Learning to Breathe Again

I wrote in my last post that I was coming out of a rough patch. I’m still working my way out of it. I’m recovering from a sinus infection and things continue to get worse and worse with my family situation. But I’m working on getting my groove back. I’m working on getting back to my goal of posting at least once a week.

I’m working on showing up to appointments again too. I haven’t been to physical therapy in almost two months and the irony is, I have to rebuild my strength so I can go there and rebuild my strength. This week, I’ve been able to spend less time in bed and more time in my yard. The rest of the country is under a deep freeze and here in California, we’re worried that summer is coming way too soon. I want summer, and the brutal heat that comes with it, to take its sweet time.

I did manage to show up to an appointment a few weeks ago for pulmonary function testing. I mentioned before that I was going to do pulmonary function testing because I have this annoying problem of not being able to breathe. I’ve had difficulty breathing since the POTS started in 2011 but along with many of my other symptoms, it has worsened considerably over the last 10 months. I often wake up in the middle of the night or in the morning not breathing. I started taking Mestinon and that helps, but it hasn’t solved the problem. Thank god for this canned oxygen I bought on Amazon. It really does this trick, and especially kills the brutal chest pains that come with the difficulty breathing.

The test is called a spirometry test, and it proved, finally, that I am having trouble breathing. My neurologist suggested it to see if I maybe, possibly, probably have Myasthenia Gravis. I usually get a picture taken during tests so I can show what it looks like, but this test was over relatively quickly so you just have to imagine me sitting in my wheelchair, breathing hard into a tube, and trying to look fabulous.

I had to inhale and exhale quickly into a tube and try not to pass out. I had to do that a few times. The last one I did, I guess my brain started turning off. Once I stopped huffing my lungs out into the tube, I looked up to see my husband and the nurse wide-eyed and ready to catch me. They asked if I was ok, and I was fine. I wanted to say, “is that all you got? What’s next?” It wasn’t pleasant but it was over pretty quickly, and no one had to catch me. 

I got a copy of the results and faxed them to my neurologist. I didn’t expect him to make any comment or finally provide a diagnosis, and he didn’t. I get to add to my perennial growing list of specialists and see a pulmonologist now. I’ve always assumed the breathing problem was related to POTS and the maybe-probably-Myasthenia, but my primary doctor mentioned that perhaps it could be something else. That’s not something I’m ready to wrap my brain around.

The best part was when I looked at the results again a few weeks later and saw something I didn’t see before: A line that said “Patient’s lung age: 76.” I showed it to my husband and we had a good laugh. I guess I finally have proof that I really am young on the outside and old on the inside, like a really good fine wine or a Twinkie that’s been in a drawer for years.

It's nice to show up. The stress of the last few months has seriously affected my health and contributed to being bed-ridden for weeks. I’m relatively resilient but my body is a delicate flower. It doesn’t take much to make everything start shutting down, especially the breathing problems. I’m working on removing myself from stressful situations, staying positive, and trying to stay well. It feels selfish in some ways, but more than anything, I have to survive. I have to be able to get out of bed every day.

Being ill is a full time job that takes immense daily effort. You have to eat the right things, take the right pills at the right times, exercise enough but don’t overdo it, keep up with appointments and testing and communicating with doctors, managing symptoms, resting, and try to keep enough energy for loved ones and for yourself. Those weeks I was bedridden I got incredibly behind. I’ve written before how beneficial mindfulness is and I’m really cultivating that practice and I’ve been meditating almost every day, focusing on living in the present, breathing, and appreciating the gifts of life.

I can’t remember the last time I went out in public, but last weekend I convinced my husband to take me to the consignment store that is just down the street from where we live, one of my favorite local stores. I grabbed my walker and as soon as I walked in I saw it: a gorgeous, vintage baby grand piano. Our eyes met from across the room, and it was love. I parked the walker and never even looked at the rest of the store. I played that piano as long as I could until my energy ran out, and my wonderful husband waited patiently until I was done. I’ve been thinking about that piano every day since. I need to come up with $5k to buy it. That moment filled my heart with so much happiness that it washed away the trauma and stress of the last few weeks for awhile. It was glorious. Next time I go, I’m going to try to get a video of me playing it and I’ll share it here or on the Facebook page.

I had big plans for 2015, hoping I could navigate the chaos of life a little more, but it’s been a very rough ride so far. I still always have faith in a better tomorrow and believe that you have to wake up every day, stand strong (wearing your compression stockings), and face whatever may come. Life may knock you down and take your breath away, but remember all the times you were able to get up before that. You’ll get up again. You’ll get up every time.

Standing strong, with a little help

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