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.

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.