Visible: Pacing for illness

Over the past few years I’ve been struggling more and more with energy levels that are not obvious enough to yet receive a diagnosis. Most days I struggle to do the bare minimum to care for myself or tidy up. Random days I’ll sleep well, have a lot of energy and get a lot done, but then days later I’ll be exhausted. I was tired of not knowing why and not knowing how to pace myself. I had gone to my cardiologist and to another doctor who ran tests and said I seem relatively healthy. I saw Visible advertised several times on Instagram, but didn’t think initially that it applied to me. Over time I realized I needed SOMETHING to help me collect energy data, not just activity data on my smart watch. I needed to see what’s going on in my body, and I needed help with pacing. I needed to see if there were any trends I had so I could see what helped and what hurt my energy levels. I’ve now had visible for 2 weeks, and I’m so grateful for the data it’s been collecting. The morning stability score has been on the nose and the pace points help me to not overexert myself. Being able to see my heart rate variable, and to get warnings so that I slow down, or at least so I’m alert why I’ll be tired and need to rest later if I cannot stop a task, is helping both myself and my partner tremendously. I’m finding I’m actually able to accomplish more and communicate my needs better because I now see when I need to rest and when I have more energy to get things done.

After being diagnosed with POTS/CFS I really wanted to keep an eye on my pacing (because unlearning and re-learning how quickly—or slowly—to do literally everything is a *lot* harder than anyone says, even people who warn you it’s going to be really, really hard) but all the fitness trackers I could find were geared toward encouraging activity and ensuring periods of high cardiac activity, instead of, you know, exactly the opposite of that. So when I (somehow???? can’t exactly remember, thanks persistent brain fog and memory loss!) came across the Visible app, I *smashed* that order and subscribe button, oh yeah. It’s definitely been more helpful than getting chastised about sitting around for too long, and I really love being able to make notes about specific activities that impact my heart rate; I really love that the app functions as sort of a daily symptom journal in general, since I don’t have the capacity to keep a separate record. It is pretty easy to get wrapped up in obsessing over your own biometrics, though, so be warned. In general, I’m thrilled an app like this exists! I’m hopeful that there will continue to be more incorporation of biometrics to go along with the self-reported data (hopefully more HRV access, maybe a pedometer? maybe an oximeter? am I asking for the moon? it’s possible). Also replacement armbands! I ordered one from whatever that other company is, but it’s orange, and bulky, and frankly I do not like it. Thanks!

I stumbled upon this app by accident on December 24th, and was immediately very impressed. Within the first couple of days, I had reason (or thought I did) to contact customer service. The speed with which they responded — on a holiday weekend, no less — as well as the kind, professionalism of the Responder caused me to start worrying that Visible was a little too good to be true. Forever the cautious optimist, I decided to use the app for a time and see if the glitter wore off. After more than a month of consistent daily use, all I can say is… Rarely do you find a product or producers of a product that so clearly care about what they’ve produced and the people they claim to have produced it for. Visible has done more to help me assess, monitor, and manage my ME than all of the blogs, forums, or doctor’s inquiries I have made in the past six years, even in its current beta form. As someone who has endeavored to navigate the woefully inadequate information and available assistance for ME sufferers in this country, I cannot tell you how valuable this has been. If this doesn’t become the go-to tool of the entire ME/CFS community, it will only be because they haven’t discovered it yet.Healthcare providers should be required to give everyone diagnosed with a chronic illness the instructions for how to download this app. Believe the hype. It is so apparent that this was created by people who “get it”, and have been kind enough to give it to others who are suffering through an ongoing or protracted illness.Incredibly impressive. As I said — Visible, I see you! Kudos.