It’s one in the morning on New Year’s Day. I’m alone in my room savoring the last taste of mini-chocolate donuts before my medicine kicks in. Once it does, I get so nauseous that all I can do is lay still and hope that I can sleep.
When the clock hit midnight, I was lying in bed watching a documentary about obese people on my computer.
I was alone.
The only “Happy New Year” wishes I got were two texts. One was from a wrong number. The other was from one of my friends that I’m in the process of losing touch with; I suspect it was a mass message to everyone in her phone.
My mom and sister were downstairs, but they made no effort to come see me. I’d snapped at them earlier, so they left me alone. My boyfriend didn’t say anything either. I haven’t heard from him since seven, when he said he was sorry for not coming over because he was tired and in a meh mood. I’m guessing he fell asleep.
I’ve spent most of that time crying on and off.
You see, the problem is that I’ve spent the last three days with a pain in my left side, and while it fades in and out, it’s been getting worse. Normally this wouldn’t bother me too much, but in the last three weeks I’ve been in and out of doctors’ offices. I started off with a Urinary Tract Infection (my third since May), and after being off of those antibiotics for a day, I developed an ear infection. While I had my ear infection, my allergies ran amok, and I had to get a special nose spray to allow some sinus tube to open back up. I just finished the antibiotics for the ear infection yesterday morning.
All of this would be overwhelming enough by itself, but this happened after almost an entire year when I didn’t go one week without something happening to make me stop what I’m doing and curl up on the couch and wait for it to go away.
All of this has happened because I have fibromyalgia.
I’d explain what fibromyalgia is to you, but I don’t even know myself – my doctors don’t either. They THINK it’s nerves over-reacting and sending out false pain signals. But if that were all there was, it wouldn’t be associated with so many other things. If you stop by any fibromyalgia website, you can click on a page and find a long list of associated diseases and ailments. All of them aren’t even listed.
As if the pain and stiffness weren’t enough, now I have Irritable Bowel Syndrome, chronic fatigue and insomnia, sensitivity to temperature and certain chemical smells, loss of concentration, and worse, anxiety. I hope that my reproductive organs function properly, because I want children one day (Even though I already know this might not be true. I’ve had one cyst and irregular periods so my doctor threw me on birth control a few years ago and that was that.)
So I have my pill cocktails for this thing and that thing, and I have patterns I need to follow or else something will flare up. There’s an even bigger problem with all of these things: I’m nineteen.
I was diagnosed with fibromyalgia at sixteen, and for a while it looked like it was being managed by medication. I was able to function and go to school and go out with friends. It would flare up every now again around my periods and during the winter, but it was still manageable…until January of this past year.
My doctor decided to switch me to a new drug for fibromyalgia. This drug was hardcore. It came in a trial in this little book container. I had to ease into it because it carried some potentially harsh side effects. It was hell from the beginning. I was nauseous from the second pill, but my mom and I decided to give it a chance.
By the middle of the trial, I was so nauseous and weak that it put my new part-time job into jeopardy. I sat through the orientation trying not to throw up. When I started having heart palpitations to the point where my heart stopped beating long enough for me to panic, we decided to take me off of the drug, but of course, I had to taper down because there was a chance of seizures from suddenly stopping.
Ever since, the problems haven’t stopped. I’m more than a semester behind in college because I’ve had to drop classes. This next semester, I will try for the third time to finish Composition 2 and Intro. to Sociology, and at this point, I’m not sure if I will be able to do it on this try.
I did online classes last semester, and this semester was supposed to be my attempt at real classes again. My anxiety has been right below the surface for weeks. I keep thinking, “If I can’t even make it more than a few days without something happening, how can I make it through classes? How can I live a normal life and have a job when I can barely function for more than a few days?”
I’m very aware of how much my parents spend on my doctor’s appointments and medications – it isn’t a small sum. My mom’s stack of doctor’s bills and reports is easily over six inches. I know my insurance runs out when I hit twenty-five, so I know I have a time limit to finish school and find a job, but I’m going to school to be a high-school English teacher. My starting salary will be somewhere in the mid thirty thousand dollar range.
I don’t want to have to admit that I will have to rely on someone to help take care of me, but honestly, on a teacher’s salary, I will be stuck at home until I pay off all of my student debts or I move in with a boyfriend. I refuse to live with friends because I don’t want them to have to take care of me when I get bad. I don’t want them to have to bring me things when I can’t get up. I don’t want them to have to sit with me when I’m curled up in bed sobbing because I don’t want to be sick anymore.
All I can do is hope that it will go back into remission or I can find a way to manage it because I don’t know how I can ever have a normal life with it as it is. I always have the fear that people are going to leave me because I’m such a mess. I tell my boyfriend that I’m a mess; that I’m falling apart, and he tries to reassure me that the rest of me makes up for it.
It angers me when people don’t take my illness seriously. My sister laughs at me if I tell her why I’m feeling bad. I’ve had people tell me it was all in my head or look suspiciously at me when I can’t give them an adequate explanation of fibromyalgia.
I know I don’t look sick, but I like it that way. If I looked sick every time I felt bad, I’d always look awful. I get mad when I see all this research money being thrown at all these other manageable diseases or anti-ageing products when fibromyalgia has the potential to systematically destroy people’s lives. It doesn’t matter that it’s not deadly: if a disease has a potential to confine you to bed, it deserves funding.
My plans for my future are very tentative. Even if I’m only planning a week in advance, I have to add “I think” to the end of it because I have no idea if I’ll be up to it. I’m sick of having to add “I think” to all of my plans.
I want to have a job. I want to go to school full-time. I to live on my own. I want all of the things people my age complain about. I want these things because they’re normal. I want to know that I can be normal. It hurts to hear people complain about this stuff – I want so badly to do it all.
My political views are becoming more liberal. I’m okay with universal healthcare when we can afford it. I need it. I’d gladly pay extra taxes if it means I don’t have to pay for outrageous doctor bills or ridiculously expensive mediation because I react badly to certain generics.
I support abortion because if I were to accidentally get pregnant, I’d have to choose whether to put my body through excruciating hell and lose all functionality for nine months, or abort. I’m not even fond of the idea of abortion, but I still want that option.
I recently started supporting medical marijuana because my body is being worn down by pain medications. I get upset when people try to oppose me on that one. My favorite argument is that America doesn’t need more high people because people with chronic pain are already high all the time. People in chronic pain take pain pills to function, not to relax. (Also, the people who actually would need medical marijuana hate the people who want to abuse it just as much as you do.) I’d gladly eat a pot brownie instead of taking a pain pill that’ll leave me nauseous and weak for six hours and for half a day afterward because my body is already worn down.
Do I need to repeat that I’m only nineteen?
And all I can do is just sit, wait, swallow some pills, try to exercise when my body lets me, try to eat healthy when my stomach lets me, and hope that I can get everything into a manageable state.
I’m starting to feel it’s too much to hope for it to just go away.