You wake up. You're so tired. You look at the clock. You got eight hours of sleep, and yet you don't feel remotely well-rested. You manage to get out of bed enough to swallow the pill you need to stop being fatigued. That's all you have energy for. You get back into bed. Now is when the abdominal cramps start. They wrack your entire upper body with pain and you wriggle around in your bed, searching for a position that offers some relief.
You really don't feel like doing anything that might make the abdominal pain worse, but you know you have to swallow the four other pills you take in the morning, so you choke them down with some water. Your stomach lurches as you try to hold them down and so you take an anti-nausea pill. It works well enough to keep down the pills, but not well enough to banish the last lingering trace of nausea from your throat.
It's been about an hour, and your anti-fatigue meds are starting to kick in. Thank goodness, because it's past time for you to get your day started, which you are finally able to do, but only just.
You get out of bed and stretch your aching muscles, then take a shower. The hot water helps soothe them somewhat, but not the abdominal cramps, which make you squirm and twist in pain. You instinctively bend over and crouch down under the water, protecting your painful insides. You look at your toes and count them, trying to focus on something other than the pain. The pain translates itself into nausea as your intestine rejects the water you just drank and pushes it backwards into your stomach, which starts to heave. You throw up remnants of pills, stomach acid, and bile. Water runs down your face. Maybe you’re crying, or it’s just from the shower. Maybe both. You need to get up. You eventually make it out of the shower and you get dressed and ready to go.
Now you're running late. Shouldn't have spent so much time in agony, curled in a ball on the floor of the shower, crying. You manage to catch a bus, just barely. Having breakfast is out of the question- you don't have time. It's just as well; you don't really feel like putting anything in your writhing, painful insides.
The anti-fatigue medication has kicked in the rest of the way, but you're still tired. Your head feels fuzzy. And so does your tongue. You have an oral thrush infection again. That's an extra five pills to take today. If only the fuzzy-headedness was so easily taken care of. Sitting in class, it's hard to pay attention, even though it's your favorite subject. You're just so tired. Your left arm starts twitching in class and you pray it's not the beginning of a seizure. You've already had one this week, and you can't afford to miss any more class because your consciousness is shattered, your brain overrun by faulty electrical signals. To your relief, the twitching stops. No electrical storm today.
You get an email from your department, talking about an exciting internship opportunity next fall in Moorea, the research station on a tropical island at your university. You’d love to go. You know you can’t. There aren’t medical facilities equipped to deal with you there. No point in applying. You have to save your resources for the important thing- finishing school. It’s taken this long--it’ll be nine years by the time you’ll be done. You don’t want it to take any longer.
After class, it's time to study. As you pull out your books, you feel anxious and just a hint of panic--you’re behind in your studies. You have to catch up on all that stuff that you didn't understand last week because you actually did have a seizure halfway through class. You're having even more trouble concentrating. Why is that? Oh, right, it's nearly 1 PM and it's been more than twelve hours since you've eaten anything. You must be running on empty. You really don't want to put anything in that sluggish gut of yours, but you know you have to if you want to be at all productive today. So you start out slow, with a smoothie. The first sip goes down okay. Now you feel full. Drinking the entire thing seems daunting. You make yourself do it anyway, because you know you have to. You feel accomplished when you're done, but now the real task has started--keeping it down.
Now you have to go to the pharmacy. You've got some prescriptions to pick up. They were called in last week, even so, they're not ready yet, so you wait, worrying about the stuff you have to do. You wistfully think to yourself about the half an hour you're losing here, and how that time might be better spent. You think about the internship, but push it out of your mind. It’s not an option for you. There’s no point in wishing for things you can’t have.
It's time for your second class and your intestine is starting to hurt, badly, from that smoothie. You've been trying to stay hydrated--it's important to, to prevent kidney stones. You don't want any more of those. Drinking enough water is difficult since your sensitive stomach wants to reject whatever's inside if it feels too full. But now the water and the smoothie are just too much for your body to handle and your intestine screams at you, writhing and twisting, trying so hard, but unable, to do what it was meant to. You try to combat the pain, you try to breathe deeply and slowly, you try to focus on the techniques your professor is talking about, but the pain starts to blind you. Your head goes light and your vision dark. You can't take much more of it. You swallow a painkiller (which you don't like to take, because they also make your head feel thick and your mind slow and stupid, but what choice do you have?) and bite your lip to keep from screaming. You run out of class, ten minutes before it's over, ashamed at what your peers might think, but the pain outweighs the shame. You run into the bathroom, where you collapse on the toilet, put your head in your hands and focus your entire being on getting through the pain. You stay there for an hour, waiting for the painkiller to kick in and for the pain to dissipate.
You missed a phone call while you were in the bathroom. You check your voicemail. There’s a message--it’s from your pharmacy--the other pharmacy, the specialty one. It’s a mail-order pharmacy. You wish you could just use your local pharmacy, but this medication is so rarely prescribed that few people have heard of it, even the “Customer Care Advocates” at the pharmacy. You listen to the message and sigh. It’s a pre-recorded message saying there was a problem with your order--like there is almost every month--and that you need to call them back right away. You call back, and after navigating a maze of phone options, are finally directed to a “Customer Care Advocate” who promptly puts you on hold for five minutes. When she finally gets back to you, she tells you that there is some unidentifiable “issue” with your insurance or your prescription and that they need to get clarification from your doctor. Which means, you need to call your doctor, and tell them there’s a problem, because the “Customer Care Advocate” won’t do it for you. You feel neither cared nor advocated for. You call your doctor and undergo a very similar process--navigating options, put on hold, transferred. Eventually, you are directed to the nurse’s line, which goes to voice mail. You leave a message detailing the problem. At this point, it’s out of your hands and you can only hope that they will straighten it out for you--but you’ll call back tomorrow to confirm, anyway. If they don’t get it figured out in time, you’ll miss a dose of the only medication that keeps your intestine doing the small amount of work that it does. You hate to think about how much more pain missing a dose would mean, but it’s not good to dwell on the what-ifs. For now, you can only hope that tomorrow the problem will be resolved.
Dinner time rolls around and your body cries out that it needs something substantial--protein, carbohydrates, something to make up for all of that energy lost to studying, eating, and walking around with your too-full backpack. Your friend asks if you want to get dinner together, and you wonder if your body could handle some thick soup. It might, even though your intestine is still hurting a little from earlier and your chest is in agony from esophageal spasms. You decide to try it, but you take half of a painkiller nonetheless. You have a study group after this and you need to weigh in your head if you'd rather be sleepy from medication or in pain. You choose the medication.
In your study group, your mind wanders. "Did I take all my pills today? (Yes.) Did I schedule that doctor's appointment? (No.) Did I get enough calories? (Probably not.)" You try to focus--you have a test in two days and you want to do well.
You get home exhausted. There are chores to do, but you just can't seem to bring yourself to do them. You're just so tired. Maybe tomorrow you will have the energy. (That's what you tell yourself, a white lie to hold off despair.) You can put off most chores, but there are things that must be done. You have to take your evening pills (five) and take your evening injection, the one that prevents your intestine from being completely non-functional. You swab your arm with alcohol and don't bat an eye as you jab the needle into your skin. You've given yourself this injection (nearly) every night for the past four years, and it's become completely routine. You forget sometimes that there are people who live lives that don't include nightly injections or the possibility of eating without fear of pain.
Your day is over. You made it. It's been hard, but not much different than any other day. You start to drift off to sleep, knowing that you will soon have to face another day, following a similar routine. You think about your midterm next week, and hope that things will be a little by then. Your mind, drowsy and hazy, wanders toward the future, something you usually try not to think about, the possibilities frightening. You think about next year, when you will hopefully have finished school. You hope to get a job in your field, but you don’t know if you’ll be physically capable of working full-time. You think about ten years from now, a far off future that seems completely foreign and uncertain. What will your day be like then, how will you live your life? Considering your rate of decline over the past five years, you’ll almost certainly be sicker. Maybe your gut will have failed completely by then. Will you be able to eat anything at all? Will your seizures be under control? Will they get worse? Will you have some new problem to deal with, your body slowly falling apart, piece by piece? Will you even be alive in ten years? Or, will there be better treatments available, more options for you than just holding off pain? Will the rate of medical advancement overtake the rate of your decline? You can only hope and, for now, get through another day. Wavering between hope and doubt, you finally succumb to sleep.
Mitochondrial disease (or Mito) is estimated to effect one out of every 2000 children born in the United States. My life may seem difficult, but I am one of the lucky ones. Those who are diagnosed under the age of two are unlikely to reach their fifth birthday. Mito has irreparably damaged my brain, kidneys, nervous system, and gastrointestinal tract, but it can affect almost any organ in the body, and there are few treatments available. This type of disease is poorly understood by all but the most specialized medical professionals. Help raise awareness and money for a cure by joining me on April 14th for the United Mitochondrial Disease Foundation’s Energy Walk for Life.