Learning to live: a journey

Back in 2022, I made some decisions to figure out how to actually improve my health. Going into spring, it felt like my whole life was spiraling downward. I made appointments and got in to see the dysautonomia clinic at Mayo Clinic Rochester. For two weeks, my husband, son and I stayed in Minnesota while I had many tests. The outcome was frustrating in hindsight, but felt promising at the time.

At the time, what I thought was my biggest issue was dysautonomia. I just couldn’t function, especially in the heat of summer. But I visited Mayo in the most perfect early September temperatures… the best time for my symptoms, but harder to discuss them. After meeting with me the autonomic neurologist asked me to get evaluated by the Chronic Fatigue Clinic, and I was. I had no idea how inopportune my timing was.

Neurology essentially told me: if you can’t deal with the underlying fatigue, we can’t adequately assess the neurological part. I went to the Chronic Fatigue doctors at Mayo during that visit and sure enough received the advice that I definitely met all the characteristics of ME/CFS. I had no idea at that time what I was getting into, and had never considered that I might have this, because my entire frame of reference of CFS at that time was the severe ME patient – bedridden and unable to even leave the house. That wasn’t me.

While meeting with the doctors about ME/CFS, they told me many things that are now considered untrue by Mayo Clinic themselves. Apparently, I had my appointment during a time of great transition. They had me go through an 8 hour training on how to help myself, which had some great ideas in it, but also had some very hurtful things that were detrimental to my progress. I left this believing multiple falsehoods, including the idea that if I could set my mind to it and understand that the fatigue was not real – that it was basically misfiring signals, and push past it, that continuing to increase exercise would help me the most.

Out of all the advice they gave me, I worked through it for a year and a half. I worked on improving my sleep quality (this was a good point, and good for everyone). I worked through aquatic PT and graduated to swimming laps at my local pool. Even though I’d have to take a 2-3 hour nap for a few days if I swam for 30 minutes, I thought this was just “adjusting”. I tried to push myself to work out 3-5x per week for 30 minutes, and was convinced that my elevated fatigue levels were just in my head and that I could make it through if I just had enough self discipline.

I had not followed ME/CFS literature, websites, or anything outside of Mayo, because I didn’t know who to trust. I was “helping myself” by acknowledging that I could swim even though I can’t walk down the street without my wheelchair. Finally spring 2024, I felt like my life was completely falling apart. I had been spiraling for months and everything was getting worse.

I read everything I could find about ME/CFS. I found Jennifer Brea’s documentary, Unrest. I joined online groups, read medical literature, and found that Mayo had supposedly stopped recommending GET and the other things they signed me up for… right around the time I visited. Knowing now that it was detrimental, no one from Mayo Clinic bothered to even send a message to say “hey, we’re changing our major recommendations for the treatment of this illness”. The Mayo Clinic website now reflects these changes, but I had not been looking at them.

I finally had a serious answer for why I was struggling all the time. PEM (post exertion malaise), and especially rolling PEM. The extra downside to PEM, is that it’s hard to mentally associate to what you do, because it’s delayed – sometimes up to 48 hours. If you, for instance, swim a mile, and then are so tired you can’t get out of bed 2 days later… it’s hard to connect the two.

The most useful tool I’ve found for it so far is the Visible app. I did purchase the armband and can’t imagine using it without the armband data. What it does is analyze your HR and HRV, along with tracked symptoms, to give a stability score for the day. Then, your HR determines the usage of “PacePoints” throughout the day. It’s a very personalized number, and being in their official Facebook group, it’s clear that there are people on both ends of the spectrum in the group.

The problem I found, is that if I drastically use more energy points than I should in a day, it’s going to be noticeable 2 days later with a crash. But more importantly, I didn’t realize how much going “just a little” over was impacting my life. Going over consistently means always having elevated fatigue. Instead of having a high peak of fatigue to cause a crash, the mini crash from Tuesday’s slightly elevated activity rolls into the mini crash from Wednesday’s slightly elevated activity, and so on… so that there isn’t a distinct “big crash” of fatigue, but a constant rolling PEM level that never goes away.

The goal of using the Visible app (or any other form of pacing), is to find the level that you can stay under, where you are not generating this rolling PEM. It’s going to take weeks of keeping it down to be able to start experimenting with increasing that energy envelope and seeing if I can tolerate more, but I have to fully recover from my very long rolling crash before I can even attempt it.

I do have moderate ME. Parts of me wonder whether I contracted it long ago and was mild before getting exacerbated, or whether I have had it a shorter span of time, because there are things I think back to, watershed moments of my life taking a serious decrease in my ability. I do know, that in 2017 when I was seriously running for the first time in my life, I felt better for running every time. I also know that in 2019, I had a complete breakdown about being unable to do the things I used to, and should have been in a wheelchair. At the time I chalked it up to my other chronic/genetic conditions (EDS etc), but somewhere along the line, it became ME. It wasn’t Covid. I did contract Covid for the first time in May 2023, but I was ill and had already been diagnosed at Mayo by the time I contracted Covid for the first time. While many more people are being diagnosed with ME from Long Covid, this is not my experience. In fact, I had read so much about Long Covid causing ME and the most important thing to do being rest, that I actually did go overboard with rest while I had Covid and refused to push for anything. I was also extremely sick with it (probably at that borderline of needing the hospital but being able to stay home with antivirals).

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