Wednesday, November 26, 2014

Surviving the Holidays

 A sense of panic starts to awaken around October, as Christmas decorations start furtively replacing Halloween decorations and the realization that the holidays are upon us. When you are chronically ill, the holidays offer added stress and panic. In the online communities I’m part of, I have already noticed the anxiety levels increasing with questions like “How will I prepare a meal?” “How do I get my house ready for guests?” “What do I talk about?” etc. My anxiety about the holidays started in September. Spoonies are great at finding solutions in difficult situations. We’re professional survivors, so I think it’s safe to say that we can find solutions during the holidays as well.

Holiday gatherings and parties are taxing for anyone, but for Spoonies they are especially challenging. For me, this year will be different. I’m not working and I have become home-bound. I have been able to do less and less over the years, but this year will be all about survival. My biggest concern is the New Year’s Eve party my husband and I always have at my parents’ house every year. Throwing a party is out of the question for me at the moment so my husband will have to do most of the work unfortunately, which he understands. Sometimes, this is reality. My goal is to be able to show up for the holiday gatherings and this party. If I can accomplish that, I’ll be over the moon.

Here are some suggestions to consider for the holidays and I would love to hear if you have other suggestions:

1.  Plan Ahead
I’m sure many of you are like me: I have a very careful plan whenever I leave the house and I try to prepare for all contingencies. This may mean bringing medication, mobility aids, fluids, etc with you.  If you are going to a friend or family member’s house, you may need to discuss your needs with the host or your family members. You may need extra care during a gathering but no one will know this unless you communicate it.

Maybe you’ll have to break up your preparations over a few days because you know that trying to do it all in one day will mean you can’t enjoy yourself or you’ll end up bed-ridden. You can even make a list or a plan for yourself if that helps.

If you have to travel, have your emergency supplies on hand with you. I have a giant purse that has water, salt, meds, and protein in it at all times. Prepare for the worst and hope for the best. You know how many spoons you have so conserve and use them judiciously.

If you are spending the holiday alone, as Spoonies must do sometimes, prepare to have a restful and enjoyable day. Do something for yourself and know that spending time alone means you can celebrate on your own terms and manage your health without extra stress or pressure.

2.  “What do I say?”: Listen
I saw someone mention this and I often ask myself the same question. I’m not working, I only leave the house for appointments, I spend most of my time managing symptoms, and I’m re-watching Downton Abbey for the thousandth time. What do I have to discuss with anyone? Sometimes illness can be the elephant in the room when you are with friends and family, but it does not have to be a focal point. You only have to discuss whatever you feel comfortable with.

Although some Spoonies do not have a vibrant external life, this often strengthens a person’s internal life. Whenever I think of this exchange, I think of Emily Dickinson. We still have much to share.

It can be difficult to not feel sad or even resentful when you hear others discuss working, traveling, or exciting social lives, but holding to this negativity will never lead to happiness. These feelings can take us out of the present and make us feel worse about our quality of life. I have found a lot of joy in just listening to others discuss what they are doing and living through those experiences vicariously. I think illness has given me the gift of being a better listener and living more in the present. This can make you more compassionate as well. Share your ideas and thoughts and enjoy listening.

3. Ask for Help
This reiterates the first point. If you know that an activity or condition will sink you, ask for help. Maybe you’ll have to delegate cleaning or cooking. Maybe you’ll have to explain your dietary needs. Asking for help is anathema to my nature, but I’ve learned the hard way that every time I didn’t ask for help when I should have, I ended up not succeeding.

Don’t set yourself up for failure. You know more than anyone else what you are capable of and your limitations so communicate this. Hopefully you have people in your life you can rely on and trust so you can communicate that this time of year is especially challenging because they may not know this.

I have a very specific diet, so sometimes I bring my own food or eat before a gathering. Maybe you’ll need to bring a chair to sit in. Do whatever you have to do. It’s easy to ignore our own needs to maintain the appearance of functionality or to not create distraction, but your self-preservation is the utmost importance. Going to parties and being part of celebrations is a rare treat for many Spoonies, so do whatever you have to do to enjoy it.

I’ll be bringing a blanket to our NYE party so that I can lie down in one of my parents’ rooms throughout the party because I won’t make it otherwise. I’m also going to adjust my medication schedule and hydrate all week to see if I can last for a few hours. I’ll put on a smile and do my best to enjoy it.

4.  Celebrate
Maybe the overwhelming stress, the sight of singing Santas, and having to hear Paul McCartney’s “Simply Having a Wonderful Christmas Time” one more time is putting you over the edge, but it’s easy to lose sight of the fact that this is a time to celebrate. Find something to celebrate, whether it’s spending time with friends and family, cheating by eating food you normally wouldn’t allow yourself to eat, or getting to wear something sparkly. Carve out some celebration and enjoyment for yourself.

I thought the last two years were difficult, but this year was the most difficult year health-wise for me by far, but I feel like a warrior for surviving it. I know that I can continue to survive it. That’s worthy of celebrating.

Even if you don’t have anyone or many to celebrate with, celebrate yourself. If you can't go to a gathering, you can celebrate on your own terms. You made it through another year of battling illness with dignity and grace. Your strength is worth celebrating!

I wish you symptom-free days, chocolate, and lots of joy for your holidays. How are you going to enjoy yourself despite your illness?

Friday, November 21, 2014

10 Songs

I’ve written before that as illness consumes your life and your body, it often feels as if your identity and your worldview is violently washed away. There are positive and negative implications of this. The negatives are obvious. I read stories of Spoonies who have lost their careers, their spouses, their financial security, their friends, their passions, and even some who became homeless. It’s difficult not to feel like your sense of self is under assault. 

Yet, battling illness and disability provides gifts as well. It becomes an opportunity to discover a truer self, one that has faced the Gorgon and survived. You’ll never know who you really are until your worst nightmare becomes reality. You’re given an opportunity to create meaningful new relationships and to strengthen existing ones.

Illness also makes you cling tighter to your passions. Your passions can link all the many versions of yourself through the years and serve as a reminder of your gifts and contributions to the world. They can provide some certainty and a tangible source of equanimity and strength to weather the chaos of illness. I read stories of Spoonies who are artists, cooks, crafters, etc. Illness forces you to slow down, and this can be opportunity to delve into whatever passion you have. 

A few years ago, my husband gave me a challenge: create a mix cd of your 10 most favorite songs. He created his right away, but I’ve been thinking about mine for years now. I’m a musician and songwriter, and music is probably more important to me than almost anything else. I finally finished my list and it’s been a means to celebrate life experiences, since getting ill and before. 

Tori Amos, “Liquid Diamonds”
The album this song is from is almost 20 years old at this point, but my reverence to this song has never subsided. Like most Tori Amos fans, I’m obsessed with her music. Her catalog includes hundreds of songs and I know them all. She is the reason I became a musician. This song has a quiet ferocity that pulls me in, under the waves of all the water imagery. It's the jazziest song she's ever done. I've seen her live a few times and was supposed to see her a few months ago. I was too ill to make it but my best friend went, and I got to live it through her. 

Nat ‘King’ Cole, “There is No Greater Love”
Well, I owe my desire to become a musician to this guy too. I like to wrap myself in his velvet voice. He has taught me everything I know about how to play standards and improvising. Not many know he was also a brilliant pianist and organist, though he was marketed as a vocalist. He’s been one of my favorite artists even before I was a teenager. This is my favorite song off my favorite Nat Cole record.

Led Zeppelin, “Stairway to Heaven” BBC Sessions
I’m serious about Led Zeppelin. I mean really serious. They aren’t my favorite band; they are my religion. Stairway is not my favorite Zeppelin song but this version is just perfection. Page’s solo is transcendent. My husband introduced me to them, and our wedding ceremony was all Zeppelin. My husband also loves them and whenever we travel, especially when would go hiking, we would listen to Zeppelin. There are so many great memories that unfurl when I listen to their music.

Miles Davis, “All Blues”
I have so much admiration for Miles Davis. He was the ultimate innovator and so many genres of music owe him a huge debt, not just jazz. I have every note of his album Kind of Blue memorized, especially this one. I listened to his music often when I was studying in my undergrad and in grad school. I especially love Bill Evans' solo in this one.

Jeff Buckley, “Lover, You Should’ve Come Over”
I like artists with prodigal talent who treat any form and genre of music as material to claim and transform. Buckley was a brilliant songwriter, musician, and a fantastic cover artist. I’ve been listening to this song for 20 years, and I can play it as well. I’ve performed it a few times, but no one can really match Buckley’s vocal range. 

Nina Simone “Black is the Color of My True Love’s Hair”
Nina Simone could play anything. Like Buckley, she claimed any genre of music and blended them seamlessly. This song is like lightening on my spine. She was primarily a classical musician, but she melded folk, jazz, blues, classical so well. One of my favorite albums is her version of folk songs from all over the world. She could do anything. I got to present a paper on Simone at an academic conference, and I performed her song "Four Women" at a production of The Vagina Monologues. Her music has been an integral part of my life for so long. 

Dave Matthews “One Sweet World”
Before my husband and I got together, we used to talk to each other online. A mutual friend connected us. We would talk on ICQ, and if you weren’t using the internet in 2000, you probably won’t know what that is. It’s proto-social networking. It was so long ago, that we would discuss what music we were downloading on Napster. At this point, you could say we grew up during the Stone Ages of the internet. He sent me this song one night. I’m a sucker for good songwriting and Dave Matthews can write a song. His band masquerades as a pop group, but they blend jazz and world music in as well. This is a love song to mother earth. It’s my husband’s favorite DMB song too. 

Kate Bush, “Running Up that Hill”
There are many reasons why I love this song that include the complex questions it asks about gender and that despite the dated synths and drum machines, it still sounds fresh over 30 years later. I bought Hounds of Love on vinyl when I first got a record player and have been listening to it for almost 20 years. It might be the most-played vinyl record I own. I don't know what planet Kate Bush is from, but I want to go to there.

Norah Jones, “Something is Calling You”
This was recorded before her blockbuster first album, and I think her earlier recordings are better than that album. I love this little song. Like Simone and Buckley, she has knack for seamlessly blending many genres of music. I'm not sure everyone has figured out she is really a country artist more than anything else. When my parents had a boat, we would fish all day and I’d play a Norah Jones mix cd on the radio. This song is a lazy summer day, fishing and hanging out with my parents and husband. Pure bliss.

Sting “Why Should I Cry for You” Live in Berlin
Like I said, I’m a sucker for good songwriting. I’m not a very good hipster when I love music that is so mainstream, but I have always loved Sting’s intellectual pop songwriting and his musicality. This song has gotten me through the hardest times this year. I would listen to it on repeat and when I was struggling to drive to work and when I was sitting in my yard thinking about life, accepting the difficult cards I had been handed.  He wrote it for his father, and his story about him moves me to tears.

Sam Cooke, “A Change is Gonna Come”
I don’t like rules so there’s one more. When my sister and I were young, my father would take us to the Sacramento Delta to cruise around on his friend’s boat. Apparently, I have a lot of boat-related memories. When I think of those memories, Sam Cooke is always playing. I really believe Sam Cooke's voice has healing powers.This song has also gotten me through the difficult times this year. I know a change is gonna come.

This was a self-indulgent exercise but a good, positive one. I recommend this to anyone: create a list for yourself of whatever your passion is: movies, music, tv shows, sports, books, life memories, anything. For the Spoonies out there, I think it's useful to do positive exercises like this to draw ourselves out of the fog of illness. It will remind you of who you are, what matters most to you, and let you reminisce and celebrate your life.  

Thursday, November 20, 2014

Today, I Refuse

Today, I refuse to accept that it’s gotten to this point

I refuse to accept that I will not be able to leave my couch or bed for longer than a minute or two

I refuse to accept that I am unable to drive and am losing my independence

I refuse to accept the crushing fatigue

I refuse to accept the medication I take makes me worse as it makes me better
I refuse to accept I can’t work

I refuse to accept the diminishing participation in my passions and hobbies

I refuse to accept I can’t walk more than a few feet without aid

I refuse to accept that any form of exercise is so difficult

I refuse to accept my body getting weaker every day

I refuse to accept the cost of illness my husband and family also have to bear

I refuse to accept there’s no cure or real treatment for my conditions

I refuse to accept my difficulty to show up to appointments and medical tests

I refuse to accept that no matter how hard I try to do everything right, I've only been getting worse 

I refuse to accept the powerlessness

I refuse to accept my body as an unwilling participant in my life

But tomorrow, I’ll wake up and I will try to accept again

Because acceptance makes tomorrow bearable

Acceptance is liberation

Acceptance is healing

Today, I refuse

Tomorrow promises a fresh start to try again

Monday, November 17, 2014

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

Tuesday, November 11, 2014

Thank You

I'm a little early for the season of being thankful, but I wanted to mark something important: My blog recently hit 10,000 views! 

I didn’t expect that to happen for a long time or maybe ever. It took a long time before I even cracked 1000. I just wanted to say thank you to anyone who has read or commented on this blog. I started this blog in February of this year, and I didn’t know what to expect. One of my life goals is to write a book about the bizarre health adventure I’ve been on the last few years, but this is a daunting goal right now so I thought a blog would be a little more manageable.

Writing has given me something to focus on as the chaos of illness was taking over my life during the last year, and it’s been cathartic and transformative. It's helping me feel productive as I am not able to work. Through this blog, I have been able to connect with people who inspire me, and it has helped me feel like I am part of a community. It’s been a real gift.

The purpose of this blog was not an exercise in narcissism or to unleash my crazy into the digital ether (although it is out there now); my goal was to make sense of this strange ride and then make it useful for others. 

I contemplated abandoning writing this a few times this year as life became overwhelming or when I felt like I was just a prating fool, but I knew I had more to say. I’m thankful I didn’t give up and thankful people have found value in it. I'm working on more posts and even submitting some writing. Wider venues offer opportunities to raise awareness about rare conditions and the often invisible battle of chronic illness.

I figured I would take the plunge and make a Facebook page for the blog, which you can find here.

Thank you for reading, for inspiring me, and for showing me how to be a warrior. Whoever you are and wherever you are, keep up the dream alive and know you aren’t alone in whatever battle you are fighting.

From my couch to yours :)