Sick, sick, sick.

endometriosis, major depression, medication, rapid-cycle bipolar disorder, self-harm

As I write this, I am having a little bit of an episode. I got up at three in the afternoon, cleaned my tattoo, took my meds, took my morphine (to ward off the crippling pelvic pain I have every single day, will have for the foreseeable future), ate breakfast, read a book, couldn’t get dressed, dealt with racing thoughts for a few minutes, crippling anxiety because I am home alone until my husband returns from class at 4:00, cried, took an Ativan, stabbed myself in the arm with a fork because of the intense guilt I was feeling at the time.

This is my “normal.”

My sleep patterns are completely fucked at the moment because I’m working 7–2 (third shift) three days a week. I haven’t weighed myself in months, but the last time I was at the doctor (a week after I started dancing), I’d lost seven pounds. My appetite is, by turns, ravenous and nonexistent.

I’m seeing my psychiatrist on Wednesday morning, provided I can drag myself out of bed at that ungodly hour, and then I will tell him that my meds are not enough, never enough. I have one mg tablets of Ativan and am only supposed to take one to two per day, though I can handle much, much more. 150 of Effexor, which I am not even supposed to take because with bipolar (even type two), antidepressants can make you fucking crazy, and 200 of Lamictal. My moods have been more stable, but my default state is still numb and detached. I don’t often swing to hypomania (well, more than once or twice a day, and even then I don’t want to accept that it’s hypomania—I am just not depressed), though the crippling bouts of intense depression hit so many times each day, I can’t even keep track of them. They range from twenty minutes to several hours in duration, and then I’m back to flat.

I can’t get disability because I am technically still able to work, I am too young, I don’t think my doctors will sign off on it. I’m afraid to ask. I should probably ask at my next appointment, just to see, just to confirm that I’m not sick enough to actually get the help I need to take some time off and focus on recovering.

The thought is profoundly depressing.

Obviously, I’m not doing that well these days, though I’m keeping my shit togetheras they say. What keeps me going is the knowledge that eventually this will break and I won’t have to deal with my rapid-cycle bullshit anymore, that I’ll have some reprieve from all this madness.

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Some of my best friends are pharmaceuticals.

abuse, endometriosis, major depression, medication, rapid-cycle bipolar disorder

I look at the clock. Seven hours left. I count my pills again. Today is the ninth, which means that I have another eighteen days until I can get a refill.

I have 18 oxycodone left and another flare-up is just getting started. This leaves me with one pill per day; unfortunately, I often end up taking two, the maximum dose I’m currently allowed. One pill lasts only a few hours and then the symptoms–the overwhelming, uncontrollable tightness in my lower abdomen, the stabbing pain, the feeling that my ovaries have literally been set aflame–begin to fade back in until they’ve become a deafening roar, preventing me from concentrating and leaving me barely able to move. I cannot focus on conversation when I’m in this state; everything is too loud and I want to scream at everyone to shut up and leave me alone to die in a heap on the floor.

Eighteen days.

I will admit that in the past, I’ve taken opiates for less-than-severe pain flares because my mental state needed a serious boost, and if there’s a drug that’s great for doing that in the short term, it’s oxy. With the pain gone, I become gregarious and upbeat, able to focus and get my work done, to handle–and even enjoy–the company of others. Please note that I am not advocating opiate abuse–it’s ridiculously dangerous and it’s way too easy to build up a tolerance. Also, the damned things are so difficult to get even with a legitimate prescription that it’s hardly worth blowing through your supply in the interest of having a good time.

Since the introduction of lorazepam into my medication stash, I haven’t abused my oxy in the name of keeping my sanity. The benzos flood my system and fill me with a lovely tangible warmth. My lower belly finally relaxes. My hands stop shaking. There are no more tears and the world appears to slow down. My head becomes quiet and I can once again focus without wanting to burst into hysterical crying over a misworded email or the memory of some shameful thing that happened to me fifteen years ago and happened to surface as a matter of coincidence.

In moments of extreme pain when there is no one around to distract me, I sometimes drink heavily. There are other substances too, of course–there always are when you’re self-medicating, an endless stream of chemical friends to fill the long lonely hours. I cannot remember the last 24-hour period where I hadn’t taken anything, but I am still holding down a job, maintaining relationships…I figure I’m okay. It’s a temporary fix, I tell myself, just enough to get me through until the real problem (my chemical imbalance) can be corrected.

These drugs, they keep me safe from myself. They take me from “She’s all messed up” to “This girl is fucked in the head, but she’s still fun to be around, at least.”

I’m switching to a new doctor this month and am somewhat horrified at the prospect that I may not be able to continue my painkillers–until they find a cure, or at least better treatments, for endometriosis, I’m stuck battling this horrible disease with opiates. It’s not ideal by any stretch of the imagination, but it is my only option for now. Two years after my diagnosis, I’ve reached the end of the line. No more options except another surgery, which will help me for another year at most before things return to how they are now. In fact, surgery could actually make things worse.

I know a lot of people think of medication–whether it’s antidepressants or the long-term use of painkillers–as a crutch, as if “mind over matter” could cure all of our ailments. They’re entitled to their opinions, certainly, but for my part, I’m just grateful for modern medicine and the fact that there is something, anything, that can take the pain away, if only for a short while.

Insensitivity.

endometriosis, stigma

There’s been a recent influx in the amount of ignorant and downright insensitive comments made to me about my endometriosis, and I’m not quite sure how to deal with them.

They range from the hopeless (“You know, at some point they won’t be able to do anything more for you and you’ll have to learn to live with the pain flares”) to the uninformed and offensive (“At age 30 or 35, they’ll probably tell you it’s time for a hysterectomy”), and all carry the assumption that I am being irresponsible for not being able to work and unreasonable for wanting more than living life at a daily pain level of 7+.

Even when I try to educate or simply shut the person down by sharing actual facts about this horrible disease, I’m treated like I’m just making excuses or don’t know what the hell I’m talking about because I am young (24). And to be honest, I’m running out of energy to deal with these people, which is unfortunate because 90% of the comments come from relatives. I used to be able to come up with snappy comments to shut the person down before things got out of hand or affected me too deeply, but now all I seem to be able to do is internalize it and watch helplessly as I self-destruct.

What do you do when people just plain don’t want to learn about your affliction and prefer their own misinformation to the hard facts?

It’s true that there may not be a lasting solution for this illness that will allow me to return to work and live pain-free, but I feel that actually saying those things to me is cruel, amirite?

D. finally snapped tonight after watching me struggle to explain the disease for the umpteenth time and said, quite bluntly, “Think of it as cancer without the cancer.” Endometriosis is terribly invasive; it feeds on estrogen and burrows deep into the pelvic organs. It has even been known to grow on other organs, such as the kidneys, lungs, and brain in more severe (and admittedly, rarer) cases. It is incredibly painful, and the level of pain experienced by the sufferer is not always proportional to the disease’s stage. And while the growths are benign, the disease causes a host of other health problems along the way in addition to wreaking emotional havoc on the sufferer and her* loved ones.

Lately, I’ve been feeling a lot worse physically and very hopeless. I can’t even remember the number of times I’ve said, “I don’t want to live this way anymore.” All I can do is hope for a better tomorrow, that I’ll be able to see a pain specialist soon and that he or she will be able to help me come up with a long-term solution for managing the symptoms. My ob/gyn is against operating because my first surgery (a diagnostic laparoscopy performed in March 2011) only gave me about a year and a half pain-free. As it stands, I’m at pre-op levels of pain; I’m just better at functioning while I’m in severe pain because my body has had time to adjust.

It’s frustrating that despite my best efforts to educate, to frankly discuss my personal experiences with a very sensitive, personal illness, people still continue to assume and make hurtful comments. It’s not that I’m thin-skinned; it’s that this disease has exhausted me to the point that I can’t help but take the rudeness and insensitivity to heart.

People exhaust me.

The good that won’t come out.

endometriosis, suicidal ideation

Feelings of worthlessness and guilt are pretty common in major depressive disorder, and I’ve been plagued by them for years. My health issues feed these feelings, so all in all it’s a pretty unpleasant experience when the mental and physical illnesses get together and decide to throw a party in my head.

I was diagnosed with endometriosis when I was 21 years old, after several years of suffering from severe pelvic pain and trying to find a doctor who was willing to take my concerns seriously and perform the exploratory surgery necessary for a diagnosis. Endometriosis is a particularly nasty disease and can be difficult to treat, partly because treatments that previously worked will stop working for no apparent reason. In short, it’s incredibly frustrating and everything from the waist down hurts like a mad bastard most of the time.

I had a huge flare-up in October 2012…and then basically one flare-up every month after that. As a result, I missed a ton of work and eventually just quit my job because I was going to get fired anyway. I’m currently tutoring and am on the active sub list for a couple of schools, which works out well because if I happen to be unable to get out of bed (because of the horrific pain) on a particular day, it’s not like I’ll get fired.

However, we’ve taken a hit financially because I don’t have a steady job. Also, the necessary visits to the ob/gyn can be pretty costly. For example, every time I end up in urgent care because my pain is spiking to about an 11–which is basically the “I am bleeding from the eyes” level–it costs $144, which insurance won’t cover because we haven’t met our ridiculously high deductible yet. This means I end up crying it out on the couch more often than I’d like, but I can’t justify spending that amount of money just to have my vitals taken and be handed a prescription for narcotics.

This disease can have some pretty severe emotional repercussions as well. I feel helpless a lot of time time and hate not being able to leave the house. I feel bad about myself for not being able to do everything I want to accomplish, and I often feel that I’m more of a burden to everyone, emotionally and financially, than I’m worth.

In short, it can be difficult to see myself as more than my illnesses, and that certainly doesn’t help the depression. In fact, it feeds it. With MDD comes a little voice in the back of your head that whispers (or screams, depending on the day), “You’re worthless, you’re a waste of space, life is pointless, just end it.”

My job is to fight that voice as fiercely as I can for as long as possible, but some days, it’s harder than others.