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
-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
-Submit some blog writing to online publications
-Continue researching and start planning book
-Take an online teaching class
-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,