Diving deeper into fatigue

In the last 2 weeks since I wrote my original post about Chronic Fatigue, I have been exploring symptoms, managing fatigue, figuring out what makes things better and worse. I have found tools, podcasts and support groups.

A really cool podcast that I found was Business with Chronic Illness by Nikita Williams. What I found refreshing is that she is speaking to those of us trying to manage a low energy state while being in the business owner role. That led me to considering how I can create more evergreen or long-form content so I don’t have to reinvent the wheel as much. I also am delving into how to have a business that is asynchronous. Making appointments is difficult because I am not sure I will be able to sleep the night before and therefore wake up on low energy mode. This makes planning hard because I usually am a morning person and prefer to get stuff done early – except when my stress keeps me up to 2am, and then I am not able to have coherent thoughts until noon.

Another interesting aha I had this weekend was the idea that my fatigue isn’t actual fatigue but lightheadedness. What I think of as fatigue is actually a strong impulse to lie down. It is different from – I am tired, and want a nap, it is more of a being upright is too much work so lying down seems easier. In that state, I usually sleep really hard, the kind of sleep where 1-2 hours goes by and I am genuinely shocked that I slept that hard. Many times it happens after eating, or getting overheated. I am now digging into the idea of orthostatic intolerance and how to compensate for that. I have a slew of symptoms that fit that and some simple fixes include elevating my legs while working at the computer or eating and staying cool.

I am fighting with my preconceived idea that I am being lazy and unprofessional by reclining on my couch while working. My therapist calls it adaptability, and I am making the best out of the situation I find myself in. I don’t know if this is the answer, but I do know that it is enhancing my ability to think. There is no rule book saying that work must be done in a certain way, although I do now understand why working from home is probably my only option.

Another tool that I am using is Visible. It is an app that helps with pacing. It has a free portion and a subscription + band for understanding the nuances of what uses energy and what replenishes it. I have a similar system on my Garmin called body battery but it doesn’t seem to correlate with how I feel. I would love to experiment with the Visible band, and see how they compare. Especially since I am in the beginning stages of understanding limitations, it would be nice to have some measurements that can help me navigate high and low days. I am using the free version which does measure HRV in the morning using the phone’s camera and allows me to track symptoms. After a night of poor sleep, it told me today should be a rest day to get back to baseline.

So while I continue to navigate my own health journey, I want my story to be a light for others. I can definitely help with managing care within a health insurance or medical cost sharing framework. Being our own advocate when navigating health care is so important and I have the experience and understanding of how insurance and health shares work to help folks figure out how to afford it.

Start here with the chaos calculator to see how I can be on service to you on your health journey.