Tag Archives: self-care

Recuperating is not relaxing

Life has been a bit chaotic, so I apologize for the gap between posts. ¬†I was going to just post a picture that I took of my foot on the scooter wearing awesome shiny leopard print shoes, but in that moment of “silly snapshot” I started beating myself up for wasting time.

Here are the shoes…yay shoes ūüôā

Shiny leopard loafers & the footbar of my TravelScoot
Shiny leopard loafers & the footbar of my TravelScoot

That probably sounds ridiculous, but my train of thought was that I spend a lot of my time doing what people would consider “leisure” activities when I’m trying to recover from this overly busy life I lead (overly busy for my body at least). ¬†What I wasn’t thinking about is that those “leisure” activities are a way to try to pass time in a way that makes recuperating more tolerable. ¬†It’s time that I can’t work…either my pain level is too high or my medication is making me loopy (mostly the former as my current med regime isn’t working for the physical activity level I want to maintain). ¬†If I can’t work, then I’m left with things usually labeled as leisure activities. ¬†Watching TV, listening to an audio book, poking around my blog feed or social media, or (if I’m lucky) reading a physical fiction book. ¬†Especially when my pain is high, sleep isn’t an option and a person has to figure out how to pass the time in ways that don’t exacerbate stress levels (stress = more pain).

Recovering is not relaxing.  Recuperating is not relaxing.

Most people need relaxation, time that is theirs for the sole purpose of being pleasurable.

Joyful.

Happy.

Removing distress via de-stressing.

I realized that I needed to stop beating myself up for the time I take to survive life with chronic pain.  I also realized that I also need to take time to be silly, to do something because I want to instead of have to, to take a few spoons and do something that makes me feel like a whole and complete person.

As a doctoral student who wants to keep working in higher education (a tenure track job as my first choice), there’s a huge pressure to be constantly busy, to feel guilt when I do¬†anything that isn’t related to my career. ¬†Chronic pain is forcing me to challenge what it means to be a successful academic. ¬†I would have to say that this challenge goes beyond academe…what does it mean to be successful? ¬†What does that look like, what does it act like, what does it feel like?

I’ve learned that, for me, success isn’t about forcing my body to go-go-go when my body is screaming please stop! ¬†It’s not about trying to trick myself into believing that watching Agents of S.H.I.E.L.D. while trying not to cry from excruciating pain is rejuvenating. ¬†It’s not about pushing myself to comprehend Foucault’s notion of biopower when I have to crawl from the bathroom to bed because my legs are almost useless.

It’s about living a life worth living.

More specifically, for me, it’s about finding a way to be a passionate scholar that still has the spark to pass along that passion, whether through my teaching or my research. ¬†If I keep trying to mash together recuperating and relaxing in a misguided attempt at multitasking (much like my attempts to text and push my manual wheelchair…I only have two hands), I can’t be that. ¬†It takes me longer to accomplish something and that’s ok. ¬†If I keep fighting my body, I won’t succeed. ¬†If I manage to complete my degree, I will likely resent the hard work and years spent working on getting my PhD. ¬†I will end up as a bitter “post-ac” trying to figure out how to get a disability-compatible job while being overeducated. ¬†That’s not what I want…I have too much passion for my research and I know it will make a difference in people’s lives.

I just need to remind myself that I can’t make a difference if I don’t take care of my body/mind. ¬†It might be a crappy jalopy of a body with parts missing and broken and patched together with titanium, but I don’t get to bring my body to a used body lot for a trade-in.

Recuperating is not relaxing.

Recuperating and relaxing cannot be combined for multitasking.

Relaxing is necessary for mental health.

Mental health is important for physical health.

Physical health requires recuperating.

 

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Anxiety & Ableism

My partner standing regally behind the assembled TravelScoot
My partner standing regally behind the assembled TravelScoot

The TravelScoot arrived! ¬†Huzzah! ¬†I’m waiting for the seat back and a basket, but it’s really here! ¬†You all helped! The picture on the left shows it put together in my living room with my partner standing behind it with lots of bookshelves (that will be sad looking bookshelves if I ever get a full time professor gig as the at least half of those books will be transplanted).

So what’s with this anxiety thing in the title of this post?

Anxiety about ableism.

Anxiety about weight stigma mixed with ableism.

Internalized crap about my body size.

Internalized crap about my body’s ability.

This seems to be a process I go through with every incarnation of adaptive aid I’ve ever used in this broken spine journey. ¬†I did it with the cane, the crutch, the manual wheelchair. ¬†Part of it is a process of accepting that my body is unfixable with today’s medical technology. ¬†This is hard, especially post-surgery with the fantastic diagnosis of “failed back surgery syndrome” (no shit, that’s what it’s called….it has a more jargon-filled name as well, “post-laminectomy syndrome” but anyone with knowledge of medical terminology knows that that isn’t a particularly useful term). ¬†It’s hard looking at the compromised care I received because of my size and assumptions about what I do or don’t do with my body. ¬†The compromised care I received because of corporate health care telling my surgeon to just get things done as quickly as possible, without thoroughly talking to the patient (because I’m pretty sure that if my surgeon did this, he would have known that I have bilateral nerve damage from the broken & slipped vertebra, not just on the left side). ¬†Rehabilitation narratives are harmful when a person can’t be rehabilitated.

Another part is the constant fight with people that don’t understand that ability is a moving target for many people, not a fixed point in space. ¬†Sometimes that moving target is over a long period of time, whether it’s a downward slide like folks with degenerative disorders like muscular dystrophy or episodic like some forms of multiple sclerosis (MS). ¬†Sometimes that moving target is in the span of a single day. ¬†For me, it’s both (although I really try to only worry about the short term at this point so I can keep my long term worries focused on my PhD). ¬†If I’m careful about how I move my body and take appropriate breaks, I am sometimes rewarded with things like being able to bellydance (which, because of a rotten combination of schedules, money, & body crap, I haven’t been to a class or rehearsal since July). ¬†

That reward is not visible to anyone except for me and my husband and sometimes a few other folks if I chose to communicate that, whether verbal or not. ¬†Sometimes I’m not rewarded at all, and that sucks. ¬†Sometimes I’m able to push through even though I’m not rewarded, although I generally pay the price for days afterward if I make that choice. ¬†Either way, I know that spoon management (time/energy) is the most likely route to being able to do what I love to do with my body.¬†

Even though I know this and can articulate this, I still fight myself. ¬†I’m afraid to use the scooter to go to campus. ¬†I’m afraid of the looks and the comments. ¬†There is so much violence, both verbal and physical, to people with invisible or variable disabilities that I’m afraid. ¬†While the scooter affords me the assumption that I can walk at least a little bit (versus the manual wheelchair that people see as a symbol of paralysis), it also carries the stigma that goes along with the anti-fat rhetoric rolling through society right now. ¬†

While the scooter means I will be able to be more active (both on an exercise/dance/fitness level and a “hey, now I can get around campus and can scoot to school/work” level), I’m confronted with my years and years of trying to be the Good Fatty and the Stereotype Defying Fat Person (mixed with some supercrip because of my congenital disabilities, just for garnish). ¬†I want to yell to the world that hey, now I can actually be able to do meaningful physical activity that will make me a healthier person!!….but there’s an underlying¬†healthism to that as well by saying that I’m somehow better than the scooter fatty that doesn’t want to exercise.* ¬†News flash to my subconscious: there is no moral obligation to be healthy or to attempt to be healthier.

Right now I’m trying to keep up the mantra that using the scooter, especially on days where I work in my office and teach in a building a couple blocks away (which my spine absolutely loathes, on top of trying to stand while teaching), will lead to dancing and working out joyfully. ¬†I just need to ignore the haters and own my existence.

*As a kinesiologist, I totally want people to be more active, but I want that activity to be on their own terms. ¬†Coerced exercise, whether for health, weight loss, etc is counterproductive and harmful to a person’s mental health.

Cyborg Dance Projekt: Fears for the future

2009 CONvergence, photo by Dave Stagner Photography
2009 CONvergence, photo by Dave Stagner Photography

I’ve been avoiding this post for a while. ¬†It started with missing a few classes, which I attributed to a bad combination of working my job plus doing my mentored teaching plus trying (still) to finish my incomplete coursework. ¬†Then the first summer session ended, leaving me with only my job and my coursework, but I was still having trouble making it to classes & troupe rehearsals. ¬†Then my trip to Minnesota for CONvergence at the beginning of July where I realized that my pain problems with flying have little to do with the crappy seats and are related to pressure changes in flight.

I’ve known for a couple months now that my spine is visibly doing worse via the most recent CT scan. ¬†My L4/5 disc¬†(the one above my fusion) is bulging. ¬†I’ve had nerve issues related to that joint since surgery in January 2013 that I really hoped were temporary, but are getting worse. ¬†It wouldn’t surprise me if I was looking at another spinal fusion in a few years.

Because of this, I’m currently trying to sell my spot for ATS¬ģ General Skills & the¬†ATS¬ģ Homecoming: Return to the Mothership workshops. ¬†It hurts so much to do this as I feel like it’s the first solid nail in the coffin of my return to bellydance. ¬†In the back of my mind I felt like I could somehow outrun these issues, somehow return to the semi-pro level that I used to dance at. ¬†Perhaps I was just hoping that my demise would be happening this quickly, allowing me to go to San Francisco with two of my troupe mates to learn at the Mothership (the FatChanceBellyDance studio where¬†ATS¬ģ began and where I¬†began¬†ATS¬ģ).

I’m utterly heartbroken and I cry every time I think about not being able to go, but I logically know that there’s no way I could be able to handle the flight, sleep in an unfamiliar bed in a hotel, dance for 6 hours or more a day for about a week straight. ¬†Maybe if I wasn’t a poor grad student with awful medical bills scraping by, maybe I would risk it. ¬†The thing is that¬†ATS¬ģ is a group improv format of bellydance, and my spine causing me to sit at the sidelines of a workshop could negatively impact another dancer’s experience (especially in the duet workshop I signed up for). ¬†That’s not fair for whoever would be paired with me.

Despite this, I’m going to keep on bellydancing as much as I can. ¬†I’ll keep on doing¬†ATS¬ģ until my troupe mates kick me out for being too broken. ¬†I don’t know what kind of shot clock I’m on (I’ve known that there is a shot clock for a long while…some of the other Projekt posts talk about it), but I’m going to try to make the best of what I have. ¬†I’m constantly fighting between time, money, and spoons to make dancing happen, but I’m trying. ¬†I’m also trying to remind myself that I can still do other forms of dance, and I will be fundraising to get to the annual AXIS Dance summer intensive in August of 2015 (between taking my comps early summer and defending my dissertation proposal in late summer or early fall).

Right now I’m feeling really emotionally raw. ¬†I was hoping to get either my CONvergence 2014 post or my Flying with Wheels post finished before this, but I felt like I needed to make a more public declaration. ¬†Finances willing, I’m going to try to make the most out of regional dance events to make up for not being able to physically handle going back to the Mothership.

As my mom says, “it is what it is.”

End of the semester self-care list

It’s the end of the semester, so I’m incredibly busy between writing, last minute research-related stuff (ugh transcription), stats….and my usual healthwork schedule. ¬†I figured I would steal a few minutes to post and show what I’m trying to do for self-care so I don’t completely fry out (and maybe some of these things will help other people….that would be awesome). ¬†Hopefully this makes as much sense as I think it does!

  1. Eat. ¬†As much real food as possible. ¬†Seriously. ¬†This is the time of year where I eat really strangely. ¬†Part of this is because I tend to do a lot of writing in diners and restaurants (it’s an easy way to force myself to not tinker around on the internet when I should be working). ¬†The other side of this is I will forget to eat if I’m not writing in various eateries or coffee shops. ¬†I’ll find myself woozy (yay years of dieting screwing up my hunger signals…I go from “I’m a bit hungry” to “oh crap, I’m so nauseated”….not a helpful biological response, but that’s what my younger self taught my body to do and I get to pay the price for that). ¬†Not being properly nourished will keep a writer’s block firmly planted…because brains need fuel too!
  2. Take breaks! ¬†There’s a good amount of psychological research that shows that taking breaks can help keep your energy up and keep stress from overwhelming you (or keep anxiety from completely ruining any attempts at working….which is what happened to me this past weekend). ¬†I’m trying to use an app for my phone called Unfuck Your Habitat….it’s meant to help a person with household chores, but it has a 20/10 timer on there that I’m finding useful to force me to persevere when I’m having trouble and to not feel guilty about taking breaks.
  3. Sleep! ¬†Not sleeping will make it hard to concentrate and will really mess with your mental health. ¬†Not getting enough sleep will also impair your ability to eat properly as most people’s bodies will push you to eat comfort food (aka generally not good brain food). ¬†The last time I pulled an all-nighter I lived on cookies & cream ice cream (and I have a bit of a gluten intolerance, so this didn’t work out well).
  4. Get social time. ¬†This is one of the hardest things this time of year, but hear me out. ¬†This depends on the person, but for me this includes eating dinner with my partner, studying with other people, or checking social media during my enforced breaks (as per #2). ¬†I’m an introvert, but I notice that if I don’t get enough social time during this time of year, I feel particularly fried.
  5. Find time to have fun.  Again, this can be really hard, but giving yourself time to even play a game on your cell phone can really help with stress levels.  I have a few casual games of Words with Friends, Bookworm Heroes, and Evil Apples going on my phone for this reason.
  6. Get outside, at least briefly. ¬†I have a sleep disorder on top of everything on my broken body list, so this is really important for me. ¬†Make it more than just getting in and out of your car, waiting for public transport, or going from one academic building. ¬†Make it deliberate. ¬†Breathe in the air if it’s feasible (I live in pollen-land, so I know this isn’t always a good idea for folks), get a few rays of sun, listen mindfully to the birds/cars/yelling teenagers/etc. ¬†Make it a stop outside for the sole reason of being outside (if your health allows for it).

I hope this helps someone out there. ¬†I know that writing this down has helped me realize what self-care looks like when I need it the most (even when part of my brain is yelling at me that “there’s no TIME for ANY of that! ¬†Must do ALL THE THINGS!”). ¬†Not everyone’s self-care list will be the same, and that’s just fine. ¬†Feel free to comment below if your list differs or you think I may have missed something.