Some Goals for 2016

I meant to get this post up in December or at least a few weeks ago, but this post is a compliment to my post where I outlined what a typical good day looks like. I spend much of my time coordinating my care, resting, and working around my symptoms. I make weekly goals in my planner every week and then prioritize them, always making exercise number one no matter what else is going on that week. The rest of my goals usually involve phone calls, paperwork, appointments, etc. Thus, my life often feels like it boils down to constant management of my own health. I need a reminder to focus on life and my other goals.

I made this list in December and strategically left out my health-related goals because I’m trying to find a way to carve out a life, or a semblance of a life, outside of illness. I would say that the last few years, illness has controlled my life no matter how much I try to make it the other way around.  I like to believe I’m the captain navigating these rough waters, but often I’m really just the vessel plodding along in the storm. I have surrendered to the fact that illness is a constant source of chaos but it doesn’t mean I can’t at least attempt to make a life in conjunction with that chaos. This is what I’m telling myself at least.

My BFF Carrie Anne has an enviable Life List and she inspired me to make one a few years ago. It’s funny; I actually recently went back and looked at the one I made, which is from my pre-sick life, and I put things like “hike Yosmite’s Upper Falls,” “go whale watching,” and “publish more academic articles” on there. Uhhh….not quite. I’ll have to start from scratch at some point on it. 

But here are some goals I think I can manage this year:

1. Get Back to Creativity

Whatever your passion or skills, creating and the desire for self-expression are the essence of our humanity. I have always been artistic but I lost some of that creative spirit when I became an academic and while dealing with illness. I used to play music regularly, even getting paid gigs for weddings or at restaurants. I worked as a children’s illustrator for years at our local library. I was constantly creating and producing. This is my number one goal for this year: do something creative every day.

I’ve been playing my keyboard almost every day for a few months now so I’m on track with music. Even though I cannot perform right now (which was always my motivation to keep practicing), I’m working on learning and memorizing new material and trying to improve. I’m hoping to try to focus more on writing, finishing, and recording my own material. That’s at the top of my list for my creative goals.

I dream of getting back to painting and giving friends and family gifts of artwork regularly. I dream of sitting in my yard and drawing for 10 minutes at a time and taking breaks. Honestly, working as an artist for so many years put a damper on my desire to create my own artwork. As with all creative pursuits, it takes commitment to improve as an artist and develop skills. I have not been committed to painting for many years. But I still desire to do it more consistently.

I have some clear writing goals. I’m working on getting at least one blog post up a week, getting more writing published, and working toward writing my book. I got six posts up last month, so I’m already on my way toward reaching some of my writing goals.

2. Go Outside

I try to remember what pre-sick life was like and what I did every day in those years, and I would not describe myself as necessarily a home-body then. Yet, since I’m home-bound now, I don’t even leave the borders of my own home with any frequency. The boundaries of the world I inhabit now can be measured in mere feet. There is no literal or figurative horizon to look out to and build dreams on. My horizon is now internal.

We live in a duplex that has an enclosed yard and that was the main reason why I wanted to live here. I try to sit outside in our yard every day. It’s difficult during the warm months (which is most of the year here), but I try to time it right each day to get outside even just for a few minutes. I try to walk with my trekking poles regularly (I’ve had limited success with this in the last few months unfortunately). My goal this year is to get outside every day. 

Along with meditation, this is fundamental to my mental health and sense of well-being. Getting outside, even just sitting in our yard, helps me feel like I am part of the world and feel less trapped. I talk to my cats and the birds in our yard and watch the flowers bloom. It’s glorious.

3. Listen to more music

This is separate from number 1. Since I have to spend so much time resting, it’s a good opportunity to listen to music, yet I honestly spend much of my resting time either reading the news, watching documentaries, or staring off into space. I’ve been anxiously waiting for the full swing of the election season so I’m already spending too much focusing on it. I’m not very interested in football or baseball. The World Series or the Super Bowl are barely a blip on my radar. Politics is my sports.

But music gives me more joy than almost anything else, so I would like to disconnect more and just listen. Listen to all the new music from my favorite artists I haven’t listened to yet. Listen to some of my records I haven’t listened to in ages. Just listen.

4. Read more

I wrote a post a few weeks ago that listed the books I had finished in 2015. I finished 20 books but I’m aiming for 30-40 this year. I know I’ll likely never get back to the 50-70 I read when I was an academic but it will feel close enough.

5. See more of my friends and family

Even though I don’t get out much, I see some of my friends somewhat regularly. But I want to see more of them and see more of my family. The last few years have not been kind to my family and our relationships suffered significantly under the strain of my mom’s failing health. I have high hopes that we can start to move forward this year. I want to see more of my husband’s family too, especially my crazy nephews.

I’d love to be able to drive again. That would make a huge difference with being able to see family and friends more often. Hopefully at some point I can do that again.

6. Work on projects with husband

My husband is a builder and maker of things but the times I have participated in his projects have been slim to none. I have a gorgeous 1920s antique armoire that my mom saved for me that desperately needs to be refinished. It’s been sitting in our garage for three years and I can’t wait to see it back to its full glory. It’s a serious undertaking but husband is on board to help with it.

We have some other projects on the table. We ordered a flint-knapping kit last year and have been waiting for some warmer weather to practice making hand axes. We can party like its 10,000 BC and make some prehistoric tools. Sounds fantastic.

This could come in handy in the zombie apocalypse

7. Travel (i.e leave the house for things that are not appointment-related)

I sometimes think about what my life would look like if illness hadn’t taken it over. I’d still be a workaholic and spending much of my time working, but I’d also be playing music and travelling. I have always loved to travel. I honestly cannot remember the last time I left my town for something other than an appointment, even just to go to neighboring towns. One of my BFFs moved to the next town over a few years ago and I still haven’t seen her new place. My sister moved to the Bay Area a few years ago and I still haven’t been able to visit her there yet either. It’s just absurd.

I want to attempt to venture out this year. ‘Travel’ for me doesn’t mean I’m going to travel up the Pacific Northwest (though I’d give anything to do that again). It means going places that are nearby, even just a mile or two down the road, and the excursion NOT being appointment-related. I’m going to actually count any activity where I leave the house that isn’t for some kind appointment as “travelling.”

There are places I really want to go that are not that far from us but would take some serious planning to pull off, including having to stay overnight. I haven’t been to Yosemite in 3 years, which considering we used to go there multiple times a year, is desperately sad. I’d love to take a trip to Monterrey and go the aquarium. We both love the Foothills and had family in Sonora when we were growing up. Ultimately, our goal is to move there, but I’m hoping this year I could pull off a day trip there again. If I can start slowly working my way up to these things, maybe we could finally get back to thinking about our bigger travel plans like visiting my husband’s aunts in southern California again or finally making a trip to Yellowstone. Someday.

8. Meditate more

I had a great therapist when we lived in Nevada who had a background in mindfulness, and she helped me get back to meditating. I used to do a lot of yoga years ago and meditation was always part of that practice. I would like to consistently meditate again, preferably once a day. I have found that morning is the best time for me, and I have actually discovered that it helps to stabilize my heart rate and breathing. I usually wake up with my heart rate around 160 (thanks POTS) and struggling to breathe (thanks Myasthenia), but sitting and focusing on my breath helps to improve these symptoms that are usually the worst in the morning. But more than anything else, meditation offers benefits for mental health. For me, it has improved my anxiety significantly and helped my depression too. When I feel myself starting to spiral out of control mentally, I try to sit still for a few minutes and just focus on my breath. It really helps.

And just for fun, here are some big dreams and goals—some I’m actually working toward and some that are just crazy ideas I want to throw out to the universe:

1.      Finish my album of originals and sell it or make it free online

2.      Write a book (or two or three)

3.      Perform regularly again

4.      Start a non-profit that will help disabled chronically ill patients get access to important resources

5.      Travel to the UK

6.      Be able to drive to my friends/family’s house and be able to drive myself to local appointments

7.      Organize fundraiser events (for Dysautonomia, Myasthenia Gravis, and Alzheimer’s)

8.      Be able to teach in a classroom again (or any capacity really)

9.      Take freelance writing jobs

10.  Have a vegetable garden that I am able to maintain

11. Go camping

12.  Get an MFA or finish my PhD

13. Sell some of my artwork or give it away for free

I don’t know if I’ll accomplish any in this last list but these goals beckon to my soul for completion someday

I recommend making a list for yourself also, making sure to separate the health goals from your life goals. Even as I was writing this, I kept finding myself listing health-related desires. This was a good exercise to try to delineate my own desires from the health-related goals I’m working toward every day. We have to remember to live sometimes, even if much of that life has to be lived internally. There are still universes within each of us that deserve exploration.

Dreams Deferred, Dreams Discovered

What happens to a dream deferred? Does it disintegrate, never to be replaced?

Sometimes it’s transformed into something new.

About a week ago, it was my one year anniversary of having to stop working and leaving my dream job, a full time professor gig I had worked for many many years to achieve.

It feels like it’s been a few months and a lifetime at the same time. And so much has changed in that time. My condition has declined considerably and my independence has been steadily chipped away. I’ve also learned to make peace with my illness and the world around me in ways I was never able to before. The bad is always tempered with the good.

This is the longest I’ve ever gone without working since I was 15 and the first time I’m not beginning the academic year as a student or a teacher since I was 4. This is brand new territory. If someone had told me five years ago that this is where I would be right now, I would have thought it was pure fiction—the makings of a great book, but not reality.

I’ve been dreading this anniversary. I knew when I saw my friends and former colleagues talking about the beginning of the semester on social media that it would be painful. But the anniversary passed when I was bedridden for weeks so I was distracted by surviving to really be overwhelmed by it. There was an upside to that at least.

I never imagined not being able to work. I never imagined being in this position, but I knew it was a very strong possibility for some time. The health issues started in 2011 and it’s been a decline ever since, and when things really started to change and go downhill in 2013, I knew I was inching closer and closer to this point. I was on an impossible path: working a few months at a time and then having to go on medical leave, over and over. It wasn’t sustainable and I regret taking my health for granted. I always expected to snap back each time I hit the wall and get to where I was before. But each time I hit the wall, I never fully recovered to where I was. Until I hit the wall too many times...

I treat my health as sacred now. My body gives me no other option. I know some of you out there are living this too. I used to avoid reading stories about people who had to stop working. I would see the stories in the health communities I'm in and just skip over them, saying “Nope. There’s no way. There’s no way. That’s not me.”

Perhaps you don’t want to read this because you feel the same. But I want to tell you that you don’t have to be afraid. There is so much that is beyond our control and all we can do is keep up the good fight each day. Do the best you can and whatever the future holds, you can face it like a champ. You’ve survived this long so you can continue to survive. The future isn’t pre-determined.

Statistically, about 25% of people with POTS are unable to work. I'm not sure what the percentage is for Myasthenia Gravis or other conditions. Many of us who are too disabled to work are young (if mid-thirties still considered "young"). We’re at the age when typically you start building a career, planning for retirement, building a family. Too young to have to spend most of our time in doctor’s appointments, rolling the dice with new medications, getting lawyers to appeal for disability benefits, trying to live life from a bed/couch.

When your worst nightmare happens, you accept it and you find a path forward. You have to remember it’s not the end of the world.

The path forward is what I’m focusing on now. My life has changed considerably. Instead of focusing my energies on a career, planning syllabi, working through piles of student papers, reading new research, I spend most of my time managing symptoms now. I plan doctor’s appointments. I coordinate my care. I portion out my medication. I plan for med changes (there are always changes). I use my inhalers at the right time every day so I can breathe. I stick to a strict exercise routine. I read. I write. I play music. I play video games and watch sci fi tv with husband. I see friends and family sometimes. I see how fast I can go down aisles in my wheelchair (who wants to race me?). I sit quietly outside in my yard and ponder the universe. I sing to my cats. I’m trying to make a good life around my limitations. I’m making it work.

A friend gave me shark bag for my wheelchair, Looks badass, right?

I live honestly and truthfully now. I’m no longerliving a lie. My normal has changed and that’s ok. I have a comfy couch at least. 

There is some emotional baggage that comes with losing your career. I won’t deny that. I imagine San Francisco International Airport has less baggage than I do. So much of our identities are tied up in work, career, independence. It’s difficult to unravel that to find out who you are without it and what your purpose is. I’m still trying to figure out what my purpose is.

But I have used some resources and tools to work through the baggage, work through the grief, and find a path forward. Here are a few:

1. I see a therapist. Talking to friends and family is helpful but I can see many of those around me with care-fatigue, the on and on of illness is wearing them down too. Sometimes you can't go to your support network anymore and you need professional support. Dealing with illness is exhausting on all levels and working with a therapist can help you attain vital coping skills. I have worked with one off and on most of my life and I had a really great one for the last two years, until sadly he moved. Now I’m starting over with a new one, which is daunting. Until science can create teleportation technology so I could I see him still, those are the breaks.

2. There are a lot of books out there about how to cope with illness, mental health issues, and difficult transitions in life. I’m working on reviewing each book I read related to illness as suggestions for others going through the same thing. You can find reviews in the “Spoonie Reads” section.

3. You’re allowed to be sad, to wallow a bit, and even to give up sometimes. That’s completely allowed. Working through the chaos illness brings to your life is a process that takes time and patience. You don’t have to make it look easy. You just have to find a way to keep fighting, whatever it takes.

My policy is to never give up when anyone is looking and to always get myself together in time to face the next day. Every day has new possibilities. I’m grateful to have the chance to meet them. Whatever you have to tell yourself to keep going. If you focus on the unfairness of illness and count your disappointments each day, it’s difficult to move forward. There has to be a way forward.

4. Find new hobbies and interests within your limitations. As an academic, I never had time for hobbies. It is an all-consuming gig. I played music but even that became a job as I would play in restaurants and weddings, etc. I even worked as an artist doing children’s artwork for many years. A lot of my hobbies became jobs at some point, so now I’m trying to find some joy in them again for myself. I have other things I’m interested in now that I had no idea I had a passion for while I was working. Now I have time.

5. Use online communities to help you feel less alone. It is easy to feel like you are suffering on an island of pure absurdity when you have rarely diagnosed conditions. Often times, you never meet someone in person who also has your disease. The online communities help you feel less alone, yet I try to use them sparingly now. It can get easy to get sucked into these communities and end up even more frustrated. Take some time away to live life. It’s easy to let illness become your identity, but it doesn’t have to be.

6. Remember what you still have and what you can still do. Besides finally finding acceptance and living authentically, learning how to feel gratitude has been the greatest lesson I’ve learned since I stopped working. My whole life my brain is always saying “what’s next? Where am I headed next?” but now I’m trying to learn how to feel satisfied for once. I try to live in the moment more. I have an overwhelming sense of gratitude that I draw from for strength on most days.

Although my life is very limited, I still have so much. I have an amazing husband, my family is rebuilding our bonds and moving forward despite my mother’s continued decline, I still have my creativity and passion. I am able to finally live within my limitations. There’s still so much to be thankful for.

7. When your dreams are dashed, you also have to make new dreams. Pining for the old dreams that are outside of my physical limitations is a fool’s errand. That will only lead to frustration. So I’m really working on creating new dreams and new goals. Everything takes some adjustment and I’m a professional at adapting at this point. I should put that on my business cards.

When I left my job and finally started to work toward acceptance, I realized that my ultimate goal in life was to be able to live a good life within the limitations of my conditions—instead of constantly having to push myself past my limitations. Whatever that looks like, that’s my goal. Everything else must fit within the parameters of this goal.

The dream deferred can rise from the ashes to take flight again. It just needs some coaxing and some determination. In the next part of this post, I’ll discuss what dreams and goals I’m trying to work toward now. 

Finding Insignificance

I have mentioned before that I’ve become a bit obsessed with prehistory, particularly ancient Britain, since I had to leave my job almost a year ago. I’ve watched every documentary I can find and have been accumulating more and more books (the last thing I really need). If there is only one benefit to not being able to work and having to stop teaching, it is that I have time to finally indulge interests I’ve had for a long time. My husband has always been obsessed with prehistory so he is over the moon that I’ve finally come around.

As an academic and a teacher, I used to view every piece of knowledge I came across as an object to exploit and claim at some point. Everything I read, even just articles in magazines, I would think “how can I use this? What purpose can I find for this?” I focused so much of my energy on very small spans of history and the minutiae of over-specialization, always with the intention of using any knowledge I gained either in writing or in the classroom. 

I find it ironic that I only came to understand what “the life of the mind” really was when I got a break from the academic world. Now I know that this knowledge I’ve gained about prehistory will likely not have any purpose  except for feeding my curiosity, but having the time to fill my brain with information so far afield of what I usually invested my energies in has been a true gift. My body may be kind of broken but I at least still have my brain, well mostly at least.

This knowledge also gave me something else completely unexpected, and I think deep down this is at least partly what really draws me to understanding the narrative of human history we rarely read about and has no written record. It has helped me understand the long arc of time and the expansive human story—and ultimately the insignificance of my own experience. 

Suffering is an essential part of that human story, so my life and my suffering can be placed in a long chain of human stories that stretches back further than can be really be fathomed. I am not religious by any means but maybe a little spiritual. I have come to understand the draw of religion in some sense because of its ability to diminish personal suffering and offer comfort that there is somehow purpose to it. 

I never expected this knowledge to not just make my brain spin in curiosity but also to help me see my own experience of illness in a different light.

Here is a passage from Neil Oliver’s A History of Ancient Britain that discusses time as more infinite than we are equipped to perceive:

“In the life of planet Earth, the actions of individuals—warlords, politicians, farmers and the like
—are the twitches of ticks on an elephant’s back … Beneath everything is inertia, the tendency for nothing to happen. Above that is a motion so slow its currents and rhythms could be sensed only by an immortal with all the time in the universe. These the rhythms of geological time that move tectonic plates, raise mountains and transform mud into stone by the use only of pressure and time.

Fernand Braudel, leader of the Annales School after the Second World War developed this concept of the longue durée.—the long term. He imagined time like an ocean. On the surface are bubbles and flecks of foam that come and go in the blinking of an eye. These are the moments we humans can perceive, the actions of individuals and the stuff of years. The bubbles and flecks ride on waves that are like the lifespans of nations and empires, and the substance of centuries at least. Finally down in the dark are the great, impossibly slow ripples within the deep that support, and occasionally move, everything above.”

Ultimately, the human story is only a minor, forgettable side plot in the long, complex narrative of our planet and the universe. Now that is truly comforting in itself. Thinking about time and suffering in this infinite sense has helped me be mindful of not letting myself be consumed by the frustration and disappointment moment to moment and day to day. Suffering, struggle, chaos, and perseverance are fundamental to life. We persist and then we perish. This is our story.

It sounds strange that realizing the insignificance of your own experience is comforting, but when illness rips your worldview and identity from you, maybe it’s essential. I think the isolation of illness can really magnify a sense that you are alone in what you are experiencing; it definitely has for me. It's easy to feel that no one understands what you are going through. I have grasped at things to make meaning from this experience and to understand it, and somehow thinking about my life and this human story as a single note in a melody that has been building and playing indefinitely has helped and been a source of strength. Our experiences are insignificant and universal at the same time.

In some weird way it has worked for me. I guess you have to find meaning wherever you can. 

So if you ever want to discuss the latest theories about Stonehenge, watch Spinal Tap, swoon over BBC documentaries (which are miles ahead of American documentaries), I’m your girl. Someday I’m going to be well enough to travel and make a pilgrimage to the UK and finally cross it off my bucket list.

I am curious to know if any of you have also found knowledge, ideas, or hobbies that unexpectedly helped you cope with illness in some way. What has helped you?

The Next Round

It’s been a relatively quiet April on the health front, which I am so grateful for. I still had appointments almost every week but they were not necessarily related to diagnosis and treatment. I needed that break, and the universe gave me a win. I’m still filled with frustration about test results, the struggle to get a diagnosis, and the daily battle of managing a nebulous condition, but I’ve been able try to get to a better place this month, reorienting myself into a life that isn’t completely defined by being ill. Listening to the suffering and experience of others, trying to understand the historical civil unrest in my country, helping my family when I can, reading about prehistory, analyzing every detail of the results of the ancestry tests my husband and I did.  

But it's time to re-focus. I start the next round of appointments next week. I see my new local neurologist in two weeks, and I have an appointment Stanford on Tuesday and will finally see my neurologist there.

I’ve had that appointment for almost a year. I saw him last May, which feels like a lifetime ago. I had just finished my first year as a full time professor and it was the most brutal semester I’ve ever been through. I had to go on leave twice during the semester and my symptoms were worsening every day. I wasn’t using a wheelchair yet, but I needed to. I was struggling to drive and my independence was starting to slip away. 

I’m trying not to let the ghosts of that last appointment haunt this one. I left feeling like it was a great appointment but when I read his notes he mentioned that he discerned no walking difficulty and that I needed a “more positive outlook.”

I cried a little during that appointment. Life was pretty bleak at that moment. I didn’t get to say goodbye to some of my classes (again) because I was on leave, in my heart I knew that I was going to have to either radically change how I did my job or it was over, and the mysterious symptoms were only getting worse. Of course I was upset. I try to smile and keep a calm demeanor in appointments, otherwise you end up with notes about mental health and stress if your file, further invalidation. But I’m honestly getting to the point that I don’t care what they say. 

I spent a lot of years trying to justify and explain in appointments to get them to hear me. At this point, I don’t have the energy for that. Now I just try to present my symptoms and experiences and communicate effectively. These are my symptoms. Take it or leave it.

At that appointment a year ago, he explained that my mystery symptoms of weakness, difficulty walking, difficulty breathing, etc were not related to POTS. I had those symptoms for over a year at that point but I was still hoping they were related to POTS so I didn't have to get back on the hamster wheel of diagnosis. He gave me a list of tests he wanted me to do, and as I listened I knew those tests would take a very long time and that a diagnosis was at least a year off. At least. 

I started suddenly having mobility problems about two years ago and I told my primary doctor about it first. He took me seriously and said it was likely something else presenting itself. I refused to believe that at the time but I have told him since then that he was totally right. He figured that out before any other specialist. I really need to send him a fruit basket someday.

I saw him yesterday so that he could fill out my long term disability paperwork, and every time he sees me he asks, “did you finally get a diagnosis?” Nope. Together, we have been fine tuning innovative ways over the last few months to explain and label my symptoms for these forms without using a label that is unofficial, to the point that it becomes a humorous art. You have to laugh at the absurdity of it sometimes.

I don’t want to set myself up for disappointment, but I am hoping to finally get that label in these next appointments. Not just for the peace of mind but mainly because of the material benefits it offers: I could finally put it on my official paperwork, I can wave it in front of insurance companies who want to refuse treatment or deny benefits, and I can have access to other treatments options. If it is Myasthenia Gravis, I'll have a condition that sounds like a Harry Potter spell, so I'll feel pretty special.

I try to remember that a diagnosis is not the end game, a better quality of life is. But I can’t help wanting the diagnosis. It’s been the carrot I hold in front of myself as I’ve gone through all the torture testing for years. Yet, even with a diagnosis I know that my life wouldn’t change dramatically, but damn it would help. 

I’m doing my usual routine of carefully writing out symptoms, notes, and questions, and gathering test results to bring. Most of this has become second nature for me and my husband so it makes it easier to keep going, even when both of us are completely worn down by this process. We are staying in our favorite hotel again next week before my appointment. It’s pricey but I’m very much looking forward to that part. Sometimes it takes little things like this to make it easier, little rewards and treats along the way to make it a little more fun and enjoyable.

So this is what it looks like when you want to give up on this process but you continue to press on, trying to keep a “positive outlook,” keep digging deep for whatever pieces of hope you can find, and remember that you’ve come this far so you can keep beating on. It’s not easy, but it’s not impossible. That’s important to remember.

Whatever the results of the next appointments are, I’ll come home to my life with my cats, my husband, my music, my books, and it will be all good. I'm trying to remember that life will go on no matter what. I’ll keep working toward my goals, trying to create some art and music, write some words that have meaning, exercise as often as possible, and continue to feel grateful for this life and how lucky I really am. 

Routines and Goals: Resting Counts!

Being ill and unable to work means you spend your days lounging on the couch, watching intellectually-stimulating daytime tv, eating bonbons—enjoying a permanent vacation. Actually, it’s nothing like that.

Being able to sit on your couch indefinitely may seem like a dream lifestyle, but trust me, it gets old very quickly. I have acquired new skills like being able to recite dialogue verbatim from my favorite shows and memorizing data from every documentary about prehistory Britain. These are marketable skills, right?

Becoming home-bound was always one of my greatest fears, but last year I could see it coming closer and closer on the horizon. I always read stories of Spoonies who were home-bound and I thought “No way. No how. Not me. Never ever.” Alas, here we are. I often wondered how they managed it and what they did. I’m a workaholic and an over-achiever, and going from spending all of my energy working and thinking about “what’s next” to being home-bound has been a shock, though I am slowly getting accustomed to it. 

I am trying to adapt my habits, goals, and interests to this lifestyle. If I do not adapt them, I lose my sense of self and the sense that I am accomplishing anything. One of the biggest hurdles with adapting to being physically limited is adjusting your definition of success and productivity. You can keep your expectations too high and then live in constant frustration that you can't reach that bar (note: almost every post on this blog). Once you can learn to live a life within your physical means, then you can finally feel like you're making progress and contributing to the world again. There’s a learning curve with this and I’m still making the climb to the apex.

Making a routine and some goals is an effort to redefine my boundaries. When I was in school and working, I set goals in my planner every week. Now I’m setting goals to achieve what most people can do in their sleep, Sometimes molehills really are mountains, and that's ok. The key to making a routine and setting goals for the chronically ill is to make them specific enough to be achievable though nebulous enough to adjust to the chaos and interruption of illness. This is no small feat. I tried to create a routine based on what I know that I can achieve yet leave some wiggle room for the inevitable crashes that happen throughout the day:

-Wake up 8:30 or earlier

-8:30-9:30- eat breakfast and wake up, get all medication down (half to 1 spoon)

-9:30-10:30 exercise or meditate or walk (1-4 spoons)

-10:30-11:30 get ready and do some cleaning, rest (2-3 spoons)

-11:30-1:00 complete any medical business, eat lunch, rest (1 spoon)

-1:00-3:00 creativity time- write, play music, read, draw (2 spoons)

-3:00-4:00 keep going with creativity or clean, rest (1-2  spoons)

-4:00-7:00 spend time with husband, make dinner, rest (1-3 spoons)

-7:00-9:00- exercise if haven’t already, shower (2-4 spoons)

-9:00-11:30 watch documentaries or read and rest, meditate if haven’t already (half spoon)

This is still an idealized version of my daily routine. Often, I’ll get ready and try to clean a little and my energy is maxed out so I lie on my couch for an hour or more to recover, especially if I try to do something crazy like vacuum. My problem as a recovering workaholic is that I am always pushing myself way too hard, all day long. I included rest throughout as a reminder to sit and recover from each activity (otherwise, I’ll get to spend the day bed-ridden) and so that rest still counts as being productive. As I’m lying face down on the couch, I can still be kicking productivity’s ass. Honestly, not a day goes by that I don't think by the end it "Yep. I did way too much." It's a slow climb indeed.

I try to do most of the cleaning. I figure that is my contribution since I am not working, yet I have varying levels of success with it. I do some sort of physical activity every day, even if it’s just a short walk with my trekking poles. Exercise, for me, is the only way to get a return on investment for my spoons. Someday, if my body can reclaim a higher spoon allotment, I can add more to this routine. Something crazy like drive across town or go to a store. Big dreams.

I made some short-term and long-term goals. They include things I’ve been working toward already, things I have lost over the last year that I want to reclaim, and dreams I have yet to make happen:

Weekly goals: (make specific weekly goals in planner)

-Try to get at least one blog post up

-Practice at least 2 hours a week

-Try to finish one book a week

-Drive a little farther and farther every week

-Stationary bike 4 days a week, try to walk every day, do some physical therapy exercises most days

Monthly Goals:

-4 blog posts a month minimum

-Learn a new song and at least one new scale a month

-Complete one piece of artwork a month

-Learn at least one new recipe

-Read at least 3 books a month (depending on length)

-Be able to get on my stationary bike for longer (work toward more than 10 minutes)

-Try to do at least one major cleaning or organizing project 

-Start driving with some regularity again

-Plant some flowers and maintain garden

Long-Term Goals:

-Submit some blog writing to online publications

-Continue researching and start planning book
-Take an online teaching class

-Start regularly giving friends artwork

-Work toward performing again

-Re-learn the bass cleft and more complex chords and scales

-Be able to drive to my parents’ and friend’s houses again

-Be able to go to a store solo again

-Exercise at least 5 days a week

-Try trips to nearby places (hello Yosemite!)

-Walk past the yellow house and back with my trekking poles

I tried to break down these goals into manageable increments. I need to make a more specific exercise plan so I can keep track of all the physical therapy exercises. I’m trying to reintroduce some things I have been struggling with the last few months (playing music, driving, leaving the house). I haven’t been able to travel anywhere besides for appointments in an unmentionable amount of time. That’s one of my biggest dreams. That and performing again.

Even if I am not able to stick to my routine and don’t attain all of my goals, I at least can feel like I am working toward something tangible again. I didn’t include any medical stuff in this list because I’m carving out some kind of identity outside of that insanity.

Even as many of us are living the dream of spending a good portion of our time horizontal and semi-conscious, I think it’s still valuable to hold onto our passions and goals. Illness will take much from you but it doesn’t have to take everything. I hope this is helpful to anyone out there, especially to those who are also home-bound or physically limited.

And guess what? I’ve already met some of my goals: I have hit 10 minutes a few times on my stationary bike, I’ve gotten a blog post up every week this month, and I planted my daffodil bulbs, (with husband’s help but it still counts). Bam! 

These little flower nubbins make me ridiculously happy

I hope you are reaching your goals despite your own battles :)

Keep up the good fight,

Stefani