often drain me of my energy. In all honesty, I spend many days on the couch or in bed.

What it's like to live with Lyme disease

Triggers.

I’m very sensitive to heat, stress, sugar, loud noises, bright lights, over-exertion (it doesn’t take much) and over-stimulation – which, since I’m an introvert means group settings fall into this category. 

Another “fun” trigger is sitting/standing up…I can almost guarantee my pain level going up at least a point just from the time I spend upright. 

Due to how drastic my health’s response to some of these can be, it’s often difficult to make it to things like the grocery store, church, the movie theater, restaurants, and parties. Or anything outdoor during the summer heat. My heart may want to, but I also can only tolerate so much pain and activity each day.

Making plans.

Fellow chronic illness sufferers will totally understand the struggle that goes into making plans in advance, which, for us, includes even the day before. 

It can be difficult explaining to people that we never know what to expect with our health. For example, I can be at my base of 5/10 on the pain scale when I wake up, but an hour later be at a 7 or 8 without any explanation. 

I can be moving around okay with my limp (again, thanks to the disease) for the first half of the day, but then need Trev’s help from one room to the next later on; hence, why a month ago we decided to buy a wheelchair for such instances. 

Due to these inconsistencies and more, I usually qualify with people when making plans that I/we may have to cancel last minute.

Driving.

My vision issues are what made us decide to have me stop driving altogether in February of this year (2014). We couldn’t bear the thought of something happening to someone else or myself. 

Between that, any pain meds I take, and now my persisting leg stiffness and weakness, we don’t foresee that changing any time soon. Not having the ability to drive myself places adds to the disconnect I can feel living with chronic illness, but I’m honestly not always up to going out for more than an errand or two anyway. 

A fact I use when trying to convince myself to accept the loss of driving a bit easier, but it does nothing for the stir-craziness. So if I really need a change of pace, Trev can help me head out to the front lawn for an hour under the shade tree or have a friend over for a visit and it’s refreshing for my spirit.

Marriage.

My Trev has been a rock through this. A friend of mine, who also battles Lyme, shared with me that her husband tells people “we’re sick” and there couldn’t be a truer statement of marriage in the midst of disease. Its affects both of us

I feel the physical weight, but Trev empathizes and carries an emotional weight as we fight this together. He also has most of the responsibility on his shoulders. 

He does all of the driving, grocery shopping, bill paying, income earning, picking up meals when I can’t cook (often), taking me to doctors appointments, picking up meds, comforting, caring and sometimes even carrying me. 

He needs support, too, and we are thankful for the close friends that have come around us in recent months. This is surely not what we envisioned for our first years of marriage, but we have fought hard for us and with God’s strength (and a lot of scrapes and bruises) we are growing stronger together.

This is really just a portion of how this disease has affected my health and our day-to-day life, but it shares at least some of the weight of Lyme disease. 

There are many other stories that are worse than my own, and I’ve indeed had much darker days than I’ve shared here. My hope in sharing this post is that greater compassion will be birthed in our hearts, for I’m surely not the only one you’ll come across who suffers a chronic illness. 

In my humble and exhausting experience, this disease doesn’t give it’s captives a choice of anything other than bravery.

Us Lymies may not look it, but our hearts and souls are, indeed, warriors.

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Ode to Love

At the risk of this being ultra sappy, my post today is short and sweet and all about love.  Sweet love.

IMG_7935 - Version 3

An ode, if you will, to the love of my hubs and his devotion to his bride in our first year and a half of wed-age. It’s been one roller coaster of a ride for us, but one that has sharpened our characters and driven us closer to the arms of our Father and of each other.

Each day I grow more thankful for the gift of my Trevin. The abundant blessing it is to call him my best friend, my love, and my cheerleader for life
(in the most manly way, of course. No pom poms or skirts here).

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So thank you, my Trevs, for your servant-like heart. You have cared for me so faithfully, both on the good days and the darkest ones we’ve seen yet.  

I continue to feel the warmth of your devotion and am inspired by the example of Christ’s love you have been for me. In the season we’ve been walking through, but also throughout our friendship, dating, engagement and marriage.

Your life is a blessing to many and it is a joy and an honor to be called your wife. there’s no one else I’d rather be on this walk on.

Thanks for always working so hard to communicate. This whole male and female brain thing often has us like…

IMG_1516

: )

Love you and the happiness you bring to my life!

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the first year

a year ago I married my favorite person in the world.
and in preparation for that moment
my sweet friend, Christina, captured this in our engagement photo shoot. love!

IMG_1383

it truly feels like it was ages ago we were taking this engagement shot…what seemed like a whirlwind of events began after this. we celebrated Christmas in nor-cal with my fam, moved me down to his parents’ place in southern California, kicked into full-gear planning the wedding, went through our pre-marital class, started new jobs, searched for a place to live (and found a place only two weeks before the wedding – reminder to self: breathe. you’re not reliving it right now)…and then before we knew it, we were heading north for the big day.

oh, wedding day. you were so lovely.
what I sense in this picture is what I remember breathing in on that sweet day of marrying my Trevs…
joy, laughter, sunlight, glassy water, fresh air and love. lots of it.
I was in the land of bliss. sweet bliss.

IMG_8001 - Version 2

 it felt so good to be enjoying my day and letting go of the ball of stress I had become in the months leading up to it…I felt so free. so happy. so content. and in the year that has passed since that moment I have thought of the beauty of that day often. of the depth it held, the future it promised, and how this act of the two of us becoming one parallels with Christ’s redemption story. so beautiful and humbling.

as I look back on all that’s happened since that day, I’ve come to this conclusion:
our first year has been a journey. a beautiful, challenging, inspiring, day-to-day walk with my favorite person who I can both enjoy immensely and be driven crazy by all in the same day (I’m sure everyone understands this). together we’ve traveled through both joyful and difficult seasons. seasons where we were stretched to trust God and rest in his promises. seasons of more questions than answers. seasons of beautifully being uplifted by the prayer and support of family and friends.
seasons of great joy in experiencing the providence of our Father.
and, through each season, we press on, grow closer, and love more deeply together.

but not without a fight of the purest kind. a fight to be each other’s advocate and not their accuser. a fight to be humble and willing to be called out when we’re wrong. a fight for romance. closeness. friendship. time together. a fight to stand united as a team. and when we fight for these things, God’s grace enables us to succeed. when I fail and put myself first? I must try, try again. and again. because Trevin’s worth it. our marriage is worth it. and in doing so, I recognize that I’m not only honoring him and our marriage, but I’m honoring my heavenly Father as well.

so there, in a not-so-small nutshell, you have my thoughts on our first year.
thanks for stopping in for a read. : )

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