Dear Body: Please Forgive My Transgressions

It happened again. Just as I was starting to recover—ready to grasp a bright spot—I make more mistakes and go back to where I started.

Stuck in this cycle of slight improvement, push just a little too hard, then end up back at the beginning. Trying to reclaim that moment of improvement. Over and over.

I push you body to exercise when you can’t. I make you walk when paralysis has overtaken your limbs. I have treated you as the enemy for years when we were always a team. Always.

Sometimes I just get so tired, so frustrated, so angry at the ever-increasing limitations. So tired of being shackled under the weight of illness. Then I over-step, ask for too much, push too hard.

I ask for forgiveness.

I tried to have fun with my nephew a few days ago. I tried to play for just a few minutes. 

But you can’t do that anymore. That's no longer within the parameters of your abilities.

I was bedridden for hours and couldn’t walk the next day. I have struggled to leave my bed and couch since. I don’t want my nephews, my family, my friends to remember me as a lump on the couch—someone who asks others what they’re doing, who listens to other people’s dreams and aspirations, who rarely leaves the circumference of a room. I don’t want this.

So I push myself too hard every day. I ask too much every day.

When I rail against my fate and make questionable decisions in protest of illness, you remind me that my limitations are serious. The consequences are real. My breath leaves, my limbs no longer move, any hope of verticality is dashed. Crash so hard and so deep that swimming to surface is impossible.

Only rest. 

I rest in penance.

I ask that we try again. One more time. I’ll listen to what you tell me. I’ll ask no more than you can give. I’ll treat my limitations as sacred.

Because when we’re a team, we can do great things.

You give me energy to play music—to get lost in a melody for a short time, to improvise and roam in the geometry of sound. It is in those moments that I am truly free.

You give me enough energy to go outside sometimes and walk a few feet or look at the flowers growing in my yard. In those moments, I feel like I’m a member of the world again.

So we start over, start the cycle again, and maybe this time I learn from my past mistakes and press forward enlightened and wiser.

Ready to try again. 

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