Spoonie-tested mental and physical health maintenance tips
Chronic care management is essential because it provides a structured and comprehensive approach to managing chronic illnesses, like fibromyalgia, ME/CFS (chronic fatigue syndrome), and Long Covid. Here are some key reasons why it’s so important:
Consistent Care: Chronic illness requires ongoing, consistent care. With a care management plan, you can ensure that you receive the right treatments, therapies, and medications regularly. This consistency can help manage symptoms and prevent them from worsening.
Improved Quality of Life: Chronic care management is all about enhancing your quality of life. It’s not just about treating the symptoms; it’s about addressing the physical, emotional, and social aspects of living with a chronic illness. With a care plan in place, you can work towards a better quality of life, focusing on what matters most to you.
Preventative Measures: Managing chronic conditions isn’t just about reacting to symptoms when they flare up. It’s also about taking preventive measures to avoid exacerbations. A care management plan can help identify potential triggers and provide guidance on how to minimize their impact.
Medication and Treatment Optimization: Chronic care management helps ensure that your medications and treatments are optimized for your specific needs. This can reduce side effects and enhance their effectiveness, leading to better symptom control.
Emotional Support: Living with a chronic illness can be emotionally challenging. A good care management program includes emotional support and resources to help you cope with the psychological aspects of your condition. This support is invaluable in maintaining mental well-being.
Coordination of Care: With chronic care management, your healthcare providers work as a team to coordinate your care. This means that you’re not just seeing a primary care physician but also specialists, therapists, and other healthcare professionals who can collaborate to give you the best care possible.
Healthcare Cost Savings: While it might seem counterintuitive, effective chronic care management can actually save you money in the long run. By preventing hospitalizations and complications, you’re reducing the overall cost of healthcare related to your condition.
Empowerment and Education: With a structured care plan, you become more informed and empowered to manage your condition. You learn how to make lifestyle choices that can positively impact your health and well-being.
For someone like me dealing with fibromyalgia and chronic fatigue syndrome, chronic care management is a lifeline. It helps me navigate the challenges of this condition, ensures that I receive the right treatments, and empowers me to lead a fulfilling life despite the challenges. If you have a chronic illness or care for someone who does, don’t underestimate the importance of chronic care management; it can make a world of difference in your health and overall well-being.
This deceptively simple chart labeled “Self-Management Tools” was created by the Mayo Clinic and used by their Fibromyalgia team to teach new Spoonies how to better manage their chronic illnesses. As the Fibro Nurses told my group of new fibromites (mighty fibromyalgia patients) in 2018, there is currently no cure for fibromyalgia (and other chronic illnesses), so we need to manage the disease as best we can to live a happier, healthier life.
Let’s take a look at each section individually with some examples. I’ll start at the top of the chart and go around clockwise.
According to the authors of the recently (2023) published Sleep Hygiene Strategies for Individuals With Chronic Pain: A Scoping Review
The relationship between poor sleep and chronic pain is well documented and bidirectional. Individuals with chronic pain generally report poorer sleep quality and quantity compared with those without chronic pain. This is problematic, as sleep is a biological need, with 7–9 hours of sleep per night recommended for adults for optimal health and well-being. Poor sleep is associated with poorer physical and psychological health outcomes, in addition to impaired cognition, memory, attention and alertness. Conversely, adequate night-time sleep appears to be predictive of less pain and may assist individuals to cope with chronic pain. Thus, there are likely to be far-reaching benefits of improving sleep in individuals experiencing chronic pain.
Sleep hygiene (healthy sleeping habits) is probably the number one self management tool for keeping my pain levels lower. After seeing so many specialists to help with insomnia and delayed sleep phase syndrome (I’m an extreme night owl aka late chronotype), I’ve heard and tried all the tips:
It can be difficult, especially with chronic pain and illness, to follow ALL of these tips all the time. With chronic fatigue, napping is VERY hard to reduce some days. I’ve learned to listen to my body more on bad flare days (when symptoms keep me from daily activities), which sometimes requires being flexible with one or more of the sleep hygiene tips, but overall I try to follow them. Most of all, I focus on protecting my sleep times and allow for recovery days, where I may need to sleep longer due to an acute illness.
A spoonie can also consult with a doctor on whether sleep medications are appropriate for them.
I prefer high CBD, low THC for sleep and currently take 25 mg of CBD with 5-10 mg THC.
If you’re considering trying cannabis for pain relief and sleep:
I like to think of Positive Thinking as dwelling less on Negative thoughts and ideas. Instead of allowing the negative thoughts to overwhelm my core self, I:
There is such a thing as Toxic Positivity, where you may be positive to the point of denial or not acknowledging current limitations, so you end up in constant flares. Toxic Positivity can be detrimental to a Spoonie’s mental health, as it may not allow normal processing and self-acceptance, breeding shame and embarrassment instead.
Seek middle ground between Negativity and Toxic Positivity for best results, skewing toward Gratitude for what IS good in your life
Celebrate even the tiniest wins
Got out of bed today despite depression? Thank your body and mind!
This is where happy distractions come in, including wearing vintage hats and coordinating an outfit. By being creative and focusing on our other senses (other than the pain, fatigue, and strange sensations), we give less power to our symptoms and live more in the moment.
Of course, during a bad flare it can be incredibly difficult to focus on something other than symptoms…and some days it’s okay to focus only on self-care and just getting through the day. I have a few go-to movies that I watch when symptoms become unbearable–familiar films I’ve watched a hundred times, are slow-paced, and generally have a happy ending.
For those who are fully disabled by their conditions, I would start with movies, books, listening to soothing music, coloring in a coloring book, looking through reminders of self-worth, viewing vibrant photos of the natural world, finding glimmers, etc.
Relaxation is incredibly important for those dealing with chronic illness for several reasons:
Stress Reduction: Chronic illness often brings significant stress and anxiety. Relaxation techniques, such as deep breathing, meditation, or progressive muscle relaxation, can help lower stress levels. This, in turn, can positively impact the immune system and overall well-being.
Pain Management: Many chronic illnesses are associated with pain. Relaxation exercises can help in managing pain by reducing muscle tension and promoting the release of natural painkillers (endorphins) within the body.
Better Sleep: Chronic illness can disrupt sleep patterns. Relaxation can improve sleep quality, helping individuals feel more rested and better able to cope with their condition.
Enhanced Emotional Well-being: Chronic illness can lead to feelings of depression and helplessness. Relaxation techniques can improve mood, increase emotional resilience, and provide a sense of control and empowerment.
Improved Coping Skills: Relaxation practices provide Spoonies with practical tools for managing the emotional and physical challenges that often come with chronic illness. They help us build resilience and better cope with the ups and downs of their condition.
Reduced Inflammation: Chronic inflammation is common in many chronic illnesses. Relaxation methods have been shown to reduce inflammation markers in the body, which can be beneficial for those with conditions related to inflammation.
Enhanced Quality of Life: By promoting relaxation and reducing stress, people with chronic illness can experience an improved quality of life. It allows us to focus on our daily activities and relationships, rather than being overwhelmed by our health condition 24/7/365.
Supporting Immune Function: Chronic stress can weaken the immune system, making it harder for the body to fight off infections and illnesses. Relaxation practices help boost the immune system’s ability to function effectively.
Reduced Medication Reliance: Some people with chronic illnesses may rely heavily on medications to manage their symptoms, but some of these medications can have bad side effects. Relaxation techniques can be a complementary approach that reduces the need for as many medications or helps manage side effects.
Enhanced Sense of Control: Chronic illness can make Spoonies feel as though our lives are out of control. Relaxation provides a sense of control over one’s own well-being and can improve our overall outlook on life.
Adding relaxation techniques into your daily routine is a valuable self-care strategy for individuals with chronic illness. Remember, it’s essential to work with your doctors and therapists to identify which relaxation methods are most suitable for your specific conditions and individual needs.
While relaxation techniques like deep breathing, meditation, or mindfulness are designed to reduce immediate stress, stress management includes a wide range of techniques beyond relaxation, such as problem-solving, time management, and communication skills. It aims to address the root causes of stress and build resilience.
Impact on Health: Chronic stress can exacerbate the symptoms and progression of chronic illnesses. It may lead to increased inflammation, weaker immune responses, and elevated blood pressure, all of which can worsen the condition.
Symptom Management: Stress can intensify the symptoms of chronic illnesses, such as pain, fatigue, and emotional distress. Effective stress management can help mitigate these symptoms, leading to a better quality of life.
Emotional Well-being: Chronic illness often brings emotional challenges like anxiety and depression. Stress management techniques, such as cognitive-behavioral therapy or counseling, can address these emotional aspects and help Spoonies cope more effectively.
Prevention of Flare-Ups: Stress is a common trigger for flare-ups or exacerbations in many chronic illnesses. By managing stress, we can reduce (but usually not eliminate) the likelihood of these unpredictable and often painful episodes.
Enhanced Coping Skills: Effective stress management equips individuals with valuable coping skills, allowing us to better handle the day-to-day challenges of living with a chronic illness.
Moderation in the self-management of chronic illness is the key to finding a healthy balance in life. This includes:
There’s a reason this slice is called Movement and not Exercise: Exercise can often be a demotivational word to a Spoonie without sufficient spoons to make it to a gym regularly, like a healthy person can. We often feel “less than” as the people around us brag about the number of squats they’ve done, while we are struggling to make it from the bed to the couch. Guilt and shame can take over sometimes, making it even harder to motivate ourselves to gradually add in more movement as our bodies allow.
Start small, slow, and gentle, especially with chronic fatigue. Considering trying:
I’ve found from personal experience that it can take a Spoonie years to gradually restrengthen our bodies to allow for a “normal” lifestyle lived sustainably…and often it’s five steps back, one step forward. Be patient with yourself and congratulate your body on any movement instead of dwelling on what you used to be able to do, for the sake of your mental health.
Instead of dwelling on what you used to be able to do, Be patient with yourself and congratulate your body on any movement
Aim for a healthier, happier, more sustainable life, not the life you expected before getting sick. Our bodies and minds change — Spoonie or not.
Spirituality provides emotional and psychological support. Here’s more on how it can help:
Emotional Coping: Spirituality can offer a source of comfort and emotional coping, helping Spoonies find meaning and purpose in our health journey.
Stress Reduction: Spiritual practices such as meditation, prayer, and mindfulness can reduce stress and promote relaxation, which is beneficial for overall well-being.
Community and Support: Spiritual communities often provide a sense of belonging and a support network for individuals facing chronic illness.
Resilience: Spirituality can enhance resilience and the ability to adapt to challenging circumstances, including health-related issues.
Positive Outlook: It can foster a positive outlook on life, which can have a profound impact on one’s ability to manage chronic illness effectively.
Guidance for Decision-Making: Some individuals turn to their spiritual beliefs for guidance in making health-related decisions. As a scientist, I prefer to look at data and evidence, but to be fair, medical science is still learning about invisible chronic illnesses. I understand the desire to find a cure or anything that reduces the symptoms, even if there’s only anecdotal “evidence” (aka testimonials/individual experiences)–many of us are looking for hope where we can find it.
Inner Peace: Spiritual practices can promote inner peace and acceptance, even in the face of health challenges.
Having a “higher power” in your life can reduce anxiety and stress, especially when you’re a control freak like me. I often have to remind myself that most things are out of my control and to focus on what I CAN control, leaving the rest to the universe, to God, to the Greek pantheon, to the simulation, whatever you believe.
While I’ve been religious in the past, these days I’m more spiritual, with a walk alone in the woods far more healing to me than praying in a church. Find what works for you to take a little of the load off your own shoulders and practice whatever rituals you prefer–there are no right or wrong answers. Well, maybe avoid human or animal sacrifices…
Most aspects of life are out of your control, so focus on what you CAN control, like choosing gratitude over misery
Find what works for YOU spiritually
When spending most of your time in pain or in a mental fog, it’s crucial to find a way to have fun. My husband and I love to cruise (he finds awesome deals, which have included repositioning or one-way cruises), so for vacation we choose a couple of excursions like snorkeling (especially in the Caribbean) and cultural tours. We spend our time focused on fish, fun, and food with plenty of time for me to rest and recover between ports (when possible). Sometimes I overdo things and end up in a flare, but those memories we’ve written together remind me that I’m still alive and can still enjoy life.
I’ve met so many Spoonies who have a quirky sense of humor that many non-Spoonies can’t fully understand. My hypothesis is that after coping with chronic pain and illness, we develop some version of gallows or sarcastic humor…and the sense of humor is another coping mechanism. So why not embrace our Spoonie humor and experience connection with others by sharing relatable memes, silly cat and dog videos, and laughing together about our daily struggles? Laughter really can be the best medicine / therapy sometimes!
As the COVID19 pandemic showed us, humans need other humans. While it can still be difficult for a Spoonie to get out and socialize (especially with multiple comorbid conditions that contribute to immunity issues and a society that values the healthiest, most able folks with little thought of protection for the immunocompromised), technology now allows unprecedented connection with Spoonies across the world. We can now call others from the warmth of our beds on our worst flare days, turning off the camera if we’d rather not scare friends with dark circles under eyes, but checking in with them and hearing their news can give a sense of normalcy on some level.
If you can meet with a friend or two (especially one without chronic illness) for a quick tea or coffee, I’ve found that it can boost my mood and help with overall mindset. Some chronic illness forums devolve into mainly negativity as Spoonies become frustrated, so I focus on friendships with both Spoonies and fully healthy people to keep a better balance. And there are plenty of Spoonies out there who work hard on having a realistic, mostly positive attitude–I love meeting and discovering solutions with them!
While socialization offers emotional and psychological support, effective communication with healthcare providers and support networks can also improve a Spoonie’s quality of life.
Unless we are able to communicate our symptoms, health triggers, and what we need to sustainably live, we may feel stuck and alone fighting the invisible foe of illness. Not every doctor or loved one will listen to these needs (or be able to help in the way we want), but if we never try to communicate out of fear or embarrassment, life won’t improve for us. If your doctor isn’t listening to you, find another one. If family members ignore your needs, ask close friends for help.
At some point in their lives, nearly everyone will experience pain and fatigue–with a Spoonie’s experience and learned wisdom, we can help others cope better and support each other’s aspirations and goals, no matter how big or small. And the more we improve our communication skills, the better we can share these nuggets of wisdom in a way that others understand!
Start anywhere you like, but I like to begin with sleep hygiene. If I can attain quality sleep each night, my pain levels tend to be lower and fibro fog less dense. Once the volume is turned down, I find it easier to truly relax, socialize, and communicate my needs.
I like to focus initially on just one section for a week to a month, gradually adding a second section in the next week / month. There’s no need to rush to cover all aspects of life–the point is to slowly return to living our best lives with the emotional, social, movement, and intellectual support a Spoonie needs. Look for ways to add activity in your day as possible, but ensure that the pace is sustainable. This is a long-distance marathon, not a sprint!
Love vintage and reproduction hats? Check out my personal hat collection. Don't look good in hats? Try my styling guides for vintage hats for women before you donate that gorgeous pillbox, bucket, fedora or beret.
Some days a Spoonie just needs a little self-care and some bright glimmers of hope - instead of doom-scrolling on social media, check out positive reminders of self-worth, wander through vivid nature photos, and chuckle at silly cat videos
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