5) My Chronic Illness Saving Grace: Visible Band Pacing
My Chronic Illness Saving Grace: Pacing with the Visible Band with the EPP logo over a day of Khaos’s actual heart rate data.
I’m gonna take a quick break from the trauma diving to go over the thing that has helped me the most with remaining functional over the last year.
I’ve been saying, “I’ve been tired since I was 16” for years now and people always laughed it off… but I wasn’t joking or exaggerating… and I never realized how much I wasn’t joking until I implemented pacing into my life. Since then I have actually experienced having energy for multiple days in a row. But you have to be careful, it’s so easy to get over confident, and there will always still be factors out of our control that can trigger flares and rough days.
If you don’t know what pacing is, or have never heard of spoon theory you can click on it, or…
Basically it’s the concept that a chronically ill person (or anyone really) wakes up with a set # of spoons worth of energy for the day.
Throughout the day activities cost different amounts of spoons to complete.
Showering might be 5
Brushing your teeth 2
Getting dressed 3
Cooking breakfast 4
Going to the bathroom is 1….
Now imagine you wake up and you only have 12 spoons to make it through your day…
EVERY DAY you only get 12 spoons but you’re already at 15 by the time you eat breakfast if you showered and got ready for work before cooking.
This is the reality for so many people suffering ME, Long Covid, Chronic Fatigue, Sjogrens Disease, Lupus, Fibromyalgia, HSD/hEDS, EDS and more.
I am extremely lucky that my daily spoon ratio, when broken down like that, is probably closer to 25 currently, but that still means if I try to keep up with a normal person for a day I’m ready to tap out and crash by lunch.
I got the Visible Band to track my Heart Rate and help me understand what activities were really costing me in data I could SEE not just feel. I’ve always been the first one to doubt myself, the imposter syndrome is real and always popping up no matter how much validation I get from data, doctors, and diagnoses that I’m really not making it up.
The visible band tracks your heart rate for 4 days and then at the end of the getting to know you period you get your Resting HR Zone, Activity HR Zone, and Exertion HR Zones. These are used to calculate your daily Pace Points. (Spoons!) Time spent in rest doesn’t accumulate points, but being in exertion accumulates points at a faster rate than your activity zone. Everyone’s body and heart rates are different, so 2 people who are similarly active could have completely different points allotted to them. This is the worst part about the band in my opinion, there’s no way to compare yourself to anyone else, only yourself since you started tracking. And while I hate that, it’s probably actually a good thing.
My Visible Journey and what has worked for me.
When I first started wearing the band it felt like existing was an activity. I had to lay perfectly still on my back and do grounding breath work to stay in rest while awake. If I moved my hand or thought too hard my heart said it was an activity. Standing up or doing anything while sitting was exertion every time.
My first shower with my visible band cost me 7 pace points on a good day. Since then I have made adjustments every shower trying to figure out what affects me and how I can lessen the impact. I brought back out my shower stool, from when I broke my ankle, because standing is always an issue and that alone cut it down a few points. Then I changed my shower head so I have a detachable one as well as a fixed one so I could move the water to me rather than have to adjust my whole body and this got it to under 3 points.
Now it depends on the day but on good ones I can get the job done for under 2 points!
That’s the most success I’ve had minimizing my points for any single activity, but being aware of what things actually cost me, and then budgeting my life around the energy I HAVE is enough for me right now thankfully.
When I am doing higher energy activities… like folding laundry, I will keep the visible app open and take rest breaks anytime my heart reaches exertion. Getting things done takes a bit longer, but once you learn to slow down you realize you actually will have plenty of time with your new energy limitations.
I prioritized my points and energy for months before I started getting real glimmers of hope. But you could have better results because I only do this 5 days a week. On Fridays and Saturdays I still have to bartend to afford life, and those shifts can be 25+ points themselves. But I do make sure not to do ANYTHING else on those days if I can help it. In the days before the visible band I would have a whole day of doing things to exhaustion then rest for a few hours and go to work.
Life and society likes to make us think we NEED to finish everything in a timely manner. Makes us feel like a mess on the table makes you a personal failure. It’s hard to go against the internalized ableism we may have acquired throughout our lives. But I personally think learning to listen to your body and doing what it asks of you can lead to a more fulfilling life.
After the first month I noticed I was starting to be in rest more throughout my day, I could now play on my phone or read while staying in rest mode. Of course I got sick and my heart rate still hasn’t recovered so I’ve been living life on the edge at 25 points or more almost every day since May. But I finally got the POTS diagnosis from my new cardiologist!
And he even prescribed me medication to help with it!
But insurance is being difficult…. so I’m still waiting on that.
If you would like to try visible yourself you can click this link for $20 off. It’s currently on sale already so this is the cheapest I’ve ever seen it at $60. There is a $20 monthly membership fee! I don’t want anyone to go into it unaware of that!
https://join.makevisible.com/7378459ac0da30
I am not sponsored by them or anything it’s just my refer a friend link!