chronic illness

The Changes We Make

/ Regina Walker / Leave a comment

Years ago my mom would come home with these face masks and tell me to wear them for dusty jobs. Hauling hay, cleaning the tack shed, stripping the stall, mowing, and more would come with the admonition that it would be better to wear one.

Flu season would come with the suggestion to wear one in public.

But being cool and not being seen as sick overrode wisdom. In all my teenage glory, I looked at parental concern and care and I scoffed. I was certain that they just wanted to ruin my life and make me look ridiculous to my friends, boys, the world. (Sorry Mom.)

As I got older, the cool thing didn’t play such a role in rejecting the masks, but not wanting to be seen as sick sure did. In fact, I’ve spent a lot of time pretending that my lungs work better than they do. Illness is so often seen as weakness.

Illness made me feel like I had to work twice as hard to prove myself. I’ve failed time and again to bring the proper medications and my nebulizer with me when I knew I’d need more than an inhaler. I’ve hidden in bathrooms using too many puffs from a rescue inhaler, trying to get my breathing back to normal (or at least to where no one noticed) and I could continue an event/activity/outing.

I didn’t want to be seen as less.

My husband has been kind to me these years we’ve been building a life. As he learned how reactive my airways are, he has swooped in to handle all the dusty jobs. When I’m talking about my to-do list or particular jobs, he’s known to ask, “But will it be too much for you?”

I’ve bristled at the question and even snapped at him. I refuse to live like life is too much for me. But I’ve had to admit defeat and that some jobs are hard for me.

Life has thrown transitions our way time and time again, and here we are, facing more 20190627_200812.jpgof them. As I settle into my role keeping the home and farm on target and he travels, I knew I’d have to face some dusty jobs. So, while I was at the store, I bought masks. And I put off the first dusty job for a couple of days because I was struggling with wearing the mask.

The chicken coop – a dusty mess of feathers, wood shavings, and poop. Never a good combination, and an especially bad combination for an asthmatic. For the last two years, my husband has faithfully cleaned out the coop. But with his hours home shorter than we like, I don’t want him to be cleaning coops, I want him to be playing peekaboo with toddlers and driving dirt bikes with teenagers.

I conquered the job, in a mask and all. And I realized how much better it is to wear the mask and protect my airways and still get the job done. I didn’t have to bow out, pass it off, or neglect the task. I did it, no rescue inhaler needed, and the mask wasn’t as bad as I expected. In fact, I plan on wearing one when I tackle the next dusty job.

I’m learning that living with illness takes a measure of embracing that I am sick like it or not, which means taking measures to prevent flares. It also means doing the best I can with what I have, learning to rest when I need it, and learning that denial doesn’t make one healthy.

And we don’t get it all right, 100% of the time. As I was writing this, I was snacking on a bag of Skittles my husband left for me. And I realized that’s not the fuel my body needs to be as well as possible. So I put those up and switched it for carrots because I snack while I write. I am a work in progress and I am okay with that.

Struggling with chronic illness? What preventative (like a mask) or other change can you identify that will help you manage your illness? Tell me about it in the comments below.

 

Happy Trails

Happy Trails!

Content Fatigue and Chronic Illness

/ Regina Walker / Leave a comment

I first wrote about content fatigue here. Be sure to catch what I had to say about the over-consumption of media there.

Another area in my life where I got bogged down with content fatigue was in regard to chronic illness. I was trying to read every diet plan, exercise plan, healing plan I could get my hands on. One thing would say “eat this raw” then the next would say to never touch it. One would say cook everything in butter, another would say never butter, always oil.

My heart and mind were being pulled multiple directions as I sought answers and healing for my hurting body. I had to really face that I can only try one plan at a time – and that any plan that will bring healing or lasting pain relief to my body will take time. It won’t happen on the first day, the first week, and maybe not even the first month. So I have to really pick one plan and follow it for at least 90 days if not 180 days. This is hard because I want to fix all of the problems NOW.

I don’t want to be sick anymore. I don’t want to hurt anymore. And the one that jams me up is that, while cellular health is crucial, and I’m starting to wrap my brain around eating and exercising in a way that moves fluids around, toxins out, and oxygen to and from, so that my cells are the healthiest possible – one of my conditions is a malformation of my skull. I don’t think I can eat enough of the right stuff for that to change.

I do think some of my pain is from inflammation. I do believe my asthma can be greatly controlled with diet and exercise. But I don’t think Chiari just goes away because of kale smoothies or triple servings of blueberries.

If you’re facing a chronic illness, and you’ve started researching how to support your body, I think you can relate – a lot of people have answers, and they come with a pretty price tag, and this notion of a quick fix. The content alone can be exhausting, and the conflicting messages make it sound like it’s our fault for being sick.

Don’t let that seep into your heart. If you know you need to do something better, take steps to do so. (This is me all the way.) But blaming yourself won’t make you well. And getting completely overwhelmed in the content you can read/watch/hear about chronic illness can be consuming and depressing.

Take one approach at a time, and give it time. Be aware of detox symptoms, go slow, give your body and cells a chance to adapt. Follow sound medical advice and go to a practitioner you can be honest with, open with, and that you trust. Sometimes you’ll know right away if a way of eating isn’t right for you. I feel terrible on High Fat/Low Carb within the first week. But it takes more than a month to see improvement from some of what works for my body.

Stick with it. Consistency matters. If you are eliminating a problem food, you have to really get it out of your system and leave it out of your system. Not slipping is hard. But don’t let one meal/snack turn into 3 weeks of consuming something that adds to your inflammation and pain.

You can make changes that will make you feel better. I think food plays a tremendous role in health. I think finding an exercise you can tolerate is important too! Stretching, walking, swimming, seated weight lifting, elliptical, dance. Moving your body moves fluids and gasses around so your cells aren’t swimming in toxic soup and they get a replenishment of nutrients. Start with a few minutes if you need to. You aren’t going for a marathon here. Just 3-5 minutes of movement. In a week, add 3 more minutes. You might find in 6-8 weeks that you can tolerate 30 minutes of slow, steady, deliberate movements.

None of this is medical advice – this is just from one chronic illness patient to another.

I think there is a spiritual component to all of this that needs a post of its own, so I’ll work on that in the coming days. I couldn’t face the worst days without the hope of Jesus. Sometimes I’m in so much pain I’d rather die than keep hurting like I do. But spending time in the Word (whether listening via the bible app or reading in my bible) helps me cling to Jesus and remember that this world, and this life, are temporary. He will remove all my pain and wipe my tears.

Until next time,
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What I Want Them to Say

/ Regina Walker / Leave a comment

I often think of my kids when they are older. I’ve done this for as long as I can remember, but looking at our oldest at 20 years old, and our next in line being 13 years old, has really made me consider what life looks like with adult children.

One of the things that I have been considering is what will they say to their friends, or to each other, about me/the way they were raised/our home?

What I want them to say is, “I know who I am, I know what God is calling me to, because my mom held space for me figure it out. I always knew she was there, I knew she loved me, she would answer questions, but she let me figure a lot out, she didn’t suffocate me under her expectations, her rules, or her ideas for my life.”

Then, I let that statement inform my reaction and response to many of our day-to-day interactions.

Now, I know they will call each other when they are grown and have moved on and laugh about the time mom lost it over one thing or another. “Do you remember that time she was so red it looked like her head might pop off?” And they won’t remember clearly what they did that made me that mad, but then again, neither would I if they asked. I probably wouldn’t remember being that mad or red, and would probably laugh it all off awkwardly.

That is the grown up joy of siblings – no one knows quite what it was like to grow up the way you did like a sibling does. They understand the nuances of family life in your childhood and can help you relate your childhood experiences to useful tidbits for adulthood.

But that’s not all I want them to remember – not always or only the red-faced mom who was just so done with that day. I want them to also remember my presence. I don’t think they’ll always remember my words, whether it was the best advice or the worst. I don’t think they’ll remember every outing, every meal, every outfit washed, dried, and put away. In fact, I know they won’t. But I want my presence to be powerful – because I was calm when they weren’t, because I was strong with them, for them. Because I held space while they navigated a challenge and cheered them on.

I want them to remember that I believed in them, that I fought for them, that I never ran from a battle where they were concerned. As I think on what I want them to remember, it is a powerful force for how to be now. Whether I only have one more day here on earth with them or 50 more years, considering their memories is a powerful motivator for how I respond today.

I desperately don’t want them to remember that mom was always sick. I hear it in their voices when they prepare to leave for their Dad and Step Mom’s house – “Are you going to be okay?” “What if you have a really bad day?”

They know how much they help me on the really bad days, and how much they do for the littles and the farm when I am not up to par. This weighs heavy on my heart often, but as I write this to share, even more so. This isn’t what I want them to remember about growing up. It doesn’t feel fair that they have to grow up with a sick mom.

If I’m being completely honest, it’s the spot where I have to be the most intentional about being soft to the Lord and His guidance and will for my life. I could easily get angry that He let my kids have a sick mom. But He is faithful to redeem our deepest pain for His greatest glory. And I know He will use their experience with a sick mom to reach people around them through their whole lives.

What I want them to say is that I was there for them, present, kind, gracious, that I love Jesus fiercely and lead them to do the same. That I love them deeply and without wavering.

I know they’ll say they grew up with a sick mom, and that hurts, but having a sick mom is as much part of their story and being a sick mom is part of mine.

 

Until next time,
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A Prayer to Share:

Dear Heavenly Father,

Help us consider the memories our children will have as we parent, help us to think on what we want them to say about us and sharpen our parenting, Lord. Help us honor You with the way we raise these precious little people you trusted to us.

In Jesus’ Name,
Amen.