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
The past two years of illness have been overwhelming, and I think I need to start being more transparent about the toll it’s taken on me. It’s difficult to be thrust into the world of constant doctor’s visits, chronic pain, … Continue reading
I spend a lot of time alone. My illness limits my ability to get out of the house, which means that I am often home by myself. And much of the time, that’s OK. I’ve learned to take advantage of the time spent by myself, when I have the freedom to make my own plan for the day.
Still, I thrive the most when I can be with other people. There’s a big part of me that needs to interact, encourage, and “just be” with the people I love. I am a people person– there’s no doubt about that. When I was able to work, I chose jobs that focused on building relationships with people and helping them improve their lives. I feel most alive when I am invested in purposeful relationships.
This week I’ve spent time in Illinois with my husband’s family. We don’t have extravagant plans, and I like that. There’s very little pressure to do anything in particular, which allows me to do whatever is realistic. After spending most of my days alone (until S gets home from work), I am thrilled to spend my days with loved ones for a while. It surprises me what all I’ve missed as I’ve adjusted to spending most of my day by myself. This week, I am soaking in each conversation and enjoying every shared meal. I’m enjoying cookies baked by my 11 year old brother-in-law, sipping on peppermint tea from my sister-in-law, and savoring the Orange Julius and latte made especially for me. I am grateful for the time spent teaching my younger sister-in-law how to knit on the loom, trips outside of the house (despite the cold weather), and for one-on-one time with some of my husband’s siblings.
I think it’s important to acknowledge the good things in our lives and to soak in the beauty that is found in building relationships. None of us can make it through life alone. We need each other, even if it’s difficult to admit sometimes. We need hugs and smiles and laughter. We need loved ones to comfort us when we cry and celebrate with us when we succeed.
So today I am challenging myself to look for reasons to be grateful. I am asking for help when I need it, and I am looking for the goodness around me, even when I am in physical pain. Because the goodness is there; it’s always there. I just need to choose to embrace it and enjoy the time I have with people I love.
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.
(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.
(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.
Healing has been on my mind this week. I’ve taken steps to make progress in my POTS treatment, but I’ve been reflecting mostly on emotional healing. Chronic illness wears down my soul, so I make an effort to build myself up as often as I can. Healing is a process, and it looks different for everyone. I have a big need for compassionate, grace-filled relationships because they are where I find the most healing. When I am isolated and alone, I find it much more difficult to face the difficulties that come with emotional healing.
This quote by Buddhist author Pema Chodron best explains the type of relationships I find most helpful in my healing process. These words ring true each time I read them.
Compassion is not a relationship between the healer and the wounded. It’s a relationship between equals. Only when we know our darkness well can we be present in the darkness of others. Compassion becomes real when we recognize our shared humanity.
I am grateful for all kinds of things, but today I am most grateful for the compassionate people in my life who help me heal. You see, I don’t need to be judged or summed up by someone else. I don’t need unsolicited advice or anecdotal evidence about why I should change. I suspect that you don’t need those things either. In fact, I am confident that you need compassion from wounded healers just as much as I do. We all need someone to come alongside us, someone who is willing to listen and relate.
My goal is to be a wounded healer– a person who acknowledges my own brokenness (past and present), who is willing to help other people along the way. For me, that means being a part of a community of women with chronic illness who are committed to encouraging one another. It means reaching out to people who are courageous enough to admit they need support as they face mental health issues. Most importantly, it means that I relate to the hurt and struggle of people around me. I try my best to respectfully help them in whatever way they need, and I don’t spend my time judging them. Being a wounded healer doesn’t mean that I don’t have boundaries, but it does mean that I focus more on kindness than I do on judgement.
So here’s a short list of the compassionate acts I’ve seen around me this week. They’ve encouraged me to keep working toward my own healing.
- Lottie Ryan’s festive style challenge brightened up my week. Dozens of chronically ill women from all over the globe took part in the 7 day event. We read uplifting posts that were related to each “style of the day”. The picture above is from first day, “Banish the Blues.” I wore my favorite blue earrings and a blue striped top. I also took time to be close to my cats in order to lift my mood. Throughout the week, I enjoyed feeling put-together even though I didn’t leave the house much. It boosted my confidence to wear “real clothes” every day.
- S and I see a lot of poverty in our community and we do our best to come alongside our neighbors. There is a lot of hardship here and change comes very slowly. This week, we got some much-needed good news! It was officially announced that grant money has been secured to demolish 140 structures in our town. After demolition, the property ownership will be transferred to non-profit community organizations. This process will make our town safer and even more beautiful! Plus, local non-profits will be able to take care of the properties and use them to help our community. S and I are excited about this, especially since one of the homes is less than a block away from us.
- Ashlie has reached out to me time and time again to walk with me through my healing process. She openly shares her experiences with dysautonomia in an effort to help me live a fuller, healthier life. She’s found a way to help other people with chronic illness, and I truly respect her for that. I received my Physician’s Kit and Wholesale membership last Saturday, and I am grateful for her willingness to share her journey with me. I have seen some great results by using my oils this week 🙂 Using the OnGuard essential oil has helped me fight off flu germs, which is a big deal for me these days!
I hope that we can all take time this week to consider how we can be wounded healers to the people in or lives.
This past week has been full of beautiful moments. My illness has cooperated with my plans more than usual, so I’ve been able to do more outside of the house. I’ve gotten to spend time with dear friends, and it’s been glorious. Practicing gratitude helps me remember that sacred moments happen as we go through the motions of “normal” living. There are not trumpets that start playing right before a precious memory is formed and there aren’t announcers to let us know that something special is coming. We have to look for those moments ourselves, and the more we look for them, the more beauty we see.
There is a quote I’ve been ruminating over this past week. It’s one of my favorite reminders to look for goodness all around me, even in the ordinary moments.
The ordinary acts we practice every day at home are of more importance to the soul than their simplicity might suggest. -Thomas Moore
Our routines and chores can be looked at a few different ways. They can be seen as necessary tasks that must be completed before “more meaningful” things can be done, or we can look for the goodness in time we spend doing them. We can spend that time being grateful for the house we need to clean and the clothing that needs to be washed. I’ve seen what life can be like for people who are in need of clothing and housing, and it is tough to go without. I am not suggesting guilt-tripping ourselves when we become bored doing a task for the hundredth time, but I am encouraging us all to look for opportunities to be grateful in the little moments. Because there is meaning in folding laundry for family members, in making the bed, and in doing the dishes. And there is beauty in all of the little moments that add together to make a life. We do not need to look for grand, perfect moments because there is so much goodness in the imperfect, small ones.
Here are a few of the things I am thankful for this week. I hope you take the time to reflect on the goodness that can be found in the ordinary parts of life.
- I went to the annual Christmas parade for my city last night. It was cold, so I bundled up in my transport chair and drank hot chocolate with friends as we watched our neighbors kick off the holiday season. I enjoyed seeing children wave from their floats with smiles on their faces. I looked around and saw dozens of people around me supporting the good things that happen in our city, despite the cold weather, and it was wonderful.
- My husband went out and bought a new cabinet for the upstairs bathroom, and our sweet cat Lily Rose watched him put it together. She spent at least an hour watching his every move and “supervising” him while I laid on the floor because of a POTS flare. Lily Rose has a pretty short attention span, so it was surprising to see her so invested in building a cabinet. The cat was adorable, and even from the floor, I was proud of me kind husband who works hard to make our home even better.
- I have a wonderful friend who has visited me at home when I have not been well enough to go out. This week, we were able to go out to coffee at Starbucks! It was so much fun for both of us. I took a picture of myself (above) before leaving to document the occasion.
Please take some time today to consider the beauty and goodness that can be found in the ordinary parts of your life. There is always something to be grateful for in our lives, even in the tough moments.
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!
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:
- 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.
- 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.
This week has been one of the hardest for me in quite some time. My mind has been swirling with negative thoughts and I’ve fought hard against them. I’ve practiced gratitude. I’ve kept my head buried in words of truth written by strong women. I’ve practiced prayer, meditation, and silence. All of those little things have helped me remain brave, despite my mind telling me otherwise.
Some days are just tough. I can’t sugar-coat them or fix them to be better, they’re just hard. And I think it’s important to acknowledge that truth. I am very much in favor of being positive and optimistic, but I believe that we need to be honest about the fact that some things are just terrible. There isn’t always a bright side. But there is always Love.
Love whispers, “You will make it through today. You don’t have to have it all together, you just need to show up and keep trying. You matter.” Sometimes I can hear Love’s voice on my own, and that’s all I need to keep choosing hope. On hard days, I seek out someone I trust to remind me of the truth. It’s humbling to admit that my mind is muddled with unwelcome thoughts, but I have to ask for help because I can’t always find Love on my own. There are also times when Love comes to me, in the form of an unexpected letter or the presence of a dear friend. Love always comes. We just have to be open to seeing it.
The important thing is to never stop looking for Love to show up. I admit that sometimes it comes later than I would prefer, but it always comes. And that is beautiful. There are days that will not be remembered as easy or even joyful, and that’s OK. But we must keep going, because there is always, always hope. And Love will find us.
POTS symptoms are flaring up again, which has not been fun. I cancelled a physical therapy appointment this week because I realized that my body needs to rest in order to recoup from a fever and recurrent tachycardia (high heart rate). I am doing by best to be kind to myself and allow myself to “just be.”
I went to the rheumatologist today, and he has ordered a battery or blood work to be done. He’s not overly concerned, but he wants to continue to investigate my symptoms.
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.