Keep Fumbling Through

On the path through life, there are sections that are full of beauty and opportunity, and others that seem to hold one disappointment after another. I am currently facing the latter. And to be honest, I hate it. The non-stop … Continue reading

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. 

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(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.

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.

What I Need and What I Don’t

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Chronic illness is quite the teacher. I’ve been surprised by the things I’ve missed on my bad days. The little things in life have become increasingly important to me. I’ve missed things that I wouldn’t have expected, like the sunshine on my face, being in the woods, and walking without caution. I appreciate independence in an entirely new way because I know what it’s like to depend on others for almost everything.

There were a few different local marathons this weekend, and I saw pictures online of smiling friends crossing the finish line. And I smiled too, because I saw happiness in their eyes. This afternoon, when I walked through the living room with a lid-free cup of coffee in my hands (and didn’t spill it), I felt proud of myself. I suspect that how I felt in that moment was similar to how the runners felt when the race was done and they got their medals. Living with chronic illness requires determination and perseverance, just like finishing a long race. Progress comes slowly and it requires hard work. But unlike running a marathon, being ill is not a choice. I can’t throw up my hands and give up. I can’t take a break or schedule a day off.  I am not going after a medal or fulfilling a goal; I am fighting for my health.

There are plenty of things I need to manage my illness. I need kindness from strangers. I need thoughtful words from loved ones. I need rides to appointments. I need grace and understanding. This whole ordeal is difficult, and I don’t do well when I try to handle it alone. There are also things that I do not need. I do not need judgement. I do not need to hear the newest tip or trick on increasing my energy.  I do not need feigned concern or promises that you cannot keep.

Please do not hear my words in an angry tone. I am not writing from an angry place; I am sharing the truth with you, and I am accepting that certain things are hurtful. It’s hurtful when someone implies that I am not ill. I have POTS and my symptoms are real. It is heart-wrenching to be told otherwise. It feel hurt when I am told I could feel better if I would follow a particular “quick fix.” I have tried a number of methods for treating my symptoms, and I need my loved ones to trust that I am managing treatment the best I can.  I also have a team of doctors overseeing my progress. Unfortunately, POTS doesn’t have a cure. If you want to show me that you care about my health, please take the time to learn about my condition or ask me about my illness. Finally, be clear about your willingness to help me. If you are not interested or able to help, please find the courage to be honest with me. Please  do not tell me you’ll be there for me if that’s untrue, because that is hurtful and mean. I appreciate people who are polite, but I put more value on honesty.

I have learned many things in the process of being ill, and I am grateful for the people who have supported me as I learned the hard things. I am grateful for the days when I can sit in the sunshine or enjoy a sense of normalcy. I am grateful for a husband who holds my hand as I figure out what it looks like for me to live an abundant life with an illness. It is empowering to take the time to think about what I do and do not need as I try to build a good life for myself. I encourage you to do the same.

Choosing Love

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This afternoon I finally made time to journal and reflect. It’s something that (almost) always helps me feel better, but for some reason I don’t do it was much as I’d like.There are a lot of unknowns for me right now, and that makes me uncomfortable. I recently told S that I’m feeling especially vulnerable these days, and it was a relief to admit that to someone out loud. I’ve decided to share some of today’s journal entry with you because the words that came onto the page are straight from my heart.

When I am honest with myself, I acknowledge that I feel broken right now. I am grateful and I choose joy as much as I can, but those things co-exist with the hurt. I am afraid of the unknown. And I ask myself, “What is the right way to deal with all of this?” I run ideas through my mind, but I don’t become convinced of a solution. And then I remember that there isn’t always a right way to handle something. I tell myself it’s okay to cry and scream when life is uncertain, just as it’s okay to spend time alone thinking about different ways to solve a problem. My personality tends to lean toward more emotional expression, but that doesn’t have to be seen as “wrong” or “not good enough.”

I spent a lot of my younger years motivated by shame; I was trapped by the fear of doing something wrong. As a result, I missed out on a lot of opportunities to see the beautifully messy parts of life. I now choose to live in love instead of fear. Living in love allows me to ask for help. Love tells me that I don’t have to know exactly what my future will hold. It pushes me to be vulnerable with loved ones when I feel alone. Love reminds me that I have value on my hard days, when my hair is a mess and my clothes don’t match. When I choose love over fear, I am able to live with hope again. And I am able to share my hope with other people.

But let me be clear– living in love is not always easy. Fear still sneaks in sometimes, and it tells lies and encourages shame. The only way I’ve found to push away fear is to accept my imperfections and embrace my humanity. My imperfections do not make me ugly or wrong. They do not determine my worth as a person. When I accept that I am human, I become able to make decisions because they are right for me. Living in love is a daily practice for me, just like choosing to live in truth.

Today I remember that the most beautiful parts of my soul have developed during tough times. Today I choose to live in love and drown out my fears. Today I accept that asking for help is not bad or wrong– it’s human. I will give myself time to breathe and reflect. I hope you can do the same.