Self-care is a hot topic lately. Society pressures us to "go, go, go" as fast as we can for as long as we can. When we find ourselves overwhelmed and overstimulated, we're reminded to take time for self-care. The idea of self-care for those who are healthy is drastically different from the idea of self-care for those of us with chronic illness. For healthy folks, self-care is a way to relax and recharge from running at a break neck pace day in and day out. For folks with chronic illness, self-care is almost a necessity to be able to function.

For me, self-care can be divided into two categories-self-care that fulfills a necessary function and self-care that is a luxury. The reason I do this is because so often I don't feel well enough to complete basic tasks like laundry, dishes, and showering. These tasks that so many take for granted are so, so difficult for me that I've come to treat them as self-care because I just feel so much better when I can get them accomplished. When I'm feeling down, I try to start with "necessary" self-care like tidying up my room, or cleaning the kitchen. I'm able to boost my mood and knock something off my to-do list...WIN-WIN!!! Some days, I just feel like I need to treat myself, those are the days when self-care consists of a mani/pedi, deep conditioning my hair, or doing an at-home spa day.

Self-care is so important to me because for so long I would put myself last. Literally everything else came first. Back when I was working a traditional job, I would pick up extra shifts, stay late, volunteer for committees, lead in-services, etc. I was also active in my church and sorority alumnae chapter. Whew! Whenever I would find time for myself, it was limited and usually something like a mani/pedi, haircut/color, or a massage. I waited until my toenails were beat up and my poor hands were begging for some TLC after all the hand washing and Purell at work. My hair was more split ends than hair and my back hurt so bad, it was a miracle that I could get through a shift never mind four shifts. I was a hot mess! I spent so much of my life before chronic illness running myself ragged and only allowing minimal time for self-care. I often wonder how different life would be if I had placed more energy into taking care of myself.

Now that I'm essentially forced to make self-care a priority, I've taken some of myself back. This blog is part of my self-care. Writing and sharing my struggles and triumphs makes me feel like I'm contributing something to posterity. Inspiring and encouraging others makes my heart happy. If sharing my missteps can help someone avoid the same struggles I've endured, then I will have fulfilled my purpose. So often we are made to feel guilty about taking care of ourselves, especially if we have families who depend on us or children who need our care and guidance. But like my momma always told me, "You're no good to anyone if you don't take care of yourself."

You can't pour from an empty cup. This is cliche, but it is so true. I am no good to anyone if I am constantly running myself into flares. In order for me to be the best functioning adult I can be, I need to take care of myself. So if that means the dishes sit a little longer than I'd like so that I can take forty-five minutes to slap on a face mask or fifteen minutes to read something that will feed my soul, then sit they will. I will get to them (and the rest of my tasks) when I have recharged. I'll probably even have more motivation to get the rest of the to-do list done when I feel refreshed.

So I will continue to challenge the "go, go, go" and continue to make self-care a priority. It won't make my illness go away, but it will make the hard days easier to fight through.

Organization. For many, this word strikes terror into their core. But for those of us who live with chronic illness, organization is a necessary, albeit elusive evil. Before I was diagnosed, I prided myself on my organization skills and keeping a tidy home despite working twelve hour shifts in a busy emergency department. My momma drilled the old adage "cluttered desk, cluttered mind" into my head throughout my childhood and when I ventured off to college, I carried this mantra with me. I can't stand clutter, it makes me nuttier than a fruitcake. With that in mind, buckle up because this post is a doozy.

But when I got sick, my ability to maintain my home to the standards I was used to went down the drain. I spent so much time trying to keep up with the clutter, no matter what I did, I felt like I could never catch up and my house never stayed clean. After months of frustration and trial-and-error, I'm finally making some progress. I will caution that getting to this point wasn't cheap (if you're here looking for cheap/frugal ways to organize, I'm sorry, but that's not where this is going). I tried various methods of using what I had and making minimal purchases, but I ended up having to buy stuff to get my house to where it finally looks like a grown-up lives here. It's still a work in progress, but it's progress.

I started with the master bedroom, when I moved in, I didn't have a whole lot of furniture. Looking back, that's probably why I encountered so much frustration with keeping everything tidy. Purchasing a small dresser, nightstands, and a set of plastic drawers for the closet was key to keeping my room organized. Despite this place being a two bedroom, I still seem to be as limited on space as I was in a one bedroom apartment that was literally half this size. About two weeks ago I decided to tackle the closet again. I went and bought some of those big plastic bins. I had a bunch of clothes in space bags from when I moved in here a little over a year ago, so I started with those. I separated them into keep and donate piles. Into the bins they went. I cleared an entire shelf of space bags into three bins-two of stuff I'm keeping, one to donate. The last bin is for seasonal clothes, here in Texas the weather never really makes up its mind. So I have some of my winter coats and sweaters hanging up and the rest are in the bin. Once it starts to get colder, I'll swap out my summer dresses for the rest of my winter clothes. Added bonus, all of those bins are ready to go when it's time to move out of here. I'm not sure if I'm going to try to pack everything into the plastic drawers when it's time to move or get another bin, but either way, most of that packing is done!

The next big project was the living room. Despite having a coffee table that doubles as storage, I had amassed a collection of stuff and nowhere to put it. I kept trying to find ways to store the stuff where I could still get to it easily but have it out of the way. When I got the nightstands, I also got some of those fabric bins to use as "drawers" but they were too tall for the nightstands so I repurposed them for living room storage. I started with two and realized they were the solution to my storage problem. So I grabbed two more to match the ones I already had and added a few smaller ones. I had originally planned to find a console table that would double as a place to store them, but ended up putting a chair in the spot the table would've gone. During one of my many trips to Target, I found a cube shelf that would fit the larger bins and had the option to split the cubes in half for the smaller bins. I ended up with more than I bargained for, the 9x9 unit was a lot larger than I anticipated, but it worked out better than I thought. The bottom row is reserved for shoes-boots on either end and a fabric bin in the middle for flats, sandals, and sneakers. The middle row is all bins full of stuff that was previously strewn throughout my living room. I split the top middle cube and it holds the smaller fabric bins with printer paper and remotes for the TV and game consoles. There's a cube for my purse and I have a spare cube for whatever else I may find I don't have a home for. The printer is finally off of the box it came in and now lives on top of the cubes. The difference in the living room is drastic but it's been so nice to have less clutter. (I wish I had thought to take a before picture!)

Moving to the kitchen. When I first moved in here, I couldn't believe how much space I had. Boy was I in for a surprise. I feel like I have no space for anything, even though this kitchen is easily four of my old kitchen. It's openness belies its lack of storage space. I have a set of drawers-one is the standard junk drawer, the next is a collection of random snacks, sugar packets, and Jello boxes. The bottom drawer is dedicated to medication and the drawer above it is home to my parchment paper, plastic wrap, foil, and a handful of other food storage, cooking and cleaning accessories. The cabinets under the sink house the standard cleaning supplies and trash bags, along with alcohol that hasn't been touched in over a year. I've replaced many of the "regular" dishes with their paper counterparts because my illness makes it difficult to do dishes, even with a dishwasher. The remaining cabinets are pretty standard; I don't have a separate pantry, so I've had to make do with using the cabinets for storing my dry goods and other non-perishables.

This brings us to the fridge...it's been such a pain in the behind that it gets its own paragraph(s). The fridge has been the bane of my organizational existence. To make up for the lack of pantry, I use the top of the fridge to store a variety of non-perishables and until this past weekend, all of the Tupperware. This precarious situation often resulted in things falling whenever I would try to grab a bag of chips or a Tupperware to store left overs. I was frequently accosted by bread and chips whenever I opened the freezer. The straw that broke the camel's back was the onslaught of dry goods and magnets that I was greeted with while trying to put frozen food away from last week's grocery shopping. Enough was enough, back to Target I went, where I bought out their stock of fridge organization and food storage canisters. I also grabbed a set of wire baskets to replace the plastic one that was overflowing with carbs. The Tupperware is eventually going to be moved to the laundry closet, but I can finally open and close the freezer without threat of kamikaze dry goods! (Again, I wish I would've thought to take a before picture)

The inside of the freezer is going to be dealt with another time, I used quite a few spoons just getting the stuff I needed and actually organizing everything. I purchased six clear plastic fridge organizing bins and a pair of small plastic "baskets" for the top shelf of the door. The fridge is the standard size top/bottom configuration with few options for shelving inside. I have a refillable water filter that takes up one side of the middle shelf, where space is at a premium. This shelf is also home to my coffee, a selection of flavored creamer, juice, and milk. I took two of the bins-coffee, juice, and one of the flavored creamers in one, almond milk, regular milk, and the other flavored creamer in the other. I had an extra bin that wouldn't fit in the door, so I put it along the opposite side of the water filter and put the butter, chai tea, and some leftovers on top. The top shelf was a disaster-leftovers, small jars, cheese, and deli meat were constantly falling between the narrow wires or falling out whenever I tried to put something else in. I grabbed two of the low, wide bins, put the cheese and deli meat in one and the small jars in the other with the rest of the leftovers on top. The door only has two shelves and they have a pretty big space along the bottom (which never made sense to me)-the small baskets when in the top shelf to keep the sauces, salad dressings, and other small jars from falling out. The bottom shelf was overflowing with lone beer bottles, ketchup, and syrup. The narrow bin fit perfectly and held all of the condiments and syrup. The lone beer bottles went on top of the wine along the bottom shelf. Voila-my fridge has gone from a messy teenager's room to a less messy, teenager's room. (I DID take before and after pictures of this one!)

I already feel less stressed knowing that everything has a place and I'm not surrounded by clutter. Many of my symptoms are exacerbated by stress, so whenever I can reduce stress, I jump at the opportunity. I have enough stress that I can't really control, but I can control how organized my home is and the clutter I (choose not to) surround myself with. I still have some lingering projects to work on-mainly the upstairs bathroom and the "laundry room". But for now, I'm content with how far I've come. 

Getting here took a lot of spoons, but it will be worth its weight in saved spoons as I go about my daily life without having to worry as much about keeping the house clean! 

When you spend as much time online as I do, you work to make your social media feeds places of positivity and encouragement. I have seen a few different posts talk about the importance of making your bed every morning. So I decided to give it a try. See momma? All that nagging finally paid off.

The reasoning is solid, you've already accomplished the first task for the day. But when your sleep is often less than restful and it takes you almost an hour to get out of bed, the last thing you want to do before coffee is wrestle with the comforter. There were a few mornings I forgot and ended up making the bed a few hours after I woke up; but as the weeks went on, it became more of a habit, even if I was tired. I was surprised to find that it did help me to be more productive throughout the day. I felt better when I could walk downstairs and have already successfully completed a task for the day. I was more motivated to knock items off my to-do list and didn't feel as down when I had to move some tasks to the next day.

Another tool I've seen many spoonies use is a "done list". Now here's something that was right up my alley. I am absolutely a list girl, I make daily to-do lists in my planner. I have list templates for moving, grocery shopping, travel, pretty much anything you can think of...hmm, that might be a whole post in itself. Like many with chronic illness, I found myself struggling when I couldn't finish my tasks for the day. I'm fortunate in that my depression and anxiety are limited to specific situations and since I've left my traditional job, they've improved. But I found that I would still feel worse on days I wasn't feeling well enough to tackle everything on my list, so I began looking for ways to ease this struggle.

The idea behind a "done list" is that instead of making a list of everything you need to do and checking it off as you go, you make a list of everything you've accomplished that day. I like the idea, but I found I still need a traditional to-do list. My daily to-do lists have made my life with chronic illness easier, they allow me to see what I need to accomplish each day. They help me fit household chores and projects (like organizing my entire house) into my busy weeks of appointments, they allow me to visualize tasks alongside the hours in the day, making it easier to adjust my lists on days I have a lot of appointments or when I just don't feel well enough to tackle everything.

While I have yet to adopt the "done list", I am working on ways to celebrate what I am able to accomplish each day.

I wanted to continue the theme of my last post, which discussed leggings as pants and how I try really, really hard to not look sick. Unfortunately, there are so many who judge those of us who suffer from invisible illnesses because "we don't look sick." Social media has made it easier for us to edit our lives. We all share and post snapshots of everyday life, but everyone is cognizant of what they're posting. It's like going to church on Sunday morning, everyone wants to look their best. Everyone wants to portray a Pinterest-perfect life or share things that make them (and others) happy. We share our happy times, but only gloss over our not-so-happy times. But what does this mean for us spoonies?

It seems like we can't win for losing. If we share our good days, our trips to the salon, our family trips to Disney or the beach, we're accused of faking our illnesses. We can't possibly be sick because we're at the beach. But on the flip side, if we share our bad days, we're accused of being attention-seeking, or worse, trying to scam people (yes, I've had someone say this to me). We're offered (unsolicited) advice along the lines of positive thinking and in some cases, flat out told we're being too negative and bringing everyone down.  So we curate our social media, we constantly seek balance with what we share. We want to be genuine, but we don't want to be too negative. We don't share too many good days, lest we appear to be exaggerating our illnesses. Same goes for our attire, I don't want to look sloppy, but I've also questioned outfits when going to a new doctor because I don't want be accused of falsifying my symptoms. 

All of this has got me thinking. Why? Why are we so quick to judge someone who is ill? Is it because I don't work a traditional job? I promise I'm not sitting at home eating bonbons. My working from home is out of necessity, not luxury. While I am grateful for the ability to work on my own time, I still wish I could hold a regular job. Just because I can pull myself together and have a few good days to go to a wedding, take a day trip to Austin, or go out with friends when I'm feeling well, does not mean I can maintain a 40+ hour a week, 9-5 schedule. My body doesn't work that way. Most of the time, my usual responsibilities of making my doctor's appointments and keeping up with the housework is too much for me. There are some days (and weeks) that I push myself-like this week, I've been dealing with a bad flare (or something, my doc was stumped and has deferred to the specialist) but between my medicine and a whole lot of sleep I've managed to get my bedroom closet cleaned out and organized, my bedroom cleaned and organized, and most of my living room organized. But that's not without a price, I am exhausted, I have lost track of the days this week and missed some phone calls that I needed to make, my business has taken a bit of a backseat, as has my blog. My kitchen is in disarray and I still need to chase down the property manager about my dishwasher. My laundry basket is overflowing and I need to scoop the cat litter. 

But I don't look sick. I may not look sick, but if you look at my home and my chaotic schedule, you can see my illness. You can see the where I started to clean the kitchen but stopped because I was too tired, you can see the laundry pile in the living room that never made it to the laundry basket, you can see the plastic bins, still in their packaging, sitting on the chair waiting to be filled and put away. The chair...the chair that is currently sitting in the middle of the living room because I don't have the energy to help my boyfriend move the futon to the guest room. So it sits, simultaneously blocking the door to the downstairs bathroom and impeding passage from the living room to the kitchen. 

I may not look always look sick, but if you look closely, you can see my illness. 

Being chronically ill, I spend a lot of time online. Some of my most treasured possessions are my iPhone, my iPad, and my laptop. (Yes, I realize this is a "typical millennial" statement.) I've noticed a trend of criticizing others because they choose to wear leggings and yoga pants. Now, I grew up in the South, my momma never left the house without lipstick and my father once refused to allow me to come to the grocery store with him because I was planning to wear sweatpants and a t-shirt. I was raised with the idea that dressing well was a from of respect, both for yourself and others. The only time I ever wore PJs out was for a theme day at school, even then, they were brand new PJ pants and they were appropriately sized. When I was still working, I wore hospital issued scrubs, so I really didn't have a choice in looking like I was raised in a barn.

I have always been the type of person to make sure I look pulled together before I leave the house. In high school, I rarely left the house without makeup, whether it was as simple as some mascara and a colored lip balm and I wouldn't be caught dead leaving the house without straightening my hair. Throughout college, I adopted a more relaxed style (translation: basic white girl style, college edition) but even then, I didn't leave the house without some type of makeup and my hair done. I'm a proud sorority girl and I was constantly reminded that I was always wearing my letters. My momma, may she rest in peace, instilled in me the importance of looking your best, no matter where you may be going. She came out of brain surgery and asked for her lipstick, hairbrush, and a mirror. 

Since my diagnosis, I've found myself wearing variations of yoga pants and leggings, with some dresses and maxi skirts sprinkled in. I sometimes feel like I've let myself go. I've made many adjustments to my routine and my style. Chronic fatigue and chronic pain can take their toll and I frequently find it a monumental task to shower, never mind giving myself a daily blow out and a full face of makeup. I've cut my hair and kept it short longer than I have in my life because of the pain. I've pared down my makeup routine because of the fatigue. And my wardrobe has switched from a handful of business casual, jeans, and blouses to leggings, yoga pants, tank tops, and cardigans.

My days look a lot different since my diagnosis, but I still try to retain as much of my "old self" as I can. When I'm feeling well, this means a fresh blow out, liquid eyeliner with a full face of makeup, and a dress or skirt. But when I'm having a bad pain day or a flare, this means yoga pants and an oversized sweater with a messy bun, some foundation and a touch of mascara. I might be sick, but I will never wear the same clothes out that I slept in and I will at the bare minimum run a brush through my hair and put on some mascara on. I tend to bristle at anyone who admonishes people for wearing leggings or yoga pants to places other than yoga or the gym. I wear leggings and yoga pants because they're comfortable and in the case of my compression leggings, actually help to alleviate some of my symptoms. I'm not condoning leaving the house looking sloppy. Put on some clean clothes that you didn't sleep in and run a brush through your hair. Even if you only leave the house to drop the kids off at school and pick them up that day, you'll be teaching them a valuable lesson in respect and you'll feel better, too! One of my goals for this month is to update my wardrobe to be a little more fashionable in an attempt to regain some of myself while still holding on to my comfy clothes.

Just because I'm chronically ill and in constant pain, doesn't mean I have to look it!

I detest the describing myself as “unemployed.” I was filling out some paperwork recently and was asked to select from four options-employed full time, employed part time, on disability, or unemployed. While my illnesses and chronic pain prevent me from working, I am not yet receiving disability. So I selected unemployed, adding the caveat that I am disabled. 

So, why is this such a sore spot for me? 

Because being sick is a full time job. My job every day is to listen to my body, to take care of it, and to do all I can to mitigate my symptoms. My job is also to keep track of numerous appointments, filing deadlines, and new referrals. I spend hours upon hours a week researching treatments, reading about others’ experiences with my conditions, and documenting my symptoms so the doctors can have an accurate picture of my health. 

There is no PTO, there is no vacation. This is an all-day, every day thing. It’s literally life or death. (Okay, that may be a bit dramatic!) 

In the last year, my illnesses have forced me to become a secretary, an insurance expert, a lawyer, a historian, a geneticist, a researcher, and most importantly, an advocate. If I don’t advocate for myself, no one else will. I have fought long and hard to get to this point. 

I am not unemployed. I am an advocate for my health. I am fighting for my life. And being sick is my full time job. 

Recently, I was involved in a debate online about pain medication and the opioid epidemic. The OP wanted opinions on how we can still adequately manage chronic pain patients amidst this devastating epidemic. I chimed in and was met with so many supportive responses and a resounding “me too” from so many who have had similar experiences to my own. It was encouraging to see so so many who not only have shared my experiences, but to hear some feasible suggestions from so many. But of course, there is one who has to be ugly. 

It started as a genuine attempt to try to illustrate the same experience from the other side of the curtain and, like most things on the internet, rapidly devolved from there. As with any discussion about pain (and invisible illness in general), comments attributing most pain to excess weight and lack of physical activity were made. As an invisible illness warrior and chronic pain sufferer, I felt the need to reply to this to illustrate my own experiences with chronic pain following a car accident in my early 20s. I stated that I weighed about 110lbs and my back pain had nothing to do with my weight, rather with the fact that my vehicle was at a dead stop and hit by an SUV traveling at about 45MPH when it struck me. I also mentioned that I was an athlete my entire life, up until recently. Given the context of the comments, I wanted to illustrate a different story than the one that is evidently so common and the reason so many providers are almost indifferent to chronic pain and the very real people who have it. I was saddened to read the response…basically, I’m some weird exception and this isn’t the case with the overwhelming majority. But more concerning to me was when chronic pain patients were told to keep their victim mentalities since they didn’t want to try to see things from the other side.

This one was unacceptable, to tell me I’m being defensive when I stand up for myself and other chronic pain warriors is one thing. You’re damn skippy I’m defensive. I have lost so much to chronic pain and chronic illness that I will never, ever have the career or life I set out to have. I have had to alter my dreams and plans to fit my chronic pain and my EDS. (That’s a story for another time) But this attitude is exactly what is wrong with healthcare today. This attitude is why so many of us “spoonies” often succumb to depression and develop anxiety. I am taking a stand…I will yell it from the mountaintops, I will tell whoever will listen to little old me…I AM NOT A VICTIM! 

I am not a victim. I AM A SURVIVOR. I AM A WARRIOR. I AM A FIGHTER. And I will continue to fight for myself and others who are doing the best they can to live with this thing called chronic pain. 

I may have EDS, but I AM NOT A VICTIM. And no one, especially someone who is supposed to “do no harm” should EVER use these words to describe someone with chronic pain. Just because you can’t see my disability, IT DOES NOT MEAN IT’S NOT THERE!!!