Over the course of my almost three decades on this planet, I have been called many things. Healthy has rarely been one of them. Being ill and/or injured has been such a large part of my life no one who knows me is even surprised anymore when my immune system decides to fuck me over. In fact, my pediatrician congratulated me the first time I went six months between doctors visits. I was fifteen. As a child, it was downright awful and I still come with a list of allergies, sensitivities, and drug interactions a mile long. Like millions of other Americans, I suffer from chronic illness. I’m going to try to briefly describe my various maladies and how they affect my life here.
As a tiny person, I had RSV and Hand, Foot, and Mouth (H, F,+M) before the age of two. During the RSV, my fever ran so high that I have permanent lines on the adult teeth that were developing at the time. I ended up on breathing treatments at the local Children’s hospital. H, F,+M is what my mother claims finally broke me from the bottle. I caught it again from my daycare kids a couple years back because surprise! you can totally get it more than once. I would depict H, F,+M as feeling like you have a bad cold on top of the blisters all over your body. If your child contracts this, just keep them home and let them be miserable. Because they are, I assure you. I also suffered from a wide range of inconvenient allergies including Shellfish, MSG, penicillin, and red dye #40. I couldn’t eat out, I had to constantly watch antibiotics, and I couldn’t drink Kool-Aid, Hi-C, Hawaiian Punch, or basically anything that wasn’t 100% natural ingredients like juice. If you gave me some, I broke out in horrible yeast infections. How horrible you ask? I missed almost two weeks of second grade because of one.
During puberty, I developed terrible insomnia that would haunt me well into my twenties. I didn’t realize it was true insomnia for several years because I would fall asleep fine but then be back up every few hours until morning. Just imagine. I did not sleep through the night on a regular basis for seven or eight years. The sleep deprivation would have been depressing enough on its own but it was accompanied by hypnopompic and hypnagogic (or when waking up and when falling asleep) hallucinations. It almost feels like someone left the television on in your head. They constantly change channels while you're trying to fall asleep. They didn’t usually talk to me although they certainly could. Most of my hallucinations were auditory with an occasionally visual or the thankfully very rare and unsettling tactile. I was terrified and at times, completely certain I was losing my mind. At its worst, during my sophomore year of college, I slept an hour and a half at a time. I passed Gen Chem (barely) on four hours a night. The problem when you’re sleeping that little is you’re so exhausted you might start drifting out just sitting in a comfy chair and because you’re always in danger of falling asleep, the hallucinations start to come out during the day.
At the age of sixteen, I was diagnosed with Irritable Bowel Syndrome or IBS. IBS is a condition affecting the digestive system that when aggravated by certain food triggers or stress can severely put a chink in one's day. It can cause gas, bloating, terrible stomach cramps, anal fissures, hemorrhoids, diarrhea, and constipation. During an episode, it can be hard enough to leave the bathroom let alone go out to the grocery store or work. The pain can be so bad that it raises your blood pressure so high it feels like you’re having a hot flash. When it gets particularly bad, I need to keep extra clothes on hand for emergencies. There are even times I have had to consider buying adult diapers just to get through the day. Think that time of the month sucks enough, nope. Period symptoms actively make your IBS flares worse. In order to maintain some form of control, I take Magnesium daily and keep a smooth muscle relaxer and fiber pills on hand for when it gets bad. There’s also a special diet that I’m supposed to follow to avoid trigger foods.
On my twenty-fourth birthday, my life drastically changed overnight. I went out and partied harder than I should have but it was more than that. It was like someone had flipped a switch in my head and I didn’t manage to get my feet back on solid ground for almost eight months. I went from being active, happy, relatively normal twenty-something to someone who was nervous, depressed, and withdrawn. Even stranger, I never knew which of these two girls I would wake up as from one day to the next. Thankfully, I only flirted briefly with passive suicidal ideation and never went farther than that. I had negative intrusive thoughts all the time and was constantly scared of giving up and hurting myself. I spent the following months trying to get help with mixed results. The first nurse practitioner I saw thought I was schizophrenic. I finally found a therapist willing to take me on as a patient and she located a psychologist to set me up with medication. It was during this time that I was diagnosed with Bipolar Disorder. I think we finally decided on Type I if you were wondering.
Bipolar Disorder is different for everybody and overall, I would say that even unmedicated mine is relatively mild. I’ve never gone out and spent all my money or had irresponsible sex or anything like that. I either want to sleep twenty hours a day or I wake up at six am and run full speed ahead until I fall into bed, dead to the world. There is no in-between. It’s either obsessively clean the whole house or barely have the energy to bathe. Depression is this weird unsettling thing where you would do just about anything to feel even a little bit better. I laid in the bathtub a lot. Mania convinces you that you can do anything. I could run marathons, climb mountains, run like 30 miles a week, and lose massive amounts of weight. Literally, anything I set my mind to, I went after like an out of control freight train. Even if you know you’re going to crash, there’s nothing you can do to stop. I was finally prescribed a mood stabilizer, Lithium, to balance me back out. I like it. I’ve been on it ever since. Like any medication, it does have side effects and it does interact with other drugs. I can’t eat much salt or take NSAIDs without having my blood work monitored. I have to drink water constantly to avoid getting dehydrated. If the amount of Lithium in my blood gets too high, it could cause me to hallucinate or have seizures.
One of the nastier side effects of Lithium is that it can seriously mess with your thyroid causing problems like weight gain, menstrual issues, being constantly cold, irritability, and irregular heartbeat. Unfortunately, it takes forever to receive a proper diagnosis because blood tests only catch snapshots of what's happening at any given time. It took about a year to pin down that I had hyperthyroidism. After that, it doesn’t get any easier because most medical professionals are more used to hypothyroidism so they’ve never heard of your medication and the explanations get old fast. You’re not supposed to drink alcohol on Lithium or on my thyroid meds. I do sometimes but it’s supposed to be a no-no.
Shortly after being declared to have hyperthyroid problems, my lovely psychologist came to the conclusion that I had Binge Eating Disorder and ADHD. I had always figured I had ADHD but it had never been enough of a problem for me to seek out care for it. I got good grades, stayed out of trouble, graduated from not only high school but college as well. Girls usually fall through the cracks when it comes to ADHD so I figured that is what had happened to me. The eating disorder was something of a surprise though. It makes sense in hindsight but most things do. I have no ability to tell myself no. I eat until either I make myself sick or there’s no more. Off meds, I can out eat Vaguely Defined Significant Other who is a good foot taller than me and at least a hundred pounds heavier. I take the same medication for both of these problems. It’s a nifty little drug called Vyvanse. In order to take it, I have to monitor my blood pressure and heart rate every day. I also can’t have much caffeine. It gives me the shakes and makes my chest hurt.
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| A Real French Style Latte |
I know what you’re thinking and yes, I have all of these issues wrong with me all the time. I never get to have a day off. No matter what I look like, I am never not sick. There are times when the only reason I don’t cancel doctors appointments is that they have 24-hour limits or you have to pay. I have insurance through the Marketplace because there’s no way I can go without it. What I want you to remember is that I happen to be a fairly happy and well-managed case. Not all chronically ill individuals can get out of the house, hold down a job, or enjoy their friends. We’re always fighting to listen to out limitations while still trying to be the person we were before. I hope that by listening to me you have learned something about what it's like to be chronically ill. There is still an ongoing stigma around people who have chronic mental and physical issues but we’re here and we’re not going anywhere. Please feel free to ask me any questions you may have here in the comments or you can email @Southernatheist99@gmail.com
Thanks for Reading,
A Southern Atheist
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