The Challenge of Not Competing with Anyone, Even Our Former (Well) Selves (Spoonie Yoga Day 5)

A year or so after getting sick, I tried to do a program that involved going to yoga classes everyday for 40 days. Other people in the group were (reasonably) struggling with time, work, and childcare. My struggle was different. Too much movement doesn’t just require a rest day for me, it can induce a flare that lasts for months. I quickly found out that the studio did not offer enough classes that were my “speed,” but that ceased to matter too much because my experimentation early on with what I could do caused a pain fall-out that required me to all but leave the larger program.

Let me just say, this sucks. Trying to take care of myself and commit to something for my spiritual and all-around growth and well-being causing a health crash was really discouraging and I had a really tricky time articulating why. At first I thought I was jealous, so many in my cohort could choose to push themselves to “stick to it.” I tried discuss in this with program leaders who encouraged me not to compare myself with others, stressed that I didn’t need to compete with anyone, and that my only work was to grow in what I could do.

I then realized that I had misread my reaction, I wasn’t jealous of them, I was grieving the loss of my non-spoonie self who could make a commitment to a daily practice and choose to do more than I had done the day before, the week before, or the month before. Spoonie life takes this away and that’s rough. We live in such a competition based dominant culture that it can feel like a huge change just to not compete with others and, instead, to claim that the only person we need to compete with is ourselves. But here’s the thing, we don’t need to compete with ourselves. We don’t need to compete at all.

We only need to be awake to our own lives. I didn’t have to “go every day” to live up to my commitment. I needed to tune into my body and breath everyday and make space to unplug from technology and find quiet. That is a commitment I can make while living chronically. From this quiet space I am better able to assess what supports restoration in and growth for my body and spirit and ensure I sustainably build a practice from a place that is not based in competition but in connection to what is. 

So on this Day 5 of Spoonie Yoga challenge, I invite you to do just that, to tune into your body and self and what is actually happening. Can you, for two minutes, put Spacedown your computer (or phone or pad) and begin to focus on a deep inhale and longer exhale. Can you focus on a simple dozen long inhales and longer exhales. And from this place of connection to your breath, you can ask yourself, what asana does my body need right now, as it is, to support yoga that I can do right now, as I am? It is not a race. It is not about where your body was last week or where you hope it will be tomorrow. It is not about being better than you were before. It is about you being present with what is actually happening. You do not have to love what is. You do not have to be grateful for or positive about it.  The question can just be– where are possibilities for compassion for myself in that place?

What is a kind way to hold your body in its pain? What poses will support you in a practice with the balance issues you have? How can your body, with its nausea, find release? Regardless, I invite you to spend a little time, even just a few minutes, breathing deeply in 2 or 3 poses as an active practice of compassion for your body as it actually is. 

Feeling safe enough to move when you’ve got PTSD and trauma stored in your body (Spoonie Yoga Day 3)

CW: Discussion of having abuse triggers, no description of abuse.

I remember going to yoga for the first time at 18 and doing my first cat’s stretch. The rolling of my hips, while staying connected to my breath, made me panic. A history of childhood abuse made this connection to my body both terrifying and a thing I wanted most desperately. As I started to attend yoga regularly, I would frequently start to sob mid-pose because of what the movement unlocked in my body. 

And these were the good days. The days I could face unlocking the trauma stored in my body and feeling the feelings it evoked. I would also go through months at a time when I would try to make it to class everyday and not manage to. Everyday. It’s not that this has entirely ceased to be an issue but it happens far less often. Some of the reason for this is that through years of movement (and also a hell of a lot of therapy), I am not breaking open new trauma in my body, I am facing something much more familiar. But there are still really hard days and there are concrete things that have helped. I’ve got a few of them outlined here:

  • Having a home yoga routine. Sometimes being in a public place *and* moving my body is just too damn much. I subscribe to Gaia.com because there are thousands of routines and I like that I can enter preferred styles, lengths of time, or a preferred teacher and just select a routine based on those criteria. However, if additional $7 a month is not available to you (so many chronic folks have such tight access to funds), you tube is full of free and simple yoga routines. Once you find a teacher you like it can help to narrow the scope to be less overwhelming. 
  • Find a setting that will tell you that your practice is just between you and your
    18813185_10155196181002597_5458360846728031099_n
    What will give you the sense of being your own safe island? 

    body. Do you need to feel entirely alone? Is there a room you can go into with a door that locks? Can you barricade the room with a chair against the door? This is not a comment on your spouse or room mates, it is a way to speak to the survivour part of your brain and tell it “you are safe to move and no one can touch you.” It is a way to tell your triggers “you are the only one here and you can move just for you.” 

  • Skip the poses that don’t feel okay for you. Once you have been doing yoga for a long time, you will have the skills to adapt your practice. But in the early stages, if moving a certain way is going to send you into a crisis, come back to sitting in a cross-legged position, to child’s pose, or to shavasana and stay connected to your breath until the next pose is happening (you can do this is classes too). I had a yoga teacher once who told me that the practice begins when you stay centred on breathing in and breathing out and it ends when you hold your breath. Know that taking some time just to stay centred on your breath is a valuable way to continue your practice and honour yourself and what your body is releasing. 
  • Get support. I find it invaluable to have people I check in with before a practice and/or to check in when it’s completed. So much of the abuse I faced was isolating and just knowing that other people might have fears that make them avoid a sense of connection to their bodies and breath is helpful part of breaking this sense of isolation in my current struggles. I run a Yoga and Meditation Accountability Group on FB. Please feel free to request to join and I’ll add you to this tiny community of folks supporting each other in taking care of ourselves.

If you are doing a practice today, my wish for you is a restored connection to your body and sense of self. If you are struggling to practice today, my wish for you is that you find a way into a space where you can feel safe enough to move. 

19366480_10155260001317597_1898028666221291813_n.jpg
Let’s act as sanctuary for each other

 

Chronic Yogi Day 2: Who wants a mirror for their s**t? Yoga and my stuck places

Yesterday was day two of the Spoonie Yoga challenge and it was a struggle for me. Sometimes yoga is just a mirror for the s**t I am bringing to my life and its stuck places. And who wants a s**t mirror? Living with a chronic is rough. To state the obvious, chronic pain can make you freaking sad. It can make otherwise tricky things (moving, a job search, finding your socks) excruciating. Lately I’m burnt out on things being up in the air and have been feeling really stuck. There is a lot that is external to me in these situations and so damn many choices for me to make. 

I started my practice yesterday with the goal of helping to support my lymphatic system. I have really bad Multiple Chemical Sensitivities and yoga helps to keep my lymphatic system moving better than it would otherwise, making me less prone to attack. As I began, I was filled with self- doubt: I must be doing the practice wrong! Here’s the thing, if I am breathing and in the asana safely, there isn’t a “wrong” way to have a practice. But I didn’t know that yesterday. Yesterday I was sure that I was not doing the right poses, not holding them long enough, and my order must be all wrong. I wasn’t able to trust that I was listening to and responding to my body. I wasn’t able to trust myself. 

And there’s the s**t. This is the mirror that yoga held up to my situation. Through all the decisions, transitions, and turmoil as of late, I have to make an abundance of difficult decisions and I had lost my ability to trust that I can listen to myself and respond with the wisdom that the situation needs. This epiphany, of course, does not give me back some slightly eroded confidence, but by having time and space where nothing was happening that I did not bring to the situation, I could more clearly see where there were some sources of power in my otherwise very situational stuck places. I lack self trust. This mirror is part of why I sometimes avoid yoga. When I am stressed and overwhelmed, I check out a bit. I have the misguided logic that if I feel less I will also feel less overwhelmed. The result is, unsurprisingly, that I just don’t feel as grounded or as centred in myself or my decisions. 

If you are approaching a yoga (or other self care or spiritual) practice today, what might be holding you back? Are you feeling a bit numb and the practice would open the door to the feelings underneath? Are you so overwhelmed by the external that facing the internal begins to feel like yet another thing to do? I really understand. I will also offer this: when we are less numb we are better equipped… you have the wisdom inside you to support you in doing the thing. path

Setting Up for Regular Spoonie Yoga Day 1: 4 Key Questions for a Chronic Yogi Practice

Spoon Theory articulates the way that many folks with chronic illnesses have a limited amount of energy, or number of “spoons,” to do everyday things. We may use up our spoons taking a shower and eating breakfast and then not have the spoons to go grocery shopping. Or, on a different day, we may have the energy to go for a walk with a friend but then not have the energy to make dinner. “Spoonies,” then, are in the position of attempting to predict and ration our spoons, weighing our needs for getting by against basic quality of life. Knowing what to nurture and what to sacrifice when there is never enough to go around is daunting and exhausting. How does this relate to yoga? 

Folks without disabilities can often do yoga in order to gain energy, with spoonies it’s more complicated. How do we construct a practice with the least likelihood of using up our spoons, leaving us unable to do the other things we need to do? How do we build a practice that will restore, rather than deplete, us?  I have found the following 4 questions to be useful for this:

Question 1:  What time of day do I need to practice? 

If I do yoga shortly after waking up, I carry less tension and it then takes less spoons for me to do everyday tasks. It also keeps me from getting into an anxiety loop about when I will do my practice (and the practice will then help reduce my anxiety loops in general). This is not the case for everyone. Some folks with chronic illnesses find a mid-day practice is what they need to have a gap between the first and later parts of the day to restore their energy. Others find a practice right before bed is most beneficial as it helps to reduce the their sense of depletion from the day and the kind of fatigue that can disrupt their sleep (yep, chronic fatigue can disrupt your sleep). Regardless of the time, I encourage you to choose it deliberately. Spending a lot of energy “about to” get to a practice but not quite getting to it can be a drain for our days, the last thing we need! If you listen to your body and intuition, what would be most beneficial to you? 

Question 2: What does my body need in order to practice? 

This may sound simple, but it’s so important. Do you need a glass of water? Have one! Do you need to take some meds? Do you need many supportive pillows or even to do your practice from bed? When we are in constant pain, tension is inevitable. I invite you to find a way to find what tension is optional, what discomfort is able to be alleviated and see if there are one or two simple things that could help give you whatever ease is available to you. 

Question 3: What  release would reduce the spoons I need for everyday tasks? 

Tension is draining. My yoga practice is so valuable for helping me release some of the tension I inevitably carry with chronic illness that places additional burdens on my day. child's with catIf I begin with neck and shoulder rolls, I will carry less of the tension that uses more spoons to get through my day. If I do some extended leg stretches, it will help flush my lymphatic system in my legs and a clogged system that will otherwise leave me with less energy. If I spend time in child’s pose, some of my back tension will release and make my day a tiny bit easier. What will support your release? 

Question 4: What would nourish my energy rather than deplete it? 

Yoga is a spiritual practice as well as a physical practice. Rather than a yoga practice that is about getting into difficult poses, building strength in long-held standing asana, or a flow that will work up a sweat… spoonies may have times where we need to think strategically about how tension release can build capacity. I encourage chronic yogis to begin and end their practice with pranayama (breathing) exercises that help to draw in energy and focus on healing capacities within your body. 

Please feel free to leave a comment if you would like support in finding accessible routines and other resources online! 

How is a Spoonie Yoga Practice Different from Other Yoga Practices? (And Would You Like to Join Me for a Free 12 Day Chronic Yogi Challenge?)

My yoga practice has been a very real life saver to me over the decades. I am so grateful to the practitioners from India who saw how badly those of us in the West needed this work and decided to share it in this context (notably Swami Vivekananda and krishnamacharya, but there are many others). It would have been more than reasonable to not respond with this compassion given global politics of colonialism and exploitation and yet because of this generosity, here I am, still managing to live with multiple chronic illnesses. Be it managing anxiety, working through trauma, supporting pain reduction, or connecting to a sense of inner joy, yoga has kept me going and it is to credit for so much of the well-being I manage to cultivate.

Having a regular yoga practice is one of the most powerful ways I connect to myself and cultivate mental, physical, emotional, and spiritual resilience. However, having  a regular yoga practice as a spoonie poses many challenges. Many mainstream yoga

il_fullxfull.743556421_7w66
MilkandHoneyLuxaries (Etsy)

classes are geared to encouraging us to move at our edges–a valuable practice where you find how far you can take your movements and asanas (poses) without doing any harm to yourself. However, as a spoonie, what we can do one day may leave us wiped out for a week and it’s hard to know the difference between safe in the moment and safe in the long term. And sometimes we can’t know what will be safe, we can only wait and see. 

Another challenge is that yoga is often taught to build on what we can do. I used to relish that in yoga I did not compete with anyone, I just needed to accept where I was on a particular day without judgement. This became much more difficult when the span of “where I was” wasn’t about how deeply I could sink into a lunge but about whether or not I could be out of bed. Building a yoga practice as a spoonie requires me to practice a form of self-acceptance where I approach my practice everyday with what I call radical curiosity as to what practice will support my body as it is. Is it lying on my back and breathing deeply from the bed, slowly finding therapeutic angles for my arms and for my legs that support pressure alleviation? Is it going out to a park and doing an an active practice of sun salutations? Either may be possible, as will anything in between. I had to completely release the idea that my practice headed toward a goal of any kind and instead embrace radical curiosity. And it helps. It radically helps with my capacity to live with chronic conditions. As part of my gratitude for having yoga available to me before getting sick, so I was able to rebuild a practice around my needs as a person with disabilities, I am committed to supporting other people in building sustainable yoga practices around chronic illnesses. 

Want to join me on a 12 day Chronic Yogi Challenge? It’s simple. We support each CoverCY.jpgother in finding a way into our practices everyday for 12 days. I am here to offer suggestions as to adaptations and free or cheap online resources and provide accountability check-ins, if that serves you. I will be posting everyday about my own yoga practice from the day before, the adaptations and reflections that I needed in order to find consistency needed in order to return daily to the mat. I will also post questions to help you get started and sustain your practice over 12 days. If not beginning in July 2017, just check in with me and see if I’m able to support the process with your Day 1 at at the time you read this. Please feel free to comment with your own process. You can follow this page or follow on FB or TwitterI’m exited to share chronic community as yogis, as people with chronic illnesses, and folks in struggle together. 

 

What is it like to live with a chronic condition that is not recognized? On Living with Lyme.

 

The Center for Disease Control does not recognize chronic Lyme. Unless you live with a condition that is not recognized or covered it’s hard to understand the extent to which the lack of recognition can put us and our health in danger. There are many really shifty and unethical things that allow the lack of recognition to continue. I highly recommend folks watch the documentary Under Our Skin for more understanding both about what it can be like to live with chronic Lyme as well as the political climate that keeps the disease unrecognized and untreatable. It’s available for free viewing: https://www.youtube.com/watch?v=RlvDVTKbNMQ. This post isn’t about how it works the way it does, instead it focuses on the implications for those of us living with the condition.

This post briefly overviews some of the difficulties involved but it is by no means comprehensive!

  • It’s hard to get diagnosed! How do you have something that doesn’t exist? The official stance of the CDC is that after a course of antibiotics, any health complications are due to something else going on for a person. I’m not sure why it’s important to take 1 course of antibiotics for early Lyme if there is no later stage. Hmmm.
  • Treatment is spectacularly expensive and entirely out-of-pocket. This means that my health is way more solid than it was two years ago but we are a bit of a financial mess. It also means that my lower income friends continue to get sicker without access to treatment.
  • There is no funding for research. There could be a potential cure. There could be the capacity to further explore the link between Lyme and other conditions such as Alzeimer’s, ALS, MS, but if something is not recognized, we cannot advance our understanding of it.
  • We have to hide our condition when talking with health care professionals. That’s right, I let “chronic Lyme” slip when I was in emergency for heart attack imagessymptoms and they sent me home with Ativan because in this system “belief” that you have Lyme = hypochondriac. I didn’t tell my primary care physician so that I won’t have my other symptoms dismissed but this means that I have to be spectacularly vigilant and well-researched about contra-indications because I can’t tell them what meds I take for Lyme. As a result, my friends who don’t have research skills or who are suffering from acute brain-fog from Lyme can wind up in some dangerous situations!
  • No one knows if we are having a Lyme complication or have developed a new condition. Right now I am facing the possibility that I have Hashimoto’s. I would love to know if my blood work results are indicative of my body fighting Lyme or is a new condition, but this expertise is not available.
  • We don’t get accommodations. I don’t have a Handydart bus pass. I don’t have an accessibility license plate. I can’t file as a Person With Disabilities at my work. Folks with chronic Lyme are not eligible for disability benefits. We are outside any legal accommodation requirements no matter how impacted by the conditions.
  • Our conditions are often chalked up to personal failure rather than medical neglect. And after days, weeks, months, or years of nonstop pain, sometimes the “it’s all in your head” response can be the last straw with our capacity to cope!

If you are dealing with this, I see you. I know that you struggle without recognition and without nearly enough resources and accommodation. This is not your fault. It’s due to neglect, horrible policies, and practices. If you do not have chronic Lyme, your knowledge as to what we face is critical. I urge you to learn more about the CDC practices, to write letters of protest, to help organize rallies demanding recognition, and above all, to show up in practical ways for those who are battling this condition and this system.

2853453_1457655347.2966_funddescription

“If You Haven’t Got Your Health, You Haven’t Got Anything:” Chronic Illness and the Need to Recognize Intrinsic Value

“If you haven’t got your health, you haven’t got anything.” I encounter the phrase in all sorts of places–TV shows, vitamin adds, friend’s comments. Though seldom the intention, it can be a pretty crappy message for those of us who are ill and do not have our health, that we have nothing. 

It’s not the only place we encounter this message, of course. Dominant Western culture routinely places numerical value on human lives from what we might cost to what we might produce. We are acculturated into seeing our value in terms of things we do and our accomplishments. I was no exception. While I was doing my PhD, I was also publishing as much as I could, applying for future grants, and presenting at conferences. It didn’t seem like measuring my worth to me at the time, because it wasn’t particularly financially lucrative. I was making a contribution to my field, I told myself. Furthering an analysis of social justice in education. This was worthwhile work, I told myself, and I believe that it was. But I had a few things mixed up. I didn’t realize until I couldn’t do any of it for a long time that seeing the work as worthwhile had become intertwined with how I saw my own value. And I already was worthwhile, whether or not I made contributions to the literature. 

That’s the thing about chronic illness, it really brings us face to face with how we’ve drawn our sense of how we value ourselves… usually because we don’t have access to it in the same way anymore. This is really, really rough. Most folks with chronic illness are in torture levels of pain most, if not all, of the time. If we drew our sense of being worthwhile from work, we generally can’t work in the way we did. If we drew it from our independence, we may need help with everyday self-care and maintenance. It challenges every source we may draw from. 

One of the really hard ones for me was my active way of life. I loved cycling commuting, I loved going hiking in the woods. I loved swimming in fresh water. Connection to nature is so nourishing for me and living with least harm to the planet, a core value. I can’t live in the way that I used to. I need a car to not be housebound. I’m writing about these losses just to say that I get it, the grieving is real. 

I’ve tried to re-evaluate the sources I draw from. I’ve made lists. Without my health I have:

16807143_10154861887207597_640215083818794494_n
Always having intrinsic worth.
  • Love and connection to my wife, our dog, and our cat
  • A sense of awe in nature
  • Compassion and care for my friends
  • A sense of silliness, a cultivation of goofiness 

While these can help me make a conscious move away from accomplishment oriented worth and toward valuing relationships, it did not go far enough. What about the days that illness makes me cranky and feeling disconnected? When I am stuck in bed? I am am working on drawing a sense of being complete in my breath. In the act of breathing. I am having more days where I attempt to sip tea slowly and know that in those moments, I’m already enough. 

If you are grieving losses, I want to offer this: we are more than how we draw our sense of belonging, our sense of value. You are not your work, your value is not your work. You are always, already worthwhile. Without your health, you have something. You have intrinsic value. 

 

12622316_10153787885572597_8812258067988543612_o
Having value in the act of breathing.