How Chronic Illness Has Taught Me to Embrace Slowing Down to Reach my Goals

Bubble bath rewards for little goals reached

I have always been a goal-oriented person. I have always had clear goals, both short-term and long-term, and have taken great joy out of achieving them.

I have learned to enjoy having goals and dreams, but not to determine my worth on how many of them I’m able to meet: and, especially, how quickly I’m able to meet them.

My junior year in high school, I took Introduction to Sociology, and one of our last assignments was to write a letter to our future selves, to be opened in five year’s time. We were supposed to write about our goals and dreams for the future. Most of my classmates were probably realistic: college, careers, maybe marriage. I am sure I mentioned those things. I also mentioned publishing a novel and meeting Oprah.

Of course, when five years from them rolled around, not all of that letter had come to fruition. I was a junior in college and doing well in school, so that had happened, and was in a really solid relationship with the man who would end up being my husband. I was still friends with my high school friends. But I had not, obviously, published a novel or been on Oprah.

Still, I made really fast progress on most of my realistic goals: But that was all pre-chronic illness.

I’ve never been a totally healthy person. However, I consider what I call my “chronic illness journey” to have begun when I was pregnant with my first and only child, my daughter S who is now four.

Having my daughter totally turned my world upside down in so many different ways, and I would never change it for the world.

Before I had S, I had a “five year plan” between getting married a week before my 22nd birthday (2 weeks after my college graduation ceremony, though I officially graduated a semester earlier) and trying for our first child. I had already been accepted for seminary, and my husband to law school. I planned for us both to get well-established in our careers and buy a house and build roots in a community before we started a family and had at least two kids.

Of course, that all went out the window: exactly five years early. My husband and I will be celebrating our fifth anniversary in early May. Our daughters is 4, and came a few weeks early.

S was never part of the plan–but she was a delightful surprise. Chronic illness, however, was a less-delightful surprise. If having a daughter made my plans take a U-turn, the illness it brought out brought them all to a screeching, dramatic halt: or so it seemed at the time.

Despite the brakes my chronic illnesses have thrown on, however, I still have learned that I can meet my goals and dreams: just at a slower pace. In fact, that might actually be a good thing, because now I can really “stop and smell the flowers” and appreciate the progress that I’m making.

Two seemingly-opposite tools help me keep checking off boxes, albeit at a much slower pace. These are planning and flexibility.

There are two types of planning I employ in my everyday life: short-range, and long-range. Back before I was sick, I was much more of a long-range planner. I had those big ambitious plans, but no real idea of the steps I would take to get there, at least not the little ones.

Now, I still have big goals. Admittedly, it took some time. When I first started getting really sick, and then started putting labels on my illnesses, I went through a long mourning period, during which I wondered if I should even have dreams and goals for my life at all.

They definitely changed. Having S changed my career ambitions once, and chronic illness changed them again. For a while, I was worried about how long I would even be able to work. Luckily, I have made a lot of life changes, thanks to a lot of good doctors and solid diagnosises, that have alleviated those fears, and I also have some brand new, exciting dreams on the table.

But, the difference about these goals and goals of the past is I’m not even putting them on a timetable: I’m recognizing that they can take as long as they need to take, and if they need to change or evolve into something else because of my illness, that is OK.

The most important piece of advice I’ve ever gotten is from my friend who is like a brother to me, and it’s something I’ve mentioned here before but it’s worth reiterating because it’s so, so important. I am not defined by my accomplishments. I am not defined by how fast I meet my goals, or if I meet my goals at all. That’s something I’ve learned since my chronically ill journey has started, and something that has helped me embrace this new, slower pace.

That’s why the second word that has been essential in my goal-making process has become “flexibility.” This is true in both those long-range goals and my short-term goals (which I will get to in a minute.) Sometimes, flexibility means saving something for the next day. Sometimes, it means realizing it’s not going to work altogether. It means knowing that it’s ok to be upset for a bit about having to abandon something I really wanted to do or miss out on something, but know that it was ultimately for my health and overall well-being. That way, I’m able to move on and have a positive outlook about it.

Many of my goals are very big and nebulous, out in the future with no specific time table since I want to do what’s best for my health and prioritize my family, faith, and self first: going back to school, switching careers, publishing a novel and series. But day to day, I focus on much more achievable “micro goals.”

With chronic illness, I have found that it is much more achievable to get what I want to get done accomplished when I break everything into very bite-sized pieces, and only push myself to do a few bites per day. I can do a few more bites if I’m having a good day: or, if I’m sick on top of chronic illness, or some other circumstance arises, maybe I just need to cut down to the bare essential number of bites.

For instance, I’ll plan out each week tasks that I have to get done: bills I have to pay, work tasks I have to do in addition to my regular shift, things I need to do for my daughter, medications I have to pick up, appointments; and things I’d like to get done. Anything I can break up into a smaller task I do. I do cleaning tasks in short intervals. It often takes me multiple days to write a blog post because I write it in 5 or 10 minute chunks at a time. I’ll call the pharmacy one day to refill a prescription and pick it up the next, even though it’s ready that day. Might not be the fastest way of doing things, but slow and steady wins the race! Of course, anything urgent, I get done when it arises, which is why it’s even more important that I conserve energy with non-urgent tasks for when these urgent needs and emergencies come up.

I am also sure to plan–and record!–self-care. I will go more into my recording processes in a future post: writing what I do down helps remind me that I actually am working toward and accomplishing something, even when it feels like I’m not. And even though sometimes it feels unnecessary, it’s important for me to keep self-care habits, like rest, taking time to read, recharge, plan, do things I enjoy, read my bible, etc., because I know that without these things, it is much, much harder, if not impossible, for me to keep up the other goals.

In addition to breaking my goals into small, achievable tasks, I motivate myself–especially during the hard weeks and for the hardest tasks–with “mini-rewards” and “mini-celebrations.”

Sometimes, especially when things are going well or it’s an accomplishment I’m particularly proud of, simply completing something is intrinsically a reward in itself. Or sometimes it’s a goal with a built-in reward, like a good score on a test or a graduate school acceptance (not that I’ve gotten any of those recently.)

But getting through a really hard work week with a kid who gets hurt at school, a flat tire, and a double sinus infection does not intrinsically come with a reward. Calling to talk to insurance 20 times in a weekend when you have phone anxiety? Has to be done but, you’ve got it, no built-in reward.

So I motivate myself with little things. I buy myself nice bath products and reward myself with bubble baths. I’ll read a chapter of a book (or at least a few pages) after I do a load of laundry. I started a slow collection of Disney Tsum Tsums I’m displaying on my dresser as a motivator (I got one as a gift and have bought two so far.) Every hard week I get through or particularly hard thing I do, I get to pick one out. I haven’t been on a vacation in over a year and rarely do big things for myself, but little things are nice motivators to keep pushing through.

In my next couple posts, I am going to be talking about small, concrete ways i achieve my goals slowly but surely. These include using a planner and multitasking.

I might not be in the place I saw myself back in high school. The pace my life is taking is slowing down, but honestly, every day it does, I am thankful it does. I am thankful for the times I am able to truly catch my breath and be thankful for all the things my life is full of. Chronic illness may have changed the pace of my life, but it hasn’t changed the beauty of it.

Advertisements

How to Keep Moving Forward When Life Wants to Get You Down

The day before Valentine’s day, it was a lung infection and a prescription for an antibiotic I turned out to be allergic to. A week of hives later, there are now four classes of antibiotics I’m allergic to and another I shouldn’t take except in emergencies because of my connective tissue disorder.

It was a month-old flu, that I got in January, that led to that lung infection. Less than a month later, on March 3, I woke up on Saturday morning with what I thought was one of the worst migraines I’d ever had.

Basically, all this leads to me being sick practically all of 2018. Time has flown by, mostly because it has been a fog of illness and new fun symptoms on top of my regular chronic illnesses.

Then, on top of that, after a week of a sinus infection on top of a double ear infection when all I wanted to do was go home and sleep, I blew a flat tire on my way home from school. It had a stripped lugnut, all the mechanics in the tiny city were busy, and it took up a day and a half to get it changed. My head pain was excruciating through all of it.

In my last post, I wrote about acceptance. Accepting my chronic illnesses as part of my life and knowing my body and how it responds to said illnesses is the most important thing I need to do to reach my goals and live a full life with chronic illness. But “muggle illnesses”–something that some chronically ill people call short-term sicknesses that everyone get, like colds and flus and infections–really throw wrenches in the works.

I am a goal-oriented person. Each year, I choose a word that is my goal for the year. I am constantly trying to improve myself in ways big and small. This Lent alone, I made three small goals. And here comes sickness, and all I want to do is lay in bed and feel absolutely miserable and sorry for myself.

So, what’s there to do?

The pace changes when I’m sick. Sometimes, it feels like it nearly stops, or at least slows to a crawl: and even that crawl, the crawl of necessary daily duties (parenting, work, keeping the house and one’s personal appearance in some sort of ordee) seems insurmountable.

On top of that, my big life goals, my husband’s big life goals, so many potential changes in the future, loom and hang. But how can I possibly think about those when the present seems so insurmountable, when I can barely think past the pressure in my sinuses and the pounding in my ears, when the pain won’t stop?

The answer is that one tiny step, the tiniest of steps, is still a step forward.

I have a print on my wall, by my favorite inspirational mental health artist The Latest Kate (who I have written about before) that reads “progress is progress no matter how small.” I try to remember it during these periods of life getting me down on top of everyday chronic illness. Even when it is hard to see, I am still making progress.

Healing is progress. If I wasn’t resting, wasn’t taking care of myself, wasn’t taking my medicine and treating myself well, wasn’t seeing the doctors and doing the other necessary steps I need to do to get better, I would be sicker a lot longer. Yes, this doesn’t feel like progess, but it is. I’m not going to reach any of the goals I want to in the long term if I don’t do what I need to do to restore my body to the health it is normally at in the short term.

Each task I complete every day is progress. It might not seem like it. But it is a step forward. Every day is a new one. It is a day where I have a chance to learn something new and maybe improve myself: but if nothing else, maybe my sinuses will clear up a little bit.

Progress is progress. I might have to take tiny steps towards my goals some days, and they might seem meaningless. But everything means something, and the more I try, despite my struggles, the more I win the battle against the random life events that knock me down.

The Advice I Would Have Given Myself When I Began My Chronic Illness Journey

The me I’m getting to know

Recently, I was asked, in a wonderful chronic illness group I’m a part of, what advice I would give to someone with chronic illness. Giving advice to people with chronic illness is tricky. Chronic illnesses are all so different; even two people with the same illness can react very differently. Some people with hypermobility disorders like I have are running marathons; others struggle daily even getting out of bed. I am somewhere in the middle, though even that varies day to day.

And most people with chronic illness are no stranger to mostly bad advice. I haven’t heard too much personally; I’ve been lucky in that regard, but many of my chronically ill friends have heard some doozies. “Just think positively and your illness will go away!” “You need to be doing yoga!” “You need to take this supplement I just happen to sell!”

So, instead, I framed the question as what advice would I have found most beneficial to receive back when my chronic illness journey began. It’s taken me a while to learn this, but the #1 thing that helps me in my chronic illness is simple in theory, but difficult in practice: get to know yourself. Specifically, get to know your whole self, including and especially the illnesses that are a part of that self.

I always thought I did know myself. I’ve always been fairly introspective and self-aware, often too much so; to the point where I would get stuck in my own head.

But while I knew a lot of different parts of myself, one part of myself I never truly got to know was my ill self: I never truly thought about how my chronic illnesses were a part of me, and integrated them into my experience.

I was treating my illnesses like they were something external. Because of this, I often got down on myself whenever my illnesses affected me. I treated it like it was something I could overcome, and since I wasn’t overcoming it, there must be something deficient in me.

Every time I got a flare or my low immune system made me catch another illness, the way I felt about my illnesses would rear its ugly head. It was clear they were affecting my self-esteem in such a negative way. I hadn’t accepted that my illnesses were here to stay, that they were a part of me, and because of that, I was making myself more miserable than the illnesses were.

It was clear what I had to do: I had to learn to truly accept myself, and know myself, and a huge part of that was accepting all my illnesses, all my chronic conditions, as part of what makes me who I am.

There are two things acceptance didn’t mean, so I want to make that evident, because acceptance can sometimes get blurred with these two things. Acceptance didn’t mean liking my illnesses, and it didn’t mean giving up, either.

I don’t like that I get migraines and joint pain every day. I don’t like how easily I get fatigued and out of breath regardless of how long I work to build endurance. I don’t like that I have daily allergic hive reactions to seemingly nothing.

And I’m not just going to lay down in defeat and not try to minimize the side effects of these conditions. I’m not going to give up taking the medications that help me, and I’m not going to give up looking for other ways to manage my conditions.

What it does mean that I’m no longer treating my illnesses like something external, something I can overcome, or a character flaw. I’m treating them like the parts of me they are. They are as innate in me as my hair color (…when I’m not dyeing it) or my eye color or my height.

I could every day get down on myself for being 5’11”, but no amount of self-loathing is going to make me 5’2″. I am tall. I have spent most of my life accepting that I am tall, and conceptualizing myself as a tall person. My height has given me some natural limitations through my life.

And now, I’m trying to think of my illnesses the same way I have always thought about my height. I have Chiari malformation. There are things this limits. I need to avoid back of the head contact. I get many different kinds of headaches and migraines, which limit some social situations. I require more rest than a lot of people. I have to do things in small pieces (especially housework.)

These aren’t things to overcome, like I’ve tried to do in the past. They are just realities of who I am. And instead of fighting who I am, I am learning how to work with who I truly am. I am learning how much I require pacing in my life, and better pacing my time and balancing rest and work.

Accepting my illnesses has helped me know myself a whole lot better, and I only wish I would have gotten to know this me, the ill me, the full picture of me, earlier. Because honestly, this me is pretty great. She is incredibly empathetic. She knows what it is like to struggle, and can pick up on others struggling. She is caring, and a good listener. She is kind. She is smart, a quick reader, and a great writer. She is a loving, devoted mom, wife, educator, and caregiver. She is an interested, eager to learn student. She walks in her faith and aspires to grow more in it daily.

And yes, she’s ill, too.

Lent and my Chronic Illness

Today, I am writing about something specifically from my own Christian worldview, but many of the things I’m writing about, about adding new habits and patterns or giving things up, while still having chronic illness, could be applicable to anyone with chronic illness who wants to make changes in their life.

We are now a few days into Lent, which began, this year, on Valentine’s Day, February 14, with Ash Wednesday. Lent is a season in the Christian calender that begins with Ash Wednesday and ends with Easter Sunday: 40 days in total, not including Sundays. It mirrors Christ’s 40 days of fasting and prayer in the desert directly after his baptism, right before his public ministry started.

Many Christians commemorate the Lenten season by choosing to either give something up or add something. The goal of such an act, for a Christian, is to get closer to God. For instance, if one were to give up social media, they would spend the time they were normally on Facebook praying, reading the Bible, or other more fruitful endeavors.

One could also give up something they feel is distracting them from their faith, or keeping them from their God-given purpose. For instance, one year back in high school I gave up energy drinks. I had become quite dependent on them, drinking several a day, and they were detrimental to my physical health. In 1 Corinthians 6:19-20, the Bible says our body is a temple, and I realized I could not fully use my body as God intended if I continued doing something I knew was destructive to it. I gave them up and haven’t drunk them since.

I have been praying for a while now about what, if anything, I should do for Lent this year. Giving things up and taking on new commitments, even for noble purposes, can be more difficult when you have chronic illness.

I remember the last time I tried fasting. I was in high school, and participating in a day-long fast in order to raise money to help those in hunger all over the world. About 18 hours into the fast, I became extremely ill. I ended up having to break the fast, which helped some, but fasting also lowered my immune system, as any big change is prone to do in me: I get sick super easily. I was sick, and also likely in a flare (none of my chronic issues were diagnosed yet) for the next few weeks.

And another time, not for Lent but because I was trying to make “healthier” choices in my life that I thought would help my fibro (before I learned that fibro was only a comorbid condition of the hypermobility disorder and Chiari malformation I had not yet been diagnosed with), I gave up coffee and any tea with high caffeine (like black tea) and replaced them with drinking large quantities of water.

A few days in, I was hit with one of the worst flares I’ve ever had. I later learned that caffeine was something that we had successfully used to treat the symptoms of my Chiari when I was first diagnosed in 8th grade (so successfully that I forgot about the diagnosis!). I started drinking caffeine in moderation again, and feel so much better! I also learned that, due to my dysautonomia, large amounts of water actually make me sicker, and I need electrolytes in my water to make me feel better.

But I have also given up and added things that have made a tremendous positive impact on my life. Last August, for health reasons (mainly migraines, including abdominal migraines), I decided to extremely limit my consumption of alcohol. Since August, I have only drank 4 times. This was an extremely positive choice, though I didn’t do it at Lent in that case.

Last year for Lent, I worked on implementing a daily Bible reading practice. I’ve tried to read through the Bible before, or read the Bible everyday, but usually these well meaning practices have gotten abandoned a few weeks (or less!) in. But successfully spending quiet time in the Word everyday during Lent was the ticket for me to learn how to have an everyday practice. At first, after Lent, I missed a few days here and there, but now that it has become such a well ingrained habit, the tracker on my Bible app says I have read 102 days in a row.

If you are chronically ill and debating giving something up or adding something, whether for Lent or otherwise, it is important to consider whether it is sustainable for your own body and its unique needs. Some things that a healthy person would be able to give up may not be plausible for you. For instance, every chronically ill person has unique dietary needs. Giving up red meat may not be a good choice for you if you struggle consistently with low iron. There are many chronically ill people who are limited in diet and would not do well on, say, a vegan diet.

All of my goals this year are adding something rather than giving something up. Adding something can be much easier than giving something up, and I have found that it coincides often better with a life of chronic illness, especially if what you’re already doing habit wise is necessary for your life.

A reason to choose to give something up instead would be if you’re doing something in your life that keeps you from God (from a Christian perspective) and/or that keeps you from flourishing; especially if it’s something that makes your illnesses worse. If you’re eating in a way that makes you sicker and a dietary change is going to even possibly help your symptoms, then it’s a great thing to try.

When choosing a goal, it was helpful for me to think; is there anything I already do in my life that I know is good for me, but I want to do more consistently? If it’s something I’m already doing in my life, I know it’s something that’s good for me and my chronic illnesses. It’s also an easier baby step into life change than adding something totally foreign, like an exercise regimine for someone who is fairly sedentary. Any big changes all at once are also prone to sending me into a flare, so I try to implement change slowly and steadily.

This year, I have three goals that coincide with the season of Lent. Like my last year Bible reading practice, I am hoping that these are things that will continue far longer than Lent. While I am doing three things this Lenten season, I would urge you, if you’re new to a regular goal-setting, habit-keeping process, especially whilst being chronically ill, to start small and just choose one.

Only one of my three goals was originally chosen for Lent; one is something I wanted to start at the beginning of the year but hasn’t happened yet so I figured now is finally a good time for it, and the other is something that my doctor recommended the day before Lent that just happens to fall into this season.

My first goal is to consistently clean my house or do some type of housework at least 10 minutes a day. Doing housework consistently is a challenge for me as a working, chronically ill mom. When I get home, I am exhausted. I tend to do cleaning in big, dramatic bursts of cleaning an entire day for hours, which isn’t usually good because it can send me into a flare. My goal, then, is to build a pattern where I’m doing some concentrated housework every day. Some days it will obviously be more than 10 minutes, but 10 minutes is manageable even on my worst days.

My second, a health-related goal recommended by my doctor, is to focus on gaining weight. I lost a lot of weight in early December because of illness, which was alarming because I am already underweight. I am working on finding healthy foods that work with my body (which can respond badly to a lot of things) that help me gain weight healthily.

My third is to attempt to write at least one blog post a week, consistently. I blog like I clean: I get bursts where I blog a lot, and then disappear for months. I want to work on being more consistent with my blog writing.

As I wrap up this post, one last piece of advice I would give is to not be too hard on yourself if you mess up on your goals, and to continue to evaluate whether or not it is a good goal for your life and your chronic illness(es). If something is clearly not a fit for your life, isn’t helping your relationship with God, and is making you sicker, there is no shame in giving it up. Don’t feel like you’re failing by not sticking to all of Lent: if it’s not productive for your life or faith, you’re causing more harm by sticking to it and doing more good by abandoning it.

And if you find a practice that is good for you, your health, and faith, but you go into a flare and can’t do it one day, don’t feel like you’ve failed and have to give it up. Grace is always sufficient, and there’s always tomorrow to try again.

My One Word Resolution for 2018: Light 

Last year, 2017, was my first year picking a word to shape my year. My word was well, which I wrote about here and here, as well as mentioning it regularly throughout my other posts. 

Now, as 2018 dawns, it is time to choose a new word, something that has been in-process for a while. I started thinking about what word to pick in October, when I heard the Christian song “Light Shine Bright” by tobyMac featuring Mandissa. The first line is 

Lights shine bright everywhere we go Music for the people to illuminate the soul.” 

So I started thinking my word for 2018 was going to be “bright.” I thought this for several reasons: because I want to live in a way that was bright and inspiring, an advocate for chronic illness and for my faith; because I am optimistic 2018 will be a bright year; and because I want to continue to focus on Christ’s bright light as the number one thing in my life. 

But then, the end of 2017 began to get heavy, especially health-wise, and “bright” didn’t feel sufficient. I needed a new word, one that helped me refocus my anxiety and focus on what was truly important in my life. So the word “breathe” came to mind. I often forget to really breathe correctly–deep, calming breaths–and doing so not only really refocuses me, but is a spiritual act in itself. Focusing on my breath reminds me of my connection to God and what is truly important in my life, and how tenuous the unimportant, temporary stresses are. 

But again, the word “breathe” didn’t feel like enough for the promise that I feel like 2018 holds. 2018 is a year where I really want my word to challenge me, to help me focus on all the promise and adventure and momentum that 2017 led up to. I liked that about “bright.” 

The last word I considered before I stumbled upon my 2018 word was acceptance. Acceptance of myself as a permanently sick person and integrating that into my identity as not a weakness but a strength and something I’m alright with is a major personal goal of mine for 2018. But I was searching for a word that brought together all these elements: bright, breathe, acceptance. 

One of my favorite Christmas songs is “Have Yourself a Merry Little Christmas,” and one of the lines early in the song is “let your heart be light.” That feeling of lightness is exactly what I want for 2018: and, thus, I had chosen a new word. 

The word light is able to capture multitude meanings at once, which is why I selected it. From a faith perspective, light is often used a metaphor for Christ. Choosing the word light helps me refocus and fix my eyes on what is truly important, which,is first and foremost my faith. Everything else is an outpouring of that. 

Light also means the opposite of heavy, and lightening of burdens is something Christ does as well. My focus passage for 2018 is Matthew 11:28-30. Both The Message paraphrase and the CEB translation really resonated with me: 

“Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.” — Matthew 11: 28-30 (The Message) 

“Come to me, all you who are struggling hard and carrying heavy loads, and I will give you rest. Put on my yoke, and learn from me. I’m gentle and humble. And you will find rest for yourselves. My yoke is easy to bear, and my burden is light.” —Matthew 11:28-30 CEB 

The second meaning of light is what I wanted to capture in the word bright: being a shining light in the world. I want to use the momentum and wellness I built up in 2017 to continue growing and learning so that I can help others through any positive way I can. I want to shine my light in both big and small ways: as an educator, as a writer, as a Christian, as a chronic illness advocate, as a mom. If any new pathways open up to make a greater impact open up, I want to be brave enough to pursue them. I don’t know exactly what 2018 will hold, but I am excited for the ways God will use my light. 

The other meaning of the word light that I’m focusing on in 2018, as I mentioned with my focus verse above, is the opposite of heavy, and I’m going to be intentional about ways to let my heart and life feel lighter going into this new year.

I am working on gradually cleaning out, going through, and getting organized throughout this year, letting go of things that weigh me down so I can be lighter and more focused on the things that do matter. Some of this is spiritual and emotional: working through letting go of anxiety and hang ups over illness, for instance, like I mentioned above. But some of it is literal and practical as well. 

On the practical side, I want to focus on minimalism and cleaning out and making space this year. I have already started cleaning my house and purging out things we aren’t using, and helping teach my daughter that art as well: she’s only 4, but I started teaching her for the first time about donating her old toys she doesn’t play with so she would have room for her new stuff. 

I’m expanding that cleaning out and minimalism to my online world and habits as well. I left a bunch of time wasting, negative Facebook groups to lighten up my time and clear up my priorities for what is truly important. 

The last few years, 2013 on, have all brought major twists and adventures that I did not see coming.  I have a feeling 2018 will be no exception to big changes and adventures. But with the word light as my guide, I think 2018 is going to be a bright one.  

How I Achieved Wellness Despite Chronic Illness in 2017

Print by The Latest Kate

I can’t believe it’s already the end of 2017! 2017 was a year of change and growth for me. It was the year I left the job I moved to this city for and started a career in a new, while adjacent, field. 

2017 was also the year I started blogging. I originally started this blog to chronical my journey to become a self-published author, and it was my goal to self-publish my novel, Panic Cat, by the end of 2017. 

Alas, the best-laid plans of mice and men… 

My illness ended up taking center stage in 2017, and I had to set my novel aside in order to prioritize focusing on my health. 

But I still was able to utilize my blog well, though it ended up being more of a chronic illness blog than a writing blog. One of my very first posts on this blog, which ended up being my first post published on The Mighty at the beginning of 2017, was on my one-word resolution for 2017, which was well. While obviously no one is 100% successful at something all the time, the word well really framed my year. 

I was able to focus on wellness, despite my chronic illnesses, and I was able to do so in a number of different ways that have not been top priorities other years. I believe the major reason I was so successful at them this year is because I was so focused on being well and making holistic, all around wellness a priority. 

One of my top ways I made 2017 a year of wellness was by prioritizing self-care. I have a print hanging up above my dresser in my bedroom by one of my favorite artists and mental health activists, The Latest Kate (I talked about another of her prints here) that reads “Self-care is smart. Self-care will lead you to success.” Self-care, to me, has been the key to wellness in 2017, because it is linked to so many different things.  

Self-care has not always meant things that are comfortable. It has also meant self-examination and self-advocacy. Wellness has meant prioritizing my health in 2017. 

That kind of self-care is rarely fun. It means at least ten minutes a day of taking pills and making sure I take the right ones at the right times, and at least one, if not multiple, visits, and often phone calls, to the pharmacy each month. It meant many doctors office visits, both to my primary and to specialists. Some brought answers and breakthroughs. Some were frustrating and felt like a waste of six hours of driving. It meant lots of tests, including 4 MRIs. And it meant learning to advocate for myself with medical, insurance, and billing professionals, something I’ve always hated doing but that proved necessary. 

This kind of self-care has admittedly not been my most fun part of 2017. But this kind of self-care is also a huge step in the wellness direction, because it is not always something I have made a priority before 2017. Most of it was my own discomfort and anxiety about standing up for myself and being my own advocate. It also can all just get super overwhelming, and you wonder, especially when the symptoms are relatively managed, if it’s all worth it.

But with the word wellness as my guide, I wanted more than “relatively managed” this year, and am really proud of the strides I have taken for my own health, strides I am sure that will take me far into the new year.  

I have also adopted other self-care habits that I have written about. One of the best, and most intentional, is my daily scripture habit. One of my forces in choosing the word well at the beginning of 2017 is the hymn “It is Well With My Soul,” and my soul wouldn’t be nearly as well as it is without plugging daily into scripture. I usually do it to start my day, as my mornings don’t really feel started without it–it has become as essential as my cup of coffee!–but if I end up sleeping in (I leave for work very early!), I’ll do it after my first shift (I normally work a split shift during the school year). 

Another big self-care wellness habit that is a work in progress, and enables me to do any self-care at all, is learning to shelve guilt. I wrote a post earlier this year on learning to give myself grace rather than guilt, and it is grace that continues to carry me through the year and into 2018. I am not perfect, but grace reminds me that I am worth taking care of. Guilt is a worthless emotion. It does not solve anything, and usually the things I am guilty about, like my illness, are things way beyond my control. Even when I do make mistakes, though, I am working on remedying the mistakes through action plans, rather than dwelling on them through guilt, and then not beating myself up over them. I am still worthy of self-care, even when I make inevitable human mistakes. 

My resolution towards wellness in 2017 has also enabled me to spend much more quality time with my daughter and extended family. Part of being well is prioritising the right things, and one of those biggest things is family. I have had so many special weekends spent with my daughter this year, and those were achieved despite my illness. We were able to do so many things that in 2016 I didn’t have the energy, health, or spoon reserves for. 

We got a zoo membership for my birthday in May and went to the zoo nearly every weekend over the summer. We went to multiple free events, including seeing sharks traveling from an aquarium that came to a local library. We traveled out of town to see family, often without my husband, trips that I never would have ventured on in 2016 with how volatile my health was. I was also able to attend several out of town weddings with my husband, events I had to skip the year prior. 

What made all of this possible was self-care throughout the week, boundaries, and knowing how to allot my spoons. Thanks to wellness, my illnesses are nowhere near cured, but they are a lot better managed. I will be likely taking a huge container full of pills for the rest of my life, but the idea of wellness has helped me come to terms of it. Being well is way more than just physical health, and 2017 has taught me that yes, I can certainly be well indeed, even though I am chronically ill. 

 When I made wellness my resolution, I never imagined that part of that journey would entail, except for a few very rare exceptions, giving up alcohol, likely permanently. When you choose a word, you never really know where it’s going to take you. I’ve been meaning to make a post about my personal decision to stop drinking, but haven’t gotten around to it. I definitely don’t judge anyone else’s choices to, but with my neurological conditions, especially my Chiari and migraines, I decided to try cutting it out, and it has made a big difference in my symptoms. 

Something that is a work in progress, but that I have really made progress on in the last few weeks especially is accepting that I am, and always will be, sick, and that this is OK. This is related to guilt, but there is more to it: it’s an identity thing, which is why it’s going to take more than just this year to unravel. Accepting one’s self as a sick person, in some ways, feels like admitting failure: and from a Christian perspective, almost seems sacreligious, like you don’t believe in miraculous healing. While I do believe in miracles, I also believe, more likely, I have these chronic illnesses for life. But I do believe that just discovering this issue was a major wellness breakthrough, and accepting the fact that I’m sick as part of my identity will be something I work on more in 2018 (and  be incorporated into the word I chose!). 

I could not have achieved any level of wellness without a totally incredible support system. I live fairly far from a lot of my family and friends, and chronic illness sometimes makes me not the best on filling them in on my life, but they are so constant in their love and support. My husband drives me to appointments and has given up so many countless hours of sleep, working night shift and still taking on many extra demands. My daughter is empathetic and sweet much of the time when I am flaring or extra sick. My sister, who lives in Michigan, is the first person I tell when I am freaking out about something medical or have a new test result or a new appointment. She is, and always will be, my advocate and the one who taught me to be strong, along with my mom. My mom has handled many frantic phone calls from me and has given me sage advice and a listening ear, along with lots of motherly love. My mother in law has dropped everything so many times this year to drive 3 hours to help us out. I have friends who are like family who live states and countries away who encourage me to take time for and care for myself. I have support groups, church, and caring coworkers. I have been thoroughly surrounded by my village this year, truly more than any other year. 

In my next post, I’ll be talking about the word that I have chosen for 2018, but until then, I am proud of the progress towards wellness I made in 2017, and I look forward to continuing it into the new year and beyond. 

A Book for my Chronically Ill Soul: Choosing Real by Bekah Jane Pogue

Reading is something I absolutely adore, but it’s something I have struggled to find a place for in my life in the last year up until  very recently.

 I read a lot from an early age, thanks to my mother. One of the earliest gifts my mother gave both my sister and I was a voracious appetite for reading. Mine came slower than my younger sister’s, my illness/disability being part of the struggle. It was a slow journey for me  learning to read. When I was diagnosed with attention deficit disorder (ADD) in the first grade and medicated, my ability to read was jump-started, and so was my love for the written word: one of the greatest loves of my life. 

I would often read multiple books a week: I would get in trouble in class for reading a book under my desk when I was supposed to be doing something else. My love for reading served me well as a student, going straight from a Bachelors in Religious Studies with a minor in English to a Masters in Divinity with a specialization in Youth and Young Adult Development. I was reading a ton: but very little of it was by choice. Most of what I read was mandated  by a syllabus. 

Because most of that reading was mandated, with one exception, a fiction series I really got into my last semester of grad school (the Longmire series), I had really gotten out of the practice of knowing how to choose and stick to a book that wasn’t assigned to me. 

As I’ve talked about a lot on this blog, my 2017 one-word resolution was “well.” Choosing to be well–committing to wellness, even when I cannot choose physical health–was the reason I started this blog in the first place. 2017 is nearly over, and it has taken a very unexpected trajectory. 

Reading has been a huge part of my wellness throughout my life. While I ha’ve not always been “well,” a lot of wellness I did habe could be attributed to reading. Reading was one hobby I’ve always been able to do, even while my illnesses have limited me from many others. I’ve had migraines since before I could even describe what a migraine was (at least early elementary school). I often sat out in gym class because of physical limitations from pain (multiple undiagnosed conditions). But I could retreat on the sidelines with a book, disappearing into a fantastical world where I wasn’t sick. Reading made me well, even when I couldn’t be healthy. 

One reading habit that has significantly contributed towards my wellness in 2017, and I have talked about multiple times on this blog, is my daily scripture reading practice, mainly using the YouVersion Bible App. All of the plans on the app are free, and many are condensed versions of books by various Christian authors. That is how I found one of the most inspirational books I have ever read, as a young Christian wife and mother battling chronic illness: Choosing Real by Bekah Jane Pogue. I was so incredibly inspired by the book that I chose to do a little write-up on it, hopeful that it will help others as much as it helped me. 

A little disclaimer: while many of my posts are broad and applicable outside of a specifically Christian worldview, this book, and most of the other books I will be reviewing in the near future, write from a specifically Christian worldview and are most pertinent to Christians with chronic illness. I understand that not everyone who reads my blog is a Christian with chronic illness, and I urge you to read books that resonate with your own traditions and that can help you view your illness(es) through that perspective. 

I’m not even sure how I ended up reading the Choosing Real Bible plan in the first place. But nevertheless, I really resonated with the themes in Pogue’s seven-day devotional. The main idea of the plan, and Bekah’s book, is to bridge the disconnects  between real life and faith and to make them one and the same; to invite God into the mess of one’s real, actual, day-to-day life, not just the grand moments or the Sunday mornings but the pain and the grief and the hustle and bustle. Pogue posits that choosing an authentic, beautiful life and choosing to walk hand in hand with God are the same. 

A main idea behind Choosing Real that resonated with me is that life was never meant to be easy. If it’s hard, you’re on the right track. Pogue writes about all the hard, scary seasons in life, and about not shying away from these seasons, but choosing to let God lead in them. 

In the hardest seasons of our lives, in the hardest seasons of my illnesses, I can lean into the truth of who I am, which Pogue discusses in her book. When I choose real, I choose to accept who God created me to be: “made in His image. (Genesis 1:26–27) Fearfully and wonderfully made, that is. (Psalm 139:14) We are chosen. (1 Peter 2:9) We are the dwelling space for the Holy Spirit. (1 Corinthians 6:19–20) He loves us even when we mess up. (1 Corinthians 13) Simply because He is our Father and we are His children. (1 John 3:1) (74)” all these descriptors are what truly defines me. I am not defined by my illness! Even on my worst days, I can lean into the truth of who I am created to be as a child of God. 

The truth of the matter is, no matter how sick I get, through flare ups or rough patches or questions over treatment, when my journey gets rocky, I can always return to the core, unshakeable truth of my faith. I believe that my body: yes, my chronically Ill body, was created by God. Pogue puts it this way: “now when moves, career changes, babies, or serious illnesses come, I find comfort knowing I am enough, for the Spirit of the Lord lives inside me.” (74)

My word for 2017, well, is underscored by this beautiful passage on the same page: 

“No matter what happens, my identity will not be shaken. This doesn’t mean I don’t get scared or disappointed or binge on obscene amounts of sea salt chocolate when Plan A is chiseled down to Plan Q; it just means I get another opportunity to walk outside, look into the night sky, and listen as trees rustle their created music. I recognize the tune carried and believe, “Whatever my lot, Thou hast taught me to say, ‘It is well, it is well with my soul.’ When seasons shift, as Ecclesiastes 3:11 assures, He will make everything beautiful in its time.” (74) 

Page after page of Pogue’s book are invitations to persevere, invitations to tread through the hard stuff of life hand in hand with God, in order to reach the good stuff. This doesn’t mean sugarcoating: the opposite, in fact. I love that Choosing Real is underscored with an awareness that the hard stuff is hard. Chronic illness is lonely and isolating and hard. Check out these passages that I highlighted: 

“We can’t reach the good stuff unless we are willing to be aware that the hard stuff is, in fact, hard. Isolating. Maybe solitary isn’t something we need to run away from, but an indication to run toward Someone.” (95) 

“Nothing, my friend, is wasted. God is using every drop—whether from rain or tears or sparkly paper thrown in celebration—to urge us to keep going, keep giving, keep living in today. Keep pushing against the social norms, the false expectations, the racing against the clock to achieve, arrive, and get there. There is no there. There is only here.” (179)

The last important truth I got out of Choosing Real is that part of partnering with God in persevering through real, everyday life is that we can use our pain to relate to and serve others. Serving takes our focus off ourselves and helps us at the same time as it helps others. Pogue writes: 

“When I use my in-the-middle story to come alongside hurting souls, relatability and compassion and the sacred art of giving are born.” (190)

I have definitely experienced this as both a chronically ill educator, and a chronically ill mother. Focusing on my children, both my biological daughter and the kids I work with, takes my focus off myself and puts it onto the kids, and many times I even end up forgetting my pain for a spell. 

My chronic pain also helps me relate to those I work with in different ways. Whether kids are sick chronically or just have colds or flus, my chronic pain helps me relate to them in new ways. I am able to be a light to kids who are frustrated with their own problems because of problems I face with my own struggles with chronic illness. Pogue writes about this beautifully in my very favorite passage from her book: 

“How are you using your light in the dark? Where are you choosing to illuminate how God is authentic and present and working? Even in your frustrations, pains, and disappointments? In your grief and “just because” funks?” (197) 

I am glad that I was able to read Choosing Real, and encourage others to read it as well. It is an uplifting and encouraging read, especially for those with chronic illness, and helped me see how I can live authentically, in my real, everyday life, letting nothing go wasted. 

When Your Chronic Illness Journey Takes an Unexpected Turn 

I have taken an unexpected hiatus from blogging again. I didn’t plan to take a break this time–I had blog titles and topics all planned out, but no words came. 

It turns out, I am not having surgery for my Chiari malformation, at least not anytime in the near future. 

Instead, my new neurosurgeon, who was truly wonderful, patient, and kind, wants to get me referrals to new local specialists in physical therapy, headache neurology, and rheumatology, and see if we can try a multifaceted approach for decreasing my symptoms from those angles first. 

I did not see this coming.
Don’t get me wrong: I am actually very happy about this development. Which is weird at the same time. I had built up this progression in my head of how things would go: my migraines and other symptoms, which I have had my whole life and are partially due to my Chiari, the worst of my multiple chronic conditions, are getting worse, so clearly I would need to have surgery. I didn’t want surgery, but I had finally accepted it, because I figured that was the only option. 

Except then, I spent an hour talking to someone who had dedicated his life to studying Chiari malformation and other disorders of the brain and spine who is telling me that at this point in time it is not my only option. 

Looking at my MRIs was reassuring. I don’t have any blockages in flow or any syrinxes on my spine. For those of you who don’t know anything about Chiari, that means two things: 1. that the surgery isn’t 100% mandatory at this point in time; and 2. that it might not even be effective at this point in time. 

At the beginning of the appointment, when I could tell things were going in the “no surgery” direction, I felt like screaming and totally shutting down from anything the doctor had to say. 

But the more I processed it, the more what he was saying made sense. He said he treated his patients like family, and I believed him. He was trying to spare me from a painful surgery and long recovery he didn’t see cause in. He wanted to try every angle before rushing. And the only reason I was so opposed to it is because I had convinced myself surgery was the only option. Even though I truly didn’t even want that option to begin with! 

There is still obviously a long journey ahead. Part of me wanted the surgery because it was a “quick fix,” even though I know from research it is anything but. Chiari is not a cureable condition–even with surgery, all that can be done is slow down progression of symptoms, so if that can be done in non-surgical ways somehow, I am more than open to exploring these new paths in the desert. 

With any new journey comes new emotions to unpack as well. Some of the new feelings I’m exploring are feeling unworthy, “not as sick” now that I don’t need surgery right now. Will other people think I’ve been faking my conditions the whole time now that there’s no imminent surgery on the timeline? 

What I’ve been trying to remind myself of is a few things. One, my worth does not come from my health, lack of health, or people’s opinions of my treatment plans. And two, I am my own worst critic of all of those things. My support system, both close and farther removed, just wants the best for me. They are happy for me that I’m not having brain surgery: and I’m happy, too. That door isn’t closed for good, and I will be revisiting the surgeon in six months to a year, but for now, I will be exploring the journey at this new vantage point. 

Building a Strong Support System with Chronic Illness when you Move Away from your Hometown 

Once upon a time, there was a little girl who really loved her home. Even when she was vacationing at some of her favorite spots on Earth, she still wanted to always go back to her “yellow house.” 

College was a rough transition for the girl. Theoretically, she always wanted to leave home and spread her wings, and she didn’t like any of the colleges close to home, so she selected a small, liberal arts school two and a half hours away. But until a few months in, she was miserably homesick, and even very seriously considered transferring out and attending community college for a couple years. 

But the girl ended up staying in college and making lifelong friends: and one friend in particular, who, the very beginning of her second year of college, she began dating. The thing about this boy is, despite going to school in her home state, the girl ended up falling in love with one of the few out-of-state students at her tiny liberal arts college. 

As may be super-obvious from that story, I am that girl, and I’ve lived in Ohio, about five hours from my hometown, for 4.5 years now, ever since I was married and we moved down here for grad school. We live 4.5 hours on a trafficless day from my family, and three hours from my husband’s. 

In 2017, it’s hardly uncommon for young adults to move away from home to pursue new opportunities, though it’s rarer in the midwest, where I live: many of my co-workers and others I meet grew up in this area of Ohio, and I’m one of the only “outsiders.” That means that while other coworkers talk about their families being close by and having families to help with things like childcare, I’m one of the only ones whose family is hours away. 

I’m not going to sugarcoat it: When you’re chronically ill, especially a young, chronically ill parent, living far away from family and established, longtime friends is often excruciatingly hard. When we originally moved here for graduate school, we weren’t sure where we were going to end up, and, to be honest, we are never fully sure about that. Life is a moving target, and we right now intend to go where life takes us, one step at a time. 

What we do know right now is that moving doesn’t make sense. We have unexpectedly grown roots in this area. We both are in jobs we are excelling in, I have found a supportive church family, and my daughter is thriving at her school. Plus, my medical network is here, important until I get the “Will I or won’t I have surgery question figured out.”

So, as long as I’m chronically ill and find myself in a place where I’m far from my hometown support system, it is crucial for me to build a support system in unconventional ways. This is something I have done overtime: some intentionally, some accidentally, but it has been something that has really helped me thrive and be well in a place that isn’t particularly close to my parents or in-laws. 

My first line of support is my little family, which is my husband and daughter. I have made my home with them, and we are making a new life, new roots, and a new story together. Additionally, those roots extend long distances, thanks to the wonders of modern technology. 

I am so eternally thankful to have the husband I do to walk this path of chronic illness with me.  My husband is my rock through the storms that chronic illness throws at us, and has taken the “in sickness” parts of our marriage vows incredibly seriously since the very beginning of our relationship, even whilst knowing “in health” would likely never be a reality with me and my chronic illness. We got married young, at 21 and 22, and heard that our young marriage would hold lots of challenges, and of course, a chronically ill marriage holds its own challenges. I know my illness affects him in its own ways: illness affects both the ill spouse and their partner. But we are able to talk about it, and he always continues to support me and be there for me, even when I have no clue what I need (which is frequent). We’ve been together over 7 years now and married for 4.5. Life has thrown a lot at us, but our partnership is strong. 

My daughter is three and a half, and she is able to say that her mommy has Ehlers Danlos Syndrome  (even if she can’t fully pronounce it). My daughter is an incredible part of my support system, because she keeps me joyful, and she keeps me grounded. My role as her mother is always more important to her than my role as a sick person. She knows I’m sick, but that matters less to her than the fact that I’m her mom, and there’s so much power in that to me. When I dedicate special time to spend with her, I’m able to forget I’m sick for a while, because I can focus on her. Don’t get me wrong: I still have limitations. We spend a lot of time cuddled in bed together (I will write a post on chronically ill parenting of a preschooler in the near future). But for the most part, we’ve found a groove. She’s not perfect: she’s three and a half, and she has her tantrumy moments where I certainly don’t forget that. But she’s also a sweet, empathetic kiddo a lot of the time. 

After my husband and daughter, the next most important thing that is absolutely crucial to my unconventional support system is social media, specifically Facebook and Messenger. People–especially non-chronically-ill people in certain circles–tend to really bash what they see as the “overuse” of technology. Facebook especially tends to get a bad rap. Every other week it seems like I hear someone talking about deleting their Facebook. 

On one hand, I 100% believe that you have to do what you have to do for your own mental health and wellbeing. That being said, Facebook is a tool, and like any tool, it has positive and negative applications. 

I use Facebook to keep others in the loop about my illnesses. Honesty is incredibly important to me. I give updates on my appointments, prayer requests about upcoming dates that are significant due to my condition, and share my blog and The Mighty posts. I don’t post about my illnesses exclusively: they don’t define my life, and I also share other stuff (mostly pictures of my daughter). I have been amazed by the outpouring of support I have gotten through Facebook, often through people I wouldn’t expect. I have a great community of people who stand in the gap for me and help hold hope for me when I can’t. It also helps inform the people I see regularly, so that when I see them at, say, church, they know what was going on in my week, and know what to ask about. A lot of times a church member or coworker will tell me they saw a Facebook or blog post and are praying for me and supporting me, which is really great. 

I also use Facebook messenger as a primary mode of communication with many out of town friends and family. It has helped me stay close with many friends that live in other states or even other countries. I love Facebook Messenger because I can write back at my own pace, and so can they. I can use it to carry on a conversation immediately, but I don’t have to. With some friends and family, we write long letters back and forth, with days in between; others, short sentences, carried on in immediate conversations. Even though many miles exist between us, Messenger helps bridge the gap and reminds me that I have so many friends that care about me: and helps me care about them and be a good reciprocal friend too. 

Messenger has also helped turn acquaintances into friends. There are several wonderful, strong women on Facebook that I was friendly with in person at several stages in my life (a few in high school, a few at college age) but I was never particularly close with. They read my blog and statuses, and messaged and commented that they were going through their own chronic or mental illness journeys. They have been wonderful sources of mutual support, and my only regret is that I did not become friends with them sooner. 

And then there are my online friends and support groups. I am blessed to have several wonderfup support groups full of online friends: some specifically geared towards chronic illness, some not. These people have become dear friends over the months and years, and an exceptional source of mutuality and support. They may live far apart and I may only know them through my computer, but they are nevertheless essential to my support system. Since many of them are chronically ill as well, many with the same illnesses as me, they understand my struggles in a different way, and therefore can help me in a different way. 

I’m not perfect in a lot of ways, of course. Sometimes, relying on technology means I mess up, and drop off with people who really care about me, like my mom and little sister. I know she is so much better at checking on me than I am on her, and I know I can be accidentally hurtful when I leave her out from my life. She is so caring and reads all of my blog posts, and always follows my health, but I don’t always do my best at updating her personally. 

Technology makes me lazy sometimes. It means I do group updates instead of talking to people individually. Again, technology is a tool. I want to tell as many people as possible, but I end up leaving those closest to me out of the loop. So to those I do make feel worthless: I am so, so sorry. 

My family is of infinite worth to me. My sister is my best friend. We fought like cats and dogs growing up, but I miss her every day now that she lives far away. She cares about me so much, and she makes such an effort to help me out. Technology helps us talk, but I know I underutilize it. Ahain, a lot of it is laziness, and me not being intentional. I need to fill my mom and my sister in first, and that’s something I need to start making a habit of. I think that’s something all chronically ill people can learn from: know who your close circle is, especially if they live far apart from you, and fill them in first, before updating everyone else. They shouldn’t have to hear your updates through the technological grapevine. 

So the next time you see someone on their phone, especially a chronically ill person, chances are, they are not being rude. It is a source of support, love, and guidance to many of us. It is an anchor to me: it is how I get support from my mom and my dad and my little sister and my in laws and the rest of my familh, from God through my Bible app. It does so much more than just aimless scrolling. 

I am also thankful for out of town relatives and their willingness to be flexible and go the distance for us, even when it’s hard. My parents and in laws frequently step up to the plate, and have watched my daughter for weekends and vacations and other extended periods of time to give us a break. The ways they have helped us have bridged the distance considerably, and we couldn’t make any of this work without them. 

Other people locally have made this new community feel like home, and stepped in in emergencies. In situations that have felt dire, the most wonderful local people have stepped in and provided practical help, childcare, and love, making a place that was initially strange and large feel a lot more like home. I don’t talk to all the parts of my support system all of the time, but it doesn’t make me any less grateful. 

Outside of my phone, my two major local support networks are work and my church. I wrote a post earlier this year in church shopping when chronically ill, and I plan to write a follow-up post soon about how finding the right church was a hugely important part of my chronic illness support system. 

Finding the right church helps in a multitude of ways. For one, while my online support system is vast and extremely helpful, living in one’s phone can be very isolating. For me, it’s very important to get out of the house and have in-persom networks: it helps me feel much less alone, much less isolated, and even less sick. 

Since I don’t have family in town to visit, a church helps meet this longing for close social networks. The church I’ve found has an array of social offerings that were easy to get plugged into. I quickly found a great Sunday school class, Sunday worship, and midweek classes for my daughter and I. One of the best parts for a chronically ill person that I’ve found is my church is extremely nonjudgemental when i miss a week or several weeks in a row, or if I need to sit in my car while my daughter attends her Wednesday night class instead of going to my Bible study because I’m feeling too fatigued and ill after work.

 They’ve also been accepting and non-judgemental when I need to sit during the standing parts of the church services. I have found an environment where I am able to be open about my illnesses, and have found myself surrounded by a community that prays for me and supports me along each step of my chronic illness journey. I definitely would feel a lot more alone without my church family. 

Finding a fulfilling job that worked with my chronic illness and also allowed me time to write, rest, recover, and self-care has been absolutely critical. I kind of fell into this job by accident, because the shift–a split shift, with a shift early in the morning, a break in the middle, then going back in–worked with having another job. I quickly decided not to have another job, my illness being a big factor in thst, and to completely switch fields over to education and childcare, and it’s been such a worthwhile switch. 

Being in the right career helps me get out of bed each morning, even when I’m not feeling well. Seeing “my” 50+ kids I work with never fails to put a smile on my face. My work feels meaningful to me, which helps distract from pain and other symptoms. While I’m at work, I often forget I’m ill, which is huge. 

Moving back home is never fully out of the question, nor is potentially moving closer to my in-laws, or somewhere in between my parents and in-laws. But until then, I am thankful that I have other ways to stay in touch with the many people that support me, love me, and make my life full. God did not intend for me to go about this chronic illness journey alone, and luckily I have wonderful people in my life, both near and far, so that I never have to. 

Holding Out Hope when the Chronic Illness Journey is Long 

One of my favorite metaphors for life, however cliche, is of life as a journey. Having a chronic illness, especially young, is its own journey, and sometimes the legs of the journey can be longer than expected. 

Yesterday, I had one of those times. I had a first appointment with a neurosurgeon two and a half hours away from where I live to meet about my Chiari Malformation. I had built up this appointment in my mind as the End of the Road, but it ended up being an overly quick appointment. The surgeon seemed  very competent, kind, and well versed in Chiari, which was great, but he wanted to be cautious and order more specialized tests before scheduling surgery. Since I had gone in expecting a surgery date set, this was initially a huge disappointment, even though logically I know I need the testing and this doctor is exactly the kind of doctor I want: the kind that is willing to be cautious and order the right testing before jumping into a procedure.

I know firsthand how sometimes my desperation for answers and timelines and treatments on my chronic ilness journey leads me to cling to things that are not best for my overall health journey. In July 2016, for instance, I thought I had finally reached the end of an arduous diagnosis journey, and I was diagnosed with fibromyalgia. But it turned out to be a misdiagnosis. After dealing with that, and treatments that ended up being counterproductive to the Ehlers Danlos Syndrome I really had, I am slowly learning to embrace the journey and the fact that, since these are lifelong, incurable illnesses, this can’t be anything I can rush. It needs to be the right steps on the journey, and I need to be patient so that the journey can take those right paths. 

As validating and comforting as answers and timelines are, the rational part of my brain reminds me that I don’t want answers, or timelines, if they’re the wrong ones. 

One of my favorite stories on The Mighty is written by fantastic contributor Nikki Albert. It was written just over a year ago, and I believe I read it when it was first published, when I still thought I had fibromyalgia, the topic of the story. In the article, titled “Why Those of Us with Fibromyalgia Should Embrace Being Turtles,” Albert writes about the importance of a slow-paced, turtle-like lifestyle for those with fibromyalgia: which certainly applies to those of us with similar chronic illnesses as well. 

Albert discusses how the world can often seem intensely fast-paced, a chaotic rat race, but that those of us with chronic illness can and should, for our own health and wellness, choose a new way to live. This “way of the turtle ” is slower paced, filled with self-care and not comparing oneself to healthy people. She also talks about the #1 lesson I learned in 2016: not basing your worth on what you do, but rather who you are. And since I practice a Christian worldview, for me this means basing my worth in who I am as a child of God, not on any earthly accomplishments. 

Not only should I embrace being a turtle and pacing myself with everyday activities, I also have to remember that the pace of chronic illness treatment–the pace and length of this chronic illness journey I’m on–is going to be different. 

I have sometimes wished through the years, on the hardest days of my chronic illness journey, that I had something “more serious”: that is to say, something that sent my medical teams into what I see as more action. I haven’t thought this because i think those illnesses that are treated like emergencies are easier: on the contrary, I am sure they are extremely difficult and full of challenges I can’t imagine from this vantage point of having never experienced them.

 All it means is that on those hard days, I sometimes long, if I have to be sick, for an illness to which there was a clear treatment plan, and treatment was done expediently, rather than at the turtle’s pace life with Chiari Malformation and Ehlers Danlos Syndrome Hypermobility Type often feels like.

But some of the best advice I’ve gotten this year is that “nothing good can come from dwelling in ‘what ifs.'” I do not live in some hypothetical alternate universe, and never will: I live here, in this world, in this body, and this is the hand I’ve been dealt.

So, my advice to my fellow “turtles” on a long, winding chronic illness journey, that seems to be just getting longer day by day, is this–which is also my advice to myself: for a long journey, pack hope. 

Hope, as I’m choosing to use the word, means living with the faith, expectation and trust that things will continue to progress and continue to get better, even when they seem very hard. Since I am a Christian, my hope comes from believing there is an author of my story–God–who is much bigger than me. 

After my initially-disappointing appointment this week, I am choosing to pack this new outlook for the journey. So what are some practical ways I am choosing to pursue hope? 

In a recent post, I wrote about my scripture habit that helps me as very intentional self-care. I use the YouVersion Bible App and have read through many, many of its devotional plans. One of the most helpful features of this app is you can search for plans using a keyword. So when I was specifically searching for plans based on the life of Joseph, as I talked about in my last post. So right now, I am reading through as many plans about hope as I possibly can. I cling to all the scriptures and promises I can about hope. I also am reading reassuring quotes about hope, and these all serve as lights for my journey.

Another helpful way of keeping hope, for me, is looking over the topography  (using the journey metaphor) of my illness journey so far and seeing how far I’ve already come. A popular phrase I hear a lot in parenting is “the days are long, but the years are short.” This is true in my chronic illness journey as well. Certain days seem unbearably long, but the amount I’ve journeyed in just a year and how much more I know now is impressive. And that gives me hope that a year from now, I’ll be looking back on this leg of the journey and have a brand new perspective. 

A third way I am choosing to pack hope for my journey is by not traveling alone. My next post for my blog will likely be about building an intentional support system with chronic  illness when you have moved away from your hometown. I need to be intentional in sharing my journey, which is why I am very public about my health struggles, and talking honestly about it with friends and family. Isolation leads to hopelessness. My support system carries hope for me and helps me carry this hope for myself. 

Finally, my fourth tip I’ve discovered in the few days I’ve been choosing to intentionally embrace having hope along the journey is to smell the flowers along the way. I am learning to enjoy the little things in life more, instead of obsessing over things like what’s to come next on my treatment journey. Living in and relishing the beauty of the day to day helps give me hope, too  (more practical posts on how I do this are in the works!). 

Notice that never once in this post did I say a chronic illness journey is easy, nor is it something I believe you have to be Pollyanna happy about. I can’t always choose where I’m called to journey with my chronic illness, but I can choose what to pack. And starting now, I’m packing hope.