Life Slowed Down: A Health Check-In

I'm unsure how to start this post, but I want to share what's been happening with me. I feel like at least a few months have just disappeared this year, and I think I'm well enough to catch everyone up.

My health changed in 2015 when I was hit with a whole host of health issues. After a long journey we discovered I have hEDS (hypermobile Ehlers Danlos Syndrome) and ME (Myalgic encephalomyelitis). I've talked about this before here.

In 2020/21, during lock down, I was lucky enough to upgrade from moderate ME to mild ME. I had remained in mild ME with very few bed-bound episodes in that time. In April of this year after nearly 5 years in mild, I had a regression and went to a moderate level of ME. It was a hard and fast crash and felt like I had my legs swept out from under me. I have been mostly couch bound since April. By the end of April I was desperate and researching experimental drugs that might help — luckily I had a moment of clarity. I remembered seeing lots of articles last year about the Visible Armband. So we decided to try it and I ordered one.

To understand why I was interested in the Visible Armband you need to understand how ME works. The more strain I put on my system, the worse I am. With ME you can work yourself to death if you overdo it. Sometimes overdoing it means catching a cold or having severe allergies. I'm very good at paying attention to my body and resting when I need to. It's part of the reason I've been able to maintain mild ME for so many years. This time I couldn't seem to rest enough. I could not seem to improve no matter what we tried, which is why I was researching experimental drugs. I practice Pacing with PEM (Post-Exertional Malaise), but with only Fitbit irregular feedback, I wasn't getting enough information to pace myself into any improvement. The Visible Armband is a heart rate (HR) monitor that tracks my HR live and reports my heart rate variable (HRV). Visible uses these numbers to give me a daily Stability Score to let me know how I'm doing. They also give me "Pace Points" to use throughout the day. If you're familiar with the spoon theory, the pace points are the same thing. If you aren't familiar with the spoon theory, they are energy 'credits' I can consume through the day. If my HR is under a certain number (about 75 for me) I'm in rest and not using any pace points. If my HR is in a higher range (about 76 – 104 for me) I'm in active and I am using pace points at a reasonable rate. If my HR spikes above a certain number (about 105 for me) I'm in exertion and I use pace points FAST. This information has been absolutely invaluable and we have been able to make changes and see measurable improvement¹ in the >30 days I've had it.

One of the first things we learned is that food is a challenge for my body. Sitting or laying while digesting a meal will have my heart rate at the same level as walking or wrestling with the dogs on the floor. If we try to walk too quickly after a meal I will be in exertion, when if we walk before a meal or wait a while, I will just be in active. Certain foods (greasy especially) will make this worse, and some foods will put me in exertion while laying flat. So I changed my diet and eating habits. I try to eat smaller meals more often, and I stay away from grease and caffeine.

We have also gotten several new mobility aids that have helped me save energy. I have a shower seat that has helped me shower without being in exertion. We have stools in the kitchen and bathroom so I can sit at the counters to do what I need to. I have a walking cane that turns into a neat little stool that we carry on walks so I can rest if I get in exertion for some reason. And we have a wagon for park visits that the pups can ride in and I can sit in if necessary. They have really helped me save my energy on the daily things that have to be done.

May 12 was International ME awareness day and this year the Bateman Horne Center released the first Clinical Care Guide for ME/CFS. I used that and decided to add some supplements to my daily routine. As of April 2025 my only daily medications were an Allegra and prescription Prilosec, but I have used supplements in the past. After some research and decision making, I started with 650mg Magnesium L-Threonate before bed and it was amazing from the first night. I never have trouble falling asleep, but if I wake up for any reason (ie dogs) I don't go back to sleep. The first night on L-Threonate, I woke up and went back to sleep multiple times. It was amazing. I also tried a half a dose of creatine in the morning, but I've only tried that a few mornings and I'm not sure of the results yet. Next week I'm going to try Acetyl-L-Carnitine and Omega-3 with CoQ10.

I'm hoping that with this technology (Visible Armband) and some supplements to help me out, I can not only get back to a mild case, but hopefully actually go into remission.

Daniel has been absolutely amazing during this recent setback. He's always been amazing, but I'm surprised at how often I'm reminded how amazing he is. I have to thank my business partner for being so understanding with my fragile health. If I've missed something or forgotten something please forgive me, brain fog is my most hated symptom and the last few months have disappeared.

I'm so proud of myself for writing this. I don't think I could have done so last week. I think I spent about half a pace point on it, and I think it was worth it. Before I got sick in April I was working on putting up all our travel adventures from last year. I only had a few left, those will eventually be finished, but they will have to wait for me to improve more. Don't worry, notes are taken, photos are organized, they just need to be put together and finished up, so they won't be forgotten. Eventually I hope to catch up and start making monthly posts about our adventures and our playlist². I can't wait to get back to Aunt Ammi Reads and for Daniel to finish up the next installment/s³ of his Anthology series.