Updated: Sep 24, 2019
Life with Chronic Illness is not easy. Every day is already going to be draining, and you have to go to work too?! It ends up being some kind of 4 sided Twister-cluster of a balancing act.
It can be hard to figure out how to balance everything in your life and handle the things being thrown at you 24/7, but balance is the only place that breeds healing, so I believe it's something to be valued and worked toward. Hence, this ridiculously long post.
In case you've not experienced it before, I'll walk you through a normal day with Chronic Illness and a busy life. The day is hard from the get go - waking up with Chronic Illness means waking up feeling like you've just done a triathlon and attended a raging party afterward. But you didn't, and now have to pull yourself out of bed regardless of how horrible you feel.
You've got a job to get too. You lay there wishing you didn't have to move and eventually you will yourself up out of bed, knowing every single joint will pop painfully (but fingers crossed not out of place), your muscles will be hard as rocks, your head will feel like a hangover and a truck hit you at the same time, and when your feet land on the ground, it'll most likely be very painful as your body settles into an upward position for the first time that day.
You go through your morning routine of getting ready while sitting on the side of the tub as much as possible - you already can't stand without a mobility aid, AND you have to go put in a full 8 hours pre-exhausted, so you're saving as much of that bottom-of-the-bottle energy as you can. You make yourself breakfast and pack your Health-Bag with snacks, lunch, and supplies for the day. You crutch down the stairs, your stride always stumbled by a bag of trash, compost, or recycling (because you're going outside anyway). You drive yourself to work, hopefully early this time so as to avoid the stop & go traffic that always causes your right foot and leg to spasm quite painfully. You make it to the office and are already exhausted, but you push through 7 back-to-back meetings, a welcome tour, and the constant flow of tasks & planning. You also have to squeeze in a therapy appointment or two during lunch and/or after work, if you didn't already go to Pool Therapy that morning beforehand M, W, & F.
You've fought traffic throughout the day and your right leg is spasming painfully, but you're finally home now and have just enough left to crutch yourself up to the 3rd floor, sit on your throne of pillows, and fade out as much as you can whilst your entire body is screaming at you. You're in your own personal hell and brought back to reality in a snap when you realize you're starving. You realize this because the cat is screaming in your face because she's starving. You at least get up to feed her and make yourself food, glass in your hips, body so fatigued you're struggling to hold yourself up. You manage to make food and awkwardly bring it and your painful ass back to bed (which is the only place you can currently stand to be), and wonder why the hell you thought a white duvet set was a good idea because you spill most every meal due to lack of muscle strength & spasms. You eat - maybe it makes you feel nauseated, maybe it doesn't - and realize you still have at least 7 things on your daily to-do list including cleaning, dishes, personal development projects, calls, bill management, etc. Will you actually accomplish these things or will you do nothing but lay in your pain, rightfully, after such a draining day? It's honestly a toss-up, sometimes it's both, sometimes (mainly Fridays) you give up and do nothing. Getting rest is the healthiest thing you can do next to drinking water after a long day of people-ing, working, errand-running, and therapy-going. But rest too much, and those 7 undone tasks grow day by day and become overwhelming and can cause a lack of balance.
I have very high expectations for myself. I have the potential to get so much done in a day - look at everything I do just to survive a day! Imagine the things I could do if I didn't have to use 100% of that potential just trying to live. I'm over 85% Pitta & a Cancer. Ya Gurl WANTS to get shit done. I feed off of it in some sick satisfaction of the soul. It used to kill me that I couldn't do everything on my list or even things that I wanted to do, but it was all I could do to just survive the day and lay there in pain at night. I still struggle with figuring out how to accomplish all my tasks. I've learned to take my time with things and work on each task little by little, daily if possible. I use that method with cleaning and apply it to other areas of my life frequently. #certifiedchronicillnesshack
But in my 90-day planner, and forever lingering in the back of my brain, are all the things that have been abandoned due to fatigue/pain/flare-ups. I used to beat myself up about it relentlessly, but I learned to be compassionate toward how much of my effort it takes to survive, and that figuring out how to thrive will come with time, healing, and practice. And for the haters in the meantime I say only this:
If you're not also in the arena getting your ass kicked, I'm not interested in your feedback. - Brené Brown
Chronic Illness Anthem, Anyone?
Poor Gut Health has now been linked not only Autoimmune Diseases but Thyroid problems and now Fibromyalgia as well! And gut health starts with....? That's right! WHAT WE EAT. We all grew up hearing you are what you eat, but we all ate the crap anyway. Because it was good, convenient, cheap, and hell - everyone else was doing it!
Not only do we all need to be eating better, but when you're chronically ill, it's important to not poison your body further, remember to eat, and to have food prepped or easy to make for when you do eat. I accomplish this by cooking a large piece of meat & making bone broth every weekend so that I have nourishing broth and ready-to-eat protein throughout the week. (Check out those recipes here and here). Grocery store finds are going to be huge if you're on-the-go & managing your illness on your own like I am. Anything pre-made that is corn-free, soy-free, dairy-free, rice-free, potato-free, lectin-free, gluten-free, nightshade-free, egg-free, and sugar-free is a god damn blessing so take what you can get & make things that much easier on yourself!
My favorite way to get healthy snacks on a budget is to go to Costco and get them in bulk or order from places like Thrive Market. Whole Foods is great, but paying $6 for a 3 oz bag when you could pay less than $10 for a 3-pound bag at Costco is a no brainer. I also bake for myself on the weekends so I'll have comfort and food in my stomach in times when hunger sneaks up or when I need a boost to keep me going. It's also essential to invest in protein shakes if you're having trouble eating enough, finding the time to eat, or losing too much weight.
This brand is allergen-free and has amazing flavors! (Pumpkin Spice you guys - pumpkin. spice.) The best part about it is that it's Bone Broth protein so it's also good for your gut! And not as gross as it sounds. Check them out here.
You may never get to eat a f*cking Cinnabon again. You'll never have an Olive Garden Garlic Bread Stick, Dr. Pepper, or a bag of Funions. And that's A-O-F*ckin-Kay because it was poisoning you and you can still have great food!
Moment of silence for all the fried food, sugary treats, and PSL's we'll never have again (and flashback to the one time they legit wrote my name as "Facey". Come on guys! I've worked at a Starbucks!)
The world of Allergen-Adaptation is getting bigger! There are so many options you can buy or make for yourself from sauces, to ingredient replacements, to full out meals! Here are some of my favorites:
Hakuna Banana Banana Ice Cream
Cinnamon Rolls - Check out my Battle of the Cinnamon Roll Mixes Blog Post Here
Pancakes - Which Pancake Batter is Kween? Check out my Battle of the Pancake Mixes Blog Post Here
Lesser Evil Puffs (a Cheetos alternative)
P.s. I'm going to the Nourished Festival as an official member of the press! Stay tuned for all the samples and goodies and possible additions to this list!
Joyce Sunada said, "If you don't take time for your wellness, you will be forced to take time for your illness." and boy was she f*ckin' right.
If you have autoimmune, fibromyalgia, chronic fatigue, or a like illness, giving too much to other people and not enough to yourself *in SOME meaningful way* may have contributed to where you are now. Self-care is not only a way to connect back to yourself and who you really are, but this much-needed relaxation and restoration may have been a prevention piece missing from your puzzle all along. Take healing from Chronic Illness as an opportunity to grow and love yourself in the process. Self-care is not only a way to connect back to yourself and who you really are, but it's much needed relaxation and restoration you've been denying yourself for so long. Take Chronic Illness as an opportunity to grow and love yourself in the process.
You've already got a shit ton and a half going on, so how can you even make the time for Self Care?
Integration of self care into your regular routine is key! Every time I go to the bathroom (and believe me, that's often) I do at least one self care action. This started when it became painful for me to get places, so I'd consolidate my trips. Well, if I'm going to the kitchen anyway, I'm taking these things and doing a, b, c & d while I'm in there because I do not want to have to get up again to do something I forgot. So I figured, hey, as long as I'm here in the bathroom peeing because I drink liters & liters of water a day and can't help it, I might as well spritz some rosewater upon my damn self like the kween I am while I'm here. Or use my cucumber witch-hazel toner on my Pitta-prone face. Or run my hands under warm water for 5 minutes straight because my office is an ice-block. Or lotioning up head to toe. You get the picture. Self care doesn't have to be a daunting process. It can be a bunch of little things you do for yourself throughout the day. And before you know it, they'll be welcomed pleasures and a boost throughout some of the rough ones. See how I practice self care @ the office here.
Activity levels can be different depending on the severity of your illness or disability, but in almost every case, a little bit of exercise is much better for you than none at all. I spent three years doing nothing because I was in so much pain and thought a lack of activity would help relieve the pain and or alleviate my conditions. I was slow to learn that it didn't matter what I did or didn't do - I was going to be in pain. Yes, a hike is going to cause a different kind of pain than if I were to do nothing for 5 days straight, but there's pain with doing nothing too...so why not do something? Anything. Whatever I can handle that day. I encourage you to do the same if possible. If that means going for a walk, great. If someone can push you outside in your chair for a few minutes - that's so good. If you can curl some soup cans - dope. If it means going for a hike, working out at the gym, or going for a jog, then that's fantastic! Do what you can do or your physical body could waste away even more and your soul can get dark with the sadness that comes from total seclusion and under-activity.
Make whatever activity you choose to do as easy on yourself as possible. You're going to be in pain, but try not to make it worse, you know? Drink water, eat well beforehand, take breaks, don't forget to breathe, have your bath already drawn or your sweatpants and some tea out and ready for you when you're done. We have to replenish as we go and put in as much, if not more than what's being taken from us by physical activity.
The Purge: Friends Edition
No - please don't go dress up as clowns & kill all your friends one night a year. But you do need to sit down (you probably already are...good! You can start right away) and take a good hard look at who you want to be spending your time with. You are in pain, doing everything on your own, working full-time, and taking care of yourself every minute of the day. You do not need to be wasting time on friendships or relationships that aren't going anywhere. Odds are, you might have already lost a friend or two since you've been sick. GOOD! Keep them lost because they don't have what it takes to be your friend through this and you shouldn't waste an ounce of effort on them. Decide who's worth investing your time & effort into and keep those people close - an inner circle of sorts. These are the friendships you can lean on through these hard times you have coming your way - compliments of Chronic Illness.
It's so hard to say no, but with chronic illness, depending on your overall severity, the day, or both, you sometimes don't even get the choice.
But when you're having more good days than bad, you start doing more because you've been held back for however long it's been since you felt this good. I still have problems with doing too much when I start having less pain & overall symptoms, but we need to create boundaries for ourselves or we'll push past our limits and be flaring & recovering in an endless, vicious cycle. Let's say it's the weekend and you've been invited to activity after activity, but you know that in the next 7 days you have to do dishes, clean the filth in your apartment, do laundry, put in a full week of work in AND coordinate a giant, 3-day business retreat out of town with 44 people attending, AND be on your period starting the same day as the retreat - oh! and you get to attend a baby shower for your niece an hour after you get back from the retreat so GURL you need to pick and choose which invitations you're going to say yes to because all those other things are mandatory as fuck and you have to get through them. It's hard to create those boundaries and miss out on events, but when you've got as much going on as we do and have Chronic Illness, you need to focus on what you must get through rather than on doing all the things you want to do.
Life is GOING to take it out of you, especially when you have a busy-ass week like the one summarized above, so you have to prepare as much as you can ahead of time and replenish as you go. Bring water and snacks with you everywhere. If you don't have a "diaper bag" for your adult-ass, Chronically Ill self, you're missing out on the best way to keep your live-giving, ass-saving essentials organized and accessible when you have to be out of the house. And when you're home, make sure you're eating, as comfortable as possible, lathering on as many muscle creams and lighting as many candles as possible while you put your favorite music on because you just went outside. You are about to be in significantly more pain real soon here, so make it nice around you and it'll be easier to endure (plus it helps you focus on something other than the pain).
Invite people over. Everyone with Chronic Illness knows their place is where they'll be the most comfortable. Simply going to and being at someone else's house, a restaurant, a concert, or a party is going to wipe you out and make you uncomfortable.
I frequently suggest making pancakes at my place over going out somewhere to brunch in the city on a weekend. Or that we study at my place and I'll break-out the charcuterie. Or let's craft, Netflix binge, write, color - whatever! - at my place. Don't feel embarrassed about it. These are your friends, your people that you want to spend time with. You would be willing to suffer through pain and exhaustion to do those things with them. You're just asking whether or not they'd be comfortable spending that quality time where you'd be in a better way.
I also like to do an Open House party each season. I make breakfast, lunch, and snacks with in-season foods and invite my family & friends to stop by at any point between 10 & 6 to hang out and eat some food with me! It's a great way to see everyone I know and love, which can be hard to do regularly when Chronically Ill, AND eat good food all day!
It's also nice to knock out all of these potential social gatherings out at once. At the end of the day, my heart is full and I can focus all my energy on healing and surviving. It may be a lot of effort, but again - something that fills the soul and therefore is worth the pain.