This post discusses caregiving stress, and how I made sense of my caregiving journey.
Table of Contents
Who is Betsy Leighton?
I’m a writer, blogger, and healer dedicated to helping individuals reconnect with their innate peace and wholeness by healing nervous system dysregulation. My personal experience with chronic illness called Mast Cell Activation Syndrome (MCAS) shapes my work, and my content offers tools to empower those with chronic illness to improve their well-being and take charge of their health.
I created the Sacred Self-Healing Method and am a trained and certified Safe and Sound Protocol provider, an author, blogger, and A Course in Miracles Teacher. I hold a Master of Divinity in Spiritual Counseling and am a trained spiritual mentor, with certificates in sound healing, aromatherapy, nutrition, and Sacred Deathcare. I offer a self-study certificate program in the Sacred Self-Healing Method, provide spiritual counseling and coaching, courses, and supported subscriptions for the Safe and Sound Protocol.
What is MCAS?
Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. It can cause severe, disabling symptoms every day, including potentially fatal anaphylaxis. MCAS often occurs with other chronic conditions like Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). Managing MCAS is challenging because many healthcare providers are unaware of it, and diagnostic tests can be unreliable. Treatments include antihistamines and mast cell stabilizers, as well as avoiding triggers. Check out this post on managing MCAS.
Intention
Sacred Self-Healing relies on intention and frequency. Intention directs frequency to bring about healing. The universal formula for healing is:
Intention + Frequency = Healing.
In this expression, “frequency” refers to the specific healing modality being applied. Setting an intention is particularly beneficial when utilizing self-healing methods such as frequency and forgiveness. This post covers more information on the power of intention.
Beneficial Frequency
Beneficial frequency refers to natural vibrations that synchronize biological and Earth systems, to support overall harmony. For instance, visible red and blue light from the sun are beneficial frequencies because they regulate circadian rhythms. Likewise, Earth’s Schumann resonance is a naturally occurring frequency that aligns internal and external rhythms for health. This post discusses beneficial frequency in more depth.
Forgiveness
Forgiveness, like love, is seen as a high-frequency energetic state connected to compassion and gratitude. In contrast, emotions such as resentment and anger are thought to have lower frequencies, constricting rather than elevating well-being. Forgiveness helps elevate energy, promote emotional healing, and support physiological balance. Science hasn’t measured the frequency of forgiveness, but studies show that forgiveness can improve heart and brain patterns and help the body work more smoothly. Forgiveness brings balance, healing, and peace—both emotionally and physically. This post delves deeper into forgiveness.
Putting language around caregiving stress
I recently read a piece titled “Navigating the Transition into Caregiving” that helped me put into words the experience I have found myself in for the past 4 years. The sense of disorientation, the inability to connect with people the way I used to, and the endless paradoxes were all summed up so perfectly. Caregiving creates a scenario in which “It’s as if someone steals the script you have been working from your whole life.”
In 2016, I began caring for my family. One of my daughters became ill with autoimmune illness and mast cell activation syndrome; she was homebound, and her health deteriorated to the point where she was unable to get out of bed for two months. Soon after that, my husband needed open-heart surgery to correct a defective mitral valve, and he needed someone to take him to rehabilitative therapy appointments for several months. And at the same time, my other daughter became ill with several serious illnesses, including Autoimmune Encephalitis (AE). She gradually lost 25% of her body weight, and eventually, she needed to be hospitalized. After that, she had a feeding tube placed and needed all her meals prepared as liquids. She also had home-IV antibiotic infusions, which required daily care. She still needs dozens of medications prepared in syringes to be administered through her feeding tube each week, and now she has a port-a-cath and receives monthly immunoglobulin infusions, requiring around-the-clock care for several days per month. Throughout these four years, my energy has been devoted primarily to caregiving, and at times I have been pushed beyond my coping abilities.
Caregiving stress finds you
In their book on caregiving, Donna Thomson and Zachary White brought home to me the realization that nobody chooses caregiving; it finds you. “Being a caregiver is not something most people think or dream about, let alone prepare for, even though it’s a role many of us will inhabit, since there are approximately 43 million informal caregivers in the United States and 6.5 million caregivers in the United Kingdom. When a loved one becomes a caregiver, everything changes, including responsibilities, beliefs, hopes, expectations, and relationships. Caregiving is always different from what we imagine it to be, largely because so few of us think through our care roles in advance. The disorientation associated with these roles can be deep, intense, and isolating because it entails a series of paradoxes.”[i]
The paradoxes are many: wanting and needing connection with others while not having the time or energy to make it happen; wanting others to know what you are going through, yet unable to bridge the gap between openly sharing and sharing inappropriately. A few months ago, when I ran into someone at the grocery store who innocently asked, “How are you?” I broke down into choking sobs because there was so much to say, and the dam holding it all back could no longer hold it.
Caregiving stress is unseen
Thomson and White continued, “Unlike the taken-for-granted script that leads you to believe that willpower and love and desire can change almost any situation, your caregiving exists in the overlooked spaces of life where the language of doing and action are confronted by the ongoing realities of care, realities that require you to change the way you think and talk about your experiences.”
I have been confronted with the realities of caregiving and experienced the disorientation of trying to make sense of them. Again, Thomson and White say, “Although the friends and relations who surround you may be familiar, something is different. They are still recognizable, but how you interpret what they are saying (or not saying) may no longer make sense. If a caregiver could write a truthful letter to family and friends explaining this experience of disorientation, it might read like this:
‘I see when you’ve called, but I don’t have the energy to even listen to a voicemail message. It’s not that I don’t want to. It’s just that I feel like I can’t right now. I’m here, but I may not even answer the door if you come by. It’s not that I don’t want to. You want to help and for that, I am deeply grateful, but caring so deeply for someone I deeply love is changing me in ways I don’t know how to explain. I want to be called. I want you to text. I want you to want to come by, even though when you do I may not answer.’”
The ubiquity of caregiving
Luckily, most of us don’t all experience caregiving for several family members at once. But my generation is beginning to experience aging baby boomer parents, and the incidence of complex illness is increasing. It’s never too late to think about how you can care for yourself. Having a supportive online community and a physical support group to attend (when caregiving doesn’t preclude it) has been lifesaving. Being able to openly share the challenges and the small joys with others who understand has made my caregiving journey bearable.
Finding support
Thomson and White say, “Reaching out and connecting with people who share common caregiving challenges is vital to the process of shaping personal growth and voicing experiences that allow you to explore meanings that may make no sense to your existing networks, but which are necessary to your evolving caregiver identity – meanings that move beyond good or bad, sadness or happiness, cure or recovery.”
I know that on a soul level, I chose caregiving, and the situation I find myself in is something I agreed to on a karmic level. The rewards of caregiving are rich, and I wouldn’t trade this “job” for anything in terms of personal growth. Even though caring for a loved one is a growing trend, it remains outside our societal norms. Besides other parents of children with AE, there are a few people who “get it” and can give a knowing look or compassionate comment. Really, it’s nobody’s fault; it’s the people who have experienced losses as severe as I have who can meet me here in the void. And I wouldn’t wish that upon anyone.
[i] Thomson, Donna and White, Zachary, “Navigating the transformation from loved one to caregiver: Caring requires a radical opening-up to others,” openDemocracy: free thinking for the world, 4 June 2019, https://www.opendemocracy.net/en/transformation/navigating-transformation-loved-one-caregiver/
The bucket theory
The bucket theory simplifies understanding symptom reactions with MCAS. Imagine your body as an empty bucket you don’t want to overflow. Reactions to various stimuli fill the histamine bucket at different rates, forming the total histamine level (how full your bucket is). More histamine means more symptoms. By managing triggers, reducing exposures, and taking medications and supplements, you can control your bucket’s level.
Know your typical symptom progression
Understanding your symptom progression during a flare is key to developing your rescue plan. This post discusses how to recognize symptom progression so you can be prepared to address them.
Get my free ebook, symptom log, and meal plan!
Want a tool to easily track your symptoms?
Check out these circadian health tools!
I’m an affiliate with Bon Charge, a company that makes tools for circadian health, and you can receive 15% off your order with my coupon code BETSYL.
Bon Charge offers tools such as yellow– and red-tone blue-blocking glasses, red light therapy devices, PEMF mats, infrared saunas, and EMF-blocking products.
Sign up for the SSP!
I’ve found the Safe and Sound Protocol (SSP) to be the most helpful bottom-up healing strategy if your nervous system has been overloaded with toxic exposures, including mold or non-native EMFs, chronic infections, concussions, stress, or trauma. The SSP is a passive listening therapy based on Polyvagal Theory that helps heal nervous system dysregulation. Many people with MCAS and other chronic conditions have nervous system dysregulation stemming from infections, toxic exposures, concussions, and trauma. The SSP is an easy-to-use app that lets you listen to specially filtered music for 30 minutes each day as part of a 5-hour cycle. Studies show the SSP has a profound effect on mental health and chronic conditions. Here’s a short podcast describing the Safe and Sound Protocol.
You can sign up for the SSP here!
Heal your mind!
While the SSP is a bottom-up, somatic therapy for healing the nervous system, the Sacred Self-Healing Method I offer is a top-down nervous system-healing modality that focuses on cognition, attention, perception, and emotion, using the mind’s higher functions. The SSP and the Sacred Self-Healing Method complement each other and together produce lasting results. Here’s a short podcast on my self-healing practice.
I provide one-on-one in-person and remote chronic illness and caregiver coaching, as well as Sacred Self-Healing Sessions based on the Sacred Self-Healing Method, a proven, novel co-creative healing modality detailed in my Books.
Order my books!
Here’s a short podcast highlighting my five books.
My latest book, Living In The Light: Healing with Forgiveness, Sound, and Light, is all about the tools that have been most helpful for me to heal: forgiveness, sound, through nervous system retraining using the Safe and Sound Protocol, and light, through entraining my circadian rhythm with the energy of the sun. Living In The Light is available here!
Rocks and Roots chronicles my solo backpacking journey on the Superior Hiking Trail and my efforts to overcome nervous system dysregulation, gut dysbiosis, and Mast Cell Activation Syndrome symptoms to complete the 328-mile hike successfully.
The Sacred Self-Healing Method ebook is available here and in most ebook retailers!
The Sacred Self-Healing Workbook is available for purchase here!
Betsy’s first book, Sacred Self-Healing: Finding Peace Through Forgiveness, is available here
Companion Recordings
The companion audio recordings of chants, guided meditations, and sound healing demonstrations that accompany the Sacred Self-Healing Method are available for free on my YouTube channel here
What do you think?
I’d love to have your reply below!
Disclaimer
The preceding material does not constitute medical advice. This information is for information purposes only and is not intended to be a substitute for professional medical advice, diagnosis, cure, or treatment.
