Regulating Tools: Lifelines For MECFS & Beyond

Today I was in the hospital in Bali, with an infection that started minimally a week ago and has now spread. The last few days I have been in a remote part of the island, trying to find good care. It has been challenging, and I have had little choice in how I had to push my body past fatigue to travel long distances on the back of a motorcycle in pain to find a doctor. The doctor I did find did not have the resources to help. I then had to make a decision to travel 4 hours to  a major hospital right away through mountainous roads exhausted, or stay and try to gain strength while the infection worsened.

During these last days, I could feel my nervous system was struggling, as my body not only worked to fight an infection, but lack of sleep, being alone, not speaking the language, and unable to access resources pushed me constantly towards panic; the panic far more detrimental than the infection itself.

Luckily, I have tools. Tools that are so much bigger than MECFS. Tools that save my life; time and time again. Tapping and breathing when taxis are not available after exiting a clinic onto an empty street after dark and I feel vulnerable and must think on my feet. Feeling my body in a gravity hug on the back of a scooter struggling to stay upright. Breathing while I'm poked 10x with a needle by an over-eager phlebotomist who can't find a vein. Reminding my body this is temporary; I am safe.

I want to be CLEAR ON THIS. My nervous system still talks to me. Sometimes it talks LOUDLY. I still feel overwhelm, after recovery. Feeling overwhelm doesn't mean I'm not recovered. Perhaps I feel it more than I did before MECFS because I once had MECFS. On the other hand, perhaps it's because I just am in an ongoing conversation now with the body. Maybe its a bit of both.

But the time to adopt tools to regulate your nervous system is NOT when you are crashing and in a lowered state with higher symptoms. Likewise, the time to learn to meditate is not when you are so hyper aroused that it feels like the body is on fire. It will be so difficult to do. Crashes are the times to pull out the tools you have accustomed your body to use; you want them so well-learned that you know what to do without having to think about it; like you reach for your toothbrush in the morning, bypassing conscious thought.

If i tried to teach myself those tools while also managing this difficult time, I would likely not be able to do so. There is real cause to worry; but worry will not help me recover. So please start wherever you are; don't wait to feel better. If you're mild enough that you dont feel symptoms most of the time; practice regulating tools every single day. Make them as habitual as breathing. If you are severe and feel symptoms constantly, start anyway at your baseline; dont wait till you're feeling worse and drowning in fear and panic to try to learn.

I'm now at a homestay with a trusted family and safe; but I have to wait 3 days for results and in that time, the infection may worsen. I have had years of medical trauma, and one of my emotional triggers is around getting sick, viruses, infections etc - partly because in my life it was so impactful to be sick, and also because I still feel things more intensely than most; what I call the glorious highs and lows of life; and well, sickness is not exception.

Now is the time for me to crawl into the nest of my yoga nidre; hot showers, listen to sounds of nature, tap and tell myself my body is healing; laugh as much as I can, call a trusted friend, hug my arms and kiss my hands, trust that the right medicine will be found once the culture comes back; rejoice in blessings, and DO NOT FEAR.

My fellow MECFS warriors; both faith and fear require us to lean into what we cannot see. Which will you choose today?