Learning to live with chronic illness can be and often is a challenge. There are so many new things to learn and juggle that mistakes happen and I’ve made plenty of them. Here are a few mistakes I’ve made while learning to live with chronic illness.
1. Trying To Do Everything
Ever have a great day and try to pretend as if you could do it all? After having a great day, I assumed that it would be a good day and I could do all the things. All the things I hadn’t been able to do the week before and all the things that I wanted to do but knew I likely shouldn’t.
This wasn’t the inherently bad part. The bad part was that I failed to listen to my body when it said to stop. I mostly denied having anything wrong with me at all and tried to do everything. Before becoming ill, I would do all the laundry, clean, bake bread, make a fancy lunch for myself, and also sweet treats for my family, on top of cooking a full dinner while working on a number of crafts and hobbies (I was a stay-at-home mom then). Now I am lucky if I can do laundry, make dinner, and any hobbies at all on the same day.
Should I even try doing most of those in one day? No, not anymore. But I was still somewhat in denial of being chronically sick. I thought maybe it was a passing illness that just took a few years. Nope. I was wrong. Of course, I was.
So don’t do this. I make this mistake every so many months. Build up your activities over time, don’t try to throw the whole parade in one day.
That leads me to my next topic.
What went wrong before was I hadn’t fully mourned my old life and my old body. Why would I want to do that? I mean I was still here, but technically my body wasn’t the same and neither was I. I had a new set of rules that I had to live by. A new way of NEEDING to do things. It wasn’t just a recommendation, pacing was a lifestyle that I had to embrace or risk being in flare-up forever. Knowing how bad the pain and fatigue could get when I didn’t take care of myself, I knew that wasn’t what I wanted. No matter how stubborn I may be, I understood that mourning my old life and body was imperative if I was to still live a fulfilling and productive life. I can still be a novelist and do all the things I want to do with my life but maybe on a slower timeline.
We all have expectations of some kind. We expect things to go a certain way and are often disappointed when that happens. I have had to learn to manage my expectations and realizing if the expectations are realistic and if I’m being honest with myself about what I expect of myself then I can still lead a fulfilling life. My husband often tells me that I expect to do the things from my old life but in this new body simply because I wasn’t managing my expectations well. And you know what? As much as I hate to admit it, he was right (just don’t tell him that because I’ll never hear the end of it and, as a matter of fact, today is our 14th wedding anniversary so definitely don’t tell him today).
I expected to do everything I could before because why not? If I’m having a good day, do everything right?
Wrong! This is how flare-ups have set me back more than I anticipated.
4. You Ate What?
It took a long time for me to understand how food affected my body especially since having to deal with chronic pain and fatigue. I was never diagnosed with any allergies, not after three tests so I never thought about how foods could affect me until a week with a strawberry overload and such severe pain that I thought something life-threatening was happening to me. When I was first diagnosed with non-allergic asthma (now updated as eosinophilic asthma) I was seeing an allergist. After three different tests, I was told I had ZERO allergies even though my mom was insistent that I had an allergy to strawberries as they had sent me to the ER as a kid.
So sometimes it turns out that mother knows best is not just a phrase but reality because, without fail, strawberries cause asthma symptoms every single time along with severe muscle pain. They were my favorite fruit ever. Not anymore. Finally, my new asthma doctor told me something that made sense and that it may not actually be the strawberry that bothers me.
Apparently, they are treated with chemicals to make the color pop more. Now I’ve had organic and nonorganic strawberries with the results so I don’t know how true this really is but something in those evil berries makes my asthma and pain go crazy. Blackberries (my new favorite) don’t seem to have this effect so I will be sticking with blackberries and raspberries. Listen to your body in how it responds to your food. Journaling helps with this, tracking what you eat helps even if you arent trying to manage your weight. Knowing what you ate can help you learn if something is affecting you.
5. Not Journaling or Tracking Symptoms
This one is almost obvious but I still struggle with this. Tracking symptoms has been the hardest thing for me to maintain. Now I’m an avid journaler but I don’t often write about my pain. It may sound weird but I’ve spent so much time avoiding it that I just wanted to continue to avoid it. Big mistake. Huge. Not only was I unaware of symptoms that evolved but also how others changes or how they were being affected by outside stimuli. It’s important to know if the weather affects your symptoms, as well as other key things. I have found that journaling also helped me to notice how my depression and anxiety has changed over time.
So my point is don’t do what I did.
Journal or track your symptoms and foods in some way. There are apps for both Android and iOS. There are digital trackers via PDF annotation apps like Notability or Goodnotes. Try Notion.co to create a simple tracker for yourself to stay organized or printables for tracking in a binder. Try different things and see what works for you.
Journaling is my personal favorite (and I write about why you should journal in this blog post) because it makes it much easier to reread entries and learn what is different, if anything, and how you feel on top of it. Even just 5 minutes a day is helpful to jot down your symptoms and how you feel. Digital journal or in a notebook, it doesn’t matter.
Be mindful of how you feel after you eat and see if some foods are making you feel worse. Same with if you are staying hydrated and eating a balanced diet.
Is it the weather? Tracking the barometric pressure can clue you in on whether or not this affects your fatigue or pain levels.
I hope these mistakes that I have made will help prevent you from making similar ones. They have been big for me. So thank you for reading. See you next time.
Can you relate to the five things I mentioned in this post?
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