The many years that I have struggled with chronic illness have given me a passion to help others on their journey with it. Check out these entries (the newest will be here at the top) for some helpful insights and meaningful encouragement!
ENTRY 2: BECOME AN INVESTIGATOR
Big Takeaway: Become an investigator! You have to become aware of the connections between your personal symptoms and the potential triggering factors behind them.
There’s one word that describes the last five or six weeks: flare. My small fiber neuropathy has been causing more pain and numbness than usual. Most days have been manageable but on Wednesday my symptoms went into overdrive, and it was all I could do to get through the morning. Every single movement caused muscle pain, and every drop of the pin around me caused a burning, tingling sensation all throughout my body. The day was long, frustrating, and barely bearable. But the next day was better. I thank the Lord for the strength and grit He provided me!
If you’ve been diagnosed with a chronic illness or autoimmune disease, you can relate to having good days and bad days. Good seasons and bad seasons. But do you know that you don’t have to be side-swiped with every ebb and flow of your symptoms? That you can, oftentimes, learn to predict or at least partially see your flares or your difficult days coming on? Here’s a bit more of my story. . .
Spring and fall. After a few years in a row of severe episodes that led me to the ER (this began about six years ago), I took notice that these trips were always in early November and late spring. This was before my SFN diagnosis, but after the POTS diagnosis (POTS still wouldn’t explain the nature and severity of these trips and I’d always leave without any real answers). It actually occurred to me after having large medical bills to pay about every six months—and when I looked at the dates of my trips– that my symptoms were more severe in the fall and spring seasons.
Certain foods. This is a whole blog in itself, but I’ll just suffice to say that after (literally) 15 years of learning what my body can and cannot handle with food, I am finally very confident that I have that part of the puzzle figured out. I have to limit the types of foods that I eat, and I know which ones trigger my symptoms. Example: I ate packaged cookies last night and woke up this morning with a headache. It’s a price I am paying and with these illnesses, there are transactions and trade-offs that you learn to be aware of and make choices about—but that, again, is yet another topic for another post!
For now, I want to get to our take-away for today. You have a choice to be a bystander to what is happening to you OR you can become an investigator. To be an investigator, you have to become more aware. No, we can’t control everything or even close to everything about our illnesses, but there are things we can do! Here are a few that I hope will be helpful for you:
- You can learn the known triggers of your symptoms by simply reading about your condition and staying up to date on the research. You have many that are unique to your own body, however, there are many others that are well-known to your specific condition. (I am amazed that many migraineurs still don’t know that wine and chocolate are major triggers!)
- You can start making mental notes and yes, even taking actual notes in a journal or notepad. They even have apps for this. Record when symptoms occurred and what factors may have contributed to them. Think about foods you ate, activities you did, stress levels, etc.
- You can join a Facebook group specific to your diagnosis. Most of these are designed to provide encouragement as well as information about varying treatments (I love the functional medical tid-bits I get from the groups I’m in!), however, they are also great for learning what might be contributing to your symptoms because you can read so much about other people’s experiences.
I know, learning about your symptoms and what might be triggering them–it feels like a guessing game. Especially at first. And it takes patience and time. Isn’t that what an investigation takes, though? You sort through a ton of information until you find substantial clues that end up coming together to solve the case. Not that I am suggesting yours or my case will ever be solved—I’ve prayed that prayer a thousand times and somewhat like the apostle Paul, decided that the Lord has given me thorns in my flesh to remind me of my need for His grace over my weaknesses.
Becoming more aware is a big step—but it is one of the first steps we can take that can potentially bring us a substantial win! If I can anticipate a difficult day or season that might be coming in my near future, then I can prepare myself to better handle what I might have to experience with my illness. Or if I can avoid a surge of symptoms by not opening up those strawberry crème-filled off-brand Oreos from Wal-Mart (who even thought of such yumminess anyway?), then truly, my knowledge has given me choice and a sense of control. It is worth the effort to me. My challenge to you, then, is to consider becoming that investigator of your condition. The reasoning is simple: personal awareness can and will serve you well as you navigate on your journey of chronic illness.
ENTRY 1: SO MUCH TO SAY
There’s a lot to say about chronic illness. I experience so many things with my own, I read a lot, ask my doctors a ton of questions and I also share one-on-one with others who ask about their own battles with chronic conditions.
Those of us who struggle with this need so many things! We need informed physicians as well as a deep, vast and personal knowledge of our condition. We need the support of others as well as supernatural grace to be sustained by Christ when those same others can’t relate. We need determination to wake up ready to tackle each day, one day at a time, whatever may come our way and we need the courage to know when to declare that our work is done for the day, even if it’s only a couple of hours later.
These posts will be for anyone who wants to read them, whether you are struggling or not struggling with chronic illness. I’ll share tips, timely research that might help, and every once in a while, a tantrum because living with difficult medical conditions and life-altering symptoms can be draining and oftentimes, overwhelming. Please, no sympathy needed—this is a broken world we live in and we’re all dealing with something! Let’s be thankful that we can put our faith in SOMEONE, not the something that may actually never go away this side of eternity.
I will be sharing my bits and pieces to help others and create conversations around chronic illness. So if you see this image at the top of my post, either here on my teaching ministry page or my personal page, you will know what it’s about. Join me if you’re interested! Share your comments in the posts. We can learn from each other and offer hope along the way.
~Jamie
Jamie Hoos 