Being Present

My illness has taught me to soak in beautiful moments and to be grateful that I have so much goodness in my life. The 2014 holiday season was one of my favorite so far. That may seem odd, since it’s my first holiday season with a chronic illness, but I assure you it’s the truth. I was fully present while celebrating with loved ones. I didn’t spend much time worrying about what I should do or how things could be better. Instead, I focused on the beauty to be found in my messy, imperfect life.

There is a peace that comes with letting go of the future I’d expected. I have to do a bit of “letting go” every day.  During the holidays, I was reminded that it’s not easy to need a wheelchair to make it through a holiday display. But once I accepted my new reality, I could focus on having fun instead of being upset that I depend on my chair. There are dozens of moments like that each day for me as I learn to live a full life with an illness. And each of those moments present me with the choice to either think about how things could be or to be grateful for the goodness to be found in my new way of life. 

Krohn Conservatory 2014

(Touring the holiday show at a local conservatory with my mom)

I believe that it’s all about perspective. The way I approach life affects what I see. When I think about the time spent with my family as precious and important, it’s much more difficult to spend that time angry about the things I can’t do with them because of my illness. I’m too busy paying attention to someone’s funny story or hugging a loved one to think about what could be. I am present in the moment, even though there are new limitations for me. I refuse to spend unnecessary time focusing on my frustrations, because doing that causes me to miss out on the relationships around me.

I was able to make it through two different trips away from home over the holidays, which is great progress for me! Thanks to my mom and my husband, both of the trips went as well as I could hope. I am currently unable to drive, but I was still able to spend some great time with family. One of the brightest parts of my holiday season was the time I spent with my nephew. I got to cuddle with him, rock him to sleep, and play with him. It was delightful! S and I soaked up all the time we could get with the little guy.

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(Spending time with our nephew was wonderful!)

I realize the excitement of the new year has just about worn off, but I’d like to encourage you to make a 2015 goal for yourself. As for me, I’ll be focusing on being present for the beautiful moments that make up my messy, imperfect life.

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Thankful Thoughts, Week 3

We just finished up the Thanksgiving season in the US. I had a memorable, wonderful Thanksgiving! I hope you did too. I firmly believe that gratitude is important to practice year-round, and I encourage you to take some time to make a gratitude list of your own. There is no “wrong” way to make a list of what you are thankful for in your life, simply out some paper and start writing.

I’ve made some great memories this week with family members, and I am thankful for the moments that make my life beautiful. Here is my gratitude list:

Rupsis Farkle game 2014

  • My husband’s family made a 4 hour drive to celebrate Thanksgiving with us in Indiana. They came full of joy and energy, ready to help in an way they could. I directed some of the preparation, but other people made the meal. I was able to listen to my body and rest when needed (which is difficult for me, especially when I am hosting people in my home). We played a game of Farkle, ate lots of pie, and had a great time!
  • I saw my nurse practitioner on Friday because I was having terrible pain on my right side. She was able to fit me in quickly and she even stayed late to help me. I am grateful that she believes I know my body best and that she trusts me to be honest. My neck, back, arm and leg alternated between being painful and numb, which had never happened to me before. I was somewhat scared because it was so unrelated to my typical symptoms. My NP found that I have a pinched nerve, likely due to muscle strain in physical therapy. It should heal in the next few days, but right now I am focused on taking pain relief medication and resting. I am glad that I was able to get an answer before the weekend, because it would have been much more difficult to deal with the pain without guidance from my NP.

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  • My sister-in-law, her husband, and my nephew came to visit us during their Thanksgiving travels. I adore my nephew, but I haven’t been able to see him much because he lives in Illinois, and I can’t travel that far right now. S and I got him a small gift, and we had so much fun opening it with him! My pain and POTS symptoms were manageable during the visit, and I was tremendously grateful.

In this holiday season, I encourage you to take a moment to reflect on the joy in your life. I recognize that there are troublesome things happening everywhere, but I think the best way to face them is to look for goodness.

I have new ideas that I’ll be bringing to the blog later this week, so stay tuned! And please let me know about the goodness in your life 🙂

Self-Care and Chronic Illness

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Today I want to share some tools for bringing joy into your life. We all need encouragement, and sometimes it can be best to seek it out for ourselves instead of waiting for it to somehow come along. I call the practice of encouraging ourselves “self-care.”

Chronic illness can be lonesome and I believe self-care can help make things more bearable. It’s something that we can do for ourselves, which increases feelings of independence. Self-care can benefit anyone, though. I’ve shared my thoughts on self-care with dozens of people. It’s something that helps me, and I naturally want others to benefit from it too. Some people are resistant to my suggestion, so I came up with an analogy to explain why it is such an important tool. Here’s what I tell them:

Self-care is like car maintenance. It isn’t always convenient, but things will break down if you don’t practice it.

Self-care looks different for everyone. It may take the form of quiet, alone time for one person. Someone else may need to call a few friends and share the events of the week. Another person may want to spend time being creative in order to recharge. There is no wrong way to practice self-care. The goal of self-care is to give your soul a chance to be encouraged and refreshed. It is an important part of being an emotionally healthy person and it encourages us to treat ourselves with the same love that we show to others.

I’d like to share some of my favorite ways to practice self-care. I recommend setting aside time for self-care on a regular basis or working it into your schedule until it becomes a habit.

  • I check out daily online readings from people who inspire me. I look at the posts by Brave Girls Club when I need a pick-me-up. Lottie Ryan’s website reminds me that I am not defined by my illness.  And I love Lottie’s weekly e-mails! I read Ann Voskamp’s A Holy Experience when I need spiritual encouragement, as well as the lovely Savannah’s entries at One Mountain at a Time.
  • Janie Hubble and Misty Rees are two of the most brave, beautiful women I know. Their hearts are made of gold, and they truly care about the people around them. They founded Rooted Souls Retreat Center earlier this year.  It’s a place that encourages creativity and restoration. I encourage you to check out their website to see the retreats and workshops they offer.  You will love your time there!
  • Some books are good for the soul. Right now, I am finishing the audiobook The Gifts of Imperfection by Brene Brown. I feel like I get sage advice each time I listen. Anne Lamott’s writing is also encouraging and joyful. It’s written from an honest place and I appreciate the vulnerability she puts into her books.
  • Pinterest is a great place to find encouraging quotes and free printable art. I find words of truth to be one of the most powerful tools I can use to encourage myself. (If you’d like to follow my boards on Pinterest, here’s the link.)
  • My gratitude journal helps me keep perspective. I list at least five things that brought me joy and I reflect on the good things in my life.  I write in the journal every few days. Try it for a few weeks and see the difference that it make!

I hope that you will consider practicing self-care. It’s a tool that can be taken with you anywhere and it’s such an important part of living an abundant life.

Please let me know how self-care helps you in the comments section!

Thankful Thoughts– Week 1

I’ve been taking a class entitled “The Science of Happiness” through EdX.org. It has been a great experience for me, since I can learn from home at no cost. EdX’s goal is to make high-quality education accessible to everyone. There are a variety of courses that can be audited for free, and schools like Harvard University, Berkeley, and Dartmouth provide them. “The Science of Happiness” course focuses on how psychology, biology, and social factors affect the ability to be happy. I enjoy the video lectures the most because I can listen to them, even on days when reading is impossible due to brain fog. Each week there is a suggested practice for increasing happiness, and this week’s practice is gratitude.

I believe gratitude is an important habit, and it has truly made a difference in my life. It has been great for me to learn some of the scientific reasons that gratitude improves quality of life. I am starting a recurring feature on the blog that focuses on the goodness I’ve experienced during the past week. Practicing gratitude is a simple, effective way to improve happiness, and the best way I can show that to readers is to model that on this blog.

So here’s to Week 1 of my Thankful Thoughts feature:

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  •  Physical touch can be a powerful healing tool. On days when I am feeling low, our cat Cali always comes to snuggle with me. She did that a few times this week, and it was wonderful! The isolation that comes with chronic illness is a real issue, but she makes such a difference with her warm presence.
  • Some family friends went on a trip to Germany for a few weeks, and they returned this weekend. S and I went over for dinner last night and got to hear all about their travels. I’ve never been to Germany, so it was quite interesting to me. Plus, sharing a meal with kind people is always good for the soul.

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  • I practiced self-care this week and it made a real difference for me. I drank coffee almost every day, just because I felt well enough to have it! I’ve been keeping my nails painted, which makes me feel more put-together. Right now I’m wearing Plum’s the Word from Sally Hansen. It’s perfect for Fall.
  • I reached out to a friend after feeling beaten-down by a tough week. She made time to come over and just listen to me. Sometimes we all need to be reminded that we are not alone and that love always comes, even in hard times. I also read a great blog post called One Brave Way to Heal Our Relationships, Our Hearts & the Internet. It was just what my heart needed.

I hope that you are able to practice gratitude today, wherever you are. Spending time writing down and acknowledging the goodness in our lives really does make an impact in how we see the world.

For more information about the benefits of practicing gratitude, click here.

Loving Yourself on Hard Days

Good in Every Day SelfieSome days are hard, and the past three days have been that way for me. I am exhausted and my heart rate is elevated. And while I’m getting used to dealing with these symptoms, the disappointment that comes with them doesn’t go away. It still hurts me to cancel plans and I don’t enjoy asking for help with simple tasks.  It’s humbling to admit that I don’t have much control over how I feel from day to day.

I’ve worked hard over the years to develop personal freedom and independence. It’s been a real struggle for me to accept that I have a purpose that is not dependent on what I do or what others think. I’ve fought to hold onto the truth that I am worthy of love, even on my worst days.  When I first met S, I was clear that I am a “strong and independent woman.” I must have said that phrase to him at least a dozen times before we even started dating because I needed him to know that I didn’t expect him to determine my self-worth. More importantly, I had to remind myself that while the relationships in my life are important, they do not take away my responsibility to love myself.

Over the past six months, I’ve told myself over and over it’s okay to ask for help. And I’ve realized that asking other people for help can be an act of self-care. If I choose to be without something I need because I won’t ask for help, then I am ignoring my responsibility to love myself. I wouldn’t want someone else go without what they need, and I can’t ignore my own needs, either. It may be humbling, but asking for help is especially important for me right now. At the same time, I have to remember there is an end to what other people can do for me. I can ask my loved ones to drive me to appointments, help me with errands, and sit with me over tea, but it’s unreasonable to expect them to take on the responsibilities I have to myself.

You see, no one else can convince me that my story matters. No one else can reach into the darkest parts of my soul and show me that I am beautiful, no matter what. I have to do that for myself. I firmly believe that compassionate people can help, but they cannot do the work for me. The most loving, helpful team of people cannot rescue me from the project of loving myself. They cannot force me to forgive myself for the mistakes that only I know about and they will never be able to repair the broken parts of my soul.

I am sharing this truth with you because I know that it’s hard to accept what you can’t change. It’s hard to live with chronic illness, shame or emotional pain. And it’s hard to admit that you don’t have it all together. But please, don’t let the difficulty scare you away from finding hope. Because there is always, always hope. There is hope for me on the days I cannot get out of bed and there is hope for you when you feel terribly alone. And when we find that hope and choose to love ourselves, hard days can still hold joy. The past few days have left me unable to do much outside of my bed, but I’ve still been able to find goodness in them. I’ve focused on my adorable cats, lasting friendships, fresh flowers, and kind husband. And I’ve celebrated the beautiful, abundant life I’ve created for myself. As difficult as illness can be sometimes, it can’t take away my joy or my self-love. I hope you will work to make the same true for yourself.

Anthem

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Sometimes I find a song that becomes my anthem for awhile. Right now my anthem is “I Believe” by Christina Perri (click here for the video). I stumbled across this song a few weeks ago, and I’ve listened to it on repeat every couple days. The lyrics hold so much truth in them, and different lines stick out to me each time I listen to the song.

It’s become increasingly important to me to know my truth, and “I Believe” is a reminder of many of the beliefs I hold dear. (When I say “my truth,” I am referring to simple beliefs that guide the way I live.) Most of the time, I live with joy and gratitude. But I must be honest– there are days that I do not follow my truth. On those days, I tell myself hurtful, untrue things about my purpose and worth. I have fought hard to become the person that I am, but each day I must choose to live my truth. Living with joy and gratitude is a daily decision.

Chronic illness does not change the core of who I am. It certainly affects the way I live my life, but it doesn’t have to take me away from my truth. Here are some of the things that I must remind myself to believe and practice every day:

  • Gratitude enriches my life. I need to take time to be grateful for the things that make my life better.
  • There is always hope.
  • Everyone needs kindness, both from other people and from themselves.
  • Joy and happiness are different. I can always choose joy, even when life is tough.
  • Being brave doesn’t mean that I am unafraid. Brave people choose hope when they’re afraid.
  • Love is stronger than fear.
  • A messy life can be beautiful.
  • I do not have to be perfect to be loved.
  • Every person has worth, no matter what.
  • I must be part of the change I want to see around me.
  • Compassion and empathy empower me to live an abundant life.

I would be excited to hear how your life is affected by the truths that you hold close to you. We all have something to teach to those around us.

Enough

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I am a person who feels deeply; I experience emotions in a big way. I have always been a tender soul. My dad warned me to make decisions with my head instead of my heart, and I think he told me that because he knows how easily I can be overwhelmed by my feelings. My capacity to feel deeply has made me into someone who truly cares about the well-being of others. It has caused me to educate myself on issues of social justice because I can’t turn away when I hear that someone is being marginalized or bullied. In my adulthood, I’ve learned to use my tender heart as as asset, but that wasn’t always my experience. My tender heart was ruled by shame for years. I saw society demand perfection in exchange for love, so my heart drove me to be “good enough,” “pretty enough,” and “smart enough.” I learned the hard way that perfection is impossible, but I also grew to accept that I AM ENOUGH, even in my imperfection.

I believe that we must remind our hearts of the truth because there are lies floating around that we hear over and over again. We hear that our worth is determined by what we do, and we try to do it all. We’re told that thin is better, and we believe it. We see impeccably decorated homes online and go out to find a throw pillow to fill our emptiness. None of our attempts to “be enough” satisfy us because we can never live up to every expectation. We’ll never be perfect. And so, we put on the cloak of shame and hope that it will cover up all of the things we are not, never noticing the good things that we cover up in the process.

My tender heart has experienced a lot while I’ve been ill. It’s heard a few whispers that I am not “enough,” and it has considered giving in to shame. It’s considered going back into the dark places where I lived my life for too long. Being ill limits my ability to do certain things, so my heart may hear for a moment that I am without purpose. But when I cling to the truth, I see that my worth is not determined by what I do. My worth is found in who I am, and that does not change. Illness cannot steal my worth from me because I have already found worth in myself that is not determined by being “enough.”

My message today is that YOU ARE ENOUGH, too. The battle you are fighting right now does not define who you are. I am loved. You are loved. Let us take off shame today and remind ourselves of the truth.

This post is largely inspired by Brene Brown’s TED talks on vulnerability and shame. I encourage you to listen to them for yourself.

New Purpose

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When I first started having symptoms, I longed for a diagnosis. I thought that if I knew what was wrong, it would give me peace of mind. I was fortunate to get my POTS diagnosis within a few months of onset. Many people have to wait years for an accurate diagnosis, and I am grateful for a nurse practitioner that kept trying when I had an unusual set of symptoms. Knowing my illness has helped me to understand some of what is happening with my body. Still, there are some things that come with chronic illness that I couldn’t learn about through online medical research and education.

Most of my life, I’ve had a purpose that was easy to identify. When I was young, I was overly invested in my schoolwork. In college, I became passionate about social justice issues and mental health. I focused my studies on these issues so that I could live out my beliefs in those areas. Once I graduated from college, I spent my workday walking alongside people with severe mental illness. When someone asked me what was going on in my life, I could always talk about school or work. People usually want a short answer to the question, “What do you do?” and I’ve perfected my response over the years to a sentence or two.

And then came chronic illness. I don’t have a “typical day.” My activities usually depend on how I feel that day and if my body is willing to cooperate with my plans. If I have an elevated heart rate, it’s not realistic for me to leave home. Sometimes I cancel plans because I know that I cannot physically do what I’d hoped. One of the most difficult things for me has been leaving my job. I may be able to go back a few months from now, but I am unsure if that will be possible. I wasn’t able to wrap up things at work before taking my leave. I got really ill one day and left early. Since then, my doctors have advised me not to work. I love my job, and my co-workers are great people. I miss working with the patients I’d gotten to know so well. My first few weeks off work were spent thinking about the patients, asking myself, “How is she? Is he staying clean and sober? Will she succeed in meeting her goals?”. I miss the little moments when I saw progress. I even miss dealing with the behavioral issues with patients, because I knew I had an opportunity to help them grow. Leaving work felt like walking away from my purpose. As an adult, I have felt most alive and purpose-filled when I helped someone, and I got to do that every day at work.

Now I am the one who needs help and I feel powerless more often than I’d like to admit. And it feels natural to stay in the dark parts of my mind and feel sad. Learning to live with a chronic illness requires a grieving process. I am still working through my grief, but I have started to accept some of the changes in my life. It’s helped me to practice gratitude on a daily basis. Little by little, I am working toward living a full life. Today I made a list of things I can still do to bring joy to myself and others. It brought me some peace to write down a dozen things that I can always do. Here are a few of my favorites:

  •  wave at neighbors
  • kiss my husband
  • practice gratitude
  • encourage a loved one
  • write letters to pen pals
  • watch good movies

I am learning to redefine my purpose. I may not have the clear-cut title of student or case manager, but I am still a friend, wife, daughter, and neighbor. And for now, I want that to be enough.

 

Love,

Danielle