People can be so supportive of these diseases with comments on Facebook posts and texts checking in on us. But another friend of mine recently asked what it was really like to feel these diseases. It is hard to imagine the pain if you haven’t dealt with it regularly. So I have written a post that explains a day in the life with my POTS, fatty liver disease, Sjogren’s Syndrome, early onset Rheumatoid Arthritis, and two autoimmune liver diseases.
My boyfriend is an Air Force officer and wakes up for work around 5:30 am. I try to roll back asleep because my body needs as much sleep as it can get, despite my insomnia. Before he leaves, he brings me my eye drops. Sjogren’s characteristic dryness only allows me to barely open my eyes in the morning. My eyelids are literally dried onto the eye balls, and I can only open my eyes if I provide artificial lubrication. The light from the window gives me shooting pains behind my eyes and the morning headache rages. I lie in bed for about half an hour, waiting until I can manage the pain of standing. As I hang my feet over the bed preparing to stand, almost instantly all the blood pools in my feet. The room starts spinning and I have a hard time catching my breath. I slide off the bed and feel the tenderness in my feet flare into pain. I glide into the incredible slippers my boyfriend bought for me to alleviate some of the feet pressure and make my way to the kitchen.
Once in the kitchen, I have to sit down as soon as possible. POTS strikes its hardest in the morning because I have been lying down horizontally for hours. The P in POTS represents “postural,” so any changes in my posture or body position sets off lightheadedness, dizziness, vertigo, a sharp heart rate increase, and ringing in the ears (described medically as pre-syncope, meaning “before fainting” or feeling faint). Upon sitting, my heart rate almost instantly calms, but maintains an unhealthily high rate because I’m still in an upright position with the blood pooling at my feet instead of being pumped to my brain. This lack of blood and therefore oxygen to the brain causes all the lightheadedness and dizziness, as well as brain fog. Brain fog is characterized exactly how it sounds, by feeling like you’re in a mental haze. All day I forget common words in the English language and I have to describe a word to my boyfriend for him to identify it for me, such as “couch” or “sandwich.”
Once I feel my consciousness less at risk, I stand to retrieve a sugar-free popsicle from the freezer. Sjogren’s causes a lack of moisture and mucus, so my throat feels the sharp inflammation exactly like that of strep throat every single morning I wake up. The severity is so strong that I can’t usually talk until I have numbed my throat with a frozen popsicle or numbing spray. In my early symptom days before the severity, some sips of water by my bedside in the morning would do the trick. I often have to use Neosporin or cream in my nose as well, as the dryness causes cracks and bleeding in my nostrils. Once in the morning and once at night, I coat Neosporin on to the corners of my mouth to ease the paper-cut splitting of the skin (angular cheilitis). The lack of saliva in my mouth carries over to dry lips and skin, and causes the tender skin in the corners of the mouth to split open, bleeding and shooting sharp pains like paper cuts whenever I separate my lips.After the popsicle, I proceed to sit on the couch. I begin researching my diseases as usual, scouring the internet for new medical studies or potential home remedies to ease symptoms. I make notes of new foods that doctors are finding to cause inflammation, and cross them off my already limited possible foods list. It isn’t worth the risk to eat a meal with that food and be throwing up all afternoon.
I start to feel intense stomach pains, which could be hunger or spasm-like feelings in my liver area. There is often an intense ache in the shape of a triangle in my upper right abdomen, housing the liver. This pain is initially what helped me get diagnosed with my 3 liver diseases. I decide to take the risk and assume it’s hunger pains. If I eat without being hungry, my appetite is completely lost and the thought of eating a spoonful of cereal is the same as forcing down another bite at the end of a meal at Olive Garden. I am so stuffed and full that I couldn’t possibly imagine eating another bite, even if I haven’t had anything to eat yet that day.
My first meal of the day consists of blueberries. I have never been a blueberry fan, but if I refuse to eat foods I don’t like, then I will never be eating with this new required diet! After my bowl of blueberries, I am so full and lightheaded that I must lie down to settle my stomach. At this time, my elbow joint starts to flare with pain. At first it is subtle, like an ache. Then it becomes excruciating, and I can’t straighten my elbow without wincing. Sometimes I cry from the pain, but sometimes I don’t even notice if I am or not because the pain is so overwhelming. So I contemplate my options. Is the pain worth the Tylenol that is off limits for my liver diseases? “My liver disease can kill me, elbow pain cannot,” is what I always remind myself. No Tylenol today.
Then the nausea hits. I had opened the refrigerator and suddenly caught wind of the smell of last night’s chicken (my senses have heightened immensely), and I rush to the master bathroom toilet in case I vomit. I have spent so many days and nights there that I prepare the bathroom floor with a usual set up. A blanket, my computer to watch a TV show to calm any stress or cause a distraction for the overwhelming nausea, and a water bottle to continue hydrating all day. I feel faint sitting on the floor, and I start to see spots. I can feel my heart rate climb, although I am literally just sitting on the floor. Sounds begin to slowly deafen and my breathing becomes slow and labored. I instinctively lie on the floor and place my legs against the wall, draining the blood from my feet and forcing it against gravity to my brain. Soon, I recover clearer consciousness.
I hear the front door open, and my boyfriend returns. It is lunch time. He comes into the bathroom to see me wrapped up in a blanket, asleep on the tile floor. This is a normal sight for him, so he usually comes to sit down next to me and brings me a second water bottle. He asks me how I’m feeling, and I say “the usual, but better today than yesterday!” He’ll help me up and lead me out to the kitchen where he’ll make himself lunch and we’ll chat about his day. Once he leaves to head back to work, I’ll search for lunch that I have the energy to make. Most days, I’ll risk passing out or throwing up from exerting energy while trying to simply make lunch, so I’ll have to skip the meal (all while wishing I could channel my inner Sabrina the Teenage Witch and make a salad appear before me).
All of this has happened, and it is only 11 am. I dream to work a full-time job, but how can I pursue that if I can’t make myself lunch? I dream to have a dog one day, but how can I do that if I spend the day lying in the bathroom? Then sometimes we meet up with friends or family, and the disease discussion comes up, and I’m told that I don’t look sick. That everything would be better if I tried their suggestions that I must have just never thought of. It takes all of my energy to hold back from what I want to say.
“This is my life. This isn’t a personality trait of laziness, or dependency. I wake up every day having to literally peel my eyelids off my eyeballs (which sounds gross but ignore that because I’m trying to make an epic point). I apply Neosporin like most people use lotion. My eyes are perpetually puffy from crying through worsening arthritis pain. This is my life. A day doesn’t go by that I wouldn’t trade this all for a steady job and the possibility to have children. The irony of calling these ‘invisible diseases’ is so untrue because they’re not invisible. They are the driving forces of all of the dissatisfaction, disappointment, and despair of our lives. I wouldn’t make these symptoms up for the world, and I sure wouldn’t do something that would make them worse. I actively search for solutions and answers to better my quality of life and potential capabilities. I actively try to provide support and love to others who are lacking it. I actively have to search long and hard for happiness and patience in the face of what I fight against, despite never being able to win because my body is shutting down on me. Beautiful, wonderful, joyous things also happen that make me feel so blessed, but I will still always wake up with pain, fight that pain all day, lie awake at night with that pain, and repeat it all the next day and the next and the next. This is my life, and sometimes that makes me sad and wondering why it has turned out this way. But it’s my life, and I do whatever I can to make it worth while and better. Even if that means sitting on the bathroom floor with my boyfriend and cracking jokes or making my bananas and kiwi look like a palm tree on my plate so they seem more appetizing, I work hard at my health and I work hard at my happiness. And I am damn proud of that.”