I’ve been diagnosed with EoE for roughly a year now, and it’s only now that I’m coming to terms with understanding my place within the medically ill community. There’s so many things about my diagnosis that people don’t understand, and that I myself am still finding out as well. So much that I never really thought about myself as chronically ill.
I honestly spent so much time researching trying to figure out what the hell I had before I was diagnosed, and all I could find was dysphagia (or Cystic Fibrosis as mentioned in my other post) which is a blanket term for swallowing issues that I really couldn’t think of myself as having EoE or even what the community who had it was like. Mine is very mild now that it’s controlled on a heart burn medication but I never really researched outside of my own bubble. Which knowing me is slightly strange because I like to know everything. I like to know all of my disease what it entails and how it affects me and what I should be on the look out for. So why on earth am I just discovering now that children who have EoE often end up on feeding tubes? It’s just strange to me and I can’t wrap my head around why I didn’t do so much research. The only thing that comes to my mind is that I didn’t want to be chronically ill.
That’s a very frankly insulting idea to have but an issue I suppose is that I didn’t even realize those were my thoughts. I wasn’t scared about being a label, I was just trying to survive the next 24 hours with food in my stomach. Because my symptoms were so certain to me, it made me neglect I guess looking at other people with it.
EoE is as I’ve mentioned before a rare disease, the first journals about it appeared as recently as 2006 and frankly there’s just way too much we don’t know. There’s also so many other diseases that factor into it, like I just discovered that there’s Chronic Eosinophilic Pneumonia or Carryington’s Disease. Pneumonia! Which is one of the things that I am a chronic sufferer of. Maybe my doctor didn’t know about that specific type or maybe she wanted to wait and see about that if the medication didn’t work. But there’s that word again, chronic.
Now will I ever make a post not referencing Ellen Pompeo? Honestly hopefully not, I love her far too much. But here’s where chronic illness plays into that. Don’t lie and say you haven’t scrolled through who a celebrity follows on Instagram, we all stalk. Fans discovered that Ellen followed a chronic illness lifestyle page, where a woman posts quotes and photos and the captions are always related to empowering those with chronic illness, or anyone who can use support of any kind, she’s very welcoming to helping others and even does posts where she lets you just rant and let your anger out. You all can discover Brown Eyes Thick Thighs for yourself and see what she’s all about. But for the longest time I somehow didn’t realize that I could relate to her posts about her illness and even though I have different diseases, that I could be chronically ill too.
I’ve come in contact with several people who are Spoonies, which refers to spoon theory which has to do with invisible illness and chronic illness. A spoon is a measurement for how much they can handle within a day. I struggle to find myself exactly fitting in as a spoonie because on the surface my chronic illnesses are not to the same extreme level that others are. I’m rather high functioning person, although my say need for exercise is probably the biggest change. I always walked very fast when I was younger and I would also be out of breath a lot. People sort of assumed one was due to the other but it was most likely my asthma. I can no longer go on runs or hikes without preparing myself before hand. I always have to make sure to have my inhaler on me. Food is a bit of a trickier issue because I made the choice in light of all of my issues to become vegetarian.
I had a friend who was vegetarian before and the lifestyle seemed very pressured to me and I felt myself rebelling. I never liked meat to begin with, and one of the reasons is the texture made me struggle to swallow it. I remember days of just sitting at the dinner table, struggling to swallow porkchops and it just got mushy and stuck to the back of my throat and I hated it. I stopped eating just about everything but burgers and lean meats before going completely vegetarian.
but back to spoon theory, I kind of made this post to say that I do have chronic fatigue. I started writing this post at 12am when I couldn’t sleep. I don’t fall asleep until 1-2 am most nights and I can’t sleep in past 8am. On school days that means I’m getting up at 7 to be ready in time for my 9am classes. It’s not normal. I find myself out of breath because I walk fast and I have to teach myself that I can’t do that anymore when my lungs are irritable. I can’t eat food late at night anymore because of my medication. That’s about 8 or 9pm when as a college student I’ll be frantically doing assignments until 9pm and forget to make dinner.
I’m constantly tired all the time and I know when I dissociate or tune out of situations because I’m too tired to function. I can’t make it through two back to back classes from 9am to 3:20pm. I mean I do it but I come home and I can’t do any homework we were assigned because I’m too busy trying, unsuccessfully, to nap or making myself food.
So let’s get on the topic of food.
Throughout my life I grew up very slim, and never hit higher than 102lbs. For most of highschool I was from 96-98lb range and I hated it. I hate it so much. I don’t feel comfortable wearing crop tops where you see my ribcage, or bikinis were you can see it either. It’s only recently that I’ve come to terms with all of that. The comments, the questions “are you sure you’re full” as if no one understands that a tiny human has a tiny stomach. The accusing looks that ask if you’re anorexic, and the repeated frustrated replies of no and forcing myself to eat more than I want to. All to prove a point.
So when I had to go on a liquid diet and I couldn’t swallow so much as a ramen noodle, I lost weight. I dropped from 96 to 88 fairly quickly and then over the months I ended up as low as 86. I’m currently in that range and while it is ‘normal’ for me, it’s not ‘underweight’ in terms of worrying doctors because I drink nutritional drinks etc. But it means that I’m constantly hungry. I will eat a full meal, or what makes me full and be hungry within an hour. My metabolism won’t stop. It’s why I’m tired all the time because I’m constantly trying to eat. and I am tired of it. I’m tired of having to eat so much all the time, or trying to bulk myself up. Nothing will ever do the trick. Just a few days ago I had hummus on white bread toast. I had 3 ‘toast’ sandwiches with hummus. 3 in a row. Hungry. All the time. That still didn’t do much so I ended up having shrimp gyoza from Trader Joe’s that I made in my frying pan. That made me last until dinner time maybe.
And all of this is circumstantial on if my EOE or my seasonal allergies aren’t so bad, and if they’re acting up I’ll stick to applesauce, soups, pasta with pesto instead of tomato sauce-
I can have some acidic foods as long as I take the meds but sometimes I like to lean away from them if I’m having a bad day. This is all just depending on the day though. My other post I mentioned that there was a situation at my school that triggered a lot of stress and anxiety in terms of my living situation. Because of that I was having stomach pain and loosing weight as well. That pain and struggle has left me but it doesn’t stop me from worrying about it especially in terms of getting up early or rushing myself through getting ready.
And all of this worrying about eating and food obviously takes a toll on my mind. I’ve found it harder than ever to concentrate, even on things I love like Tv shows. I can’t focus. I’m finishing this post after having the worst sleep I’ve had maybe ever. I don’t know why this is happening. I’ve had the feeling before, where I try to sleep and I get startled because I feel like I’m falling. This time I woke up after sleeping for maybe 5-6 hours and I felt startled but not from falling. I fell asleep for about an hour and I didn’t wake up feeling refreshed at all. I haven’t had a decent sleep in what seems like forever at this point. and I want it.
Throughout all of this it’s just all so frustrating. Like I mentioned I’m a high functioning person and what that means to me is that I’m very put forward in what I do. Being lazy never used to be a part of me, and I don’t consider myself lazy when I have to consider my illnesses and ‘relax’. Relaxing for me is very important because I can’t just have a lazy day in bed exactly. I have to make so many snacks and do all of these things to prepare. Most times I don’t even get around to watching the Tv I want to because I just space out or I try to sleep. I spent my days in highschool doing everything and above what I needed to do, I was an overachiever and it is hard to not see myself as that anymore. My work is still to the best of my ability but I find myself wanting to be sloppy because I can’t handle it. But that’s in terms of things like writing assignments compared to things like media related projects. I used to be this force of nature but now I find myself struggling.
Another example of me being fatigued is social outings. We went to a museum as a class the other day, we walked there. Which is fine its like ten minutes from our building, but it was rainy with 30mph winds. 30 mph winds plus an asthmatic? Not good. I made it there, and I never felt like I couldn’t breathe its more like my body has to do extra to make up for the stress of breathing in the wind. I had a lovely time, and I walked home and I immediately took a three hour nap. That’s not normal. I grew up never being able to nap. Naps were not a thing until I got to college. Even when I pushed myself the hardest I could in highschool I very rarely came home and napped. There’s this culture online where everyone claims they go home and nap but honestly, really? It’s just not a thing I was used to. I get exhausted so frequently from minor things. Going on a small day trip down the street shouldn’t make me feel like I just ran a marathon.
My EOE comes with seasonal allergies as well so I constantly have stuffy sinuses, post nasal drip and other allergy symptoms that only have relief every few days. I take medication for them but it is only helpful to such a certain extent. As spring comes so do these headcolds, feelings of being foggy and forgetful, and waking up to suddenly not being able to breathe until taking nasal sprays.
And now it’s been a year since this all started and I just want to raise my voice about my story because I feel like I taught myself that what I felt wasn’t a part of it, or that I wasn’t valid enough to be considered something that just lets people know I’m a sensitive person in all terms of existence. I want my rare disease to be heard, I want my feelings to be seen. I think that a lot of EOE isn’t diagnosed until it’s too severe, or it’s not understood as well. It needs awareness and real support for research. I may never be able have a full cure for every one of my ailments but I like to know I’m not alone. And right now for EOE, I feel incredibly alone. Especially because I’m not like the severe cases on feeding tubes and elimination diets. Being vegetarian isn’t that hard compared to what some of these ten year olds must do to eat.
So maybe I am chronically ill, and that’s ok.
“Your story is not more difficult than mine, my story is not more difficult than yours and I think if we all keep can open mind and compassion for each other-life is hard, no matter the circumstances, whether they be blue or red or green or yellow. We all have a story.”- Ellen Pompeo
Here are some sites for more information on EOE