17 Wellness Lessons Six Months In

Whew! It’s been over a month since I wrote in this blog, and what a whirlwind it’s been. I switched from part-time to full-time and school season to camp season at my Education Administrator job. It is completely exhausting, but I am totally loving it. I have two weeks under my belt, and am totally pumped for the third starting Monday. I get to co-lead my first Specialty camp, Science Camp. I can’t wait for all the fun, messy, exciting science activities we have up our sleeves!

I also celebrated my 26th birthday, and have been having a lot of fun on the weekends with my daughter. I grieved the loss of a wonderful woman, one of my best friend’s mother, who will be dearly missed. And I’ve been writing for an awesome Children’s Ministry Site. 

One of my first posts on here was about my new years resolution, and I figured I should give a six month update! 

Six months ago, at the dawn of 2017, instead of a New Year’s Resolution, I chose a word to define the year. 2017 would be my year of Wellness. It may have seemed like an odd word to choose, as late 2016 was when I was diagnosed with Bipolar II Disorder, Chiari Malformation, Ehlers Danlos Syndrome, and Mast Cell Activation Syndrome. 

But despite finally knowing what was wrong with my body, it wasn’t like anything had changed all of a sudden. I had been feeling very unhealthy for very long: and, more than that, I felt unwell. I felt off-kilter, body, mind, and soul. Surviving, but not thriving. I knew I could do better, for myself and those I loved. I needed to make a change: I needed God to make a change within me. I needed it to be well within my soul. And that is why I chose the 2017 word of wellness. 

A little note before we begin: before I started this journey, and even during the first few months of it, I was a huge wellness skeptic. I didn’t used to be–like I said, I was relatively well in college, and I was gluten free most of that time, which made a major impact on how I felt and our energy levels. Most of the food at our wedding was even gluten free. But then I got pregnant, more major health issues started, and I fell into this thought trap of “it doesn’t matter what I do. I’m always going to feel bad. It’s a crapshoot.”

So if that’s where you are…trust me, I was there in the not so distant past. Solidarity. There is hope. 

1. Start Strict.

For some, starting small might be better advice. But for me, I’ve found that better wellness comes when I try to do an overhaul all at once and gradually add things back in. For me, this means doing an elimination diet, then adding small quantities back in, to see how much, if anything, my illnesses and body can handle. While I’m doing that, I also try to start being healthy in other ways, like starting slow, gentle exercises and enough fluid consumption, at the same time. 

2. Stick With it.

My problem with this method, as you might be able to tell from the phrase above “usually start,” is that, yep, I’ve started more than once. I always find myself getting sick a few weeks in: and then promptly giving up, and deciding that’s my body’s way of telling me it’s going to get sick no matter what I do. But when I started really trying to commit to total wellness again, including in eating and exercise, the two areas falling by the wayside, about two months ago, I pushed through. I did research, and found it was common for bodies to respond to the stress of a new diet by getting sick, but that was no reason to give up. I had two bad colds within a week and a half of each other. It was miserable. But I stuck it out, and am glad I did.

 Even through those colds, I felt myself getting stronger, my stamina slightly increasing, my energy slightly upping. And now, after them, it’s way higher. And nothing that I thought was going to be a cold since has been more than a half day’s scratchy throat or allergies.  

3. Find out which typical ways of wellness work for you: and which don’t.  

Two of the most-frequently suggested easy wellness tips to try for beginners tipping their toe in better living are upping their water intake and decreasing their caffeine–in my case, coffee, intake. Now, I wasn’t a huge coffee drinker, but by October 2016, I was usually drinking 2-3 cups each morning, switching to caffeinated tea after that. I switched to herbal (no caffeine in the varieties I drank) tea in the evening. I never drank any additional water.

In the end of October, I committed myself to making healthy lifestyle changes for my misdiagnosed fibromyalgia. Two of these were near completely cutting out caffeine and drinking a ton of water. For most people, these would have been awesome things to do to help their chronic illness. For me, it sent me into a month long migraine with a months worth of nausea that ended up with me discovering my Chiari Malformation, with my EDS diagnosis not long after. 

Turns out, caffeine is super helpful for my Chiari. It helps more than any of my medications do. Without it, I feel like my head is going to explode. And plain water, especially in large quantities, makes me feel like I’m going to vomit because my electrolytes are usually out of balance. My doctor recommended I drink electrolyte fortified water or a watered down sports drink like Gatorade. 

Again, the lesson here is not for you to go out and drink a bunch of coffee with a Gatorade chaser. That could be abysmal advice for you. We are all so different. The lesson is that spoonies are all different, and everyone’s quest for wellness will look very unique. 

4. Hydrate

Even if water doesn’t literally make you vomit, it can be really hard to get your required allotance. Trust me, I know. And this has always been one of the pieces of advice I rolled my eyes at so much. Probably for two reasons: one, trying to drink a lot of water made me throw up, and two, it was often presented in a snake oil salesman speech: “just drink water and your genetic and/or incurable conditions will be totally cured!” 

But here’s the thing: I’ve been outside way more in the last few weeks, and I’ve also been hydrating a lot more in the last few months, and even when hydrating is the only thing on this list I can muster (other than meds) for the day towards wellness because of pain and fatigue, it still helps me tremendously. 

My sub-tip to this tip is find a water bottle/drinking vessel you love, and carry it with you everywhere. Mine was an epic search that ended in a pretty simple, and funny, place. I have spent years and many dollars trying to find a water bottle I loved and would actually drink out of, to no avail. From $5 to $20 ones, I hated them all, and would stop using them after a few times, giving them to my husband or Goodwill or my daughter. Finally, though, on the way home from work I stopped home at the Dollar Tree and grabbed one of those tall, skinny Gatorade squeeze bottles for a dollar. And you know what? I love it as a refillable water bottle! It’s easy to refill with half Gatorade from the bigger, squatter bottles and half water from a drinking fountain; lightweight; cheap; easily replaceable; fits easily in a bag and cupholder; dishwasher safe; doesn’t leak; easy to drink out of; easy to open and close. Basically, my perfect water bottle, and makes it so easy to hydrate! 

Also, it doesn’t have to be water. Fruits, vegetables, and all liquids (preferably caffeine free) contribute to your hydration allotance. Perfect for summer, watermelon is over 90 percent water! 

5. If you want/need to work, find work that’s worth the pain. 

I really love working. I love my fields–Education and Faith Formation. I just graduated with my masters last year. Working gives me such a sense of purpose.

That being said, work also can be really stressful on my body, especially full time work. I have learned that the hard way. Stress tears my body apart, and there have been many days where I have questioned how long I can plausibly keep doing it. 

Luckily, I have settled into my still fairly new job, and most of these thoughts have dissapated as I have realised how much I truly love my work and how much true true joy and fufillment I get from it. It definitely contributes to my total wellness. There are certainly hard days, but the good days more than make up for it. I don’t forget that I’m ill at work by any means, but I’m able to set it aside in most ways and focus on my passion for what I get to do.

6. Forgive Yourself

It happens. You willl mess up. You will cheat on your diet. You might feel totally unwell. I have had these moments. I have felt like totally throwing in the towel. I have had to remind myself to forgive myself and try, try again. Each day is new.  

Along with this, if you don’t have a true allergy or disease that absolutely forbids you from eating a certain thing and are instead avoiding them for health reasons, because you feel way better without them, it’s ok to have a treat from time to time off your diet. I do. But I make sure not to do it too often. I know my body well enough now to know I won’t feel poorly if I eat one cookie, but I will if I have any other gluten that day, or if I have a glass of milk with that cookie. 

7.Sneak In Exercise.

Exercise stresses me out when it’s another thing on my to do list. There’s just not enough time in the day! So I try to incorporate movement throughout my day. I watched some YouTube videos on movement and yoga for those with chronic illness and try to do similar stretches, various muscle strengthening exercises and movements throughout each day.

 I try to move around and play with my kids at work as much as I can, and do active activities, like trekking around the zoo, with my daughter on weekends. It used to be even the smallest amount of walking caused me great pain, but I really have seen awesome changes in what I can do over the last few months. I still have pain, and I’m still really hurting after a day of activity, but it’s incredibly worth it. 

8. Take Your Meds. 

For years, I have fallen into this weird mind trap, that no one in particular ever taught me, that meds are supposed to only be used short term. Get in there, fix the problem, stop using them. Well, that’s fine and dandy with a cold or a yeast infection. It doesn’t work with chronic physical or mental illness. I have finally, after years of hoping for some strange reason, despite my doctor saying otherwise, accepted that taking my medicines will likely be a lifelong thing. And you know what? That makes sense, because my conditions will likely be lifelong things. So why wouldn’t their treatments be? My doctor and I have found a treatment plan that works very well, and there’s no reason to be ashamed of taking them. Medicine helps contribute to my overall wellness, and I am thankful for medical advances that help me thrive. 

9.Get Outside. 

One of the best things about my job, and having more energy to do more with my three year old daughter, is that I’m getting outside a lot more. Early in this diagnosis journey, I was diagnosed as vitamin D deficient, just like, umm, pretty much everyone in the rarely sunny Midwest, but at that time, I sat inside most of the year. Now that I’m outside most of the year, I feel so much better than when I was just taking my supplement. Also, being outside encourages me to move more, in natural ways that don’t feel like exercise and don’t cause a huge strain on my body. 

Now, this one comes with multiple caveats. I am temperature sensitive, so being outside always involves thinking ahead. My skin is sensitive to being outside, so I almost always wear long pants, even when it’s hot. I make sure I’m always hydrating, hydrating, hydrating. I always carry emergency meds, and always have sunscreen, and always reapply. I try to get frequent breaks in the shade, sitting down, and indoors. 

 Others with chronic illness will have other considerations, based on unique needs, but being outside does wonders both on my physical and emotional health. My mood is incredibly improved, even though I’ve never thought of myself as “outdoorsy!”

10. Write (in multiple mediums!) 

I find myself writing a lot. When I am not working, spending time with my family, or doing the practical day to day stuff that has to get done, I am usually reading or writing. 

I write in multiple different forms, and they meet multiple different needs. I message friends that live across the country and world, both that I know in person and in parenting and chronic illness support groups. I write in a personal journal. I write a novel. And of course I blog. Just getting words out there for me is incredibly cathartic. Each of these are honest expressions of what I am feeling, and each meets a slightly different need. 

11.Build a diverse support system.

I am so blessed to have a village of support around me. Most aren’t local, but are only a text or Facebook message away. And, just like with writing, each meet a different need. I have my family, my in-laws, my friends from different stages of life, coworkers from past and current jobs, church families. And then, of course, I have online support groups, both for chronic illness and motherhood, that are amazing lifelines. 

I do my very best to pour into these friendships, even when it’s hard. I am not always the best friend, but I do try to make our friendships reciprocal. I try to help them just as they help me. I try to keep up on their lives. The internet really helps, as I can stay in touch from the comfort of my own bed when I am fatigued.  

12. Be honest: with others and yourself.

Don’t let your default response be “I’m fine” when you’re not. You don’t have to tell everyone everything, but you can tell someone something as simple as “I have a headache.” Many people want to support others, and will appreciate your honesty. Also, be honest with yourself. How are you feeling? What are your needs right now? How can you best meet them? 

13. Do something positive first thing in the morning. 

I try my best to start my day on the right foot. I get up when the house is quiet and my daughter isn’t up yet. I draw a bath, drink hot coffee, take my meds, do my Bible study, and spend some time in prayer and contemplation. 

14. And end your day on a positive note, too. 

I make sure to get at least a few minutes of alone time after work before going to bed. I do my evening Bible study, drink herbal bedtime tea and maybe a glass of wine, and end my day in prayer. 

15. Accept help.

The need for help is not limited to the chronically ill. No one can do life on their own. Let others know what you need, and accept their help when they offer. You’re not being pitiful or a burden. People love and care for you, and they want to help. 

16. Breathe.

Another one of those tips, like “hydrate,” that I thought were so simple that there was no way they could ever work, especially with my complicated body that was such a random crapshoot with how it behaved. But seriously, a few deep breaths calm my body down so much. I can go from stressed to feeling okay and in control in an instant. Focusing on my breath grounds me. It helps me be in the moment, the here and now, rather than anywhere else. It reminds me everything will be ok in the end. If it’s not ok, it’s not the end. 

17. Be Willing to Cancel Plans and Take a Nap 

Even the best laid plans of wellness aren’t worth if you’re too exhausted to carry them out. Don’t feel guilty about sleep, ever. Sleep is one of the best gifts you can give your body, for anyone, but especially the chronically ill. If I’m feeling just unable to do the stretching or journaling session I’ve planned, I’ll go to sleep, and I’ve trained myself to have no guilt about it. 

I am very proud of where I have come in terms of wellness in the last six months. It is definitely the most growth I’ve seen within a single half year period, and i do genuinely think my chronic Illnesses helped me get there.

 Now, don’t get me wrong: this is not to say my chronic illnesses aren’t a challenge, and thst there aren’t moments, many, many moments, every single day that I don’t have the pain from them. Because there are. It is often excruciating. But, I do my best to wrestle blessings out of them and see the lessons: and the road to wellness is one of the greatest lessons. I may never be healthy, but I can be well, and i can’t wait to see how much more well i am in six months. 


What I’d Tell My Chronically Ill Self if I Was Considering Having a Child

Recently, I got back in touch with an old friend of mine whom I hadn’t spoken to in years. This friend, like myself, bravely struggles with both chronic physical and mental health issues, as many, many people do. She is also considering having children, and asked if I could consider writing some posts about how I balance being a mom with chronic illness issues. 

My daughter is now three years old, and she was a complete surprise. When she was born, I was not yet diagnosed with Ehlers-Danlos Syndrome, Bipolar Disorder,  or Chiari Malformation, though I definitely struggled with these issues during pregnancy, even if they didn’t have labels yet!

If I were to be in my exact level of sickness that I’m in right now, but not have a child, here are the nine pieces of advice I would give myself while considering whether or not to have a biological child. 

1. It is likely pregnancy will be very hard on your body. 

I may have had no idea that I had EDS while I was pregnant, but what I DID know was I felt sick: so very, very sick, pretty much the entire time. There was no break from the misery, though it did come in many different flavors of miserable. 

I threw up multiple times every day. I couldn’t even keep a prenatal vitamin down. I had back pain that was so bad, I was in the hospital overnight. I had several early labor scares and one “threatened miscarriage”, where my body tried to miscarry my baby and I ended up in the emergency room, scares. I had horrible acid reflux and pain everywhere. 

This won’t necessarily be everyone with chronic illness’s experience, but it was mine. Pregnancy was incredibly hard for me. Some people say you forget all the bad parts about pregnancy as soon as you have a kid, which is great for them, but definitely wasn’t the case for me. I still remember my rough pregnancy vividly! 

2. You might grow disheartened comparing yourself to healthy pregnant people/moms.

Over three years later, it’s still hard for me to see people’s healthy, happy pregnancy pictures on Facebook. I knew my mom loved being pregnant, and it was really hard for me that some people have this awesome pregnancy experience and mine was so hard. It resulted in a weird guilt/sadness mixture that still persists.  

3. Some issues might be better during pregnancy. 

I had a physically horrible pregnancy, but mentally it was surprisingly great. My anxiety and panic attacks went almost completely away during pregnancy. I also could eat gluten without getting sick, which I definitely couldn’t do for two years before and can’t do now! 

4. Having a supportive partner is crucial…

My husband is AMAZING. Seriously, if I wouldn’t have had such a supportive partner, I don’t think any of this would have been possible for me (maybe it would have, but I can’t even imagine!). Open and honest communication about what you are feeling and what your limits are, and what you need, is crucial. My husband was in full time law school at the time, but still made so much time for me. He ran so many errands, getting me support belts or new clothes or medications or the rare food that didn’t make me throw up. 

And it’s important that the support continues once you have a child, too. Having a kid while I am chronically ill works because my husband and I are a solid team. He knows my chronic pain and other symptoms limit me, but he doesn’t see me as a burden. He picks up where I can’t, and I focus on my strengths–giving her baths, taking her to school–so he can take breaks too. We never keep score of who’s done what. We both work together, and love each other and our daughter. 

5. …as well as others who make up a strong support system. 

I don’t live near most of my support system (which I plan to write another post about soon). My family and most of my friends are 5+ hours away, and my husband’s is 2 hours away. We have some good local friends now, but didn’t when I was pregnant. 

That being said, your support system doesn’t have to be within walking, or even driving, distance for them to be a good support system for you during a chronically ill pregnancy and raising a child. The internet was awesome. And my far flung family and friends still ended up throwing me three baby showers. The outpouring of long distance love and support I got meant I rarely felt lonely, even far from family. I also joined an online moms group, and made some incredible friendships through that too. 

Getting involved in churches has also been an incredible source of love and support. We moved to a new city the day I found out I was pregnant, and one of my first priorities was to find a local church so I could be surrounded by a community of like minded people. I’m so glad I did! They prayed for me, did a meal train for me when I was on bedrest and after I just gave birth, and some even visited me in the hospital. It was great having those local connections to help sustain me in a new community. 

6. Your symptoms might get worse after giving birth. 

I am not sure I’d even know about my EDS or my Chiari had I not given birth. My issues increased tenfold postpartum, especially my pain and headaches. 

7. Chronically ill moms are different in some ways than other moms…but not just in negative ways. 

Yes, I have limits as a chronically ill mom: but I also have strengths. I know perseverance well, and I encourage my daughter to never give up. I am extremely caring and empathetic, and pass those traits on to my daughter too. My daughter knows mommy gets sick a lot, but she’s incredibly understanding for a three year old. I make adaptations to make parenting easier: we hang out on the bed, in the bathtub, wherever is comfiest. She knows mom has to take medicine and eat special food. I think it’s giving her quite the others-focus and servant’s heart already, and that’s so beautiful to see. 

8. Self-Care will be incredibly important. 

“Mommy martyrdom” is a huge risk for all moms. It is what happens when a new mom tries to do it all, and grows burnt our and resentful in the process. This is to be avoided in all moms, but especially those who are ill. Regularly crossing your limits isn’t healthy for you, your spouse, or your child. It is essential to have strong self awareness and systems of self care in place. Taking a break isn’t selfish; it’s essential. Not only for you, but for modeling taking care of yourself for you child! Because don’t we all want children who take care of themselves and think they are precious, something to be respected? In order to have well adjusted children brimming with self worth, we have to acknowledge our own inherent worth and treat ourselves well, too. 

9. Your kid will be alright. 

You are not dooming a kid to a life of misery by being a chronically ill parent. Kids need love, boundaries, affection, and role models, and no one has to be in 100 percent perfect health to do that. 

If I had to do it all over again, even with the foreknowledge that I would get sicker post-pregnancy, I would choose to have my daughter again any day of the week. 

But I also understand that having a child when chronically ill is a very difficult choice. My illnesses are the biggest reason my husband and I do not plan to have a second biological child. But I am also incredibly thankful for my daughter, and I wouldn’t trade this experience of raising her, even with my chronic issues, for anything. 

My Ongoing Struggle with my Diet as Someone with Chronic Illness 

Once upon a time, I was a girl who loved food. It was one of my greatest passions. I loved to eat and try new things. 

There was a little problem, though. 

Things I ate tended to make me sick. I would get sick after so many different meals that it was difficult to pin down what, exactly, my food triggers were, only that I had a lot of them. 

I have tried cutting out things that likely make me sick many times over the years, with varying levels of success. Dairy was the first thing I learned that made me sick, as a kid. I would go through phases where I was good and avoided it completely, but then I’d see other kids eating things and, since my allergies weren’t life threatening, decide the ensuing issues were worth it and would just pretend to not have the allergy. The same happened years later with gluten. The healthiest two years of my life were the two years I cut it out, but I added it back in when I was pregnant and have not been able to have any sustainable healthy diet changes since. 

These last three years since my daughter was born have been a spiral of up-and-down diet choices and declining health. I know that what I eat affects how I feel, but I also know that likely, I will feel badly anyway, because it doesn’t control completely how I feel. So it’s a rollercoaster of conflicting emotions. “Eating well isn’t going to cure me, so I might as well eat delicious things.” “Other people can eat whatever they want. My illness already impacts so many areas of my life. Why does it have to impact my diet, too?” “So many foods make me sick that I don’t even know where to start. It’s too overwhelming. I might as well not try at all.” 

I realized the other day, suddenly, that all of these issues have made me actively afraid of eating. I don’t get the joy out of it that I used to, because planning each meal is a tedious task full of “what ifs”. So I finally go through seasons where I just totally give up and eat whatever I want, knowing that things are making me sick and just ignoring it. 

I am confident, however, that this season of food nervousness in my life won’t last forever, if I finally actually do the work to repair my relationship with food. My 2017 one-word resolution, which I have written on before, is wellness, and total wellness needs to include me healing my relationship with food.

For me, this means several different things. Firstly, it means buckling down and eliminating the foods that are likely making me feel poorly: not just for a few weeks and then giving up, but for a long enough time to track real progress, especially since I really know, deep down, what my biggest food triggers (gluten, dairy, alcohol) are and just don’t want to give them up because they’re ingredients in some of my favorite things and I don’t want to accept that I don’t get to eat them when other people do. My overall quality of life is so much more important than the fleeting joy I get from eating things that are ultimately destructive to my personal health. 

This also means accepting I am different from other people, and diet limitations are some of the limits on my own life I must accept. This can definitely be one of the hardest areas of accepting my chronic illness for me: the comparison trap. I look at other people around my age without chronic illness and often idealize their lives. Doing so depresses me: I imagine them all doing anything and everything they want, unencumbered by illness, while my illness affects so many areas of my life. Does it really have to affect how I eat, too? It’s not like I have life-threatening allergies, so can’t I just ignore them and experience joy through eating cheese, donuts, and the like? 

But what I try and remind myself is that everyone is limited, chronic illness or not. No one gets to do everything in life, and everyone must make very personal choices in what they need to do to live their own personal happiest, healthiest life. I know certain foods are making me feel worse, and in the long run limit me from things I care about more than food: from being at my personal best. So I need to buckle down, commit to this, and make the choices I know will be best for my overall long-term wellness. 

I am not doing it alone, and am thankful for my support system through this. I know in order to succeed in totally transforming my diet and sticking to foods that make me feel better, I need my friends and family to hold me accountable: which they have done an absolutely fantastic job at. 

And I know already that this new adventure of eating healthily and working on wellness in this area will hold joyful surprises as well. Just today I spent a whole morning teaching my three-year-year-old daughter to make carrot “spaghetti” using a spiralizer. We both had so much fun, and the joy made the final product so much better. 

It’s going to be hard, but I hope by the end of the year I can write a post about how my eating habits have transformed and helped me thrive despite my chronic illnesses. I have faith that this is yet another area where I am stronger than my illnesses, and I am committed to following through. 

Piecing Together the Life Puzzle of Being Young with Multiple Illnesses

Being in your 20s, from what I can tell, is complicated and hard and challenging for most people. For those who are chronically ill and mentally ill at the same time, like I am, it holds its own unique challenges. 

Is being 25 with bipolar disorder, Ehlers-Danlos Syndrome, Chiari Malformation, and several other conditions harder than any other way of being 25? I honestly couldn’t tell you, nor would I want to. Honestly, nothing truly good seems to come from comparing one person’s story o another. Everyone’s life holds its own unique challenges. 

What I do know is my own experience, and that each day that I live with both mental and physical chronic illness feels like a day that I am further piecing together a puzzle of how to best live a whole life of wellness and be the person God created me to be, one piece at a time. 

Some days, the pieces slide into place easier than others. Some days, it seems like I’ve completed a whole corner or side to the puzzle, only to completely demolish that corner and start over in a few days or a few months and a few years. 

There are many questions to ask as I assemble the puzzle, questions I can begin to answer now and questions I can’t. Some of these are questions all twenty-somethings are asking, while some of these are questions in which my chronic illnesses play a unique role. How do I find employment that is meaningful, something that is not just a job but a career, something that I can be happy at over a period of time and where I can feel like I’m making a difference? And how can I do that work and still take care of myself at the same time? Is it even possible to work in a helping profession while living with chronic pain? How long will I even be able to work at all? Is it a career I can work long term on a split shift, so I can come home and rest in the middle? 

Where should we settle down and make roots? Should it be in a place where I feel drawn, but am farther from family, or where I am closer to family who can help me through my illness, but have to leave meaningful work I love? 

And what about family? I had my daughter when I was 22, before I was really sick, which I am really thankful for. But my choice to not have a second child is definitely hugely based on my health and my ability to dedicate myself to my daughter but still focus on myself. 

Where does balance, in general, fall into my life? How do I fit my faith in? Do I choose Bible reading, or sleep? Which will help me be more well rounded in the long run? What church do I choose? What church family will support me best professionally, personally, as a mother, as a wife, and as an ill person? Is there even a church that can fulfill all those roles? Will I find time to volunteer? Where does being a friend fall in the midst of all of that? How can I support my friends best admist their lives while seeking adequate support for myself as well, without feeling like a burden? 

Notice that this post has ended up being a lot of questions, and very few answers. I think that’s ok, because that’s where I am in life right now. It’s a fairly good place, but it’s a very open-ended place. It could go in many different ways, and there are many, many considerations to make. 

These considerations are definitely affected in ways both big and small by my chronic physical and mental illnesses. There is absolutely no avoiding that. These illnesses will be there for the rest of my life, so just like anything else that will be there for the rest of my life, they must be considered when I and my husband make major life decisions. But that is not necessarily a bad thing. 

As I work on my 2017 goal word of wellness in each area of my life, chronic illness helps bring definition to my life and helps me trust God moreso than I probably would without this specific set of challenges. While some days, I find very little to be thankful about my chronic and mental illness battle, on other days I am able to reframe these battles and see the ways they help make me stronger earlier in my life. I can’t wait to see the definition they continue to bring, because if I am going to continue to have them, I am going to continue to make the most of them. 

From Struggle to Strength: Reframing the Year I got my Diagnosises 

Looking at things in a different way is often what brings me strength. It’s hard to do when I’m in the midst of things, but when everything is said and done, if is a lot easier to step back and see the big picture and see what God has done in my life. This is one of my favorite things to do. It’s especially true as I reframe and wrestle blessings out of my chronic mental and physical illness. Yes, I have these things, and sometimes, in the moment, it feels like they are winning. But when I am able to step back, I am able to see they never so . God won. I won. 

A year that I thought initially was a year of great struggle, 2016, is an amazing example of that. 

In my writing just after 2016 ended, I wrote about how hard 2016 was, and how much better 2017 would be. I couldn’t see the big picture of 2016 yet. I was too close to step back.

But now we’re four months into 2017, and I am able to look at 2016 with new eyes. And sure, it was a hard year. It was the her I received or learned about my many diagnosises. But goodness, did I triumph. I grew in collosal amounts of strength, strength I never would have had without those challenges. 

So I’m not going to list my diagnosises​ in this post. I’ve listed them before, and they’re no more important than the lessons I learned in 2016 despite, or maybe even through, those diagnosises.

 I learned that I am smart. My brain may be riddled with headaches, but it is also filled with knowledge. It is able to make complex connections and witty comebacks. It is filled with wisdom beyond its years, and many facts about subjects it cares deeply about.  

I learned that I am beautiful. When I look in the mirror, I like what I see. I am not perfect, but I have both inner and outer beauty. I work hard so my soul reflects what is on the outside. I work hard to smile even on the dark days, and brighten up people’s days. 

 I learned that I am strong. I may not have physical strength, but 2016 proved an incredible resilience of spirit and mind beyond anything I ever knew I had. I can withstand so much, and keep going. I am strong. I am capable. I persevere. 

I had always thought of myself as average before 2016, and it was only this year that I started truly recognizing my positive qualities. I also plain old just did a lot in 2016. We moved. I wrote a thesis. I got a masters degree. I started writing the novel that I am working to publish. 

If I was able to finally accept so many positive things about myself the same year I got my diagnosises, that shows me pretty definitively they are realizations my illnesses will never be able to take away. And because of that, I don’t think 2016 was a bad year at all. In fact, looking back, it was a pretty great year. I finally accepted a lot of awesome things about myself, and God and my incredible support system were there all the way through.

“Church Shopping” with Chronic and Mental Illnesses 

First of all, sorry for the absence around these parts the last week! It was spring break for the school district I work in, which meant I worked spring break camp and massive overtime, and was too tired to do much of anything when I got home. But I really bonded with a lot of the kids and had a great time. Glad to be back to my normal schedule, though! (For those who don’t know, I work as a Site Administrator for an Elementary School Before and After School Program. It’s a blast!). 

There’s a really funny video going around–a parody of the show House Hunters–thats called Church Hunters. Watch it here. In this video, a couple is trying to find the right church for them, and it parodies modern church, parishoner-centered, experiential-culture. 

Now, if you’re someone who is religious and attends church, you probably had a good laugh at this, because you know that there’s so much more to church than this. Church is about way more than what a church has to offer: it’s about what the person who attends church can bring to a church, too. Everyone has their own gifts. When the right church for the right person combine, it’s a beautiful thing, because the person brings their talents and makes the church a better place, and the church makes the person a better person, and together they are truly able to advance the Kingdom of God and be the hands and feet of Christ. 

But what happens when mental and chronic illness are brought into the Body of Christ which is the Church? 

I believe wholeheartedly that the Church–both the whole, universal Church, and individual churches which are all supposed to be little branches of the Church Universal–are all the Body of Christ, and every single member is made in God’s image. That’s right, every single member. Often, all members aren’t treated that way, and it breaks my heart.

 I believe if Jesus lived today, he would be appalled by how many churches treat people with mental and chronic illness. They are often rejected, stigmatized, left behind, and ignored. Because of this, many people with chronic and mental illnesses, which are often invisible, hide their illnesses from church communities, which are supposed to be places of love and mutual help and support but more often become a place of judgement and dressed-up facades. There are many churches that do strive to do better, though, and I hope everyone with a mental and/or chronic illness finds one. 

I haven’t been in the position of trying to find a church family to belong to for a while, and it’s especially complicated for me because I have my Masters Degree in Divinity and have worked on staff of several different churches. The last few churches I have been at I have been at because they’ve hired me. I have learned a lot and benefitted a lot from all these churches, but I never really “church shopped,” or looked for a church that I will attend, not work at, that will not only best fit mine and my family’s needs, but also that I can contribute to and help through my gifts and talents.

Since I have last looked for a church, years ago, I have received several diagnoses that might not define me, but definitely affect how I view the world, and myself. These include Bipolar II, Ehlers Danlos Syndrome, PTSD, and Mast Cell Activation Syndrome, adding to the Chiari Malformation, Generalized Anxiety Disorder, and Panic disorder I was already diagnoses with. My health has deteriorated, and it affects how I act, including in church. This makes me have several considerations as I consider finding a church that will accept me for who I am and that I can give my gifts and graces.

First of all, is it a church that generally is accepting and understanding of mental health? I know lots of churches that get very squeamish around discussions of mental health. They see anxiety and depression and other illnesses as sins, not disabilities, and they do not take the time to understand them correctly. Is it a church that wants people to sweep their mental illnesses under the rug and be their polished, prim, dressed up “Sunday selves”? Jesus didn’t deal with “Sunday selves.” He dealt with prostitutes and tax collectors; widows and orphans. He loved people the way they were, and called others to do the same. 

I want a church where I can be open about my anxiety, panic disorder, and bipolar II, and where other members feel open about theirs, too. I want a church where people would be no more nervous with me working with children and volunteering and leading in different church leadership capacities than they would be someone with diabetes or heart disease. I want a church that advocates for inclusion of people with mental illness in their church and other churches and sees them as an essential part of the body of Christ. I can help with this, but I can’t do it on my own. It has to be a whole church effort. 

And generally, how is the church with chronic illness? Is it the kind of church that only is comfortable with illnesses that are neatly resolved after two weeks of prayer? This sadly happens more often than you think, and at many churches I’ve seen. These churches preach the power of prayer, and say if you only pray hard enough, you will be healed. 

But I don’t believe that my chronic illnesses will likely be healed. They are genetic and lifelong. And while I believe God is a God of miracles, I don’t think curing my Ehlers-Danlos Syndrome, Chiari Malformation, or Mast Cell Activation Syndrome are likely miracles God is going to perform. I will likely have these illnesses for life, so what I want from the body of Christ is prayer for management of symptoms, help when the symptoms flare up badly, and most of all, love and understanding, rather than judgement and bewilderment. I want a church where they help put my daughter’s coat on when I had to sit through all the hymns because my hips hurt too badly to stand, not where they look at me judgementally because I’m clearly too young and healthy looking to be ill. I want a church that understands I have good days and bad days, and that I might have to call off volunteering for a Sunday because of a flare, but I will try my very very best to be there. And I want a church that will still let me help; I may have sicknesses, but I am passionate about helping children develop lifelong faiths, and I am very good at what I do, even if my health sometimes gets in the way of that.

I know not all people with chronic and mental illness are religious, and even if they are religious, maybe they do not attend church for various reasons. But for me, church attendance is very important to me, and I want to find a church where I can be open and help them be the hands and feet of Christ just as much as they help and support me. We don’t have any family in the area, so it’s important for me to find a church to be like family for us. 
I have found a church that seems promising, but I have only visited a couple times, so I will have to keep going and see what God has in store for me! Until then–and past then–I plan to keep being an advocate for Christians with mental and chronic illness because they bring so much richness and value to individual churches and the Church Universal. 

The Diagnosis I Don’t Write About (Until Now)

I started blogging in January, and in the nearly three months I have been blogging I have been very upfront about my chronic pain and illnesses and how they affect my life. 

I have also mentioned, at least in passing, my long struggle with generalised anxiety disorder and panic disorder. Other than my Chiari Malformation, which I was diagnosed with in eighth grade, my anxiety is the condition I’ve been diagnosed with the longest, and so I’ve learned to be open about it. 

But there is one diagnosis I have not written about openly, and that is my diagnosis with Bipolar II Disorder, which I received late last August. 

The more I don’t talk about it, the more my bipolar feels like this big secret, this heavy weight. But honestly, most of this is self-imposed. I was so afraid of all the “what ifs”, of all sorts of imagined judgements, that I did not allow myself to be an advocate for bipolar disorder, like I attempt to be with my other conditions, that I have never written about my bipolar. I let it be the elephant in the room, something I let my doctors treat but that otherwise I never talk about. 

But I believe it is something we should talk about. Mental illness is often comorbid with chronic pain. Me hiding my bipolar disorder diagnosis doesn’t help anyone. And if you’re afraid to talk about a particular diagnosis you’ve gotten…You’re not alone. But your mental health diagnosis is not shameful. It is not something that has to hold you back from a job, or parenthood, or a full life. It’s just something else that needs to be dealt with and treated, just like any illness.  

My bipolar disorder, just like my Chiari Malformation, my Mast Cell Activation Syndrome, and my other disorders, doesn’t control me. Sure, it is definitely hard some days, and it is something I have to treat: just like any condition. But by acting like it’s something shameful, I actually only hold myself back from getting good treatment. 

I have found a good treatment plan for my bipolar disorder, thanks to my doctor and therapist. It didn’t come overnight, and my fear of the stigma was a big reason why. I have never had a problem taking medication for my chronic physical illnesses, but fought having to take medication for my bipolar. I treated it like a personality weakness, something I could power through, rather than what it is: an actual medical condition. Finally, with the support and urging of my family and friends, I stopped fighting my need for medication and counseling. Thanks to them, my bipolar is incredibly well-controlled, and my treatment plan helps me to be my best self. 

I am finally sharing openly about my bipolar diagnosis because I do not believe it is a diagnosis that is shameful. If any of my friends were to share with me that they had bipolar, even before I had gotten my own diagnosis, I would have accepted them fully, asked how I could help, and not treat them any differently. So why would I not talk about it myself? I cannot talk about how much I value honesty and vulnerability–two things I value most in the world, as a writer, minister, educator, and person–if I am not willing to be honest and transparent about all the conditions I’m being treated for. 

People with all sorts of chronic illnesses, both physical and mental, thrive in all sorts of professions. We are writers, teachers, business owners, scientists, advocates, and much, much more. And if I believe that bipolar is nothing to be ashamed of–which I fully do believe!–then I need to practice what I preach, and be open about my own diagnosis.  It is a diagnosis I am happy I got, because it has led me to effective treatment which therefore helps me live a more healthy, well, happy life, where I flourish in all my roles. 

Finally, I also believe, as a Christian and a Christian leader, that mental illness is nothing to be ashamed of, because we all are created in the image of God. Mental illness is exactly that–an illness, not a personality weakness or a punishment from God–and we should treat mental illnesses like we do all illnesses: honestly, with dignity and respect for the whole person for whom our illness(es) is only a small part. 

Replacing Guilt with Grace with Chiari Malformation 

I am a naturally guilty person. Feeling guilt over situations is my first reflex. I feel very easily like things are my fault, and that I should have done better, tried harder, somehow foreseen whatever situation I made a mistake in. 

This is only compounded–or maybe caused–by my lifelong chronic illnesses, both physical and mental. I logically know none of them are my fault; this is how I am wired, how I was born or developed or whatever. But the guilt still flares up more every time I go into a flare. When I have a horrible Chiari headache and still go into work but am not my normal peppy, bouncey self, my first reflex is to apologize. I apologize not just for what I do, but for who I am. Guilt makes me feel like a mistake, like I am fully defined by my illnesses and good for nothing else. 

My last post was about control; what I can control, and what I can’t. My illnesses, as I wrote, are something I can’t control: but what I can work on controlling is my reactions to my illnesses. I can work on moving from a place of guilt to a place of grace. 

Grace for myself is probably the hardest grace I have ever experienced. When I make decisions, especially decisions around my illness, I feel intensely guilty. Recently, I had to make one of my hardest decisions yet: leaving a job I loved for another, my health and need for health insurance being the reason. My first reaction was so, so much guilt. 

Then, all the stress from that decision sent me into a series of flares, and temporary illnesses–a bad cold and a bad stomach flu–and a Chiari flare on top. That meant that over the weekend, I was pretty much good for nothing, and my wonderful husband and in-laws took over a lot for me so I could rest. I am not going to lie: guilt was my first reaction there, too. But since in 2017 my goal is wellness, I decided to take a deep breath, accept the help, and consciously focus on giving myself grace. I have to let myself be ill, because I can’t control it, and not feel guilty about it. 

There’s a powerful Christian song by Matthew West called “Grace Wins” that really helps me in my guiltiest moments. I actually have switched to listening to a lot of inspirational music this year and I have actually found that it has helped me tremendously in my chronic illness journey to wellness. I am going to write a post shortly about Christian songs that help me through my Chiari battle, if that’s your belief system and that helps you too (if that isn’t, that’s perfectly fine! You can still have grace with yourself and not be guilty about your chronic illnesses.) 

Here is a section of the lyrics:

There’s a war between guilt and grace, And they’re fighting for a sacred space But I’m living proof Grace wins every time

No more lying down in death’s defeat, Now I’m rising up in victory, Singing, hallelujah, Grace wins every time. 

This song helps me see my life as precious and sacred and important to God. I only have one life, and I could let it be ruled by guilt. It would be easy for me to let every single one of my decisions be motivated by feeling like in not enough, that I have to prove myself to people, that I can’t show others my cracks and flaws, that illness is weakness. It helps my grace define me, not my guilt, because I remember grace is stronger, and I am stronger. I can rise up after a bad day. My bad days do not define me. Grace defines me. I can give myself grace, remember to be strong, and triumph the next day. 

But moving from guilt to grace is not easy. It’s one of the hardest things I do. It involves a complete mental shift, where I acknowledge the guilt and remind myself–sometimes out loud–that, even if it is a mistake I made, I am already forgiven by God for it. And if it is illness related, then it’s not even something I need to ask for forgiveness for, because it’s not my fault! I don’t need to feel guilty about my illnesses, because there’s nothing guilt can do. 

How does grace look in practice? To me, it means making choices that sometimes mean putting my health first, even if for some reason I feel like there’s an unconcious “should” that makes me feel guilty. I have a great therapist who gave me a great challenge to get rid of unconcious “shoulds” in my mental vocabulary. I have a lot of them, and they all lead to guilt.

 For instance, I “should” work all day, instead of taking a split shift job where I come back and nap and take care of myself, then go back in. I. “shouldn’t” nap, because I am 25 and should be a healthy career woman. I “shouldn’t” let my husband watch our daughter for a bit so I can take a break, because moms shouldn’t be chronically ill. 

These “shoulds” are all ridiculous, and they don’t live in reality. I am the way I am, and I firmly believe that I need to have grace and love myself, exactly as I am, illnesses and all. And to do that, I need to have grace with myself. I need to do things to build my self-esteem. I need to have honest conversations with people in my support system, people who love me unconditionally, about what my health struggles are and how they truly affect my everyday life. I need to have honest conversations with my doctors and take medications that help me, instead of feeling like I “should” be able to power through my conditions without medication. 

I need to look in the mirror, and have grace and love for what I see. This body isn’t perfect. She is often sick. But she is mine, the body God gave me, and all people are made in God’s image. Even the chronically ill; even me. 

This is also important because guilt makes me sicker. It builds up inside of me and becomes stress, and pushing, pushing, pushing because I am motivated by guilt, not grace, often causes me to totally neglect true self-care, have a meltdown, and end up in a long flare. Guilt is a counterproductive emotion.  

I am human. I make mistakes, big and small. I am chronically ill, and sometimes I am not able to do what I would like to do, and sometimes must let things go so that I can keep being a healthy, whole person. And the key to this is grace: grace with myself. I forgive myself, I accept myself, and I love myself, chronic illness and all. 

Having my Conditions vs. My Conditions Having Me 

In 2016, I didn’t know what was causing me constant chronic pain and myriad other symptoms. But even–especially, actually–before I had names for my conditions (Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, Chiari Malformation), my conditions had me in a chokehold. Even when I was doing other things, thinking about my pain consumed me. When would it flare up again? Was I a burden on others? How long would I be able to keep doing the things I loved? I let the pain take control: of my thoughts, of my pain, of my life. 

I still pushed through, and I did accomplish some significant things. I graduated with my master’s degree. I started my first professional job. I was a mom and a wife. But I was in pain first. My identity as someone who was in pain and sick a lot became my primary identity. Everything else mattered, but it was secondary. I felt like a slave to my pain. 

My correct diagnosises began in late 2016, and so did my turnaround. It’s not that my symptoms got all that much better, especially not right away: though having the right management program definitely helps tremendously. But the number one most important thing naming my illnesses did was strip them of the massive amounts of power they had over my life. My enemies were no longer unknown, and I took back the reins, took back control. 

I never really thought about control until fairly recently, when my brother started talking to me about how everything in life boils down to control and people wanting control. There are many, many things in life we have no control of. For the most part, chronic illness is one of those things. 

I cannot control when my diseases are going to flare up. This is just something I must accept. Sure, there are sometimes preventative measures I can take, but I sometimes flare because of the weather, noise, stres…Nothing. I cannot possibly minimize all factors. 

What is in my power to control, though, is what I focus on. Do I focus on the unpredictability and uncontrollable nature of my illness, which leads me to feel weak and powerless? Or do I instead try to give my conditions as little attention as I possibly can, and focus on what I can control? 

It all started small: with a list. A list of things that made me happy. There were big things on the list, like my relationships with my family and friends; my relationship with God; meaningful, fulfilling work. And there were also lots and lots of little things: freshly painted nails, blueberry coffee, Christian music, reading certain books of the Bible.  

From there, I decided to make decisions that maximised happiness, and I found that plenty was in my control: little things that made a big difference. I was in control of making sure I painted my nails once a week, made myself coffee, cultivated relationships with my family and friends, went to work even when I had a bad Chiari headache because I know I love my job and it’s meaningful to me even on the bad pain days. I listen to positive music and internalise the messages; I try to read my Bible most every day. 

Some days I have less control: I can’t even get out of bed. But when I’ve been focusing on how much power I truly have on the other days, something amazing happens for me: I feel powerful, even on the days I can’t get out of bed. My overwhelming pain feels temporary, and I know it is not all there is to me, even when it is all I feel. The positive messages I send to myself on all of the other days push me through the really bad days. And even on those days, I am not controlled fully by my conditions. They hurt me, they affect me, sure. But I am always stronger. 

This is the first post I am writing as part of a series on changes I have made in order to change my perception on my illness and therefore how in control I feel: not of my illnesses necessarily, because they are constants, but of my life that my illness is a part of. My illnesses provide challenges, constraints, and boundaries, but I am intuitive, strong, and wise. I am so much more than my illnesses. I have them now, and I am doing everything in my power to keep from them having me. 

Psalm Sunday #4

For today’s post, I’m going to do something I don’t normally do. I pasted the entirety of Psalm 34 here for us all to read together. I normally will just include selections, and if I wrote about the whole passage, will include a link. But Psalm 34 really resonated with me this morning, and I have a feeling it might with you too. So read these words below, and let them really wash over you. Then I will return with my thoughts on them. 

I will bless the LORD at all times; his praise will always be in my mouth. I praise the LORD — let the suffering listen and rejoice. Magnify the LORD with me! Together let us lift his name up high! I sought the LORD and he answered me. He delivered me from all my fears. Those who look to God will shine; their faces are never ashamed. This suffering person cried out: the LORD listened and saved him from every trouble. On every side, the LORD ’s messenger protects those who honor God; and he delivers them. Taste and see how good the LORD is! The one who takes refuge in him is truly happy! You who are the LORD ’s holy ones, honor him, because those who honor him don’t lack a thing. Even strong young lions go without and get hungry, but those who seek the LORD lack no good thing. Come, children, listen to me. Let me teach you how to honor the LORD : Do you love life; do you relish the chance to enjoy good things? Then you must keep your tongue from evil and keep your lips from speaking lies! Turn away from evil! Do good! Seek peace and go after it! The LORD ’s eyes watch the righteous, his ears listen to their cries for help. But the LORD ’s face is set against those who do evil, to eliminate even the memory of them from the earth.  The righteous have many problems, but the LORD delivers them from every one. He protects all their bones; not even one will be broken. But just one problem will kill the wicked, and those who hate the righteous will be held responsible. The LORD saves his servants’ lives; all those who take refuge in him won’t be held responsible for anything.

(Psalms 34:1-‬22 CEB)

This was certainly a week where I had “many problems”; I would not call it a stress free, easy week at all. I finally got home after an incredibly stressful Saturday where I was robbed and both my husband and my cars broke down in different states. A third car broke down on us. My phone broke. We didn’t have childcare for two days. I had to deal with credit card fraud. I started a new job. I found out we are going to have to switch primary care doctors because mine no longer is going to take my insurance. I had a major medical test and found out that I still have a serious brain condition that is only improved with surgery. 

Even a few weeks ago, all of these events in tandem would have been enough to majorly stress me out. I have been struggling with anxiety and worry my whole life, since I was a child. And yet, somehow, I have had an incredible sense of peace this week. I’ve been able to use positive coping skills. I have felt extremely happy and well all week. It as an amazing week because of this. 

How did this transformation happen? I’m honestly not sure, but I am confident it is the Holy Spirit acting in me, not myself. I am confident that God saved my life last Saturday night. 

It’s probably cheesy, almost like something that happens in fiction and not real life, to say that after what happened Saturday, it was like a switch was thrown to where I could really trust God fully and live my life differently. The Holy Spirit took over. And I may have suffered this week, but I have been consistently full of praise, because I know God is with me. I am more aware of God’s presence in my life than I ever have been. 

I am sure the week ahead will hold struggles: for you, for me, for all of us. God does not promise us a life of ease and free of problems, but quite the opposite: we are promised a life of picking up our cross daily and following Christ. But what we are promised is that the Lord will listen every single time we cry out; and for that, we can praise God in every single circumstance.