LC 16 – Better, Not Normal

For the first three years living with Long Covid (and not knowing it), I spent a lot of time avoiding allergy triggers and another covid infection. I masked in public places (still do), and tested frequently for covid before and after social interactions. Most of my limited social interactions were (and still are) in outdoor settings or on Zoom. Life was certainly different, but it was acceptable. Since the trigger event in January of 2023 my life has been devoted to getting back to an acceptable baseline. My husband, Robert, likes to say that I am “better, but not normal” and I agree with that assessment. I write this post knowing that many of my companions on the LC journey are still struggling, many are disabled and bedridden. I count myself as fortunate to be doing as well as I am, given how unwell I was in 2023, and that LC is chronic. This post will outline various things that have supported my goal of an acceptable health baseline.

After the trigger event, and like most LC patients, I experienced myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptoms including pain, post-exertional malaise (PEM), extreme fatigue, exercise intolerance, unrefreshing sleep, and brain fog. In the winter and spring of 2023, these were extremely debilitating. Thankfully, Dr. Metz of Four Peaks Healthcare was able to help me understand that my symptoms checked not only the LC boxes, but also boxes for ME/CFS, MCAS, and dysautonomia. These diagnoses can appear after severe illness, surgery, or trauma. They have similar and overlapping characteristics.

Researching numerous peer-reviewed scientific articles reveals many similarities between LC and ME/CFS. The ME symptoms were the most difficult and disabling for me. I have great empathy and compassion for anyone living with ME. Funding is needed for clinical trials, education, treatments, and patient-led research for ME and LC. These are chronic illnesses that don’t usually just disappear on their own. Many have suffered with ME/CFS for years without supportive treatment. ME can happen to anyone following a viral infection. Maureen Hanson, director of the Center for Enervating Neuroimmune Disease believes that Bernie Sanders recent call for LC research funding missed the opportunity to include ME/CFS in the bill.

My initial treatment protocol included a low histamine diet, diamine oxidase (DAO), quercetin, and two types of antihistamines (H1 and H2 blockers), to stabilize misbehaving mast cells (for MCAS). It also included pacing, education, and peer support (for ME/CFS) and limbic retraining (for brain fog). Within a few weeks MCAS symptoms (severe allergic reaction, hives, rashes, allergic asthma, anaphylaxis) settled down. I can still experience any of these when encountering known or new triggers. I researched pacing and understood it in theory, but I wasn’t practicing much due to my activities being so limited. Often my only choice was to sleep. In April of 2023, I started to have a little more energy, but if I pushed in any way, I experienced a full on crash. I still practice pacing, rely on peer support, and follow MCAS protocols. I have been able to eat some (but not all) of my favorite foods without reaction.

The brain fog (an understatement) associated with LC, ME/CFS, and dysautonomia, was such that I could not start limbic retraining right away. I chose not to drive during the worst of the brain fog. Short term memory, reaction time, and executive function were in short supply. I cannot overstate how unnerving it was to have my brain function this way. I was fully aware of the deficits, but there was no controlling them via my normal “mindfulness” practice. At the worst, I was unable to retrieve words and developed a stutter. Anxiety was often present in these times. I increased my water intake, popped Stress Mints, and put a few drops of Rescue Remedy in my water bottle. I started practicing a variety of breathing techniques, the most helpful being the physiological sigh. I still do this breath several times a day.

I was finally able to begin limbic retraining with Brain HQ in July of 2023. At first, I would start an exercise, then stop after two minutes from frustration and/or a need to just cry. I had to set very small Brain HQ goals. Five-minute sessions were all I could manage at first. I worked my way up to 20- and 30-minute sessions and improved brain function in every category over the course of several months. When suffering with brain fog, this program, or others like it can support the healing process. It takes time. If I am fatigued, some of the symptoms will return. The answer, even now that I am not crashing, is to REST.

It took a year and half, but I’m relieved that as of today the ME symptoms have largely resolved. Brain fog is no longer a problem, pain and anxiety are reduced, and I wake up feeling refreshed. I have learned to pace and highly recommend this practice. Pacing means saying “no” often, even to things that I really want to do. It means daily assessing the energy envelope and being aware of available physical and mental energy. Another helper in my toolkit is low dose rapamycin. This repurposed drug, also known as sirolimus, has been used for over twenty years in the anti-aging and longevity field. In extremely low doses it increases autophagy, and is currently being studied for autoimmune diseases and is in clinical trials for ME/CFS.  Rapamycin and radical acceptance have been key in reducing my ME/CFS symptoms. Clearly, something about my initial covid infection changed the way my immune system works. I am not currently diagnosed with a specific autoimmune disorder, but given my symptoms, there are several contenders.

To recap, I am better, but not normal. Living with Long Covid is like a full-time job. When I do work, I am careful about saying “yes” and remain mindful about my energy envelope. I recognize my limits and must say “no” sometimes, even if part of me would love to dive in. The level of wellness I do experience requires medication (that I never thought I would need or take) and a whole lot of daily self-care. Additional to what I mentioned above there are supplements, vitamins, weight-bearing exercise, intermittent fasting, yoga, stretching, and other daily wellness practices to help me stay in balance. These remedies have helped me return to an acceptable baseline. That said, I’m currently able to do many things I used to enjoy, but running and intensive cardio are still not recommended or possible.

I hope this post has provided useful information for those struggling with LC. Please remember that what works for me may not be indicated or useful to others, so do discuss any medication, supplement, or practice with your healthcare professional.

Thank you for reading, next time the LC Series will focus on dysautonomia.

Please Note:  The Long Covid series is intended to be both a memoir and an educational resource for the “living well” aspect of our mission. It is hoped that the content will increase empathy, support, and understanding for those living with chronic conditions.

Blog post commenting helps to build community and spark important dialog. All comments and questions are reviewed prior to public posting. If you prefer to have a comment remain private, please indicate that clearly and provide an email address if you desire a reply. Comments about Aleia’s personal circumstances are gratefully received but will not be posted for public viewing. All site content is for informational purposes only and should not be taken as medical advice. Always consult with medical professionals to address new or persisting health concerns.

Leave a Reply