This is a guest post by Grace Lyons.
I have been on psychiatric medication since 1997, and medication for bipolar since 2002. Since 2002, I have been on heavy sedatives because without them, I tend to be constantly in what is called – a mixed state. This is hell on earth where you experience mania, and depression simultaneously. My best description of this is to imagine sitting in the middle of Times Square. There are blinking billboards, crowds, noise, yelling, cars honking, action everywhere you turn, and it doesn’t matter that you are crying or sad. At the same time, you are also wildly agitated, and caught up in all the stimulation which makes you feel slightly funny. Music plays in your head on a constant loop as if you are near a street player who knows only a few phrases of two different songs.
The people shouting, and cars honking become part of the mass of racing thoughts filling your head. You are extremely happy, and sad at the same time while you battle to control these emotions, however, it’s hard to control what you are feeling.
The sedating medications have never taken this completely away for me, but when they work, they have slowed it down to a speed I can process. I might be uncomfortable but I can tell you what’s going on, and it is more like the annual art festival in my small town than Times Square. It’s not calm, but it is manageable.
Since 2007, the main sedative I have taken has been the anti-psychotic, Quetiapine (Seroquel). I’ve done well on it.
It has kept my mixed episodes pretty consistent with the occasional increase which require a dosage change (higher). As discussed in my last post, I struggle with treatment resistance, and medications do not work very well for me much of the time. Because quetiapine has worked, I have stayed on it, and the dosage has increased over the months. It went past the usual FDA-approved amount of 800 mg years ago, which my psychiatrist was completely comfortable with, and about 2 years ago I had to increase to 1200 mg which helped for about a year. Sadly, it’s just not working anymore, and I am feeling the effects of an ineffective medication heavily.
The last year has been very difficult.
I have been in a constant episode with only a few days that I’ve felt slightly better which has been scattered throughout the year. I’ve alternated mixed episodes with severe depression. An attempt at a new medication failed because I had a rare side-effect, and I wound up in the hospital to get everything straightened out. I left the hospital on the same medication I was on when this mess started.
Despite trying hard to change this, I’m still on the same mix 5 months later.
I have now been waiting for over a month to be hospitalized for a dramatic medication change. My bag has been packed and waiting. I’m ready, however I feel as though the hospital is not!
I’ve been through almost all the drug options, and am left with one choice. Its’ name is Clozapine (Clozaril), and it is considered the drug of last resort. It is often very effective for people who don’t respond well to other medication, but it comes with a potential to lower the immune system to a point that fatal infections can happen. Therefore, to be on the drug, you have to meet strict blood test guidelines. It is recommended only for people who have not responded to other medications (I fall into this category). I have reached the point that Clozapine is my best hope, however before I can start it, I have to be off of Quetiapine for a few weeks because this can cause a serious cardiac interaction. Until this change can be completed, I will continue to live in Times Square, crying and laughing inappropriately through the day, and not sleeping throughout the night.
I go to a very large hospital to see my psychiatrist. The hospital has a number of psychiatric units, and a few other branches have a psych unit. I’ve always gone to a small unit at the main psych facility (I’ve had 4 prior admissions for med adjustments or suicidal plans/intentions). The doctor who headed this unit resigned several months ago, and has not yet been replaced because there’s a severe shortage of psychiatrists in the United States right now. Therefore,
The doctors on the other four units have greater burdens as they share coverage of that unit. It turns out they are so busy that just reading my charts has been difficult. My psychiatrist needs someone at the hospital to read my charts, and agree to accept me as a patient before I can be admitted because what I’m going through is NOT considered a normal admission. It requires a specific plan of action, and I need to be really ill before they’ll be able to start a course of treatment, or diagnose what has changed with me in recent months. At the same time, my psychiatrist is also sharing the weight of an unfilled position, and so she has less time to try to advocate for me.
For now, I am under-medicated, very ill, and waiting just to be admitted into a hospital. During this wait, I can only hold on to the hope that this time the psychiatrist will be able to find a mix of medication which will “finally” help stabilize my mood swings. I tend to be an anxious person anyway, and this wait is definitely testing my ability to NOT panic, however it’s truly been a struggle. At this point, I seem to function at three levels.
First, and most common, is my alone mode. In this mode, I am not trying to cover anything up. I laugh inappropriately, frequently, and I cry over things which are not sad. Even brushing my teeth is a huge chore. I spend a lot of time in bed, and don’t sleep much either. I’m exhausted from insomnia because of the agitation, and paralyzed by depression so I compromise by looking at the walls. Sometimes, I’ll watch YouTube or play solitaire. That’s pretty much it. I can do little else because I feel my life is very small.
In the second mode, I am with my mom who lives next door, and who I see daily. With her, I try to cover up things, but know that she still sees the tears in my eyes. She knows I’m crying for NO reason, and she especially notices my laughter at things that are not funny. The remainder of the time, I’m in the third mode.
In this mode, I try to hide as much of this as I can. I do this if I’m in public which I try and avoid as much as possible. I do it with my therapist because it is too hard to let my guard down. It feels intensely vulnerable to let someone see what feels so out of control in my mind, and so I try to avoid it. I know that, ideally, I would not do this but as I told my psychiatrist –
“I feel “crazed”, and am not quite ready to share what I feel like with the world”.
I also can’t let go of my control; I am afraid if I do that I will not get it back. I constantly wish I weren’t alive or that some accident would end my life today. I sometimes impulsively want to hurt myself, but that passes, and I don’t. My therapist is aware of this, and we both hope it doesn’t get worse. I just have to keep talking about it with him!
Mostly, I’m just completely overwhelmed by everything in my head, and feel like I need to keep very little else from entering into my brain. I desperately wish for a break from my own thoughts.
It feels very unfair that I am having to go through this. I try to never say this because I know life isn’t fair, however no one deserves the bad things in their lives. At this point though, I have been very sick for over a year, and waiting for treatment to help while dealing with medications which won’t work. All this in an unusually bad situation, and it simply isn’t fair.
It’s been 7 months since a change was made in my medication which was supposed to change things around for me. However, when I had potentially bad side effects like my mouth was in a constant chewing motion, and my tongue darted in and out like a snake, we all knew it was time to stop the meds. My patience is wearing thin. I just hold on to the hope that if I keep waiting, something positive will happen. I also know soon I’ll get into some hospital where someone will fix this mess. Hopefully, it is this week but if it isn’t, I will continue to fight until next week or for as long as I can.
Bipolar has led me through many experiences I would not have had otherwise. Some have been positive; many have been negative. This experience of being less than optimal for months at a time will forever remain a reminder of how hard this illness can be when it’s not controlled. I hope this is also a reminder of how strong I am, and of what I can endure.