Chronic Illness

What the Dominant Narrative Misses

Birth Control, Body Literacy, Chronic Illness, COVID-19, Cycle Health, Disability Justice, Fertility Awareness, Infant Mental Health, Nurtured Parenting, Parental Brain, Parenthood, Parenting, Uncategorized / / 5 minutes of reading

What do disability, body literacy, fertility awareness, pregnancy, parenting, attachment, public health, and caregiving have in common?

I’ve been trying to articulate the answer to this question for myself for a while now. These fields can seem completely unrelated on the surface, and they’re made harder to see clearly by the layers of loud political ideology that get wrapped around each of them. I worry sometimes that people encounter my work in fertility awareness or responsive caregiving and think, “that’s some tradwife content I am not interested in.” I get it! These bodies of knowledge have often been co-opted, re-packaged, and handed back to us inside a political story that a lot of us don’t agree with and don’t recognize ourselves in. This often prevents people from accessing or practicing what could be providing a real benefit to them, or prevents them from seeing the thread underneath all of these that I think ties them together: care and interdependence.

Disability justice centers care and interdependence. Attachment science centers care and interdependence. When you strip away the dogmatic ideological packaging from body literacy, parenthood, responsive caregiving, and public health, each of these takes human needs seriously and begins with the reality of human bodies and relationships rather than what productivity and capitalism demand.

Not one of us came into this world without needing care. It’s literally how our species has evolved to survive and thrive and that need doesn’t disappear. We all begin as beings who rely completely on others for survival, and most of us will arrive back there at one or more points in our lives. At illness, disability, chronic illness, childhood, elderhood, grief, postpartum, parenthood, crisis, mental illness: all of these require care and interdependence.

Public health makes this explicit in a way the other fields sometimes leave implicit: our actions affect each other. A mask, a vaccine, staying home when you’re sick aren’t just individual choices. They exist inside a web of relationships. The people who have made this most visible are disabled people and immunocompromised people. We’ve had to articulate, loudly and repeatedly, that our safety depends on the choices of people who are not us.

Disability communities often reach a point, especially for people who become disabled after living as nondisabled, where they realize that worth does not equal productivity. You are worthy as you are. Rest is not something you earn. It’s a biological need (we are not machines!). In fact, disability justice calls out these exact principles: interdependence, recognizing the wholeness of each person, and anticapitalist politics.

Parental brain science shows that becoming a parent literally changes the brain. It’s pruned and reorganized in ways that increase attention to relationships, caregiving, emotional attunement, and social connection. The parental brain is optimized for caregiving, not maximum output. (Oh hello! Now it makes complete sense why my brain felt so completely different when I came back to work from parental leave.) Meanwhile, the culture around new parents says: bounce back. Get the baby sleeping independently. Get back to work. Get productive again. The parental brain is in some ways a biological rebellion against those capitalist demands.

Attachment science tells us that a securely attached child doesn’t develop through being efficiently managed. Secure attachment is built through thousands of moments of connection, co-regulation, responsiveness, repair, and presence. None of those are easily measured nor show up in any productivity metrics. And yet they’re among the most important things we as human beings can do or receive. Holding a crying baby, sitting with a dying elder, listening to a friend, recovering from or living with illness, resting, building trust, co-regulating are, by and large, in capitalist culture, treated as interruptions to life rather than as life itself.

None of us are units of productivity. Not babies, not children, not disabled people, not elders. Heck, not even nondisabled adults, no matter how hard everyone pretends otherwise! Everyone thinks they’re invincible until they’re not.

The fertility awareness method (FAM) gives people accurate self-knowledge to make decisions about their reproductive lives, including the decision to end a pregnancy. Knowing your body well enough to detect a pregnancy at five weeks, before a six-week abortion ban kicks in, can be life-saving knowledge. FAM connects directly to three of the four tenets of reproductive justice: the right to have children, the right not to have children, and the right to bodily autonomy and sexual freedom.

FAM also shows us that our bodies respond visibly to how we’re living. Whether we’re sleeping, eating, under stress, being nurtured or ground down by hustle culture, it all shows up in our cycles. FAM is a monthly report card on our own wellbeing. Using FAM we can learn to read what our cycles have to show us about our own well-being and see in real-time how living in a care-centered culture (where we are nourished, rested, connected, etc) vs a productivity-centered culture (where we are burnt out, etc) affect our reproductive health.

Disability and parenthood are both often viewed through a deficit lens: how will you manage, how will you keep up, how will you stay productive enough? (Fuck that.) What I think disability and parenthood reveal is that as human beings we are relational, that we move through seasons, that capacity fluctuates, that care is non-negotiable, that there is wisdom in slowing down.

When I sit with care-centered values it’s obvious to me that disability justice, parental brain science, responsive caregiving, reproductive justice, public health, and body literacy all draw from the same well. No wonder they seem connected to me! They arrive at similar conclusions centering care and interdependence from different starting points. These fields of study are not some tradwife bullshit (though aspects of these fields get co-opted and distorted with dogma from the right regularly). They’re all asking a version of the same question:

“What if we organized our lives around what human beings need, rather than around what makes human beings most productive?”

The fourth tenet of reproductive justice, “Safe and supportive environments for families,” is one part of the answer. A girl can dream.

The Big Blank

Chronic Illness, Chronic Pain, Disability Justice, Ehlers-Danlos Syndrome, Nurtured Parenting, Parental Brain, Parenthood, Parenting / / 4 minutes of reading

When we started seriously thinking about trying to conceive, I couldn’t picture it.

Logically, it made no sense to me. I had carefully and very deliberately built a life around my capacity and needs as a disabled, chronically ill, neurodivergent person. And having a baby meant blowing that all up in the most unpredictable way possible. Every time I tried to think it through, I kept arriving at the same conclusion: “lol, why?”

Erica with long brown hair stands at the edge of a rural road, arms crossed, looking toward the camera. A bare-branched tree is behind her and a lake view stretches in the distance. Early spring.
Photo from 2022 on a walk near where we were living after a particularly bad day, earlier in the year before we started trying to conceive.

The wanting wasn’t something I could access easily or directly because the immediate changes to my life seemed to contradict what I had up to that point learned I needed to take care of my body. What finally helped was thinking way ahead into the future and I asked myself, “At 70, would I regret not doing this?” And the answer was a clear yes.

People told me it was worth it. That they couldn’t explain it but it was true. My brain wanted to understand that for myself, wanted to try the identity on, take it for a spin, see how it felt, but it just couldn’t. My brain hadn’t been changed by parenthood yet the way theirs had. I couldn’t make the decision from inside of the experience. I had to trust that they were right, and look far enough ahead into the future to find out what I actually wanted.

What I also couldn’t picture was what parenting would look like in my actual body. Like on a high pain day, when my SI joints make walking impossible, when my capacity is already stretched before the baby has even arrived. Every image I had of pregnancy and parenthood was for someone else’s life—someone without hEDS, without MCAS, POTS, PMDD, without all of it.

I kept coming back to the same big blank.

I’ve been thinking about that big blank a lot lately, and about the fear underneath it. Not just the surface fears (the sleep deprivation, the logistics, the medical system), but the one that lives underneath all of them:

“What if becoming a parent requires me to become someone my body can’t sustain? What if the life I’ve so carefully built around my capacity, the routines, the pacing, the hard-won balance, just doesn’t have room for a baby?”

That fear makes complete sense, because something DOES change. The expectation that everything stays the same when you become a parent is a falsehood, for everyone, disabled or not. Before we started trying to conceive, James and I did a parenting visioning and values exercise together (because we like to nerd out like that) and landed on something we could return to and connect to. A north star.

“We are choosing to change, and remain open to the unfolding of the unknown.“

We knew we couldn’t possibly know everything. We knew we were walking through a portal from which there would be no return, and we didn’t want resentment to show up later. We wanted a reminder that we chose this, knowingly, even when it’s hard. A reminder of our values for change, adaptability, curiosity, and openness.

Our little north star/mantra/whatever-you-want-to call-it doesn’t cure the fear. It obviously still comes up. But, it has given us a sense of agency rooted in our values for this huge life change that makes the fear easier to sit with.

If that fear lives in you too, whether you’re already a parent or pregnant, thinking about trying, or just starting to let yourself wonder if it’s possible, tell me where you are in the comments.

If you’re navigating the path to parenthood as a disabled, chronically ill, or neurodivergent person and you’re tired of piecing things together from content that was never designed for you…I made something for you.

The Baby Registry Nobody Made For Us is a free guide built from real disabled parenting community knowledge. It’s a starting point for preparing for a baby in a way that actually accounts for your body and your needs.

Get the free guide here.

And if you’re looking for more than a guide, for an actual plan, built around your specific needs, with someone who has walked this path that’s what Body Compass™: Path to Parenthood is for.

Learn more and apply.

Adaptation is a Disability Practice

Chronic Illness, COVID-19, Disability Justice, Ehlers-Danlos Syndrome, Parenthood / / 5 minutes of reading

What disabled communities can teach us about surviving transformation—from parenting to pandemics to climate collapse

I’ve been thinking a lot about the Yale Global Health Review article written by 19-year-old Violet Affleck, “A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles,” and I keep connecting it to two books:

All three treat Disability Justice as a guide for responding to large-scale crises. They show how the adaptations developed within disabled communities are not only ways of surviving, but practical examples of how communities reorganize under pressure. The knowledge and skills within disabled communities matter for navigating fascism, climate change, pandemics, and other disruptions.

We saw this recently during the LA wildfires. It wasn’t the government stepping in to protect people from hazardous smoke; the mayor was actually attempting to ban masks. A group of chronically ill and disabled organizers, MaskBloc LA, quickly mobilized and distributed N95 masks to the community. In moments like this, the lived experience of disabled people often leads to faster, more practical responses.

Becoming a parent is another kind of transformation—sudden, disorienting, full of new limitations, and sometimes crisis-like. Sleep becomes fragmented. Your previously structured schedule dissolves into what I call “the new baby vortex.” Your body, time, and energy no longer feel fully your own. When I was considering becoming a parent as a chronically ill and disabled person, I felt unsure and uncertain. I had not seen positive examples of disabled parenting in media. Was it even possible? It had to be—but I found very few representations until a disabled peer counselor pointed me to a corner of the internet where disabled parents shared their experiences.

That’s where I first found Jessica Slice, the author of Unfit Parent. At the time she was looking for folks to interview about the decision to become pregnant or their experiences of pregnancy. We emailed and scheduled a call. When the day came, Jessica had to reschedule because someone in her family had COVID—limitations! unpredictability! Parenting! Ultimately, it was the people in that disabled parenting group—and an essay by Rebekah Taussig in the anthology We’ve Got This: Essays by Disabled Parents—that shifted my perspective. Taussig’s words stayed with me through our entire family-planning journey. They helped me see that my disability hadn’t left me unprepared. In many ways, it had trained me.

She writes:

“It turns out my disabled body has actually given me the precise training I need to be Otto’s mum. With time, parenting has started to feel more and more like hearing a cover of a song I’ve known by heart since I was a child.

My body and my baby are both unpredictable and take turns derailing our plans. They flourish when we lean into flexibility, imagination, and adaptability. They require patience and endurance, attention and care — they thrive when we lean into interdependence. They inspire innovation and new ways of being together; they nurture a tender, sturdy intimacy in our family; they are bewildering, magical, and demanding.“

In contrast, I’ve seen many nondisabled people struggle with the transition to parenthood—and with living through an ongoing pandemic. Often the difficulty isn’t only the disruption itself. It’s the reluctance to shift, to let go of the expectation that life should return to how things were.

But adaptation isn’t about return. It’s not about “getting back to normal” or pretending it’s still 2019. A return is not an adaptation. A return is a movement backward: a reinstatement of a prior state, often idealized as simpler or more desirable. It assumes that the past was working (working for whom I would question). But, an adaptation is a modification or evolution in response to new conditions. It’s about resilience, creativity, and change (ask me another time to talk about my complicated relationship with the concept of resilience). Adaptation acknowledges that the landscape around us has shifted and invites us to shift with it. It doesn’t ask us to go back—though grieving the before-times is valid and often necessary. It dares us to move forward differently, more fit for the world we’re in now.

This is where disabled communities offer invaluable guidance. We have been practicing adaptation for a long time. We are masters of modification, flexibility, and resourcefulness. We learn how to live with unpredictability, how to build access where none existed, and how to thrive in interdependence and community care. During my coach training, one of my mentors often said that every client is a whole, creative, resourceful person with a lifetime of accumulated wisdom. I’ve seen that wisdom most clearly among my disabled and chronically ill peers.

Each of these three works—Violet Affleck’s article, Jessica Slice’s memoir, and Leah Lakshmi Piepzna-Samarasinha’s essays—also points to the ableist assumptions, norms, and systems that marginalize disabled people. Public health responses to COVID-19 sidelined disabled people’s needs. Popular visions of the future (especially in science fiction and tech culture) often leave disabled people out entirely. And positive portrayals of parenting in media rarely include disabled parents. When we erase disability from our imagined futures and ignore it in our present, we erase wisdom, joy, and expertise in living under crisis and change.

From parenting to pandemics, disabled communities have been modeling adaptation for decades, building better ways of being, not just surviving. Much of that work centers on community care, flexibility, and collective thriving—approaches that are becoming increasingly necessary. These practices and better ways of being matter even more now. Within disabled communities, conversations about surviving climate collapse are often blunt and practical. We already know what it means to navigate inaccessible systems, respond to crisis through mutual aid, and reimagine care beyond institutions. Disabled people know that in most crises we are the first to be abandoned. Or, as Anthony Fauci put it when discussing COVID-19 in 2023, “the vulnerable will fall by the wayside.”

That kind of careless, eugenicist thinking harms everyone. Disabled communities offer more than survival strategies. They show how a society might organize itself around interdependence, access, and adaptation in the face of ongoing environmental and social disruption.

Body Literacy Academy: Founding Statement

Birth Control, Body Literacy, Body Literacy Academy, Chronic Illness, Cycle Health, Fertility Awareness, Painful Periods, PMS/PMDD / / 2 minutes of reading

Founded by Erica Evans in 2019, the Body Literacy Academy empowers individuals to better understand and respond to their body’s unique messages across all stages of life—from menarche through menopause. 

Body literacy, the academy’s guiding principle, is the ability to recognize, interpret, and trust the signs and signals our bodies communicate. In 2005, Laura Wershler introduced body literacy as “learning to observe, chart and interpret our menstrual cycle events.” 

From Femme Fertile, 2005, Page 6

While body literacy is often linked to fertility awareness, it also goes beyond. Megan Lalonde broadened the scope defining it as “learning to read and understand the language of our body.” For some individuals this is about tuning into their neurotype and understanding how their individual brain wiring and sensory needs shape their experience. For others, it means listening to their nervous system to identify what they need to feel balanced or about embracing intuitive eating to nourish themselves effectively. For many, it’s about understanding how the body’s messages can guide health decisions and reproductive goals.

The Body Literacy Academy also embraces disability justice, honoring that each body communicates in unique ways. Programs are structured to be accessible and inclusive of diverse learning needs, respecting that disabled people and those with chronic conditions may experience and interpret body signals differently. For some, body literacy might involve adapting to sensory processing needs or understanding how neurodivergent experiences shape the way we relate to our bodies. This inclusivity echoes the broader vision for body literacy, which seeks to make these practices available and meaningful to everyone.

Along these values, in 2000 even before Laura Wershler, the Tathapi organization in India developed the concept of body literacy as a “medium to scientifically explain the processes of the body, its parts and functions” to people across ages and backgrounds. The Body Literacy Academy believes that body literacy is for every body, every gender, every age. All genders and sexual orientations are welcome to learn.

The academy offers a diverse selection of inclusive programs for all ages and stages led by Erica and carefully chosen co-instructors. Participants can engage in programming with Erica or co-instructors, and in collaborative, co-taught experiences with both, allowing for a rich, in-depth exploration of body literacy practices from multiple perspectives.

How EDS and Chronic Pain Promote Fatigue and What to Do About It (Part 1)

Body Literacy, Chronic Illness, Chronic Pain, Ehlers-Danlos Syndrome, Stress / / 10 minutes of reading

Do you feel rested in the morning? Or do you want to roll over and go back to sleep? Maybe you’re thinking, “I’m a great sleeper! I can sleep for 15 hours straight!”

Neither of these are signs of someone who gets restorative sleep and both can be signs of fatigue.

Fatigue is a common symptom of many chronic conditions. Today we focus on fatigue in people living with Ehlers-Danlos Syndrome (EDS), and what anyone whether they have EDS or not can do about it.

The Ehlers-Danlos Society describes the Ehlers-Danlos Syndromes as:

A group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.

Ehlers-Danlos Syndrome (EDS) is considered a rare disorder. There are 13 different types of Ehlers-Danlos syndromes. The latest statistics list the total prevalence of all the types as 1 in 2,500 to 1 in 5,000 people. Clinical experience suggests EDS may be more common than that.

In fact, I have hypermobile Ehlers-Danlos Syndrome!  Many of us living with EDS will call ourselves “zebras.”

Why the Zebra?

Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.

But many of us spend years pursuing a diagnosis for disorders that aren’t well known. Or aren’t expected in someone who looks normal, or is too young to have so many problems, or too old. Or even, what we might have is considered too rare for anybody to be diagnosed with it.

So the zebra became our symbol to mean, “Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers-Danlos syndromes are unexpected because they’re rare. Hypermobile spectrum disorders are common, but are unexpected because they remain misdiagnosed or under-diagnosed. 

-The Ehlers-Danlos Society

Okay, let’s get back to sleep! 

There are many reasons why a Zebra might have chronic fatigue:

  • Autonomic Nervous System Dysfunction
  • Metabolic factors
  • Inadequate rest (not taking breaks/feeling guilty about it #permissiontorest)
  • Cognitive tasks (which are just as tiring as physical tasks!)
  • Emotional stresses (draining)
  • Everyday life (which sucks up your energy)

It’s important to keep in mind there is no one thing that will work for everyone. Every person’s body is different. You are the expert in what it’s like to live in your body, and no one else.

EDSers tend to have non-restorative sleep. The most common pattern of sleep disorders in EDS is not enough time in deep sleep (my Oura ring can vouch for this!). The continuity of deep sleep is broken by arousals which cause us to wake up feeling tired. 

Did you know you have to be awake for 2 minutes to remember being awake? An awakening is defined as disruption to continuity of sleep that lasts more than 30 seconds. And less than 30 seconds is called an arousal.

Dr. Alan Pocinki in his presentation on chronic fatigue at the Ehlers-Danlos Society’s 2019 Nashville Global Learning Conference shared that in one sleep study of a woman with EDS, she had no deep sleep or REM, and was not cycling through the stages of sleep. The sleep study showed her continuity of sleep had been broken 150 times in seven hours!

I’m exhausted just typing that.

So what can we do about disordered sleeping?

From the perspective of someone living with a chronic condition with a pain characteristic, there are two areas that can be focused on:

  1. Practice good sleep hygiene 
  2. Manage pain 

There are many lifestyle interventions that promote sleep hygiene (behaviors that contribute to good quality sleep as well as alertness during the day). Let’s explore five of them today.

1. Control your exposure to light

Light is one of the primary drivers of our circadian rhythm and the sleep/wake cycle.

  • Avoid blue light in the evenings and hours leading up to bedtime.
  • Avoid or minimize use of electronic screens two to three hours before bedtime.
  • If you must use screens install a program like f.lux on your computer, or wear orange-tinted, blue-light blocking glasses at night.
  • Use blackout shades or an eye mask to keep your bedroom as dark as possible. 
  • Cover or remove anything that emits light in your bedroom like digital alarm clocks. We put black electrical tape on the green digital lights of our window AC unit during the summer months. 

Blue light is not all bad. What matters is getting it at the right time of day. In addition to your sleep hygiene in the evening, you’ll want to make sure you get sunlight during the day. 

  • Take a short walk when you wake up
  • Eat breakfast outside
  • Use a light machine (I do this during the long, dark days of winter!)

2. It’s time to move it, move it!

But you don’t need to even do it that much. As little as 10 minutes of aerobic exercise can dramatically improve your sleep quality. Physical activity also improves sleep duration.

However, the timing of exercise can make or break your sleep. According to the National Sleep Foundation:

Early morning and afternoon exercise may also help reset the sleep wake cycle by raising body temperature slightly, then allowing it to drop and trigger sleepiness a few hours later. It can be especially helpful if you are able to exercise outdoors and let your body absorb natural sunlight during the daylight hours.” 

This explains the sleep-like-a-baby feeling I get in the evenings after an afternoon bike ride!

It’s important to note that strenuous exercising too close to bedtime can actually be detrimental to your sleep quality. This does differ from person to person, so as always, you know your body best – find out what works best for you.

While we’re all familiar with the common refrain to “get more exercise,” exercise is not the only kind of movement that counts. Non-Exercise Activity Thermogenesis is all the movement we do throughout the day that isn’t sleeping, eating, or sports-like. Walking to the store, taking the stairs, doing house or yard work all increase NEAT.

Start observing how sedentary you are during the day and where you might be able to get more NEAT in.

Are you able to take that phone call while on a walk? How about standing at your desk for a bit?

3. Nutrition and Sleep

In general it’s best to not go to bed too full or hungry. And since no two people (or Zebras) are alike, it’s important to pay attention to your body.

Are you someone who needs a snack before bed because you tend to have low blood sugar? Waking up in the middle of the night can sometimes be an indication of this!

Or are you the type of person who does better with a smaller dinner? Is your body getting enough nutrition to help you sleep at night? Low-carb and low-fat diets could also impact your sleep.

Did you know as many as 20% of Americans use alcohol to help them fall asleep?

While it may help you fall asleep more quickly, it leads to poor quality sleep by disrupting your circadian rhythm and blocking REM sleep, your body’s most restorative sleep.

By now we all know about the effects of caffeine on sleep. If you have a caffeine habit that needs breaking it’s best to wean off rather than quit abruptly. 

4. Manage Stress

In today’s day and age, feeling stressed seems like the default.

With a global pandemic, civil unrest, rampant racism, and record rates of unemployment, it’s hard for it not to be!

When every night brings another day’s news cycle depicting the pain, trauma, and devastation occurring around the world to a close, calming our nervous systems can feel like a Herculean feat.

Add to this our propensity to use our smartphones to get those additional hits of the news right before bed and it’s a double whammy of blue-light exposure and stress activation!

Explore different types of stress management techniques and tools like deep breathing, meditation, yoga, prayer, knitting, and more to help you manage stress. 

5. Create and Maintain a Relaxing Sleep Space

Don’t sleep with your kids or pets.

While sleeping with kids or pets might work for some, if you are waking up tired in the morning, you might consider not sleeping with them to see if that helps.

If possible only use your bedroom for sleep and sex.

The intention is for your bedroom to be a relaxing place. If you’re also folding laundry, working on your computer, and eating in your bedroom it can create unnecessary stressors.

Is there a lot of noise outside your bedroom?

Use earplugs, or a noise machine to block it out.

Avoid using electronics in the bedroom.

Study after study shows digital tech activates our sympathetic nervous system making it harder for our bodies to shift into sleep.

I know, “But my phone is my alarm clock!” In some cases, analog is a better choice than digital – this is one of those cases.

The lights from a digital alarm clock (or your phone) are actually bright enough to disrupt your circadian rhythm!

Control the temperature of the room.

Sleeping in a slightly cooler room tends to work best for most.

Many EDSers also deal with dysautonomia, the dysfunctioning of our autonomic nervous systems (ANS). One of the responsibilities of the ANS is to regulate body temperature.

Many EDSers report non-hormonal hot flashes during sleep. Dr. Pocinki in 2019 at the EDS Global Learning Conference shared that these hot flashes are often autonomic in nature. Hormonal hot flashes tend to be in the upper body, chest, and face. Whereas, waking up hot all over usually signifies they are due autonomic dysfunction.

A person with EDS’s body temperatures often bottoms out in the middle of the night, and so it overcorrects. We warm up too much and wake up in a hot sweat with our hearts racing.

The heart racing could be a nightmare or dream, or it could be adrenaline. The ANS is also what tells the body to release adrenaline. 

The Autonomic Nervous System is what keeps us on an even keel. When it malfunctions, things start to fluctuate. Our sympathetic ( fight or flight) VS parasympathetic (rest and digest) responses go out of whack.

When the sympathetic nervous system is activated it causes us to release adrenaline more often. We might overreact to minor stresses in our lives and waste energy that we could be conserving leading to more fatigue. 

How comfortable is your bed?

This might be obvious, but if your bed is uncomfortable, your sleep is not going to be great.

As a hypermobile person, a mattress’s quality and comfort are even more vital. If you haven’t caught on to the theme yet, you know your body best. 

Some considerations for the Zebra:

  • A mattress that is too soft could misalign your spine, cause sore muscles, or subluxation/dislocations in your joints
  • Too firm and it could cause bruising and pain 

Some people find a softer bed more comfortable, others like a firm mattress, still some folks are in between. Get your Goldilocks on and find yourself a mattress that feels just right.

To sum up

Getting the right kind of light at the right time, moving more, optimizing our nutrition for sleep, managing our stress, and maintaining a relaxing sleep environment all contribute to better quality and duration of sleep. 

When living with a chronic illness like the Ehlers-Danlos Syndromes it’s easy to run out of spoons before midday. The little things add up! And so do the little things you can do to improve your sleep and manage or reduce fatigue. Do you have to cover all five of the areas on this list? No. 

I know how overwhelming it is to live with chronic illness.

What feels like low-hanging fruit? One baby step that feels doable to you now? 

Start there. 

Have you made improvements to your fatigue by working on your sleep hygiene? What worked for you? 

Tell me about it in the comments below!

Stay tuned for Part 2, where I go over how chronic pain promotes fatigue and what you can do about it. 

 

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