The Changes We Make

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

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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September for Chiari Awareness

A few years ago, I joined a life group and met some really amazing people. People who are still my friends to this day. The leaders of the group have a darling little boy, and he has Chiari Malformation. When it first came up, I told them about my husband’s boss’s wife having Chiari, also. It deeply affected her life. I couldn’t help but to hope and pray that their little boy wouldn’t face the same symptoms that she faced, but the future was and is unknown.

Unfortunately, we’ve lost touch with Jimmy’s former employer and therefore his wife, too. I don’t know how she is doing, but I do think of her often.

In honor of my friend’s little boy and my husband’s boss, I often shared graphics and changed my profile picture in September. I knew Chiari was a huge part of their story – maybe not the biggest part, but a very real and serious part.

What I didn’t know was that on June 13th of this year, I would be sitting in a neurologist’s office, hearing that same diagnosis for myself. Multiple migraine types and Chiari Malformation I. After my MRI and reading the wording and googling it, I had my suspicions. My dear friend did, too. She was a light to me, always reminding me that Jesus is enough even when our health is faltering.

I was nervous, reserved even, what if it wasn’t Chiari, what if it was something else? I searched and searched for different explanations to “cerebellar tonsillar ectopia” but I always landed right back on Chiari.

I know God was working things out for me long before I was googling my MRI findings, and long before that neurologist confirmed the findings. I knew God put specific people in my life to help me walk through life and to keep me focused on Him. I am so thankful for His careful and thoughtful orchestration. Don’t get me wrong, I don’t think God afflicted me with Chiari. But I do know He is already in our future and aware of what is coming, and that He works all things together for the good of those who love and serve Him.

Chiari may be part of my story now, but it is not my whole story. Chiari may give me some really bad, really hard days, but it can’t take away all of the good that God has given me.

I will keep pressing forward, day after day, trusting God to work in me and through me, no matter how healthy or sick my body may be. And in September, I will share about Chiari, not only for me, but for all of the people learning to live with the challenges that come with Chiari.

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(Affliate Link)
Help spread awareness for Chiari Malformation with this coffee cup from Amazon.

Do you have an invisible illness? I’d love to hear more about it in the comments below.