Spoonie yoga chronicles: a reference for the spoonie yoga series

Here we are! The final post for the Spoonie Yoga Series. The series follows some of the
challenges and possibilities in maintaining a regular practice with a chronic illness. MeditationWhile writing this series, I experienced a spectacular pain flare and much upheaval. This is reflected in the series that tackles some really difficult aspects of finding consistency when it’s sorely lacking from our bodies. This post serves as a reference for the series, to help you find the information that will be most useful to you.
The posts fall along four over-arching themes to me: Understanding your yoga needs as a spoonie, Challenging internalized ableism, Facing a Flare, and Working with mental health struggles and PTSD.

 

Spoonie Yoga Series Themes 

Understanding your yoga needs as a spoonie: 

How is a spoonie yoga practice different from other yoga practices?

Setting up for regular spoonie yoga 

Challenging internalized ableism:

The challenge of not competing with anyone, even our former (well) selves

Giving up the able-bodied charade

The art of not pushing ourselves

Facing a flare

What if it stays this bad? Chronic Illness and managing what ifs

What do you need to hear when your chronic illness flares?

Working with mental health struggles and PTSD

“I’m too f**ked up to meditate:” How mental health struggles challenge a regular practice 

Feeling safe enough to move when you’ve got PTSD and trauma stored in your body 

Who wants a mirror for their s**t? Yoga and my stuck places

How about you, friends? What have you noticed about your struggles and strengths in building a regular practice with a chronic illness? Please feel free to share your stories here. I’d love to hear from you! 

 

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Yoga Nidra Practice: Yoga for when you can’t move, meditation for when you are too anxious to meditate (Spoonie series 11)

So often chronically ill folks are given a slew of advice as to what would “cure” us! We are told about cousin’s friend’s miracle cure that got rid of their condition just like ours. Except that it rarely is. And those recommending rarely know of the plights we have undertaken to try all the things and research we have already conducted to find answers. One of the most frustrating recommendations for many is how often we are told that having a yoga practice would be a miracle cure. This is often coming from a good place, of course, but when you can barely sit up and someone is talking about an active practice of sun salutations and strength building standing poses it is not a comfort.

When I first got sick,  I was really missing my active practice but was unable to do it because of my illness, so claims that what I wanted very much to do would be my cure if only I would do them were bittersweet to say the least. I am always grateful that I all had a long-standing yoga practice before I got sick as it has been such a profound life-line for me through living with chronic illness and pain. Not as a cure, but as a tool. My practice had to change dramatically. I do yin or restorative yoga most often and even my active practice now does not look like what it used to.

Yoga Nidra is a particular favourite of mine for when I can’t move at all. It is a meditation that is done lying down and involves no movement. In fact, complete stillness is part of the practice. The guided meditation takes a person through a series of visualizations that help to “send the body to sleep.” According to Yoga Nidra philosophy, we can enter the state of consciousness that happens right as we drift into sleep. It is said that half an hour of this practice can be as restful as 3 hours of sleep…. this is exactly what I need most of the time! 

I love the restorative qualities of Yoga Nidra, as well as the way it can help reduce the anxiety and panic that long-term chronic pain or PTSD can evoke. While mindfulness meditation and Vipassana can be wonderful for many folks, including people with anxiety and trauma, it is not always the right thing for everyone at all times. Some authors suggest that it can even trigger flares for some people’s existing mental health conditions. I have found this to be true for me. My anxiety can spiral when I am attempting to meditate solely on my breath if I am not in a solid enough place to do this. Yoga Nidra is one of the safer meditations for my health issues as it gives very concrete imagery to follow. When mindful meditation solely feels like too big a shift from the level of anxiety I may be facing during a pain flare, Yoga Nidra offers a gentle way to attain greater equilibrium. 

There are countless iterations of the Yoga Nidra script available online. The Yoga Nidra that has helped me the most is available on here on You Tube as well as here on ITunes free of charge. The practice is detailed enough that a person who is new will be able to gain an understanding of what the practice can be for them without so much variation that the core themes that they risk getting lost. Be it through this or something else entirely, I hope you are able to find a route to a practice that can give you the restoration of yoga when you are not well enough to move and the ease of meditation when you might be too anxious to find your way directly into a meditative space. trees light

A love letter to justice focused queers who are housebound during pride…

I came out in 1997 and started doing all pride season things. After I stopped being a wide-eyed baby queer, I generally started to skip the big, corporate parade but in Vancouver that’s a teeny part in several weeks of festivals, concerts, plays, parties, and marches. I love running into everyone who I may not often see and catching up with folks. I love seeing festivals in the park with queer youth performance groups, drag queen elders, and everyone in between.I love being with all the weird and wonderful people, my people. 

This year most of the province is on fire. The air quality is horrible and I am stuck in the house. In the house with the windows closed and several noisy air purifiers on. Taking meds. And drinking medicinal tea. The isolation is seriously getting to me today. I feel so damn cut off from my community of queers. I know many others are too and have been for a long time. If you are stuck at home today, you are not alone. And you, with your chronic illness and queerness, are an important part of  queer culture.

Pride started after working class queer and trans youth, primarily people of colour, fought back against the police violence that shaped all aspects of queer life. It was illegal for queer and trans folks to meet in public places, to not wear gender “appropriate” clothing. Queer spaces were constantly, violently raided and patrons arrested to face horrors in jail. In 1969 queer and trans folks fought back against attacks on the Stonewall Inn bar and the rioting continued for a week, spurring an international movement. The first Pride march was one year later. Struggle to survive is embedded in this movement. And you, too, remain part of this. 

You are struggling to survive. To live with more pain and anxiety than you know how to cope with. And still we hold fundraisers to make sure folks have access to health care, we find creative ways to show up for each other while having panic attacks so we don’t face hard appointments alone, we help each other find boxes when we have to move again and again. We find ways to organize or at least to support the Black Lives Matter actions that keep alive the spirit of pride, speaking out against police violence. We find a way to roll over from our less painful side on the couch and promote an event and speak back to raising racism and ableism in queer communities. This, and you, are vital to our communities during this season. 

Before I was sick, I would dress up in fabulous, glamourous outfits for each event– fishnets, slips, lipstick to match the shade of my red boa. Today, I am not dressed, let alone dressed up and the feeling of disconnect from my own self as well as from my community is palpable. To my fellow chronically ill queers, I want to acknowledge the way you keep your fabulous femme energies through creatively draping a sheet when you can’t get out of bed and dress up. I acknowledge your handsome butch nod when someone hands you a glass of water. That these are sexy expressions of your queerness. You do not have to stand in your heels or hold a door open. There is nothing more queer than the lace you sewed onto the side of your breathing mask. You may not be at the Dyke march today, but no queerness is as accomplished as this. Your efforts have not gone without notice.

Your body and self are beautifully necessary to queer culture’s move toward greater resilience, greater solidarity, and creative move toward anti-oppression. I am celebrating you today, from next to my air filter. 12794653_10153588310272515_7927125473457083124_o

Giving up the able-bodied charade (Spoonie series 10)

In 2016, I led a group titled Living Chronically for folks living with chronic pain, disability, or illness. The participants were amazing. The heroics they went through to get up and get to the group and hold a supportive, reflective, and often silly  space was pretty damn remarkable. On the first day I remember encouraging everyone to make themselves as comfortable as possible but even as the words were coming out of my mouth, I noticed that it sounded like a sad mockery. Make ourselves comfortable? Our lives were often shaped by the gnawing pain and discomfort we constantly lived in.

In place of this statement, we took up the phrase, “if there is anything you can do to ease any of your discomfort, we’ll support you in doing that.” Everyone had an opportunity to say what that might be. For one person, it was moving to a space without overhead lights, for another is was being able to lie on her side on the floor. We supported each other in shedding some of the baggage that prevented us from being able to do this in most social situations (and often led to our being socially isolated as a result). We had internalized some of the dominant cultural crap around being seen as too needy or taking up too much along with the social stigma that comes with not keeping our illnesses under an able-bodied facade. And the support helped. Many folks were able to make it to the group when they wouldn’t have made it to other events where they felt additionally compelled to appear to be without pain. This was great for group dynamics and has also stayed with me as I work to live with ongoing chronic pain. It has even impacted my yoga practice, not in terms of asana, but in my prioritizing my practice in unconventional times and places. 

Lyme has really reduced my capacity to be out in the world doing everyday things for anywhere near the lengths of time that I used to. My legs start throbbing if I stand for any amount of time. My body cramps up if I sit too long. I get exhaustion walking. Lights and noise make my pain flare. I do what I can, but there is much that is just a really tricky balancing act. Often restorative yoga can help as a kind of “reset” for my body. If I can stop mid-day and release some of the tensions building up, I am better able to go from one thing to another. Its been awhile since I’ve lived in the centre of things, so being able to do this has relied on me bring my yoga mat and finding a place to flop and tune into replenishing my oh-so-easily depleted body.

I’ve carried my share of self-consciousness about this as I’ve gone about finding a corner of a park, an area of a ferry, a side room at a gathering. My yoga is not 2014-02-23 15.33.45glamourous. There are no impressive backbends or headstands. The Living Chronically group was invaluable to helping me externalize the shame that comes with failing to attain an able-bodied pretence. Recently I was doing yoga on a ferry to Vancouver Island and could hear the odd passerby talking about it, “no that’s Cat/Cow pose, that’s what it’s called–Cat/Cow.” Another time, “oh hmm, I guess I could do that. I just need a mat.” Yep, just a mat… and an ability to over-ride disapproving glances and stay steadfast in my commitment to care for my chronically ill body. 

Let’s make spaces where we support each other in doing whatever we can to ease whatever discomfort can be eased.

Let’s hold space for what our bodies actually need and not how they can appear the least disruptive.

Let’s give up the able-bodied charade! 1930526_37069167596_3629_n

 

 

The Art of Not Pushing Ourselves (Spoonie series day 9)

One thing that sets chronic life apart from able-bodied life is our relationship to pushing ourselves. I was no stranger to this before Lyme. I’ve had chronic migraines all my life and a trauma history that made me have to push to get through my day often. But I would get through the day when I pushed. Now, not so much. Too much pushing and my limbs stop moving.  

[I also recognize that we’re often pushing ourselves to get through the day. To eat our lunch, to take our meds. there is a different kind of pushing I’m hoping to articulate here.]

I am the sort who thrives on building a new skill set and on finding ways to do what I thought I could not do. I’ve juggled multiple jobs while doing graduate degrees and writing children’s picture books while in chronic pain. But I could do it. Last week I accepted an offer for a Really Good Job. I knew it would be both high stress and a high learning curve, but I was fine with that. I rested on my pre-Lyme narrative: I’ve got good brains and I don’t give up, I was sure I would figure it all out. I was also delighted to be using my PhD skills and to work at a wage that would finally have us able to pay down debt and not be scraping the bottom of the barrel paycheque-to-paycheque.

But it quickly became clear that to do what I used to do, to push myself to step up and focus and work like stink until I got it, would do great damage to myself and my health.  Rather than being able to “buckle down,” the stress immediately caused my pain levels to rise and I was, at once, battling debilitating exhaustion and fatigue. This triggered a Lyme anxiety loop that had me unable to work with clarity. To top it all off, my Multiple Chemical Sensitivities worsened and my breathing became compromised. Living with Lyme, I can risk relapse to the worst stages and that’s not a place I want to have to come back from again.

I left the job. It was really hard. I have taken a job with less hours, a third of the pay, and that does not require any of my education. It is the kind of work I have done before and already know that I do well. This is not what pre-Lyme me would have done, but this is what I had to do. We’re broke again, of course, and I really hate how people with disabilities are so often living in poverty because of how the larger capitalist system works. I’m grappling with all of this but know that it was necessary. 

In his wonderful book, Exile and Pride: Disability, Queerness, and Liberation, Eli Clare IMG_1852describes a time when he was mountain climbing and turned around due to slippery climbing conditions and his precarious balance because from Cerebral Palsy. He tells of how his friends offered him pep talks about how he could maybe go back and climb the mountain in better whether or with better gear, assuring him that he could do anything. He writes of the difficulty to over-come the pressure that we must keep trying to overcome limitations and notes that not one person heard his story and affirmed, “you made the right choice,” in regards to his decision to turn around.

I was offered many pep talks and much support from friends this last week. I appreciate all of it, but I didn’t need the encouragement to push forward. That voice is already firmly planted in my psyche. The most useful interactions I had were from those who reflected that it is okay to turn down what I would otherwise love to do and that I was making the right choice to see the limitations I have and work within them.

So if you, Chronic Yogi reader, need just such a reminder today, I will offer this:

It is okay to turn down what you would like to do because you cannot do it.

It is okay if your relationship to being up for a challenge must change to do illness.

It is okay to grieve the missed opportunities,

And it is okay to stop and turn around anyway.

You made the right choice.