Tuesday, September 15, 2015

We need to talk more about mental health, and it starts with me

September is National Suicide Prevention Month, and it really comes at an important time for me this year. Over the past few months I have really taken control of my mental health, and I am in a really great place. Probably in a better place than I have been in years, if ever. While it feels amazing, it is also a little bit scary, because the happiness I feel right now, the solidity, purpose, and hope I'm currently experiencing, is so deeply contrasted against the dismay I was feeling only a few months ago. It's like when your eyes adjust to the darkness... You think you are seeing okay until someone flips on the light and you realize how wrong everything was.

This isn't a recent struggle for me. I started exhibiting symptoms of my depression around 15 years old. My parents chalked a lot of it up to my being moody, mostly writing it off as typical teenage antics. I'm not exactly sure when it became something more than that, but my mom whisked me off to the psychiatrist, who put me on a low dose antidepressant. That worked for several years. I certainly still had bad days, but all in all things were well managed with 10mg of prozac every day. A small price to pay for sanity during my teenage years, when I look back on it. But I certainly felt embarrassed by it. There were definitely people making me feel that way. Suggestions swirled around me, making me feel incompetent. Why couldn't I just suck it up? Everyone has bad days. Why was I being so dramatic? Didn't I feel like I was getting enough attention? All of those things ate at me slowly, like an acid, burning me layer by layer.

I recall very clearly the first time I thought about committing suicide. It was New Year's Eve. 2005. I was 17 and we were in Orlando, Florida. We had taken a family trip to Disney World. Maybe that's why I remember it so clearly, the stark contrast between the most magical place on earth and my feelings of unending hopelessness. I was in a hotel room with my brothers, my parents were in a room next door with my sisters. I was feeling incredibly low. I had no energy and the stress of pretending I did was beginning to crush me. My dad had just finished scolding me. In his mind the reason I was so mopey was because I was missing my boyfriend. Again, it was being chalked up to teenage angst. In his defense, I'm not sure I could have identified it as anything else on my own either. I was taking my medication as prescribed, so surely that was enough to render me "un-depressed." But I didn't feel that way. I felt alone. I felt hopeless and hated and angry. I kept looking around the room, trying to determine exactly what I could do about it. I remember unpacking bottles of tylenol and benedryl and wondering just how many I would have to take to fix this problem. I'm not sure why I didn't. I don't really remember that part of it clearly. A few days later we went back home and everything went back to normal.

During my senior year of high school I opted to increase my medication to 20mg. Stress seemed to be hitting me harder, and I felt like I needed more help. A simple increase was enough to fend off the anxiety and sadness and I was glad for the little bit of help. I was headed off to college, I had broken up with my boyfriend, and I was feeling like a new woman. I think the end of my senior year and the summer after were really happy times for me.

I moved away to college, and I think that's when my mental health started its down hill trajectory. I didn't take care of myself. I was inconsistent at best with my medication. I was stressed out and chose to fix that by burying myself in my studies. I began to self-harm again when I became particularly stressed out. I would have complete breakdowns at least every two months, where I would sob for hours, sleep for about 13 hours, drag myself to class looking like a mess, then begin the process over again. But I convinced myself that I had it under control. I knew myself and I knew my limits, so clearly I was managing. Upon my graduation, I visited my doctor and proudly declared that I did not need my medication because I had it handled.

About a month later I was pregnant with Nathan. Halfway through my pregnancy I realized that I was not fine and I needed help. I was angry all of the time, I was having complete meltdowns about simple things, far past normal pregnant mood swings. I remember one night, laying curled up in a ball in the middle of the living room, completely unable to move or speak, just sobbing. During one of my routine appointments I brought it up with my doctor and she put me back on my 20mg of Prozac. There was some risk to the child, she explained, but certainly in my case it was less than the risk I was posing to myself. She also explained that my history of depression put me at increased risk of postpartum depression.

You see your doctor once after you have a baby, 6 weeks after you are released from the hospital. That is the extent of the the care that is required. During that appointment, you are screened for postpartum depression using what is called the Edinbugh Post Natal Depression Scale. It includes statements like "I have blamed myself unnecessarily when things went wrong" and "I have been anxious or worried for no good reason," which then are rated and scored to test for depression. I'm sure that the screening means well. But I find it sort of silly. When I am deep in the throes of depression, I don't feel like I'm blaming myself unnecessarily. It seems completely reasonable. In addition, six weeks postpartum is incredibly early to diagnose depression. I know very few people who felt it set in that quickly. Mine hit at about 4 months postpartum. I don't fully even remember how I knew, but I remember talking to Dan and saying "I need to do something." I had been dealing with it long enough to know the signs, and I was headed down the wrong path. A visit with my doctor, and another increase in meds. 40mg of Prozac daily, and I was doing fine.

I continued that way through my next pregnancy. Again, I passed my postnatal exam with flying colors. This baby was much easier. She slept better, she was an expert at breastfeeding, she was growing and happy and perfect. I was nailing the mom thing. I had two kids, but my house was clean, I was working, and my marriage was great.

And just then just like that it wasn't. I started feeling agitated. I wasn't sleeping. Then I was sleeping all the time. I stopped showering. I got up, nursed the baby, then went back to bed. I didn't feel like doing anything. Another trip to the doctor. She explained that pregnancy had changed my body, and perhaps I was no longer responding to the medication as I had in the past. She switched me to a low dose of Zoloft, and asked to see me in a month.

Over the course of the next two years, I was in to see my doctor almost every month. I was having panic attacks. I had migraines. I was crying. I was angry. I was falling apart. I don't think I can count how many times I contemplated suicide. I was losing myself slowly to this dark monster, and despite my best efforts, I saw no end to it. I was doing everything I was supposed to, but I couldn't gain control. And that was the scariest part. I was taking my medication. I was talking to my doctor about my concerns. But I wasn't getting better. We kept increasing my medication, trying to find the right balance to treat both my ongoing depression and my newly realized anxiety. I was fighting tooth and nail to keep my head above water, but lying to everyone around me about just how bad it was.

I was self medicating when I could. I had been given hydrocodone to treat my migraines since I was still nursing and nothing else was really safe. I began making up excuses to take it, suggesting that my back was really bothering me, or my sciatica was particularly bad. I just wanted to be numb for a little bit. I couldn't find a way to be happy, but at least I could stop hurting. Certainly I knew it wasn't right. But I wasn't getting relief any other way. I was doing the things my doctor told me to do, but I wasn't getting better. I was looking for anything to make it okay. My thoughts were constantly turning to ways to fix this deep, dark smoke that was billowing up around me. I contemplated suicide over and over again. The one thread that was holding me to reality was my baby. I kept telling myself that if I died, if I took my own life, she wouldn't be able to eat. Simply put, I couldn't kill myself because I didn't have enough breast milk stored up in the freezer.

I continued not to sleep for ages. I would get a few hours, then wake up in cold sweat with my mind racing. I couldn't fall back to sleep. I was constantly on edge. I was having panic attacks nearly daily. A year into my official treatment for this problem and I still wasn't getting better. Eventually Eleanor stopped nursing. She was about a year and a half at that point. I was able to start taking something to combat the anxiety, an immediate release medication to calm me during panic attacks. I was given 0.5mg of Ativan, along with my Zoloft, which was up to 75mg at that point.

Since I was no longer nursing, I could start drinking again. Not heavily, but certainly more frequently. I would have a drink every night after the kids went to bed. Anything to calm my nerves and slow things down. During this time everything came crashing down. My job situation fell apart due to company wide changes. I had to reapply and re-interview for a position that I had held for 9 years. They were insisting that everyone start working full time. I knew that we couldn't afford the daycare for that, and quite frankly, I knew that I couldn't handle that. I spiraled even deeper. At one point I met with my doctor and tried to explain things as best I could. One of the standard questions they ask about depression is "Do you think things will get better?" I was adamant that they wouldn't. Sure, we might find a treatment that keeps this black monster at bay. But for how long? This wasn't a rain cloud, some external force ruining my day. This thing was inside of me. It had always been there. It would always be there. Certainly I could fight it down, lock it in a cave for some unknown period of time. But it would always be there.

Finally, we tried a new medication, immediately titrating up to a higher dose. If you are keeping track, this would mark the sixth medication change since Eleanor's birth, just under two years of fighting. And that was what it was-fighting. Every step of the way. Fighting to get myself out of bed. Fighting to get dressed. Fighting to take care of my family. Fighting to get to work. Fighting to keep my job. Fighting for my life. It was exhausting. And that is really the thing about mental health- it takes everything to function an even a basic level, much less advocating for yourself, which is what is really needed for quality treatment in most cases. If I hadn't been aware of myself and how I behave when my depression worsens, what symptoms really manifest, it could have been much worse. I was doing everything I was supposed to, following up with my doctor, taking my prescribed medication, all of it. And I was still struggling. How can we expect people around us who are suffering to just be okay?

We eventually found the right dose and medication. I take 20mg of Lexapro daily. It keeps me sane. When I'm off of medication I'm very insistant that I don't need it, that I shouldn't have to take a pill every day to feel normal, that maybe-just maybe- unmedicated me is the real version of me. But when I'm back on the medication I realize that one pill a day is a small price to pay to feel like a whole person.

I'm doing much better now. In November of last year I began the process of getting an ADHD diagnosis. This involved more fighting for myself- weeks of phone calls to different offices, being told they weren't taking new patients, being told that I had been added to a wait list only to find out that I hadn't, requesting to get medication in the mean time until a diagnosis could be provided. In all it took about two months of phone calls to get an appointment scheduled, then another four months of waiting to get in, and a full month of appointments (one appointment per week for four weeks) to get a diagnosis. I got my official diagnosis in June. I am still working with a psychiatrist to adjust my medication to adequate levels, but I'm doing much better. I always thought I would turn down medication even if I did get a diagnosis, but I'm glad that I decided to accept the help being offered. This process alone has been life changing. I've learned that a lot of the behaviors that I've really been hard on myself about are part of my disease. I'm learning to deal with that. Moreover, I'm just learning to be gentle with myself. I know that sometimes I just need to take care of me.

But there are certainly some sad realizations to come out of this. First, the realization that I will probably never be rid of this creeping black smoke. It will always reside somewhere inside of me. It is still deeply upsetting to me to think about that part of it. The thought that this will be a constant, lifelong struggle for me is very disheartening. In truth, it is the nexus of everything I feel when I am in that deep dark place. When the voice inside of my head is telling me that things will never get better, I know there is some small kernel of truth to it. I'm certainly not saying it won't get better at all. I can control my symptoms. I can live a fairly healthy, happy life. But I will never be cured. 

The second realization is that my family has likely grown as far as it ever will. I grew up in a big family. While there were many things I didn't like about being the oldest of five kids, I certainly could understand why someone would want a big family. When Dan and I discussed how many children we wanted I always envisioned two as my very lowest limit. Life is a funny thing that way. The universe cares very little for our grand plans. I love being a mom. It makes me insanely happy. It feels right. I love watching my children grow, I love helping to shape them. I love watching them become loving, empathetic beings who will do great things. It makes me sad to think that I won't feel a baby move inside me again, or feel a tiny being snuggled up to me in the middle of the night while I nurse. It's a very difficult thing to say that I, at only 26 years old, will not have any more children. In the end, however, I have a difficult choice to make. I have two beautiful, healthy, happy children who deserve everything I can give them. They deserve me at my best. I could have another baby. My body is capable. In doing that, though, I risk that baby, and my children now, not having a mother. I have spoken to my doctor about this. Research shows that if you have postpartum depression after your first child you are even more likely to have it after a second child. It does not seem that there is a lot of research on what happens beyond that. Would it necessarily be worse with a subsequent pregnancy? No one can really answer that for me. Only I can answer for what I am willing to risk. I don't think I could repeat the events of the previous two years. I certainly couldn't handle anything more than that. In addition, the medications that I am taking now to manage my symptoms are not safe for pregnancy, meaning I would have to forgo them completely or turn to an alternative, which is a very risky process. Being on the wrong medication or even the wrong dose can be worse than being on nothing at all. 

In the past few months, mostly since I have begun to really take hold of my life and feel like myself again, I have started to be more and more open with people about my struggle. As a woman, I am frequently asked about my plans for future children. I am very open with people. I think that often it makes them slightly uncomfortable. We live in a world where talking about mental health is taboo. But it shouldn't be. More importantly, it can't be. People are struggling. Life seems overwhelming and hopeless because of this disease. When we refuse to speak about it we are only furthering the loneliness and helplessness that people are already feeling. We are telling them that we don't care or that they need to deal with it on their own. It isn't right. We are losing people we care about because we are uncomfortable. 

This starts with our doctors. Medical professionals need to talk openly and honestly with people about mental health. I remember taking Nathan to one of his well child appointments. The doctor looked him over, measured and listened. Then, he turned to me and asked very clearly and openly if I was doing alright. I was surprised. Nathan sees a family practice physician, so he is able to treat adults and children, but he isn't my primary care doctor. He must have sensed my confusion because he went on to explain that his job was to take care of my child. Part of taking care of Nathan meant making sure that I was doing okay too, because if I wasn't taking care of myself, if I wasn't thriving, there was no way Nate would thrive. It really struck me, and continues to stick with me. Like I said before, the only visit I was really required to go to was my six week postpartum visit and my depression hadn't set in yet at that point; but I was taking my baby to the doctor every few months for check ups. It made perfect sense that the doctor would make sure I was doing okay then too. I honestly wish that more doctors would do this. I know many people take their children to see pediatricians, so perhaps treating mothers isn't in their wheelhouse, but a few simple questions could really save a life. It would be so simple for a doctor to suggest that the mother get herself checked out too. In those early days of caring for a child the doctor's word is so important. 

We also need to be talking to each other. In coming clean about my struggle I have gotten so many responses of "I had not idea you were going through all of that!" and "I knew something was up but I didn't want to say anything." Please say something! I wish more people had. I probably would have broken down, sobbed uncontrollably, making you terribly uncomfortable. But I needed people to acknowledge that I wasn't going crazy. During that time I felt like I was slowly losing my mind and I was trying desperately to hold on. I felt like I was the only one who had ever felt that way. I wanted just one person to say "I know how you feel." It would have meant the world. No, it would not have taken the place of quality medical care, of medication, of exercise, of therapy. But it would have helped. Certainly some people did say something, but for everyone that did, there were others that visibly cringed when I tried to bring up my anxiety or depression. 

I'm moving forward in my journey. I hope that things never feel that dark again. I'm taking steps to make sure that they don't. Part of that involves talking openly and honestly about the realities of my own mental health. It means discussing and realizing my own limitations. It means having a plan. I currently see a psychiatrist every few months to manage my medication. I will continue seeing her until I am on a steady, therapeutic dose of my ADHD medication. I also see my primary care doctor every three months for medication checks. I exercise at least a few times a week (I would like it to be more but the reality of life with two children and a job that requires an hour of driving each way gets in the way). I keep open lines of communication with my family about where I am at with my mental health. I am also looking into establishing a Power of Attorney for mental health. Much like any other POA document, it would grant someone guardianship in the event that I would be rendered unable to care for myself. I hope that it wouldn't be something I need, but it might. When I look back on the past two years I realize that there are plenty of red flags, many times that I probably should have been put in a hospital but I was stubborn and refused help that was offered to me, or lied to make my problems seem less severe because I knew that being inpatient probably was the best thing but I was scared. For someone like me it is very important to make preparations while I am healthy because when I am in that deep dark place I know that I cannot think clearly. 

There is hope for the future, but the reality is that it is a long and arduous journey. I'm just glad to have made it this far. 

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