A Health Update, and Message of Hope
Y’all. It has been a hot minute since I gave a health update. I have started a number of blog posts, but things are just changing so fast my updates get outdated before they make it to the website. So I’m very excited to finally be bringing you something.
Among the questions I see posed to folks who share their stories of recovering from ME/CFS and similar dis-ease, one of the most common is: “But are you really healed?”
I totally get this feeling. The western medical system’s response to conditions like ME/CFS is symptom management. It’s an assumption that the underlying cause of the dis-ease cannot be resolved. Fear is deeply ingrained, and other people’s recovery stories can sound too good to be true. “Maybe it was possible for them, but not for me,” we might think.
Throughout my healing, I was afraid to believe I really was healing. But by October 2021, I knew my nervous system was way more functional than it had been in a long time. My other symptoms slowly began to disappear. My latest milestone is that I have completed my biomagnetic pair therapy! I am finally confident in saying I am not only healing, but heading for a state of thriving that exceeds my pre-illness health status.
Here is a summary of where I’m at now, in detail:
I have no restrictions on the amount of “normal life” I experience in a day. That means I can consistently do as much work or errands as I want to. I feel safe in experimenting with adding more things, confident I will not crash, and that I will be able to handle minor increases in fatigue or residual symptom expression that might occur.
I have always taken my rest very seriously, and I still do. I will never be reckless with my sleep, and balancing the more stressful moments of the day with moments of calm remains an important part of my daily routine. I am marginally more careful about these things now than I was before I got sick, but not much, and honestly the change feels like an improvement. If circumstances make optimal balance impossible for a day or two, I can handle it.
Building on the progress I was starting to feel in October, I can now feel when, following a stressful event, my nervous system returns to my baseline state of parasympathetic activation. I credit this improvement to the work I’ve done in brain retraining, breathwork, trauma processing, and vagus nerve stimulation.
My sleep continues to improve. I wake feeling refreshed almost every day, and I am back to sleeping only 9-10 hours per night, (which only requires 9.5-10.5 hours in bed, because my sleep consistency has improved,) down from 12+ hours of sleep and 15 hours in bed, which was the norm a year ago. 9-10 hours of sleep per night is consistent with my pre-illness normal.
I am still managing the more stressful aspects of life more carefully than I did before getting sick, which includes training stress. Although I want to be out exercising all the time, I add this particular stress to my days only when most systems are a “Go.” That’s true a majority of days now, which is awesome, but my body still feels a little fragile, and this is one of the ways I’m caring for it while it continues to heal. I think going forward, I’ll always be slightly more careful than I used to be, because clearly my pre-illness routine did not work for my body! But I’m not yet to my fully post-illness state when it comes to exercise and other high-stress activities.
I have experienced a complete resolution of the following symptoms: heart rate suppression, heart palpitations, tachycardia, rashes, back spasms, sore throat, fever, chronic headaches and/or body aches, brain fog (yes, that’s a full resolution!!) temperature dysregulation and spontaneous hypothermia, dyslexia, POTS, cataplexy, constipation, fatigue, hives, food intolerances, glossitis, canker sores, and swollen lymph nodes.
I have so far experienced partial resolution (meaning symptoms occur less often, are less severe, or both) of the following symptoms: sleep disturbance, suppressed heart rate variability, difficulty responding to training stimuli, and air hunger.
To summarize all of these changes in one sentence, I would say I actively feel my nervous system (and therefor my whole body) rebuilding its resiliency. The loss of resiliency was the root of every symptom I ever had, and I am not just learning to work around or suppress my symptoms. I am healing from the root. You can too.
If the resources and pieces of my story I have already shared do not answer your questions, or if you need help getting started on your healing journey, please reach out. I will help you in whatever way I can, including connecting you with other individuals who have a more developed array of resources to offer than I currently do. If you know anyone who is struggling with Myalgic Enchephalomyalitis, Chronic Fatigue, Post-Viral Syndrome, Long Covid, Fibromyalgia, a prolonged adverse reaction to a medical procedure or vaccine, Chronic Lyme, Dysautonomia, or Over-Training Syndrome, please consider sharing my blog with them.
Fear of never getting fully well is a natural part of healing from chronic illness, and acceptance of where our body is at is a critical piece of recovery. There also comes a time when acknowledging the healing we are experiencing (whether subtle or obvious) becomes vitally important, and visualizing the future becomes inspiring. On the blog in September 2021 I hinted at plans to become a biomagnetic pair therapist, and shared the mysterious pull I feel to go to Flagstaff, AZ. I am delighted to announce:
I have begun my training in muscle-testing, and am registered for my first week-long seminar in biomagnetics in May! And in March, I will set forth from Vermont to spend 2 months traveling: a month in Flagstaff, and a second, yet-unstructured, month on the road.
The emotional journey of healing continues to be as much an adventure as the physical side of healing, and those ideas will surface on the blog as I am able to share them.
It’s a new year, and you know the saying: new year, new you! How corny. But in my case, it may be true, right down to the cellular level.
Wow, I’m so happy for your healing!! Your story resonates so closely with my own–after 8 years of debilitating CFS/ME and numerous autoimmune diseases, I have largely recovered this year. Gosh, I have the same changes to sleep and regulation of the tachycardia/POTS/fainting, though have only partially resolved the temperature dysregulation. I’ve feel so alone and a bit guilty about my recovery, so it makes my heart so happy to have found your blog. I’m in Phoenix and visit Flagstaff a few times per year–it’s a great town, and I hope you love it!! Cheers, and here’s to another year of healing good health! 💕
Thank you! I am so happy to hear you also have had a healing year! I would be curious to hear more about what sorts of tool and techniques you used in your recovery.
Flagstaff is wonderful, and Sedona too- very healing. I enjoyed my time there very much.
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Absolutely, I would be happy to share. In a nutshell, I never fully recovered from a bacterial+fungal lung infection in 2014. It took until 2019 to receive any diagnosis, the first few being CFS, HPA-dysfunction, POTS, MCAS, and gut dysbiosis. I saw very mild improvement gradually over 3 years with strict AIP diet, 12-16 hrs sleep daily, no stress, cultured probiotics, sublingal glutathione, electrolytes, cod liver oil, d-ribose, vitamin D+K2, quercetin, curcumin, n-acetyl cysteine, and low-dose naltrexone. (There were 100+ other tools, techniques, or treatments that I tried and which didn’t work for me.)
Then last year, we discovered extremely high levels of mold in our home and my boyfriend and I were both diagnosed with CIRS/biotoxin illness. In addition to the above, we left the home and added pure cholestyramine (binder), IV glutathoine, plasmalogens, and phosphatidylcholine to the regimen.
It’s a lot of info, so my apologies! It took a lot of trial and error, so I told myself I would put my lessons out into the world to, hopefully, help others.