Journey to Healing: Living with an Autoimmune Disease

I woke up to a spinning room. Not like a Tom’s Twister round-and-round spinning, but more like a barrel-rolling-downhill spinning.

“Crap!” I thought. I had a full day – work, kids, appointments, and meetings. I can’t operate as a mom, wife, or co-worker when the room is doing somersaults!

But yet, I have to deal with it – I have an autoimmune disease. Each day varies; some days, it’s the dizzies, others, it’s the weighted limbs and aching joints. Sometimes I’ll feel like I have the flu or a wicked hangover. It’s said that autoimmune diseases are “invisible” diseases. “Well, you look good,” people comment when they see me, but what they don’t realize is that my insides are sick and it’s hard.

Before you cue the violins – there is light at the end of the tunnel! I’ve learned how to manage my disease. Chronic illness is on the rise, and navigating the journey to health can be challenging, discouraging, confusing, and enlightening. 

Let me pause for a disclaimer here: I am by no means a doctor. I’m not giving medical advice. I’m just going to share a few things I have learned in my search for healing. The journey to health is different for everyone!

Be an advocate for yourself

We moms have some darn good gut feelings. Listen to them! If something feels wrong – investigate it! There could be times you may have to push for what you need. I’ve had to lobby for lab tests, refuse certain medications, stand my ground when I disagreed, and find second and third opinions. Gone are the days where I blindly accept anything without research. (I’ve found that search engine DuckDuckGo provides more well-rounded information than Google.) No one knows your body better than you do!

There’s no shame in doing what’s right for you

To manage my disease, I do things that some people would consider strange or extreme. For example, I eat differently than the average bear. I avoid foods that can trigger my disease, or cause a “flare”. When I travel, I always bring food with me. I even research restaurant menus before I eat out. I can’t begin to tell you about the eye-rolls, the sighs of annoyance, or the wrinkled noses in disgust when I ask the waiter questions or pull out the food I made to eat (“What is that?!”). I used to be embarrassed (and sometimes I still am!), but my husband has shown me my health and well-being is more important than someone thinking I’m eccentric or following a trend.

Don’t be afraid to try new things

There’s a fine a line – in the throes of my illness, I was desperate for relief. So I read and read, and tried many different things. The fine line divides the changes that can lead you astray, and those that can help you. Use that gut intuition and find the things that help! In my research, I stumbled upon Infrared Saunas. For me, Infrared Saunas make a world of difference. I’ve felt like dog doo-doo, gone to the sauna, and left feeling more human. I’m a big believer in acupuncture, supplements, and any body movement. Don’t be afraid to think outside the box and try something new!

Be gentle with yourself

Early in my illness, my boys told their teacher, “mommy is always sick and has to lay down a lot.” {*heart breaks*} My husband had to become the sole caretaker because there were times I couldn’t even lift my head, let alone take care of three little boys. Oh, the guilt! I was constantly apologizing to him and my kids. I felt like I failed and started down the woe-is-me rabbit hole. BUT! I had to give myself grace. I had to be gentle and allow myself space to heal and get healthy. I’m still on my healing journey, but I make sure to permit myself to take care of me.

Healing is a lifestyle change

‘Lifestyle Change’ is such a buzzword, but healing really is a lifestyle change! I’ve had to adjust quite a bit on my journey. For example, due to my disease, I can’t do high-intensity workouts like CrossFit, Orange Theory, or spinning anymore. Those types of exercises put stress on my body, and I can end up in bed for days. I have to focus on simple movements: walking, stretching, and yoga. This adjustment is STILL hard for me. I so enjoyed a hard workout that left me dripping with sweat! But my body can’t handle that, so I’ve had to adjust.  

I also overhauled my diet. I firmly believe that food can be healing. I’ve been gluten-free for almost 12 years, but I was still eating the processed stuff. As I continue to educate myself, I have switched to eating as clean as I can: no gluten, low sugar, little to no dairy (that’s a tough one!), and lots of cooked veggies. I do indulge occasionally because you’ve got to live your life! But I try to be selective and not overdo it or I’ll pay for it down the road.

Given my food changes, you might think there’s nothing left to eat, but I assure you – there are some phenomenal cookbooks out there! I haven’t felt deprived or hungry, and I’ve learned to enjoy cooking. Try anything from Danielle Walker (I love her Eat What You Love cookbook!) or Alaena Haber and Sarah Ballantyne’s Healing Kitchen to get you started.

Find a support system

A support system in your healing journey is essential! Family, friends, a Facebook group; it doesn’t matter where you find your support as long as you have it!

I don’t know where I would be if not for my husband and my parents. Brad picked up the ball and took care of our house, our kids, and me. He worked his demanding job and then cooked dinners, helped with homework, made lunches, and nursed me. My parents would take the kids, provide me time to rest, and bring us dinner. I’m forever grateful for it gave me time to rest, build up my energy, and invest in self-care.

I also went “green.” I overhauled my make-up, skincare, house cleaning products, and scents. I replaced harmful chemicals with more natural ingredients. Bloggers This Organic Girl and Gurl Gone Green turned me on to so many organic and safe products.

When we get sick, we tend to become hermits. We don’t want to go out, see people, or be social. But community is so important when healing. Studies have shown that when we have our community – we heal faster!  Chronic illness is overwhelming, so start slow and change one thing at a time.  

If you are struggling with a chronic illness or an autoimmune disease, please know you are not alone. If you don’t know where to start, send me a DM through Instagram at @mcproost. I’m always willing to share my journey as others have shared theirs with me.

Here’s to happy healing in 2020!

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