Making Invisible Illness Visible

 

I've been using the Visible app with a Polar tracking armband for about six weeks now (I used it without the arm band for over a month before this). I wanted to wait to share about it with you guys until I felt I had a really good idea of how it was going to affect my life. I almost wrote about it last week, but I felt like a hypocrite writing a post about how much better I was feeling when I had a terrible migraine. I decided to write this post today because what I've learned is that this is a process and I will continue to learn as I go. I don't know it all or understand it all yet, and maybe I never will!

Visible is an app that helps to make invisible illness visible. If I had a broken leg in a cast or if I had lost my hair to chemotherapy treatments you would be able to tell by looking at me that I was going through something. Many chronic illnesses, however, don't present externally. Just search for "But You Don't Look Sick" and you can be entertained with memes for a long time!

If you see someone with an invisible illness out in public, odds are it's a good day for them, otherwise they wouldn't have made it out of the house (unless you happen to run into them in a hospital, the odds change there!). You are likely catching them at their best and you have no idea what it took to get them there or what it will cost them to have been there. It may seem strange to say, but telling them they look great might not have the desired effect. Yes, most of us are pretty used to it and we try to take it in the spirit it was intended, but all too often it's an indicator to us that you are not likely to take seriously what we are going through. People just have such a hard time getting past the fact that you look nice but you may be in more pain than they've ever experienced.

One of the most toxic effects of this seemingly benign issue is that it can have people questioning their own illness, their own symptoms even. "Is this migraine really that bad?" "Maybe everyone experiences this and it's just normal?" "If everyone thinks I look fine, maybe I am really fine and I should just ignore this pain." Unfortunately, we don't have the technology at this time to measure the pain someone is experiencing. I truly hope that someday this comes into existence and does away with the pain scales for good!

Enter Visible. While it cannot measure the pain you are experiencing, it can measure its effect on your body. It does this by keeping track of your heartbeat and heart rate variability in addition to reported symptoms and sleep quality. You wear the band during the day and, based on your ongoing heart rate, it determines whether you are at rest, active, or exerting yourself (meaning heavy activity). How these are defined is going to be different for everyone. For my youngest son, just sitting on the couch might put him into a restful state and it might take lifting at 75 pound tire to move him to a point of exertion. The graph below shows my heartrate for one day:

The white-blue patches are my rest periods, the medium blue represents activity, and the pink shows exertion. The gap near the beginning is where I took a shower and took my band off. For me, getting dressed and ready in the morning and evening typically puts me in a place of exertion. For that matter, any time I stand up it will switch over to that, at least for a while. The medium blue spots are often me sitting at my desk working, or even reclining on the couch. 

So what do I do with this information? Well really, it's about what Visible does with it for me. I wrote a while back about the Spoon Theory. This is a way of representing energy as physical objects and thus quantifying it's presence and usage. My family is used to me saying, "I'm low on spoons," or they might ask me, "How are your spoons?" Visible has taken this concept and created "Pace Points". They would be the same as what I would have previous referred to as my "spoons". When I first got my Polar arm band and connected it to my Visible app, it watched me for four days. A lesson from my hindsight, do this at the beginning of the day as my first "day" was about twenty minutes before I went to bed so I think it threw off my averages a bit! After the four day period, it will ask you a few questions like, "Was this a normal amount of activity for you?" Based on the data it collects and your answers, it will suggest a starting amount of Pace Points. Don't worry, you can adjust this as you go, but this is a great starting place.

When I wake up in the morning, before I get out of bed, I take my tracker out of the charger and put it in the arm band, and then on my arm. I go into the Visible app and do my Morning check-in. It asks me how well I slept the night before then it checks my resting heart rate and heart rate variability. Using that info along with my recent symptom scores it computes a Morning Stability score. This will range from 1-5 with 5 being the best. The lowest I've gotten so far is a 2, and I haven't gotten one of those in over a month! Here's a three-month view of my Morning Stability Scores. As you can see, there's measurable improvement!

When you have a score of 3, the app cautions you to, "Pace yourself carefully today, if you can." At 2 it tells you, "Your body is out of balance. You may want to plan a quieter day today." 5 gives you the good news, "Your body's signals are stable, and one or more are trending positively. Keep pacing yourself." This score gives you and idea first thing in the morning of how you should approach the day. If your body is at a Stability Score of 3 and you have a crazy full day planned, it's time to start paring back your expectations!

From here your pace points tracker begins. It will take your total pace points for the day, that were determined before, and divide it by the time remaining between now and your reported bedtime (the default is midnight, you'll need to set it if you go to bed before this). There's a line in the middle of your main page for the day that shows the pace points you've used for the day:

The little white arrows in the middle show the maximum points you could have used by this point in the day and still be on track. They are NOT telling you where you should be, they are indicating when you might be running into trouble. The blue line indicates your actual point usage. If it goes much beyond the arrow tracker, the line will turn yellow, warning you that you may go over your points today if you don't slow down. If this happens early enough in the day, I can choose to take a nap, or if it's too late for that I know that my evening activities will involve resting on the couch. It may mean that I don't have enough points left to cook dinner and we have to divert to a backup plan. If I'm not paying enough attention and this gets too far away from me it's really hard, if not impossible, to recoup. One day I saw that I was in the "yellow" and I decided to work on my computer on the couch until I brought myself back into the "blue" range so I could complete some more tasks on my to do list. That was the day I learned that sitting on the couch working cost pace points too and I never did get to do more that day!

You might be asking yourself, "Why would I care about staying in my Pace Points range? Why go to all that trouble?" I'll tell you! It's not just my Stability Score graph that's showing improvement, my symptoms are as well! Before I started using Visible I was averaging 4+ migraine days a week. My neurologist and my PCP had tried a myriad of different supplements, physical devices, pharmaceuticals, trigger point injections (yes, I was getting upwards of 30 shots each sitting trying to get rid of these things!), massage, chiropractic, you name it! I even have an ice head cap* that I've tried. Nothing seemed to be helping (except cruising! For some strange reason, whenever I'm on a cruise my migraines seem to disappear along with my dizziness and nausea. My husband says I can't live on a cruise ship though 😜). Since I've been working to learn my limits and stay within my Pace Points, my migraines have gotten SO MUCH BETTER! When I stay within my points, I might have as few as 1 migraine day a week, a condition I haven't experienced in over a year. I have even come off of ALL my migraine medications. Now, if I go over my points for a day or two, I can be certain that my body will react negatively and I will feel crummy. The more I experience this, the more I start to internalize and believe it. The more I am motivated to pay attention and stay within my points. 

How is that reflected in my life? If I know I have something coming up in the evening, like a dinner party or a trip to Zoo Lights, I take it really easy earlier in the day to "save up". My day's activities are often determined by "how my points are". If I'm at or above my tracker, I won't begin a big task like folding laundry, or an unnecessary one that someone else could do like washing dishes. Yes, I am sad to say that means my laundry from last week is still in baskets as I am doing laundry today for this week. I'm still learning how to figure this all out! 

Here's the Thing: Nothing in life is a miracle quick fix. The Visible app will not change your life, you have to. What it did was give me the information I needed to do it! Stay tuned for more on this!

* As an Amazon Associate I might receive a commission for products that are purchased through links from this page. It does not affect your cost at all and only goes to help me further my blogging dreams!

BLOG UPDATE: 

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