Chronic Illness Part One: Being Sick Sucks

This post goes out to everyone with a chronic illness. If that applies to you, you're awesome and I am so sorry.

I've kind of skirted around this topic for some reason, but I decided that I needed to not do that anymore because this is another one of those kind of taboo subjects. It's something that SO many people struggle with, and yet no one talks about it. And so no one really understands what it's like.

Which I think is part of the reason that I've been afraid to talk about it. Because I don't want to talk about all of these health problems and the take away be "Wow. That girl's got even more issues than I thought." Even if that's true. But people have been really understanding about my life being a mess because of a felony. I can only hope that they'll be understanding of my life being a mess because of invisible illnesses that have plagued me my whole life.

Anyway, here goes nothing!

Ever since I was a little girl, I've struggled with feeling sick ALL. THE. TIME. And I'll tell you what. It really, really sucks.

It sucks because feeling sick sucks. It sucks because you question every bodily function, unsure if you're body is supposed to do that, or if it's another thing that's abnormal about your body. It sucks because people think that you're faking. It sucks because you feel like you should just be used to it by now and be able to push through it. It sucks because there is SO much that you want to do but can't if you feel like death. It just sucks.

I have multiple chronic illnesses. One that I've had for as long as I can remember (insomnia), and some that developed more around 2nd grade (Irritable Bowel Syndrome, depression), some that I developed in high school (asthma, hypersomnia), and then some that I have more recently acquired (Post Traumatic Stress Disorder, which means that semi-severe anxiety has been added to the mix). Oh, and I also have a back injury that seems like it will never go away. And then there's things that I'm still not really sure about that are wrong with my body.

Okay, let's break these down, shall we?

Insomnia/Hypersomnia

For as long as I can remember, it's taken me longer to fall asleep than anyone else. I started having sleepovers when I was about five or six, and I noticed that my friends would fall asleep in a matter of minutes, leaving me to lay there in the dark for another few hours. I didn't think that there was anything wrong with me, just that some people fall asleep faster than others and I happened to be the only person that I knew that took all night to fall asleep.

I was kind of sneaky about it too. I would always tell me friends to "feel free to wake me up if you wake up first!" because I knew that they would then tell me the same thing and I knew that I would always be awake first.

When I wasn't at a sleepover, I spent most of my hours in bed reading. My dad would come in and the lights would still be on and he would ask "do you know what time it is?!" and I would honestly tell him no. Then he would tell me to turn my lights out and go to sleep. But I knew that I wasn't going to be able to just fall asleep, so I usually just kept reading until all of the words started blurring together and I knew that I could actually fall asleep finally.

Not trying to sound like a disobedient little toerag, but I had to do what I had to do. Anyone that knows me knows that I HATE being bored. And there are few things more boring than laying in bed- in the dark -for hours on end trying to fall asleep. So I would read instead.

When I was a kid, my body still somehow functioned on very little sleep. As I got older though, this became a much bigger problem. So- sometime in middle school I think -I was prescribed sleep medication that I have taken every night since. With the medicine, I could (generally) fall asleep and stay asleep better, but for some reason I was still crazy exhausted the next day anyway.

It didn't matter how many hours of sleep I got, how early I went to bed, etc. I still would be dead tired all day every day. And so I did a second sleep study (I did the first somewhere in the process of getting me onto sleep meds and such) and was diagnosed with another sleep disorder called Hypersomnia.

Insomnia is when you can't fall asleep and/or stay asleep at night. Hypersomnia is essentially when you can't stay awake during the day.

Which, obviously if I'm not sleeping at night, I'll be tired the next day. Duh. But... I was usually sleeping through the night at this point. But I couldn't stay awake for the life of me even so.

(It's not narcolepsy; I wouldn't fall asleep all of a sudden while I was walking or anything. But sit me down in any situation for very long and I struggled. A lot.)

I tried EVERYTHING to stay awake during school. I tried pinching myself, putting my leg on the cold metal part of the desk, sucking on mints, etc. I remember my Psych teacher telling me one day that he's never seen someone try so hard to stay awake in his class. He told me that usually when he saw people falling asleep, they clearly were just giving in to it. They'd lay their head on the desk and just pass out. But he watched me bob up and down for probably most of the 45 minute long class, trying desperately to get something out of the lecture.

I also remember one particular day when I started to fall asleep while taking my AP English test (you know, the one that you PAY to take?) and I was like "Uh-uh. Not now. I can't." And so I started rubbing this horrid sunburn that I had on my shoulder in the hopes that it would wake me up. No dice. So then I was panicking about falling asleep, falling asleep, AND in a crap ton of pain. Yay...

The doctor tried putting me on a stimulant to help me stay awake during the day, but it had a really horrible effect on me and made me super groggy and out of it. So I had to stop taking that pretty quickly and we just never figured anything else out.

The hypersomnia isn't quite as bad now as it used to be, but it still really gets to me sometimes. It really sucked on my mission because I almost never made it through personal study, no matter how hard I tried. I would even try studying standing up, but I'd still be so sleepy that the result was me feeling super lightheaded and nauseous. Good times.

Asthma

I've never had the greatest lung capacity in the world, but things got really bad my junior year of high school.

I got really sick about halfway through the school year. It started out as a cold, became really severe bronchitis, and then just didn't go away. I developed what we call "The Cough." Imagine coughing so hard that you literally feel like you're going to cough up not only your lungs, but every organ in your body. A cough that wracks your entire body. That tears up the back of your throat, gives you a massive headache, and makes your whole body sore. Now multiply what you pictured by about 46. THAT is The Cough.

I missed almost three months of school straight. I went to the ER multiple times when I coughed so hard, so frequently, that I could hardly breathe. They put me on literally dozens of medications including multiple inhalers, steroids, and multiple rounds of antibiotics. Nothing was working. I got breathing treatments and went to see an allergy doctor. We found out then that I was allergic to dust mites (AKA, everything) and got me on some allergy meds that made me stop being itchy all the time (which was a whole different problem), but didn't stop The Cough.

After a while, I tried to go to school. I would usually make it until about AP Music Theory. At which point my teacher would make me go home. So picture this: the music room is in the same hallway as the nurse's office. So I would walk down the hall to call my mom, then I would walk to the complete other side of the building and up the stairs to my locker, and then back down to the nurse's office to wait for my mom to pick me up. So I essentially passed EVERY SINGLE CLASSROOM. Teachers would literally stop their classes so that they could poke their heads out of the their doors and ask if I was alright because they had heard me hacking in the hallway. I'm pretty sure that the whole school became accustomed to my Cough.

Finally they put me on steroids AND and antibiotic at the same time and it eventually went away. But not before I missed every Midterm, science fair, and all of the research days for a 10 page AP Lang research paper. That was fun to make up. I had no idea what was happening in any of my classes at that point and certainly didn't remember what we had learned before. So making up the midterms was torture, I turned my science fair project in literally the last week of school, and I just about killed myself writing my paper that ended up being 18 pages long because it was about Harry Potter. Oh, and I did the musical. Don't ask me how.

Ever since that year though, I have "asthma". I put asthma in quotations because it's not typical. My rescue inhaler doesn't actually help after I've started to have an asthma attack because I don't have normal asthma attacks. I don't stop breathing or anything. I get The Cough. And once it starts, it's not going to stop anytime soon. So I basically just have to lay down for the rest of the day, knowing that I'm going to be sore and exhausted the next day. I swear I should have a six-pack by now from coughing.

Colds almost immediately turn into bronchitis for me, so winter is kind of the worst a lot of the time. I have to be really careful about exercising because if I push myself too hard I'll have an asthma attack. It's great.

So there's that.

Depression

So I said that the depression started when I was 8, but thinking back, I'm realizing that that's not really true. I definitely was always an emotional kid. I was very sensitive to others' pain. I would cry about everything and had really low self-esteem. This wasn't helped at all by moving to a state where I never, ever felt like I fit in when I was 12. It was from the ages of probably 11-16 that the depression really started to set in. In particular, I remember that the year that I turned 16 was really rough. I was super emotional all the time. I would end up alone in a side room crying during most stake dances. I felt like nobody cared about me and it made sense that they wouldn't because there was nothing special about me. It was rough.

I also remember getting super freaked out by my brother being deployed. He'd been deployed before and it hadn't really bothered me before, but this time I was just a total wreck. Constantly.

My mission was super rough for me because I didn't just get discouraged, I became completely distraught. I was so thoroughly down on myself and nothing that anyone did or said helped. I ended up having to talk to a counselor while I was a missionary because it got so bad.

Side note- Can I just say that counselors can be SO wonderful? There's something extremely validating about having a trained professional tell you that you've been through more in 20 years than many of her older patients had been through in their lives. It made me realize that maybe I wasn't as pathetic as I thought after all. Finding the right counselor is vital, but once you do, they really are amazing.

Anyway, that's all I'm really going to say about depression for now because I'll address more of that when I talk about PTSD and such.

Part Two of this post will address IBS and PTSD, so I'll talk a little bit about some of the other things really quick.

Back Injury

So I was in a bicycle accident a little over two years ago. I sprained my wrist, bruised- and possibly fractured -my ribs, bruised a few bones, and got whiplash. The wrist hurt the worst first. Then the ribs. And then my neck. And yet it's the whiplash that's still affecting me.

The pain spread from the left side of my neck down into my shoulder and back on that side, and eventually to the rest of my back and neck.

I went to the doctor, an osteopath (a chiropractor that's actually also a legit doctor as well), and physical therapy. I did PT for a few months. I went and got massages at the massage school here in Rexburg. I did exercises and fixed my posture (mostly). But my back would get better for a little bit, and then tank again. And if I try to do anything the least bit strenuous, my back hates me for weeks. I climbed The Tower at the ropes course here at school for one of my classes. It was so fun! My back didn't bother me at all! Until the next day. And then for the next two weeks. I haven't climbed since.

I work at a thrift store right now in the Small As Is/Large As Is department. This means that I'm constantly bending and lifting. My back has been angry at my for the last few months because of it. My asthma also gets angry at me because of all of the dust, and I have to wear gloves so that I don't break out because of my dust mite allergy. It's great.

The point is, my back has made it really difficult to do a lot of things. I love climbing. Trees, rock walls, you name it. But I'm so afraid of the pain that I know will follow if I do it that I just... don't anymore. A lot of exercise is hard not only because of my asthma, but now also because of my back.

So there's that.

Misc

Some other things that I still have no clue about:

My arms have always been really sensitive. My brothers would hardly touch me play punching me and it would hurt SO bad. They're still like that.

I have "weak ankles" like Megara says in Hercules. Or Kronk.

My right ankle started hurting really badly one day and didn't stop. We went to the doctor who said that I had probably sprained it. I wore an ankle brace for a while. It kind of helped. Except that I still get severe ankle pain sometimes. Not only in my right ankle, but in my left ankle as well. Sometimes one bothers me, sometimes the other, and sometimes both. I have a couple of ankle bandages that I wear occasionally when it's really bad. Not because anything is "wrong", but because my ankle just hurts.

Granted, I also have a cyst on one of my ankles, which doesn't help. It hurts to kneel on it.

Speaking of cysts. I also had one on the side of my head for years and years. I finally got it removed right before my mission. Only to have another one appear on the back of my head a few months into my mission. It's already at least the same size as the old one ended up. It doesn't really hurt most of the time, so I just ignore it. But what the?

Other than that, sometimes my legs will be really sore for seemingly no reason. Basically I just get a lot of random pain that doesn't really have an explanation. I was diagnosed with fibromyalgia at one point, but then it was decided that that's not what I have after all. That's happened to me a lot. I've been diagnosed with so many different things, only to have it retracted later when the treatments for those things did nothing. So that's cool.


Anyway, this all seems kind of pointless at the moment, but I promise that this is really going somewhere. I'm not just listing off all of the ways that my body hates me just for funsies.

I hope that you are starting to see, though, how much chronic illness/pain really does interfere with everyday life. Because I think that that is what people really don't get. They don't get how a sickness that you can't see or treat can really screw up a person's life. They don't get that functioning as a normal human being is sometimes just really hard for those of us with chronic illnesses. People think that we're being weak and whiny, or else that we're faking and just trying to get out of things. But I know that for me at least, I have a huge desire to live a normal life. I WANT to be able to have a regular schedule, go on adventures, work hard, exercise, etc. But I can't always do those things because of my body. It's not that going to work or doing homework are my favorite things in the world, but feeling like I'm a competent human being that can work hard and progress in life is.

I'll delve more into all of that in Part Two, so hang in there and I'll get Part Two soon!

(To be continued...)