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.
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.
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.
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.