September, 2021

(The story starts here: When Over-Training Syndrome Turns Chronic)

Since March of 2021, I have been experiencing a bumpy sort of recovery. There are times when I seem to make big jumps (like when I began practicing the Wim Hof Method (see Breathwork) and my brain fog disappeared) and times when I think I see a positive trend only to be disappointed. The truth is, I’ve been involved with therapies that seem to be helping for only about 5-6 months: not very long at all, and trends are difficult to see. But there have been some definite improvements.

As I describe here, I think of my symptoms as falling into two categories: central nervous system (CNS) symptoms and immune system symptoms, and there is a difference between the fatigue caused by each. I’m seeing improvements in both categories, and still having symptom expression in each.

On the CNS side of things, the most objective improvement is that my average HRV has doubled since March, and on my best days recently it was 3x as high as my March average. That’s huge. Palpitations are less common and less extreme, and incidents of tachycardia are much lower. Orthostatic intolerance is periodic and mild now, as opposed to frequent and sometimes extreme, as it was over the winter. I have had only one episode of fainting since April. (Learn more about my symptoms here.) Improvement in these symptoms is doubly important, as these are the symptoms that pose immediate threats to my physical safety.

In recent weeks, my magnet therapist (see Biomagnetic Therapy) has had a huge breakthrough in treating my sleep disturbance, and I have been enjoying higher quality restorative sleep and waking feeling, if not rested, at least not completely exhausted, about 50% of the time (the other 50% I am still not sleeping well and wake feeling as if I haven’t slept. As that has been the norm for over 3 years, being down to only half the time is a big step up!)

I have gotten better at calming my back spasms, using a simple technique recommended by Nicole Sachs (see TMS): when I feel a spasm coming on, I say to my body, “Go ahead, spasm. It’s fine, go for it.” I embody that sort of careless attitude and my fear dissipates. When I do this, it’s like I can feel my brain slowly turning off the spasm signal. (A similar method has also improved my chronic Achilles pain, something that predates OTS by over a decade.)

Several of my immune symptoms have improved: hives and mast cell activation are quite a bit less common and less severe, and I have learned a breathing technique that helps calm mast cell activation when it begins. Canker sores occur less frequently, though can still be severe.

I continue to experience cyclical immune activations. These usually last 1-3 weeks, during which I may feel mild symptoms as though I’m coming down with a cold, to more severe symptoms where I may feel like I have the flu. Swollen lymph nodes generally accompany these episodes, and canker sores still make appearances. I can generally “fake my way” through the immune activation, meaning that as long as I’m not experiencing a CNS-driven energy slump/crash, I can do the bare minimum to continue living my life, and not obviously appear ill.

Because my overall energy levels have come up to the point where I can reliably get all of my work and chores done, when I’m not having immune symptoms I feel quite healthy, so long as I don’t do anything higher exertion than walking around my apartment. As soon as I try to walk longer distances or do exercise of any sort, I start to notice the CNS symptoms that are still present.

Air hunger is the dominant one. Air hunger feels like there is no available oxygen in the bloodstream (though tests have shown my blood oxygen saturation to be normal.) It’s a similar sensation to the first day trying to train at high altitude, or for those who have tried Ketosis, like the Keto flu. If neither of those comparisons are relatable for you, go try to run one lap around a track as fast as you can. The body-wide burning sensation you feel is the result of anaerobic glycolysis: the production of energy in the absence of oxygen. Most athletes feel this sensation only in the hardest intervals, or perhaps in a temporary push over the top of a hill. With a few (seemingly random) exceptions, I have had the sensation of air hunger daily for over a year during any activity more intense than walking a few paces.

Mild to moderate air hunger alone doesn’t entirely prevent me from exercising, but anything more intense than walking a short distance requires care. I don’t attempt to exercise unless I’m having no immune symptoms, slept well, feel good, and had above average HRV the night before. On these rare days, I tend to favor cycling or low-intensity strength training: two things in which it’s easier to control my exertion. It doesn’t necessarily feel good, but it’s a relief to be moving. Severe air hunger is less common now, but it makes even walking a few paces challenging.

At this time, my primary goals every day are to stay well within the bounds of what my body has energy for, to devote myself fully to whatever treatment is on the table that day (usually some combination of Wim Hof, Journalspeak, EMDR, talk therapy, Biomagnetics, somatics, and/or vagus nerve exercises,) (See My Healing) and set myself up for a solid 12 hours in bed, up to 15 on a bad day. The continuance of on and off fatigue, dysregulated sleep, and immune activation shows me how hard my body is still working to heal.

Even with the clear improvements I have made, it’s easy to fear I’m imagining my healing. Though I try to focus my energy on my conviction that I will heal, it would be a lie to say I’m not afraid. Fear of never getting fully well is a natural part of healing from chronic illness. The experience of being so sick, and having my body be unresponsive to treatments, will stick with me forever, and that is as it should be. There is much I needed to learn about my relationship with my body. Fear that I might stay sick is just another way my body is communicating its extreme desire to get well, and thrive.

Paradoxically, I also experience a fear of what will happen when I do get well. So much of the life I lived before getting sick feels like a dream now. I don’t yet know what aspects of my former life I will want to return to and expand upon. Things I believed I would prioritize or base my life around in future are inaccessible: in some cases temporarily, but in some cases permanently. Getting well won’t reopen all the doors that getting sick closed, within athletics and beyond. Healing will also expand my life in ways I can’t yet predict.

In short, if you’re curious about what might come next for me, so am I. I have a long road ahead of reckoning with the way dis-ease is changing my perception of the life I want to live, my relationships with places and people, and the relationship between my body and mind. Stay tuned for the next blog post, addressing this very question: what’s next?