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 life I have now is not what I’d imagined for myself. I don’t use my college education or my job skills very often. I am not as independent as I’d like, and my world feels small much of the time. It’s tough to grapple with all of the ways my life has changed since becoming ill, and I certainly don’t have this “chronic illness” thing figured out. My time is taken up by doctor’s visits, physical therapy appointments and calls to the insurance company. And I will be the first to admit that none of this was on my bucket list.
Yes, my life is hard; yours probably is too. But my life is also full of goodness that I wouldn’t have found on my own. Sometimes life takes us to places we’d never choose. It can take a while to accept that things are going differently than we’d hoped, and that’s okay. Life isn’t a fairy tale, and no matter how hard we try, we can’t control everything in our lives. If you need to cry, scream, or spend the day in bed to cope with the hard parts of your life, I think that’s fine. Allow yourself to feel the pain and grieve for the losses you’ve experienced. But once you’ve done that, please keep going. Don’t stay in that dark place for too long, because you have a life to live. You have a purpose, even when you have no idea what it is. I know it’s not easy, but believe me, even with the grey cloud of illness looming over me, I still have a good life. It’s not what I’d pictured for myself– it’s not even the life I wanted, but I am still so very grateful for it. I have a kind husband, sweet cats, caring friends, and loving family members. And my illness can’t take any of that away from me. Even on my worst days, I have joy and I know there is hope. It took me a long time to get to where I am, but it was worth all of the work.
If you’re going through a tough time right now, please know that you are not alone. Many of us do not have the lives we’d expected, and I don’t think anyone has it all together. We all have unanswered questions, deep frustrations, and regrets. But we don’t have to let those things define us. Instead, we can choose to see the beauty in our lives. We can choose to celebrate small victories and special moments. We can acknowledge that, even on our worst days, we are still worth loving.
I understand that choosing to look for the goodness in our lives does not take all of the pain away. I know that some things are unfair and unjust, and that bothers me. Still, I am a firm believer that celebrating the goodness in our lives can keep us from being overwhelmed by the difficulties we face. And I think we all need help keeping a balanced perspective, especially when life is hard.
Today I choose to keep going. I choose to look past my frustrations and find something to celebrate. And I hope you’ll do the same.
The dysautonomia community recently lost a seventeen-year-old young lady to suicide. Her illness overwhelmed her and she didn’t think she could keep fighting. If you find yourself feeling isolated, lonely, and depressed, please reach out to someone. You deserve joy. You deserve hope. And no matter what, you are worth loving.
Here’s a few resources if you need a place to start:
Lifeline suicide prevention: http://www.suicidepreventionlifeline.org/
Anxiety and Depression Association of America: http://treatment.adaa.org/
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.
My heart breaks every time I learn about injustice. I am a deeply empathetic person– it’s just the way I am wired. I can see that people all over the country are experiencing pain and feeling misunderstood. There is a lot of hurt these days, and it seems to keep spreading. As I’ve watched the news this week, I’ve felt moved to make a difference, so I’ve been thinking about what I can do to bring positive change in my community. I’ll have to be creative, since my illness causes me to spend a lot of time at home, but I am determined to bring a bit of light into the darkness we face.
I don’t understand why people think that hostility and hatred will bring change. It won’t bring understanding or grace; all it can bring is more hurt. When I watch the news and listen to the people around me, I don’t think we need any more pain. We need kindness, we need forgiveness, and we need to feel heard. We need to know we’re not alone, even when things get messy. Deep down, we have a lot in common.
I know that injustice, racism, and inequality are complex issues, and I still have a lot of learning to do. In the meantime, I’d like to offer a few ideas for bringing hope into our communities.
- Focus on listening to others. Instead of spending your time thinking about the “perfect response” during a conversation, listen to the other person. You’ll be surprised what you learn when you take the time to focus on someone else’s need to be heard.
- Look for volunteer opportunities. If you want to make a difference in your community, you may need to do some groundwork. Most charities and community organizations are stretched pretty thin, so they don’t have a lot of time for recruitment. If you care about people experiencing poverty, look into the food pantries in your area. Consider donating food to them every month or set up a time to talk with the director about helping distribute food. If you want to help children, see if there is a chapter of Big Brothers Big Sisters nearby. You need to add your volunteer work to your schedule so that it becomes a part of your life. Otherwise, it’s easy to put it off.
- Get to know your neighbors. These days, we often connect online, and we sometimes forget about the people who live next door. It can be a bit awkward to say hello to someone for the first time, but most people will say hello in return. Think about baking some Christmas cookies as a friendly gesture– it’s a great way to break the ice. This time of year can be tough, so think about ways to be kind to the people who live nearby.
- Collect items for a worthy cause. Hygiene items are in high demand for people with little or no income. Consider collecting toiletries from friends and family to donate to a local charity. Or put together baskets of feminine care products, hair brushes, lotion, hair spray, etc. for a domestic violence shelter. Socks are also a much-needed item at shelters. Ask loved ones to give a pack of new socks with your holiday gift and then bring the collection to local homeless shelter. You can also call specific organizations to see what they need most so that your collection can be especially helpful.
I encourage you to set aside time this week to do something positive for someone else.
Be the change you wish to see in the world. -Gandhi
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:
- 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.
- 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 🙂
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.