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
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.
I want to share some practical style tips for looking good, even when you feel less than your best. Being sick can be difficult and exhausting. For most people, illness means messy hair, ratty sweatpants, and an overall feeling of yuckiness. After all, when we feel terrible, it’s tough to even consider putting our limited energy into showering or getting dressed in “real clothes.”
But in my journey with chronic illness, I’ve found that my self-esteem takes a dip when I look the way I feel. There is not a day that goes by that I feel 100%. Sometimes I daydream about what I would do if I had 24 hours of feeling “normal” again. But I don’t want to look as pale, bone-tired and discouraged as I feel. So I made the decision to change my routine and put some effort into my appearance again. Yes, there are some days I spend in my pajamas, but that’s not typical for me anymore. I almost always shower, fix my hair, and put together an outfit. I don’t do it to impress anyone or to live up to a particular beauty standard; I do it because it helps me feel more human. When I like the way I look, it’s easier for me to engage in the day and feel motivated to do the best I can with what I’ve been given.
Style Tips for the Chronically Ill
- Choose functional clothing. You can look and feel good while still considering your needs. Embrace your personal style and get creative! For example, if you are overly sensitive to certain textures or fabrics, don’t buy them. You’ll look and feel much better in clothing that makes your life better, not more complicated. I wear pants with loose, elastic waist bands most of the time because jeans are not comfortable for me. I’ve taken the time to find fun, printed pants for myself, similar to these.
- Wear layers. Symptoms aren’t always predictable, and neither is the weather. I suggest being prepared by incorporating the use of layers into your wardrobe. I often wear a fleece jacket, cardigan, or loose sweater over a tank top or blouse because my body doesn’t regulate temperature very well. Sometimes I even wear long johns under my pants! Since I can go from sweating to freezing in a matter of minutes, I keep that in mind when I choose my clothing. I tend to wear solid colored outer layers that I can easily mix and match them with my tops, which allows me to have more outfit combinations to choose from.
- Wear clothing that doesn’t wrinkle easily. Let’s be honest, ironing is a time-consuming chore and it requires a good deal of energy. Those of us with chronic illness have to carefully plan what we do, and eliminating certain chores makes life easier. When you’re looking for new clothing, look at the tag that outlines how to care for the item. If it requires dry cleaning, regular ironing, or special washing, consider putting it back on the rack. If you fall in love with the item, invest in a clothing steamer, or at least some Downy Wrinkle Releaser Spray. In my opinion, a clothing steamer makes it easier to target and eliminate clothing wrinkles instead of ironing the entire item. And Downy Wrinkle Releaser Spray gets out set-in wrinkles like a charm!
- Liven things up with accessories. When I want to add something special to an outfit, I put on a scarf, nail polish, statement jewelry, or some other touch of color. I instantly feel a bit happier when I do it. I promise that the little bit of extra effort goes a long way in feeling brighter and more put-together. Also think about adding some bright colors to your surroundings, especially if you spend a lot of time at home.
Living with chronic illness is difficult; there’s no sugar-coating it. But taking some time each day to focus on yourself helps you feel a bit better and more in-control of your day. And I think that makes a big difference!
(To read about 10 Must-Haves for Living with Chronic Illness, click here.)
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.
The last few weeks have been filled with nerve pain, rice packs, my heating pad, and cheesy TV shows. I went to my nurse practitioner yesterday and she started me on a steroid and a muscle relaxer to help with the pain. I haven’t had much energy to write, so for now, a short entry will have to do.
When I am in pain, I try to focus even more on the goodness in my life. If I don’t spend time doing that, things are much more difficult. So here’s my gratitude list for 2015 thus far:
- I am grateful for sunshine. Even on the coldest days, I can open my blinds and enjoy the beauty of bright days.
- I am grateful for rice packs and heating pads. I don’t want to consider how I’d feel without those things.
- I am grateful for decaf coffee. I can usually drink it, even if I’m a bit shaky. And it brings so much happiness to my day.
- I am grateful for essential oils, especially OnGuard and Oregano. I am convinced that I would have caught a yucky cold if I hadn’t been vigilant about using them during the holidays.
- I am grateful that I am home. Yes, I am in pain. And it’s no fun. But I am at home, with my husband, my cats, and heated blankets, not in a hospital. And I cannot take that for granted.
No matter what you’re dealing with today, please look for the little blessings in your life. I promise it will give you a fresh perspective!
Below is a letter written for people newly diagnosed with postural orthostatic tachycardia syndrome (POTS). It’s also a great tool for loved ones who are interested in understanding life with an illness.
I know that things are scary right now. It is life-changing to be diagnosed with a chronic illness, and it takes a while to process the news. To be honest with you, I am still learning to accept my diagnosis. But there is always hope, and there is goodness to be found in even our darkest times.
My goal in writing this letter is to share what I’ve learned with you. I am not a medical expert, so please consult with your medical team before making any changes to your treatment. I am dividing up this letter by topic to make it easier to read in case you have “brain fog” or trouble concentrating.My story: POTS can be triggered by a trauma or illness. I got the flu in January 2014. After that, I never really got better. I was able to return to work from mid-January til March (with a lot of sick days), but things got pretty bad for me. I worked at a residential treatment center for teenagers with mental illness. Most of the nursing staff could tell I was not myself. I lost 10 pounds in about a month, I was always exhausted, I had memory issues, my cognition/decision-making skills were impaired (“brain fog”), and I was very irritable. I craved salty foods all the time. I was also sick with one cold or another that whole time. One night, I was working, and I made a simple mistake that was out of character for me. My co-workers made me take a break. Once I got alone in a conference room, I started sobbing. I just broke down crying. I was overwhelmed and felt awful. I let my supervisor know that I couldn’t stay for the rest of my shift. She’s an RN, and she knew I was unwell, so she graciously let me go home. I was never able to return to work. It has been heart-wrenching for me. Weeks of sick leave turned into months, and then my short term disability was over. I was “let go” due to benefits running out. If I am well enough to work in the next few months, they said they would be willing to hire me back. Right now, I just don’t think that’s realistic for me.I was (mostly) bed-bound for a few months. I was exhausted all the time and I could barely keep my eyes open. I couldn’t have very long conversations because I would run out of breath and experience chest pain when I spoke. All I was able to do was watch TV, eat, and sleep. I struggled to shower because standing and lifting my hands above my head was painful. I used an ice pack on my chest, but I couldn’t get the pain to go away. I didn’t know that a high heart rate was causing the chest pain because my doctors never looked closely at that part of my vitals. Once they saw my heart was anatomically healthy, they dismissed my chest pain.I was informally diagnosed with POTS in April 2014. Before that, I had a terrible ER visit. I’ll spare you the details, but I was dismissed as overly anxious and I felt belittled by the staff that treated me. Thankfully, my nurse practitioner saw was determined to help. I went through a battery of tests, which took a good amount of time. I had a sleep study and a narcolepsy test done to see if I had a sleep disorder, but nothing but insomnia was found. I had a few chest x-rays, blood work, and more EKGs done. Finally she did a “poor man’s tilt table test” out of desperation. She took my vitals laying down for 3 minutes, then sitting for 3 minutes, then standing for 3 min. My heart rate went from 95 sitting to 150 standing, and my blood pressure was low. She referred me to a neurologist and he did a normal tilt table test to confirm the POTS. I became tachycardic very quickly after being moved upright. I actually had to end the test early because I was afraid I’d pass out. My neurologist also did an MRI of my head/spine and I had an event monitor for 30 days.
Doctors and communication: When my symptoms began, I had a family doctor who didn’t believe that I had anything unusual going on. I’d dealt with fatigue and anemia for years, but she just didn’t believe that a healthy-looking 20-something could be ill. I was shuffled around her practice, from doctor to doctor, since she was rarely available. I decided I needed to see someone else. I talked to a few friends about their doctors, and I started going to a local nurse practitioner.It’s really important to find a medical provider that you trust. My NP has never doubted that I know my body better than anyone else. She listens to me and takes me seriously. She saw my rapid decline first-hand and she trusts that I will be honest with her. Before I visit with any medical professional, I make a list of my most troubling symptoms and my top concerns. I take the list with me since I tend to easily forget things. I have found that the more specific I can be, the better. I try to specify when certain symptoms began, if there’s anything that triggers them, the intensity, etc. I also keep a log of my blood pressure, temperature, heart rate, and what I was doing before I taking my vitals. At first, I took a reading every day. I varied the time of day and activity so that my doctors would have some variety. Now I take a reading every few days, or whenever I am symptomatic. I record all of it on a sheet in a binder.After a few terrible Urgent Care and ER visits, I have developed a system. I have “Medical Preferences and History” document saved on my computer that has all of my basic information to give to medical staff in case of emergency. It makes it much easier to have it on paper so that I don’t have to remember everything in a crisis. I also have an accordion folder that has separate sections for medical records, medical bills, insurance statements, work disability paper work, etc. I take the accordion folder with me to every appointment and I keep my “Medical Preferences” document in the front of the folder. I also have a keep a copy of a “Medical Professionals Guide to POTS” in the folder to give to medical staff unfamiliar with my condition. Here’s the website for helpful handouts: http://www.potsuk.org/download_pots_leafletsSodium and Fluids: I drink about 64oz of Gatorade or Nuun drinks a day, and I also drink about 36-40oz of water. That’s a total of about 100oz/day. I had an app on my phone to track my fluid intake until I got used to it. It’s a lot to drink, and I go to the bathroom a lot. I also take 2-4 Thermotabs a day. They are an over-the-counter sodium/potassium supplement. I order mine online. Taking the Thermotabs helps me get enough sodium without over-salting my food.Driving: I don’t do a lot of driving these days. For a while, my neurologist limited my driving because I was dealing with feeling lightheaded and dizzy most of the time. I also deal with brain fog, which impairs my ability to make quick decisions. Right now, I drive short distances every once in a while. I make sure to plan ahead and hydrate a lot the day beforehand, and I don’t drive if I feel unsteady. I have to ask for help to get to and from a lot of my appointments. My goal for 2015 is to be able to drive 10-15 minutes on a regular basis.I hope that I’ve been able to help you as you start the journey of living with POTS. Please let me know if you have any questions about managing this illness. I am always happy to share what I’ve learned to help other people.Sincerely,Danielle(Just another POTS patient)
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.
I have a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS). I’ve benefited greatly from medication and physical therapy, but I am always looking for more ways to help myself manage my illness. I first met Ashlie through her blog when I won a contest. I received a 5mL bottle of Wild Orange essential oil and Ashlie sent me a few other samples for managing POTS symptoms. Ashlie also has dysautonomia and she’s spent time learning which oils help her most. Thanks to her, I found oils to help with my abdominal pain, nerve pain, and anxiety. You can read more about how I use essential oils here. Or you can comment with questions for me. I’d be happy to share what I’ve learned with you.
On December 16, Ashlie is leading a webinar about managing dysautomia symptoms. I’ll be attending, and I want to share the opportunity! I encourage you to consider learning from Ashlie. She has a heart of gold, and she truly wants to help people live healthier lives. Click the link below to read more about the webinar.
To learn more about doTerra essential oils, click here or attend the webinar on December 16!