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 

The Spoon Theory

You might be wondering why I am talking about utensils in this post, but in the chronic illness community, there is often much discussion related to spoons and not because we all have a strange affinity for cutlery. 

For the chronically ill, it is a battle to perform all the necessary daily tasks (and maybe even some tasks you want to do) within the confines of our limited energy and physical strength. The only way I can describe this to the non-chronically ill is to imagine the worst flu or illness you’ve ever had. You’re sick in bed, exhausted, in pain, you can’t stray too far from a bathroom, yet you are supposed to complete all your typical daily tasks (such as going to work, taking care of children, going to the grocery store, etc). Yet, even accomplishing one of these things is impossible. So even for those who are healthy, you’ve experienced what it’s like to live with limited spoons. 

For the chronically ill, this is what your day to day life is like except it will (for many of us) never go away. Postponing important things until you are flu-free and back to full health isn’t possible. “Spoons” are a metaphor for the limited energy those with chronic illness have and the decisions one has to make to “spend” them, often involving hard choices. Christine Miserandino created this metaphor while describing what her life with Lupus is like to a friend, and you can find her story here. She showed her friend 12 spoons and detailed how to spend them wisely to manage illness and disability while trying to live a full life. Often, six spoons may be needed to manage symptoms a day so six are available to complete daily tasks. The chronically ill and disabled have to choose wisely how to spend those spoons. If you use more than your allotted spoons, you pay for it by losing spoons the days after.

This metaphor has become essential for those who are ill and even those who aren’t to understand the struggles and triumphs of managing illness while trying to live. Like most self-defined labels, “Spoonie” is a term claimed by many as a form of empowerment, understanding, and self-expression. The term connotes a sense of pride and a sense of community. When I tell my husband “I’m out of spoons,” he knows exactly what I mean (though he often tells me “why don’t they say batteries instead of spoons?” he still gets it). Whether you are chronically ill or not, anyone can be initiated with this metaphor. 

This last week for me was a good example of how I live with limited spoons. Miserandino described 12 spoons, but over the last six months as the likely-though-unofficially-diagnosed Myasthenia Gravis combined with POTS is making me often immobile and barely able to leave my couch or bed, I’ve been living with 3-4 spoons a day. It's not enough to do the things I have to do (showering, getting dressed, eating, etc) and the things I should do (clean and exercise). This doesn't include the things I really want to do (play music, leave the house, see friends and family, cook, bake, paint, skydive). Ok, skydiving is not a goal but I like to dream.

Is it possible to get more spoons? Exercise, for me at least, is the only thing that gives me a return on investment for spoons. Deconditioning and exercise intolerance are very common for POTS and MG, but it is important to maintain strength and stamina. I’m a former athlete and have always been active, and exercise has often been more beneficial to me than any medication I’ve ever taken. I reserve spoons for it. I'm also supposed to be doing physical therapy right now, which requires at least 2 spoons.

So I have to choose very wisely. A few months ago, I told my husband I wanted to bake something so he asked me to make some ranger cookies. Since life isn’t worth living without chocolate, I found a recipe that included some. He bought me some ingredients and I printed the recipe.  I wanted to do this for him since he is a fantastic caregiver and I rarely get to do things for him. 

Those ingredients sat in the bag in my kitchen for two months because I couldn’t muster the energy to make them. This week, finally baking them was one of my goals. I saved some spoons and made them (while sitting of course). Having Dysautonomia means you and gravity are frenemies now. But you can be fabulous and cook, bake, teach, sing, anything else while sitting. Although I had to lie on my couch in between batches to recover, I felt badass and accomplished, and he loved them. I overspent on spoons but it was worth it. A crunchy, chocolate-y success.

Husband-approved cookies. Yes, the beard is real

I mentioned in a post last week that I was supposed to go to Stanford this week for an important test (a single fiber EMG) so I could finally get a likely diagnosis for Myasthenia Gravis. I can barely leave the house at all right now so traveling 2.5 hours each way for this trip was going to be a massive endeavor, even with my husband’s help. A trip like this could take 15 spoons, especially since my reward for getting there involves being stabbed with a needle repeatedly. I booked us a hotel to make it a two day trip to make it more manageable. I also had to stop taking the Mestonin I recently started taking (a drug that treats MG and has been used off-label to treat POTS) for this test. I’ve been having difficulty breathing for some time, but along with other symptoms, it has been worsening over the last few months. I’m taking a miniscule dose of Mestonin but it is doing wonders for my breathing issues already. 

When I stopped taking it, the breathing problems returned full force. Not being able to take this medication cut into my 3-spoon-a-day allotment. As soon as I opened my eyes on the day we had to leave, I knew it was going to be a 1-2 spoon kind of day. I was in trouble. I tried to lie in bed for hours before we had to go. We put off leaving as long as possible, but when it was time I knew there was no way. The glorious effects of the Mestonin had worn off and I was looking at having 0 spoons on a long day of traveling. 

The test is rescheduled for a month from now and I’m crossing my fingers I can gather enough spoons to get there. Maybe I'll start a kickstarter campaign for people to donate spoons.

These are examples of the difficult choices and constant measuring of cost to benefit ratios Spoonies have to make. I have been living with POTS for years now, but I’m still learning how to live within my capabilities and limitations. There’s a learning curve with chronic illness. I rejected my limitations and fought against them, but I’ve paid dearly for that folly. The spoon theory has helped me understand that I have to live a life I am physically able to live, not the ideal one I would rather be living. 

Living within your spoon allotment lets you live a fuller, authentic life. I recommend explaining this metaphor to those close to you so they understand that despite your limitations, you are doing the best you can. Forks, knives, spoons, whatever, we’re chronic illness warriors, living bravely and with dignity. Use your spoons to live the fullest life possible.

A Spoonie created a choose-your-own adventure game based on the spoon theory that I highly recommend, especially for non-Spoonies, to understand what it's like to live with chronic illness. You can find it here