LC1 – A New Perspective on Wellness

Warning: Long Blog Post. . . and it’s personal this time!

My entire professional (and personal) life has revolved around practicing and teaching strategies for wellness. I approach wellness from all angles; scientific, practical, energetic, and emotional. I’m working on a compendium of wellness practices on the blog called the A,B,C’s for Living Well. Having had a fairly healthy life for most of my almost seven decades, imagine my surprise at finding myself unwell. I’ve been experiencing a constellation of mild to severe allergy symptoms since the summer of 2019. They became much worse after an illness in late 2019 that lasted into January of 2020. At that time, we didn’t know about SARS-CoV-2.

There is a stigma around health issues that may be related to covid infections or vaccines, and talking about that has become another taboo. When it comes to covid, I understand why people change the subject and want to move on; it changed everything for everyone and is changing many things for some of us. {Update: As of mid-summer, and after many tests, it became clear that I am a Covid Long Hauler.}

Since that illness, my health has worsened to include concerning symptoms like anaphylactic and presyncopal events. Easy tasks that used to take mere minutes can now take days. The concept of “living well” has, by necessity, taken on new dimensions that are more obtuse and subjective. Living well now takes more planning and forethought, more mindful attention. To find myself unwell with these mysterious symptoms has been jarring to say the least. I’m undergoing changes that are at once uncomfortable and annoying, enlightening, and humbling. In the fall of 2021 per doctor’s recommendation, I started immunotherapy drops (not shots. . . too dangerous for me); got an epi pen; adjusted my diet for low histamine; and increased self-care sessions. I was precariously stable, finding myself in a paradox of being both very well sometimes and very unwell other times.

Then in January 2023 I had an event that prompted me to seek a specialist in mast cell disorders. The event occurred in the middle of the night (of course). It was, in a word, serious, and I did not recover for weeks. I started to research histamine overload, and Mast Cell Activation Syndrome (MCAS). I have since become familiar with a long list of chronic conditions including Lyme Disease, Long Covid (LC), Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Postural Orthostatic Tachycardia Syndrome (POTS), dysautonomia, Ehlers Danlos Syndrome (EDS) and many others.

These are “invisible or hidden disabilities” that radically change lives. They are referred to as invisible because people appear to “look great” but quite often do not feel great. They’re called disabilities because they limit the ability to do things that most people take for granted. These are multi-system chronic conditions that affect millions of people worldwide. They are often misdiagnosed, undiagnosed, or chalked up to emotional, mental, behavioral, or spiritual problems that can be cured with anti-depressants, supplements, behavioral changes, or positive thinking. I am one of those millions affected by a constellation of mysterious symptoms that are difficult to diagnose and treat. I am not the first person to take this journey. I will not be the last. Resources are numerous in the lay community but doctors who diagnose and treat these symptoms are rare. I could say more about that and likely will at some point in the future.

Thankfully, in February, I connected with a doctor who is well versed in these conditions. Under their guidance, I’ve embarked on a crash course to learn about how to live well with chronic conditions that require a great deal of mindfulness and a much slower pace. Good thing I have a background in anatomy, physiology, biology, and I LIKE science – LOL. We are ruling out any serious biological damage via many medical tests. The process is slow and has been hampered by the worst winter in decades and a medical system that has been disrupted by years of covid. I am practicing patience regarding results (not my preferred wellness strategy but it’s mandatory).

Reading oncologist/hematologist, Dr. Lawrence Afrin’s excellent book “Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity” has been eye opening and invaluable. Remission of these symptoms is an attainable goal. Dr. Afrin says that most MCAS patients live normal life spans, and finding the right treatment protocol is key to a good quality of life. The treatment has helped to settle down a mast cell riot, so I do feel better. I’m not sharing my treatment protocols here because they are widely available in the medical literature and every MCAS case presents differently. A trial-and-error process is the way of it! The protocols I follow have been stabilizing, but I am still knocked back by reactions to known and unknown triggers. I am still surprised when I must sleep in the middle of the day or change clothes because what I’m wearing triggers hives. I do these things to “be well” that day.

There’s no denial on my part that aging is exasperating this situation. Given my lifestyle, I always anticipated many more years with the energy to be a healthy, active person. I’m also no stranger to pondering personal mortality. It has been an integral part of my life over the last two decades and I like to think I’ve grown comfortable with memento mori. But dying from anaphylaxis is not the “mori” I am rooting for. So, for now, I’m not traveling in airplanes or eating in restaurants. Will that change? I don’t know. For now, my time is about being rather than doing and I’m at peace with that.

The isolation factor was difficult at first (I’ve forever been a “doer”). Then the early lock downs for covid set up a pattern of isolation that I took to like a duck takes to water. Maybe it is a natural age-related phenomenon to prefer a quieter, more introspective life. Maybe I overdid it so much for decades that my capacity for doing stuff is used up. Maybe my biology just wants me to be still for now. I have Long Covid, and I’m grateful for every minute I have. I savor this time of more being than doing.

In virtual chronic illness support groups, I’ve learned about the tenacity we humans embody when faced with chronic illness. People I meet in these forums are positive-thinking, intelligent, and good-natured. We face mortality in a daily way, sometimes minute by minute. Some of us still work, some cannot work. We show up on the Zoom screen for one another from all walks of life, all ages, all demographics. We all seem to be adept at practicing nonjudgment, patience, courage, and radical acceptance. I’m grateful to be in their compassionate, wise company. The innovation! The inspiration! The trust! This community has offered an elegant solution to my newly found conundrum of how to live well with chronic illness. There is a “one day at a time” vibe that makes sense of the biological madness. Sometimes, “one moment at a time” or “one breath at a time” is what gets us through a day.

In group, I hear stories about how people with these conditions can be ignored, marginalized, humiliated, gaslit, and/or dismissed by friends, family members, medical professionals, and wellness coaches. I have observed and experienced this myself. Coming to terms with my situation has taken time. Folks without these conditions wonder why I’m still worried about covid, why I’m not traveling or going out for lunch now that the “pandemic is over.” It’s because it’s not over for me or for many people with medical conditions that makes covid, flu, RSV, or unknown anaphylaxis triggers an extreme risk.

I’ve been keeping my story close to the cuff because on some level I don’t want to amplify it; admit to fallibility or make it more real. Now that I’m disclosing this, I hold hope that people don’t feel they have to tiptoe around me or see me as somehow fragile or broken. I don’t see myself that way. I’m still me with the same values and capacity for loving life that I’ve always had. I may be “otherly abled” and limited for activities, but I’m still me. I’m spilling the beans now because May 12th is Awareness Day for Chronic Illnesses and I want to contribute to raising awareness and reducing the stigma associated with having invisible disabilities. Also, transparency and the inclination to support others is intrinsic to my nature. 

On another level, imagining that I have somehow consciously or unconsciously created this situation with my mind, actions, or words has not been useful. Cancer patients and people in hospice care have often shared their feelings with me about this concept. They don’t find it useful either. Struggling to identify what they did wrong, what needs fixing, or why they are dying can bring on the suffering in multiple ways.

Instead of asking “what is wrong with me?”, I find that posing the “what is useful?” question to be a more compassionate way to explore the nuances of illness or at the end of life. Often the answers provide reconciliatory insights, or are palliative in nature, offering comfort that opens doors for grace and healing to enter in.

There is a grieving process with any loss and losing the freedom to “move about the cabin” of life due to a chronic condition is no exception. I have been through all the stages of grief multiple times. I’m choosing to focus on radical acceptance and finding meaningful ways to live this new life. A tip I received in support group is to give myself the same grace I would naturally give to anyone suffering. That tip and asking the “useful” question works well for me. 

I find it fascinating and sometimes amusing to reflect on the ways that my life’s work (and my dogs) come to me. The experience of being unwell is providing an echo of Wayne’s time in hospice. I’ve often referred to that time as a crash course in hospice education; not the ideal way to learn about dying. But it put me on the path that has taught me to walk alongside the dying as a witness and gentle companion. I have come to understand that the ability to do this is uncommon in our culture. I feel it will be something I “do” for the rest of my days until it is time for someone to walk alongside me as I go into that good night.

Discovering how to navigate a chronic condition through having one has required another crash course in learning, adding twists and turns to my path, perhaps likened to a labyrinth. There is a new language (I now identify as a “spoonie”), different mores, and customs in the community. I have found Giles Meehan’s videos to be excellent in describing what people with chronic conditions experience, feel, need, want, and don’t want. They have helped me to understand this new version of me and are useful for anyone who knows anyone with a chronic illness.

Now that I’ve said all this, you may wonder about being in touch. I’m still me! Maybe version 2.0, but me, nevertheless. I still enjoy dialog with readers and clients. If you reach out, I will reach back. In coming to terms with this new me, I’m envisioning ways to give back, as I’m able, and in alignment with the Further Shore mission to provide resources for living well and dying with dignity.

I’m semi-retired so I have fewer hours to offer each week. For someone dedicated to a life of service, that is a weird adjustment. But I am giving myself grace and space in order to be well. I’m getting a handle on the boundaries needed to remain at my new “wellness normal” slowly discovering what my baseline is to work, play, and care for myself and my family. I’ve learned to carefully assess the number of “spoons” I have in a day, an hour, or a few minutes. Wellness is still the goal I play toward, but the way I do that looks very different than it did three years ago, and that is ok with me.

Thank you for reading and may you be well this day; whatever that means for you on this day!

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. 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.

Your comments are welcome and help 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 publicly posted.

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