Behind the Scenes

You might see a picture I’ve posted of myself with a friend or eating a cookie or doing something out in the world, but here’s what you don’t see. You don’t see the handfuls of pills I crush 3x a day and mix with a spoonful of applesauce since I can no longer take even a sip of water. You don’t see the patch on my shoulder administering even doses of pain medication every hour. You don’t see how many events I have to turn down because I can’t get out of bed or even sit up. You don’t see the grimace on my face or the swollen abdomen I get from just two bites of the cookie I may have posted a picture of. You don’t see the debate I have with myself over whether or not I can get away with skipping yet another day of showering because it requires too much energy. You don’t see the nurses who come to my home to draw my blood and assess my condition. You don’t see the number of missed calls on my phone from all the times I was too exhausted to have a conversation, even with someone I love. You don’t see the amount of time I spend calling the pharmacy, the supply company, or the countless doctor’s offices. You don’t see the effort I put into getting ready and putting make up on if I’m going to see anyone or go anywhere. You don’t see the routine I have to set up my TPN and IV fluids every morning or the level of care required to keep my central line taken care of. You don’t see the plastic bandages I have to wrap that central line with before every shower I take. You don’t see the nights I lay awake until 4am because I’m in pain and unable to rest. You don’t see the waiting rooms I fall asleep in or the ERs I’m rushed to. You don’t see the basin in my toilet measuring my urine so I can be sure I’m peeing out the same amount of fluid that I’m putting into my IV to make sure my kidneys are still working. You don’t see all the times I tear up when I see someone eating a big meal that I can now only dream about. You don’t see the bucket full of used batteries that have kept my IV pumps running for 6 months, or the overflowing sharps container contributing to the vast amounts of medical waste my care generates. You don’t see how badly I’d love to go on a date, but don’t because I can’t afford to get involved in a relationship in my current state. You don’t see all the memories I can no longer access or how hard it is for me to articulate an explanation of something, or even try to remember the word for an every day object.

You don’t see these things because I choose not to broadcast them daily. Chronic illness is so much more than what you see. My illnesses are invisible, but my fight is not. What you see is me holding it all together. And I do hold it together. But there are more obstacles in my course than you can see from my social media pages or by spending 30 minutes with me in a doctor appointment. This path that I’m on is unbelievably challenging; but I wake up each day and make the decisions I need to for my well being. I wake up each day and survive.

Sometimes that means going out to the movies or a show. Sometimes that means staying in bed all day, unshowered and in pjs (actually that’s become the most likely scenario). Sometimes that means eating something I’ve craved for days; even if I feel sick enough to regret it a few bites in. Sometimes that means putting on make up and looking #flawless, so I don’t always have to feel like the sick girl. Sometimes that means deciding if I’ll need a cane or a wheelchair that day. Sometimes that means taking enough pain medication to be able to enjoy the monthly visit from my best friend. And sometimes it means eating my noodles in bed so I don’t have to watch my parents eat a full and fabulous meal. Sometimes it means getting a 90 minute massage so I can walk better and sleep more comfortably.

These things are my reality. I make a point not to share these things all the time in order to spare my friends and family from knowing the harsh truths. I don’t want pity and I also don’t want to make anyone feel uncomfortable. But people deserve to know and should know that there is much more to my days than just ‘Netflix & chill.’ Despite all of the scenarios I mentioned, I am not depressed. I am okay. I have taught myself how to cope with this illness. I have already overcome several big challenges in my lifetime (adoption, abdominal surgery in high school, near death experience in college) that helped me to cultivate the skills necessary to face my current struggle.   Many of my coping techniques and universal thoughts are discussed in previous blog entries. A big proponent of my maintained happiness is from daily gratitude exercises. When I wake up each morning, I immediately list 5 things I am grateful for, in my head. It’s actually quite surprising and amazing that even when everything seems to be going wrong in life, there are still such an abundance of things left to be grateful for.

I took you behind the scenes in my life (a brief tour). But it’s important to remember that each of us has a ‘behind the scenes.’ We each have burdens and struggles that we deal with daily. Not all of them are broadcasted. And that’s okay. But we need to love and support each other. We have no idea how hard our coworker’s night was or what our cashier’s morning was like. Life is not a competition. We are all in this together. Let’s offer as many smiles, hugs, compliments, and positive encouragement as we can. Have a happy day, fellow beautiful humans. I know it’s hard sometimes, but you are not alone.

xox