I didn't expect that going to the hospital was going to make everything better, but I hoped it would at least make a difference. I knew things would probably get worse before they got better; most people experience some pretty awful symptoms during refeeding. But things just got worse and worse and worse.
By the time the semester that I had fought so hard to finish was over, I wasn't even going to my classes. I did my best, but I would generally miss at least one or two classes a week because I was so miserable. As my dad says, I am the kind of person who would literally have to have my head cut off to miss class, so this was definitely not normal. I took an incomplete in the theatre costume history class I'm required to take for my major because the final required walking around the costume shop for an hour, and I didn't think I could stand that long. I was supposed to be the RA on-call one night and missed checking in by nearly an hour because I was so exhausted I didn't hear my alarm go off or my phone ring the five times my supervisor tried to call me. I was so miserable and tired all the time, no matter what. When I say everything hurt, I literally mean everything. I felt like I had bruises all over my skin, even the lightest touch was painful. I didn't actually have bruises, at least that I could see, but I did have an incredibly itchy rash all over my skin, which certainly didn't help my insomnia. My joint pain had become so bad that it became difficult to even walk to class or hold a pencil. The magical medication from the hospital wasn't making much of a difference with my stomach pain. Menial tasks like doing laundry or taking a shower used up all of my energy; I had to take breaks between every little thing, and sleeping seemed to make me feel worse. I woke up most mornings feeling like I had been hit by a truck, and I often spent hours laying awake unable to sleep. No amount of melatonin or Benadryl seemed to help me fall asleep, though something I was taking caused me to have insane dreams that often involved (trigger warning) people in my family either dying or trying to murder me (in case you were curious, Aspen was usually the one trying to murder me).
I had been looking forward to our Christmas Disney vacation for a year and a half. It was Aspen's and my eighteenth birthday present from our parents, and we were supposed to go the year before, but we decided to postpone it so that Aspen wouldn't be too sick to enjoy it since she had just gotten out of the hospital. I was still really excited, and it was an amazing vacation, but it was also really hard. I spent hours every day on the cruise alone in our stateroom sleeping because everything wore me out. I absolutely hated wasting all of that time on our trip, but I otherwise didn't have the energy to make it through the day. One of the best things about Disney cruises is all the free food, but I often had to pass on getting soft serve from the ice cream stand or trying new foods at dinner because my stomach was too upset. Anyone who has ever talked to me for more than, like, five minutes probably knows how much I LOVE Disney. Did I mention my parents met at Disney World? Never in a million years would I have thought that I would choose sleeping over spending time in the parks, but after our first day there, I woke up feeling so miserable that I didn't even want to go. I ended up staying in the hotel while my family went for the morning, and my mom came back to get me a few hours later when I felt more alive. I tried really hard to be able to walk around; my parents kept suggesting that we get a wheelchair, but I didn't feel like I had any reason to need one. I still wasn't any closer to having a diagnosis, and part of me still worried that all of this fatigue and pain wasn't real. We ended up renting one after the first day because I just couldn't handle walking around. It was exhausting, and every step felt like my bones were rubbing together and eroding each other. The wheelchair actually came in handy, though. I would sometimes just fall asleep in really long lines if I was feeling especially bad. Of course, I would rather feel good at Disney World than be in a wheelchair, but you do get a good spot for watching the parades, and some of the queues weren't wheelchair-accessible, so instead of waiting in line, we would get a time to come back and we could go do something else while we waited.
The rest of winter break wasn't much different than the Disney trip: waking up way later than normal on Christmas morning, taking a trip to the ER on New Year's Day, and struggling to decide whether or not to go back to school (if you haven't figured it out yet, I am extremely indecisive). I didn't want to go back and still feel this way, but I couldn't stand the thought of sitting at home doing nothing. I also never actually wanted to go back to school the last three semesters, and this semester I was really excited to go back. I knew if I took the semester off, it would be really hard to go back next fall, and I didn't want to get off track from the meticulous plan I had already devised for the next few years of my life. I also thought it might be easier to get medical treatment at school since USC is connected to Keck, so I could go see all the specialists I needed at the same place instead of spending months looking for someone in Colorado. Especially when it became clear that Aspen wouldn't be able to go back to campus, I felt like I didn't really have much of a choice. It just didn't work for me to stay home, and I really wanted to go back to school. I know it sounds dumb that Aspen staying home would influence my decision, but I'm sure most of you also thought it was weird that we were both taking the same semester off. I think it seems to a lot of people that we are inseparable and always doing the same things, which we often are, but not purposely, and it is important to me that people also think of us as individuals. Even though I would really miss her, having the whole semester at school without her would also be a great opportunity for me to just get to be my own person.
I went back to school early for Spring RA training, and I didn't feel great, but I was really excited to be back. For the first time since started college, I was actually able to get a spot in all of the classes I wanted to take. I finished all of my GEs (General Education classes)
last semester, so now all of the classes were related to my major and minors, and I was looking forward to every one of them. The student organization I was the president of had a lot of programs planned for the semester, I already had a ton of ideas for RA events on my floor, and I had found a couple of new clubs to join. This was going to be a good semester.
That Monday, I had one class at 9 a.m. and one at 1 p.m. I woke up at 8 to get ready for my first class, which was a tap dance elective that I was super excited for, but I was so exhausted that I ended up dropping the class half an hour before it started. There was no way I would have the energy to make it through a two-hour dance class at 9 a.m. twice a week. Instead, I went back to sleep for a few hours and then got ready for my next class, which was an acting class that I expected to be easy and fun. That class was two hours of sitting and listening to the professor talk about herself and painstakingly review everything on the syllabus. Despite the fact that I had slept in that morning and that all we were doing was sitting, I barely made it through class. I was just so tired, and I was in so much pain that I was hardly paying attention; I couldn't think about anything else. I don't mind doing schoolwork, but this class had way too much busy work, and I was exhausted just thinking about it. I was getting stressed out about how I was going to manage all of it, but I kept thinking, "it's okay, I don't have to do it," and then wondering why I thought that. It became clear to me halfway through this class that there was absolutely no way I could handle school this semester. I couldn't even remember why I wanted to come back so badly in the first place. What was I thinking? I'm sure I could have handled it, but I would have been miserable. I would've spent every day just trying to get the energy to do my homework or do laundry, and I certainly wouldn't have the energy to do anything fun. I would've dreaded going to my classes nearly every day. There was just no point in me staying. I called my parents as soon as that class was over and told them that, even though I had just said the night before I was positive I was staying, I needed to come home.
It's a really terrible feeling to suddenly be so incapacitated, especially when you have no idea why you feel that way. Even though I had been dealing with these symptoms for a long time, it had never been anywhere near as bad as it was at this point. It was like I just woke up one day and Ashley had been replaced by this completely different person who was sick and tired and crabby and whiney all the time. I didn't like this person. I desperately wanted to stay at school, not because I loved being there so much, but because I didn't want this to disrupt my life, and I wanted to keep doing the things that I loved. I wanted to have normal college problems like wondering if a boy liked me back or pulling an all-nighter to finish a paper; my college experience so far was filled with global pandemics, critically-ill sisters, and weeks spent in the hospital.
Even more than that, it didn't feel like it was okay for me to take time off. I didn't even have a diagnosis; nearly every test I had done came back normal. Doctor after doctor would tell me "you're on Zoloft, so clearly this is all in your head" or "you need to push past the pain so that your body realizes there's not actually anything wrong," and it was easy to believe them. I met with my psychiatrist the other day and told her I want to stop taking Zoloft because it seems like nearly every time someone sees it in my file, they assume my pain isn't real. I started taking it in the first place because I was told so many times that the fatigue and exhaustion I was experiencing were probably mental issues, but now I feel like it's become sort of a scarlet letter on my medical records. It's disheartening that that is still the case; mental health issues are just as valid as physical issues. I am sure that mental health and physical health both impact the other, but it feels like there is still so much stigma around mental health that so many things are brushed off as being "all in someone's head." I've done every natural remedy I (and Google) could possibly come up with: exercise, special diets, natural supplements, meditation, therapy... you name it, I've probably tried it. Since I've been home, I've gone to probably a dozen doctors appointments, and after almost every one, I feel completely discouraged and tell my parents we need to stop wasting time and money on these appointments when there's clearly nothing wrong.
At the same time, I know there's something wrong. There is certainly something to be said about the mind-body connection, but I highly doubt that we can just get rid of pain or illness by thinking differently. If that was possible, a lot less people would be suffering. As I've said, I truly believe that most doctors are doing their best, but it's also endlessly frustrating to be in intense pain and have that constantly dismissed and diminished by the people who are supposed to be helping just because there aren't easy answers. At this point, I don't have any expectation that a single doctor is going to have an answer or a cure, and that's not even what I want from them. I want to feel better, of course, but I also understand that this isn't going to simply go away. I can't overstate how great it feels when the rare doctor actually listens and validates how I'm feeling. When they say, "of course you're not making this up," or "I don't have an answer, but here's what we can do next" instead of all the other things I usually hear.
It is already April as I am writing this, long past when I thought I would be "better." I know I made the right choice coming home for the semester, but the point was to figure out what the problem was and fix it so I could get on with my life. I have a potential diagnosis of Fibromyalgia and Chronic Fatigue Syndrome, though I also recently started a medication that is supposed to help with autoimmune conditions like Lupus. At this point, it seems unlikely that I will have a firm diagnosis anytime soon. As frustrating and sometimes invalidating as that can feel, I have to be grateful that progress is at least being made; I know many people wait years or decades to even get a prescription for some of the things I'm already taking. I'm also realizing that this is probably not something that is going to just get better like a virus or a broken bone. I have a chronic illness, and I'm going to have to live with it.
To be completely honest, that can feel a little bit depressing sometimes. I've been listening to podcasts and reading books and blogs from others with chronic illnesses recently, which have provided an incredible amount of comfort in helping me feel like I am not alone and not crazy. At the same time, hearing people with the same issues as me talk about not being able to hold full-time jobs, having difficulties maintaining relationships, and struggling daily with pain and fatigue is discouraging. I am slowly letting go of the idea that I'm going to go back to "normal," but this is not an easy thing to do. I have always been overly-ambitious and productive to a fault. I am not good at relaxing; I'm not sure I even know how to. I always strive to "live life to the fullest" and "make every moment count," and I've spent the last thirteen years of my life making grand plans for my future (I specifically remember Aspen and I coming up with "Somers, Inc." at the age of six, which was supposed to be the next Disney), but these things suddenly feel out of reach. Half of the "moments" in my life the past few months have been dedicated to doctors appointments, researching treatment options, visiting the pharmacy, shopping for weird organic foods that my stomach might be able to tolerate, sleeping, and complaining. It sucks to not be able to do anything, and it sucks even more to not want to do anything.
I had quite the rude awakening a few days ago when Aspen and I were discussing our summer theatre programs at our non-profit, and Aspen mentioned something about hiring someone else if I wasn't able to teach. I thought she was crazy for a second until I realized, I've been operating under the assumption that I would feel completely normal this summer. If I don't feel any differently than I do now, there's no way I'll be able to handle six weeks of summer camps, and I don't think I even want to. There's nothing I enjoy more than teaching classes and camps at Stagebugz, but right now, just the thought of it is exhausting. I feel the same way about school; I love college, but I have no desire to ever go back at this point. Suddenly, I've turned from being overactive and hyper-productive to being sluggish and indifferent. It's not because I don't care, it's just that I don't have the energy to do more than care. I rarely get up before noon, but sometimes I stay up until 6 or 7 in the morning because, no matter how tired I am, I can't seem to fall asleep during the night. Fatigue and insomnia often go hand-in-hand, which is very ironic and irritating. I also often have trouble actually going to bed because I dread the process of waking up. I don't remember what it was like before all of this started, but my understanding is that people generally feel good and refreshed when they wake up, right? But maybe I'm wrong; I certainly don't. I often have the most energy at night, so I struggle with going to bed because it's usually a few long, miserable hours from the time I wake up to the time I can actually start my day. When I wake up, I am in the worst pain of the day. My whole GI system feels like a toxic waste dump, and I am far more tired than I was before I went to sleep. My joints and muscles are incredibly stiff; lately I've had to wait 30 minutes or an hour before I can even straighten my fingers. I can't go back to sleep because I'm so uncomfortable, so I just lay awake thinking about how much everything hurts or binge-watching old TV shows on my phone and stressing about all the more important stuff I could be doing. I rarely ever actually feel awake; I usually finally get up because I have a doctor's appointment or a meeting I can't miss.
I am late way more than I should be, and I cancel almost everything I can get out of at the last-minute. I used to be extremely committed, but lately, I'm simply too tired. When I say 'tired,' I don't mean the high-school-tired where you had to wake up early and you're having trouble staying awake in algebra. I mean a kind of tired I'd never experienced before, the kind that is so overwhelming it feels like someone stuck a vacuum in you and is sucking out every last ounce of energy you have; you can hardly move and you've lost all ability to care. I'll make plans or schedule appointments with every intention of following through, but when it comes time to actually do them, it feels impossible. I am sick of being the friend who backs out of things at the last minute, the cousin who never goes to anything because she "doesn't feel good," and the kid who misses dinner almost every night because she's too tired by dinner time to get out of bed. I hate getting a terrible stomach ache after eating a little ice cream cone with my sister, needing to take a nap after only an hour of bowling with my grandpa, or limping every time I stand up because my knees get so stiff from sitting for even a couple of minutes. I know everyone does their best to be supportive and understand, but I can imagine that it probably sounds ridiculous to people who haven't experienced this that I can't even handle simple things. I am certain if it was the other way around, I would find me dramatic and annoying.
I want to enjoy things again and have the energy to do something important with my life, not waste it being tired and uncomfortable. At the same time, there is a lot I have to be grateful for and hopeful about. It is really, really hard to not be able to do everything I used to be able to or everything I want to do, but I'm also learning to find a balance. It's extremely liberating to understand that my symptoms are real and to have permission to rest. I've had to reframe "wasting time" as a part of being productive; if I push too hard, I won't be able to do anything. I truly am hopeful that the right combination of treatments and lifestyle changes will help me slowly improve, and I will learn to adapt to this "new normal." I don't think I'm going to get completely better, which is sometimes disappointing and scary, but I'm going to do the best I can with whatever I'm able to do.
I know I sound like I'm complaining, and I kind of am, but I am really just trying to paint a picture of what it's like. I know that a lot of people struggle with things a lot worse, and I feel like this experience has allowed me to be much more empathetic and understanding of other people's situations. That's really why I wanted to write this blog post in the first place. First of all, I've just found so much comfort from hearing people's stories that are similar to mine, so I hope I can provide that for others by sharing my experiences. I never used to understand chronic illnesses or disabilities, and I subconsciously separated these people from myself. It was something I could never comprehend experiencing, and I would (and still do) unintentionally write off people who were struggling with anything because I didn't know how to help them. I often feel awkward about my struggles; that's why it took me so long to publish this blog post (I started it over a month ago!). I hated having to talk to my professors, employers, and friends when I left school to go to the hospital. Even if they were supportive, I was so embarrassed to be "the sick girl." I often push myself way too much to try to do things that are too hard because it's easier than having to explain why I can't do something, especially since I don't even have an official diagnosis right now. I know how people react to things like this; we've all done it. If we see that someone's in a wheelchair or is losing their hair from chemo, we often treat them differently, like they're suddenly defined by their struggles and are less of a human. When people have an invisible illness or disability, it's easy to write them off as dramatic or attention-seeking. If we're being honest, I think most of us can agree that if a coworker or classmate of ours got sick, we wouldn't think of them the same way.
I want to share what I've come to learn about what it's like living with it and share that people with chronic illnesses are just normal people who happen to have malfunctioning bodies. I can't speak for anyone else with a disability, but I think we somehow need to change the way we think about people who have different abilities than us. More importantly, despite all of this, I still consider myself an extremely lucky person. Around 25% of Americans live with some sort of chronic pain, so it's much more common than I think most of us realize. Aside from that, millions of people live with other devastating illnesses as well as issues with family, finances, work, mental health, or pretty much anything else you can think of. It's so easy to judge people, and I know this is cliché, but we truly have no idea what others are going through. I have often caught myself thinking lately that I deserve more slack and understanding because of this illness, but I forget to extend that same grace to everyone else, even though I know logically that they probably need it more than I do.
I'm not sharing all of this because I want sympathy. However, our blog doesn't have very many readers right now, and pretty much all of them are my friends and family whom I know are very kind and caring people, and I'm a master at complaining, so I imagine you might feel bad for me from reading this long rant. Again, I'm not trying to make anyone feel bad for me, but I hope that you will keep this in mind when you interact with other people after reading this. You will probably encounter someone today who is dealing with chronic pain right now, and maybe someone who is suffering from anxiety or depression, and someone else who is grieving some sort of loss. This may sound counterintuitive since I just said we shouldn't treat people differently, but what I mean is that we should start treating everyone differently, not with pity, but with a little more kindness and grace. It's certainly a lot easier said than done, but even just trying can make such a difference. Instead of being upset when someone cancels your plans, maybe ask if they're okay. Instead of yelling at a cashier who messes up, try extending them a little extra patience. Instead of flipping someone off who cuts you off while driving, give them the benefit of the doubt that they had a good reason for doing it. Instead of making fun of a coworker or classmate who is acting weird, put yourself in their shoes and imagine what they might be going through. I could go on, but I think you get the idea.
I'm not going to say that I'm grateful for this illness. I really admire people who can say that about difficult things they've gone through, and I am confident that I will feel that way someday, but right now, I'm pretty annoyed at it and I wish it would leave me alone. However, there are also so many things that I truly am grateful for. Most of all, this experience has taught me to be more empathetic and understanding because empathy and understanding from other people is what has gotten me through it so far. I am certainly not even close to perfect at remembering to treat people better, but I am thankful that I have a new perspective on relating to other people. I want to share my experience and what I've learned from it with everyone in hopes that it might give you a new perspective too, and you might be able to understand other people differently. Wouldn't the world be a much better place if we were all just a little bit kinder?
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