Wednesday, December 10, 2014


If you are an adult living in the modern world, you know that stress is a bitch. It’s also an essential, inescapable part of life. Often it is our response to and perception of situations that determines our stress levels. You may think you’ve mastered strategies to tackle stress in life, and then chronic illness throws you a curve ball.

Illness causes an immense amount of chaos in your life. It is an unpredictable beast. The key is managing the stress this causes because stress will aggravate illness. Most patients with Dysautonomia and other illnesses are sensitive to medications so anxiety treatment often needs to be in a non-pill form. We need other strategies to manage the anxiety that comes with illness.

When I got ill and left grad school, I started seeing a therapist who happened to have a background in mindfulness. I am incredibly thankful that our paths crossed and she introduced mindfulness practice into my life. Mindfulness is useful for anyone and especially for those who are ill.

I promise I am not trying to drop some New Age-y nonsense on you or start selling you crystals or ask you to join a yoga cult. This is a simple technique that has given me much relief so I wanted to share it. Mindfulness essentially means training the mind to concentrate on the present by focusing on the breath and the physical body and surroundings. Psychology Today defines it as “a state of active, open attention on the present. When you're mindful, you observe your thoughts and feelings from a distance, without judging them good or bad. Instead of letting your life pass you by, mindfulness means living in the moment and awakening to experience.” You do not have to be a Buddhist or ascribe to any religion to enjoy the benefits of this practice, but mindfulness and faith can go hand in hand if that works for you. Prayer is essentially a mindfulness practice.

There are many avenues to achieve mindfulness, and it is a practice I have been working on the last few years. Meditation is probably the most obvious form of mindfulness but it isn’t the only form. If you’ve never meditated before, it might be strange to try it for the first time, but it’s easier than you think. There are quite a few free apps you can download to get started. Headspace is a popular one. There’s also Calm.  You can also find videos on Youtube. Search for “guided meditation” or “guided visualization” and see if you find one that sounds beneficial, such as this one. You can also find meditation music on Youtube as well.

What I like about meditation is you can make it your own, such as connecting it to your faith or finding a regimen that works for you. My therapist wanted me to meditate every morning and evening but that can be a tall order so my goal is to meditate at least once a day. I like morning or just before bed the best. The most difficult part may be carving out some time for yourself without interruption.

My routine goes like this: I usually start sitting with legs crossed but I have too much weakness and neck pain to sit for too long so I eventually lie down. I do a 20 count of deep breaths, speaking one word in my head when I exhale, such as “rest” or “calm.” Sometimes I focus on a visualization such as lying on a beach and imagining the tide washing over me and washing away the tension and anxiety with it. Often, I imagine floating among the stars.  I think about the energy of the world around me and the mysteries of the universe. It helps me escape my physical body and feel connected to something larger, especially as often feel isolated from humanity. It’s a chance to feel free of that pesky mind-body dualism. I might speak a mantra in my head such as “I trust my body. I feel strong. I feel connected.” I try to do a minimum of 15 minutes but a half hour would be ideal.

There are also books to help you find your own mindfulness practice. A great place to start is Toni Bernhard’s How To Be Sick: A Buddhist-Inspired GuideFor the Chronically Ill and Their Caregivers. She offers suggestions specifically designed for the chronically ill and she even has POTS as well. I particularly like her suggestions about learning how to be compassionate for yourself and your struggling body and learning how to find joy in others’ joy.

You don’t have to meditate to practice mindfulness. Simple activities we do every day such as cleaning, cooking, reading, writing, drawing, playing music are ultimately mindfulness tasks. They are an opportunity to live in the present moment without thinking about the past or future and just focus on a task or creativity. When I am able to play music and I’m in the middle of a song, I feel truly free. I can let go of the physical symptoms and just ride the wave of the music until the end.

When you realize that these activities are opportunities for mindfulness, you can really embrace them and enjoy those moments, even if they seem mundane. If you can do these tasks despite pain or fatigue, it may be an opportunity to focus on the simple intricacies of the routine and let go of focusing on the physical symptoms for awhile.

I find myself, especially during the difficult times of when I am bedridden or lying ill on my bathroom floor, obsessing about illness and my symptoms. It’s difficult to not feel like the world is crumbling from under me in those moments. Even when I’m just sitting on my couch I can feel my mind start spiraling into anxiety about the future. These are opportunities to take a step back and focus on the present moment. Focus on the breath and stay calm. Mindfulness can train you to do this, but it definitely takes practice. It can alter mental patterns and destructive thinking. 

Sometimes I do the 20 breath count in these moments. If I’m having a difficulty sleeping, I’ll get out of bed and do the 20 count. It stops my brain from spiraling out of control and contributing to physical symptoms. When I was teaching, I tried to do the 20 count between classes just give my brain and body a rest.

Now that I’m not working, I’m trying to get back to meditation and a determined mindfulness practice again. Meditation actually had a benefit I didn’t expect. It gives me boosts of creativity. After meditation, I often feel like I was just given a cosmic hug. 

I hope that this is helpful to you and that you can introduce mindfulness into your life as well. We all know the brutality illness can cause in our lives but it can also open new possibilities and opportunities to know ourselves and feel gratitude for the world around us. Mindfulness could be an option to fulfill these positive aspects of illness.

Here are some related links that might be useful:

Tuesday, December 2, 2014

The Invisible Decline

I am working on other posts, especially ones that I think are helpful. I’ll start one and then abandon it. I guess I need to honestly discuss what I’m living. I don’t want to talk about this but I think I need to get it off my chest before I can move on—this is real. This is true. This is now.

I’m living the invisible decline. I was hoping when I left work that things would plateau a bit or I could at least regain some sort of control, but I’m still learning that control is an illusion. I have always thought since this thing started a few years ago that things would eventually improve. Many of those with chronic illness live with this hope despite declining. I want to pretend that everything is ok all of the time and be a rock star and just go with it.

I see friends, family, acquaintances, doctors, people, and I look the same to them. I look like the same person I was three months or a year ago, but I’m not. I continue to decline—decline with no real explanation. The things I could do just two months ago, I can’t right now. I’m still hoping to reclaim them and am continuing to work hard to do so. My symptoms continue to worsen. The bright spot is the medication I recently started is abating some of it and physical therapy is giving me some strength back. I still have hope that my doctors can make more sense of this puzzle.

I’m grieving and I’m adapting and it’s a slow, painful process to live through. But the decline isn’t completely invisible. If I leave the house, I need the wheelchair almost all of the time. My energy only lasts in short bursts and then I crash very hard and don’t recover for hours. I at least have cats who are willing to snuggle during that recovery time and a husband who never questions what I am experiencing.

I had a wonderful, beautiful Thanksgiving with my family last week that I am immensely thankful for. That day was a real gift. At 8:30 I hit a wall really hard and my sister said, “When I got here you looked good, now you look completely different.” It wasn't invisible. I peeled myself off the couch and my husband drove us home. I feel so much gratitude about making it that long and getting to really enjoy that time.

I don’t always feel sad about this invisible decline. A lot of the time, I’m just trying to adapt to it. I wasted a lot of energy the last year or so fighting it. I don’t have the energy now and maybe that’s a good thing. Honestly, I'm feeling more content with life than I have in a long time because I'm learning how to accept and adapt.

A few weeks ago, I wrote this is in my journal as I way to try to cope. It’s mental dumping to just say what I need to say about it so I can analyze it more clearly. This is the harsh reality of living the invisible decline. I know there are many Spoonies out there in the world who also are living it. So many of them out there. I've heard their voices and joined their struggle. The sense of powerlessness can be overwhelming, but take comfort that all of us, every living thing on this earth is powerless in some sense, and that’s ok. We don't have to succumb to it. Powerlessness doesn't have to define you. I hope these words find you well.

Sinking. Like I’m sinking into quicksand and I’ve lost the strength to pull myself out. Every time I try to adapt to what I’m able to do, the peg moves lower.  Is this life now? Sometimes if I look into the future, it will swallow me whole. I can’t think about it. I can only adapt to each moment. The decline feels like some sort of moral failure. What am I doing wrong? Am I not doing enough? I push myself so hard every day to try to reclaim my treasure, always searching for what I’ve lost but it’s left no trace. No crumbs to follow. Like a weight is tied to my shoulders and I’ve been thrown overboard. My markers of identity have been washed away in a sea of illness. My achievements, my titles, my earnings. Let the tide just pull me in. Wash over me. Let the strings of the universal design pull and guide me. Because I can’t fight it anymore. There’s a new path somewhere. If I hold on. Just hold on.

Feel this tug in the back of my navel. But that’s not what it is. The darkness wants to subsume me. But that’s not what it is. This is grieving, growing pains, and the phoenix rising from the ashes into something new. Something transformed. Sometimes the choice is made for you and you have to make your life into the shape of something new. I’m still pondering that shape, or the universe is pondering it for me. It’s an exchange, a collaboration. The darkness stares back at me, always trying to win. Always trying to cheat me and lie, make me believe it’s too much. That there is no winning. The darkness can win sometimes but not all the time.

I have faith. Such faith because I’ve seen the darkness many times and made it to the other side, sailed a ship straight through it to a serene shore.

I’ll wake up tomorrow. Open my eyes and let the day take me where it will. I will feel gratitude for everything I have and everything I’ve been given. I’m free to accept that this is what’s happening to me. This is what life is. We continue, beating on, against the currents. There is strength and power in this.

I’m figuring out what this path is. What is the journey that lies ahead. Keep listening to the messages of the universe and they will plot a course. Find a way.

And hold it. Hold fast to it.