Counting Spoons And Stars

My life hasn’t been normal for a twenty-something living in the suburbs of Washington, DC. Just 18 months after I could legally drink, I found myself stripped of all the independence I had spent time gathering while traveling across Europe for a summer program, working and taking care of myself at college, and moving to New York City even though I didn’t know anyone there. Instead of gathering more life experiences that would shape me into who I was becoming after school, I was thrown into learning the importance of appreciating even little moments in difficult days, and I was facing health issues that most people twice my age hadn’t even begun to deal with yet.


I know I’ve talked about The Spoon Theory some on here, but I saw an interesting graphic on the Dysautonomia International Facebook page, so I wanted to write a little blog post to go along with it.

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I would switch around a few of these. For example, I think taking a shower and shaving or washing my hair takes more than 2 spoons, but going shopping only takes 3, depending on the task (as long as I don’t have to push a cart or carry a lot). I have always been a really big fan of a nice, hot shower, but I honestly don’t even remember my pre-POTS showers. I don’t remember what it’s like turning the dial to the “H” without knowing that my heart is about to start racing like I’m running a marathon, and allotting some time to lie down after I’m done shampooing. I do remember the days I couldn’t wash my own hair, though. I remember first getting sick and not being able to stand in the shower because I would pass out. I remember sitting down in the bathtub in my pink paisley bikini so my mom could shampoo and condition my hair for me since the room was always spinning around me and I couldn’t stand by myself for more than a few minutes. In hindsight, the way my hair was washed is really similar to the way my dog, Macy, gets her hair washed now. We both just sat there and let someone else do a task we  are less than thrilled about, but need to have done. I was 22 years old, had just graduated from college, and could not take care of even my most basic needs.

Despite making slow improvements with POTS, I still always look fine, so people usually cannot tell if I’m having a “good day” or “bad day” just by looking at me. Nobody else can see the way my vision blacks out whenever I stand up too quickly, or when my pain is acting up. Whenever I see someone pop right out of bed when they wake up on television I laugh to myself and think, “That’s so unrealistic!” then I quickly realize that it’s actually most people’s reality. Most people can jump right up from laying down to a standing position and not feel repercussions from their body. I don’t remember ever being able to do that, but logically I know that five years ago I would have been able to. Actually, come to think of it, it probably would have really freaked me out if I couldn’t pop right out of bed all of a sudden!

There are many things that I don’t remember from my pre-POTS life. I don’t remember what it’s like living with a “0” on the pain scale, I don’t remember being able to be low maintenance when traveling or going out with friends, and I don’t remember what it’s like feeling like you’re in the same boat with all your peers. College is so great because even though you are all doing such different things, you are all working toward some sort of career goal. I get sick of explaining what POTS is over and over again, and I hate the look of pity in someone’s eyes after I get done telling them about how even though I am still young, I ended up with a life-changing health condition at the very beginning of my twenties.

There are a lot of things I do remember so well from my old life, though. I remember going outside and finding out it was a beautiful day, so going for a long run. I remember deciding on a whim to train for a half marathon, and bumping up my mileage with ease. My brain remembers going to work and sitting at a computer all day long and all of the projects that I did, but I don’t really remember how it felt. I think about it now and wonder how I was able to do all of that without feeling stiff as a board and paying for it for the rest of the week. I have no idea how I ever survived without a foam roller or physical therapy. Did my body really once not hurt? Why didn’t I take advantage of that more?

I have been blessed, though. The crazy thing about POTS is there isn’t a lot of treatment that helps you get better, other than hard work in the gym (Which is done on the recumbent bike and with tiny hand weights), a good diet, and a great deal of luck. Getting sick has made me learn that there is no doubt in my mind that God does exist, and He has so much power and love to give. I still can’t believe how much more clearly I can think without all of the dizziness and brain fog, and I feel blessed to have good days mixed in with the bad. I actually think that most of the time I am probably on the higher end of the “happy scale” than a lot of twenty-somethings because I have learned to find the joy in the little things in life. I feel happy when I get to meet a new dog, I love being able to go outside for long and leisurely walks, and I really feel at peace every night when I look up at the stars. It’s really amazing to realize that even with so many planets and heavenly bodies so far away, my Creator still loves and cares about me. I always feel small when I think about how far away the stars are and how many other people there are in the world, but it really is amazing that God has a plan for each and every one of our intricately detailed lives.

I still don’t know why I got POTS or what my life is going to look like with it moving forward, but I am going to continue to share my journey and what I’ve learned with people, and I am going to keep working toward a more normal life. I’ve used a few spoons writing this and am getting dizzy because I really need a salty lunch, but I will be writing about The Spoon Theory again on my blog in the next week or so. I want you all to know what I use my spoons on, and how stealing a spoon from another day can be great because I am able to enjoy outings with friends, but it makes playing catch-up difficult the very next day. I, as well as all my other spoonie friends, just want to feel like everyone in life just gets it. That won’t happen unless we begin speaking out about our chronic illnesses, though, so I am going to continue being vocal about what life looks like on the inside for someone with a chronic illness.

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Please take a minute to read this article by Christine Miserando about how she created The Spoon Theory. It is explained so darn well here, and I — along with every other person with a chronic illness — would give anything for people in my life to actually understand what it means to use spoons throughout the day.

Full

First, I would like to start this blog post by saying “Hoppy Easter.” Macy is sitting in my lap right now and wanted me to include a cute animal pun.

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The change in weather in the DC area has been crazy lately. This is a huge annoyance because it’s made me more symptomatic. Fall has become my favorite season since the temperatures are typically pretty mild, and there doesn’t seem to be as much rain as there is in the springtime.

This summer will be my 5 year anniversary with POTS. Did you know that a 50 year anniversary is called a “golden anniversary?” I guess you’re typically supposed to get your significant other something made out of gold. My brain is a funny thing and works really quickly jumping from one subject to the next, so I somehow got to thinking about that and wondering if a 5 year anniversary had a name. After a quick meeting with Google, I found that silverware is the token gift for 5 years. I couldn’t help but grin since I often feel like I don’t have enough spoons throughout the week. This is a kind of cruel irony.

One of the hardest things about having a chronic illness is just the simple fact that life is more drastically unpredictable than the average human’s. You often hear someone with a chronic condition say that they are having a “good day” or a “bad day,” but either way it will pass and there will be another kind lined up and ready to take its place. POTS has taught me to really enjoy moments, especially when I get to do something out of the ordinary that might cause a lot of joy — and bring with it a lot of pain the next day.

I write about pain a lot more than I ever talk about it because I do want to enjoy my life and have the little moments that make life so beautiful. Regardless of feeling crappy right now, I want to remember that four years ago my life was being lived horizontally. I do feel really blessed that I can walk, sit upright, and enjoy so many amazing things that I do take for granted. A few years ago I couldn’t stand more than a minute at a time without fainting, and the only time I really left home was to go to the doctors office or to the gym for my daily recumbent bike routine.  The thing I find most interesting about this is that I have really fond memories even from way back then. The amazing part of being an optimist and looking at the glass half full is that I do remember how shitty I felt, but it isn’t at the forefront of my mind when I think about being 23 years old. I think about watching Top Chef with my mom and dreaming about being able to cook again one day. I remember making “Dunkaroos” with Goldfish and salt because I couldn’t figure out another way to eat enough, and I remember close friends coming over and sitting on the couch with me and telling me stories about what their life is like post college. I remember sitting with my passenger seat reclined as my dad drove me two miles down the road to do my gym workout, and the stories we would tell each other back and forth. I remember him telling me I would get better one day, and my mom playing “Would You Rather” with me when I couldn’t sleep at night. I still have the memory of lying down in the middle of the movie theater floor so I wouldn’t pass out while waiting in line for popcorn with friends, but I don’t remember the extreme nausea and dizziness from that episode anymore. Now it’s a kind of funny memory, and I wonder how there was a time I didn’t feel embarrassed to be the center of attention for something so out of the ordinary. In fact, I feel lucky that I get embarrassed about POTS things now. This means I am healing and major health complications are not a regular part of my day.

Tonight I am stiff, sore, and ready for sleep. My shoulders hurt from a long week and I am ready for the pain to subside so I can get a good night’s sleep. Instead of remembering this feeling a year from now, though, I know that I am going to remember what it was like going out on a fun double date and reminiscing through old college memories, rather than how badly my shoulders hurt or how tired I am of “working to get better.” I know that one day I will be a lot more normal because I am still making improvements, even if they sometimes feel small.

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I don’t know whether looking at the glass half full is something you’re born with, or an outlook you develop, but I am so thankful that I have that ability in my life. I know sometimes it can be easy to feel frustrated or wonder why you got the short end of the stick in one way or another, but the way I see it is if a glass is half empty, it is because you enjoyed something from it, so there is something to be joyful for. Glasses are things that are meant to be filled and emptied, kind of in the same way that life sometimes has its ups and downs. We may not have the ability to control everything that happens in our lives, but we can learn to control our outlook, which is actually one of the most incredible and worthwhile things a person can do. Life isn’t always easy or fun, but there is always something to be joyful for — you just have to learn how to look for it.