My Bipolar Story: Prelude i
This is the first installment in a series. You can read the second and third here:
My Bipolar Story: Careers, Blazing Successes, Burnouts, Disabilities, & Leeching Off Society
I’ll start this with Prelude i, because I feel like this will likely be a series. I guess we’ll just see where it goes. This is the story of me, living life with bipolar disorder. You may have it. In that case, you will likely be nodding along with some of this as you read. If you don’t have it, I encourage you to throw away whatever you think you know about the illness and read with an open mind. I’m being honest in the hopes that people with mental illnesses are someday considered as you would consider someone with diabetes or lupus. Just average human beings who happen to have chronic illnesses, not <insert weird, scary, freaky, homicidal adjective here>.
(What I really want is for someone to tell me it is actually a superpower!)
Let’s start with today, because it makes more sense to start with where I understand myself to be now, rather than where I thought I was in 1973 (that’s when I was born).
For those of you in the know, I’m most often DSM 5 296.44, but the number after the period changes, based on whether I’m what they classify ‘manic’ or ‘depressed’ or ‘both’ or ‘wtf?’ The unfortunate part is that the ‘psychotic features’ bits are persistent, much like a parasite or clingy boyfriend, no matter what mood state I’m in.
Let me clarify that a bit. When I say ‘mood state’, I am referring to one of the four above. I am not always in a ‘mood state’. When I am on meds that are controlling my symptoms, I am myself, meaning, I am ‘mood state-free’. Notice I refuse to use the word ‘normal’. Fuck that word. I was born with this. Science may say that if not for some trauma or stressor or because I once did some illicit drug, it would not have been activated. Nonetheless…the bipolar has always been in my brain, waiting. We’ll get into how early I was exhibiting symptoms in another post. My teens were not pretty, friends.
Back to the freaky stuff. What’s a ‘psychotic feature’ you may ask? If you Google that term, you’ll get hallucinations, paranoia, and delusions. All are correct. At this point you may be thinking, ‘Ok, such a person is just utterly fucking crazy. That sounds like tinfoil hats and alien probes.’
Sigh.
Yes. And not yes.
(If you remember this when it came out, then congrats! You are old like me.)
I will describe a delusion, along with which hallucinations and paranoia came for a ride, that lasted almost two months. I can only vaguely remember any of this. My husband had to relay a lot of it to me. Some of the ‘memory’ came from looking at my browser history, reading emails, texts, Facebook messages, etc. Memory loss during a mood state is real for some people (raises hand). Sometimes you get it back, and sometimes you don’t. Brain damage is fun! (I’ll let you research this on your own time.) This occurred during a mania throughout which I was not medicated. Following this, we will chat briefly about mood states and drugs, man, drugs. Ok! Back to psychosis…
We were living in New Orleans at the time. I swear, stories like that never turn out well, am I right? Anyway, I somehow became convinced with the passion of a Baptist missionary that my upstairs neighbor was making meth. Go ahead, you should laugh. It’s fairly ridiculous when viewed from afar. That’s what makes it a paranoid delusion, yeah? We lived in a tightly packed ‘hood. If the dude was making meth, everyone else would have known, not just me. Besides, we lived right next to an open-air drug market where people bought crack, and then lit up in their cars before driving off. ‘Twas a very skinny white boy who rode a hipster racing bike upstairs. (I only realized this AFTER the mania was over.) There was no fucking way the guys who ran the market would have let him do that above us. So, there was that.
It started off like this. I hadn’t been sleeping for awhile. At all. Most manias start that way.
Maybe it will be easier for you to understand it if you think about it like this. You know how if you pull an all-nighter you feel kind of loopy the next day? Imagine doing that for weeks on end. But also imagine that your body and your brain never get tired and you continue with a frenzy of activity and the loopy-ness just gets worse. And worse. And worse. Imagine the kind of antics your brain would engage in. That’s probably a good base description of my mania. But everyone with bipolar has a different experience of mania. Mine are generally frenzy of activity, no sleep, psychosis, anger, irritability, will not shut up about whatever deluded/paranoid about, weight loss, lack of personal hygiene. It sounds horrible. And it is. I’ve always been envious of people who get the ‘classic mania.’ That’s the one everyone thinks of and hears about. Exuberant! Happy! Reckless spending! Impulsivity! Lots of sex!
Back to the meth lab…
Ok, so no sleep and I hear weird sounds upstairs. It sounds like bags of marbles being spilled on the floor. It sounds like hoses being dragged across the floor. I hear drills. I hear wood. I’m probably hearing weasels too.
(If you get this reference, we should probably consider being pals.)
At all hours of the day and night. Is he building tree houses? Is he a construction worker? WTF? I smell burned plastic. I smell chemicals. It’s coming from the vents. It’s coming from the bathroom. I’ve searched thousands of websites about how meth labs are made. I’ve chatted with strangers about it. I’ve chatted with friends in earnest who are cops multiple times about it. I posted I have no idea what about it on Facebook. I reported the neighbor to the FBI and ATF. I contacted my landlord. I made my husband ask the neighbors. The neighbors said ‘Yeah, all our places sound like that.’ (There were only maybe 10 units, I think. Tile floors.) I started watching the neighbor, tracking his movements, running outside to watch whenever he went outside. Watching where he went. Watching who went into his place.
My husband told me I wouldn’t shut up about it. He said it was literally all I would talk about. Day and night. At some point, it became easier for him to say ‘Sure, Ok.’ I became enraged if he didn’t agree. It was literally the center of my world. I didn’t eat. I didn’t shower. Why couldn’t everyone else see that THIS was the most important thing happening in the world right now and I was on a mission to fix this?
That’s pretty much what happens in mania. Nothing else matters except for whatever flight of fancy you happen to be on. For the people like me who won the psychosis lottery, we get those kind of things. For others, they get different types of flights of fancy. I imagine things that are more fun. Like maybe liquidating your retirement to start a home for retired dog actors in the south of France. That would be awesome. I mean, until you ran out of money.
So… yeah.
Luckily, I got meds when I did.
Do I think I would have hurt this guy?
No. Not a chance even if I had remained unmedicated. I would have either committed suicide or flamed out into a deep depression and then committed suicide.
That has been my lifelong pattern.
Is this a good argument for why healthcare is a basic human right that should be free and available to everyone?
Abso-fucking-lutely
I didn’t have insurance at the time, because I, obviously, wasn’t working, and we were stuck in the ‘We make too much money to get help on the Exchange, but don’t make enough to afford insurance on the Exchange or through my husband’s employer.’ It sucked. The cheapest plan was $300, and didn’t cover medications for pre-existing conditions.
Hahahaha! Bet you didn’t know that. It’s true. They got that loophole in. ‘Pre-existing conditions' doesn’t apply to medications. So, they will cover your cancer, they just won’t treat it with drugs. Sorry about that.
All that fun was late spring through early fall of 2016.
I’ll just catch you up to May 2017.
Right now, I’m not psychotic in the clinical sense.
Hooray!
Unlike conditions like your brain fog due to toxic stress, Bipolar I cannot be cured with turmeric milk, argan oil, or playing with a fidget spinner while chanting mantras from Deepak Chopra, no matter what you have seen on Dr. Oz, heard from Gwyneth Paltrow, or read from the Rodale Press. I don’t mean to sound bitter, but just like everyone else with a mental illness (and probably other people with chronic and ‘invisible’ illnesses), I am insanely (see what I did there?) tired of hearing bullshit, pop-sci advice on how I can cure myself. It’s almost as if people are accusing me of not trying hard enough to be well. Trust me, anyone with a mental illness who is currently taking meds in order to try to achieve some stability is trying harder to be well than someone trying to take a shit who has had constipation for six years.
Let’s talk a little about meds, and the evil big pharma and psychiatric industrial complex.
I sincerely hope you understand I am being sarcastic. If not for a psychiatrist in Austin who my husband finally, somehow, got me to visit in 2008, you would not be reading these words.
The reason?
Read this next sentence carefully.
I would not have made it to 43.
I would have already died.
I. Would. Be. Dead. Without. Psychiatric. Medication.
I’m not here to push pills on anyone. What I do want to deeply convey to anyone who got shit from parents, family, friends, co-workers, spouses, boyfriends, girlfriends, in-laws, gardeners, pets, etc about taking meds like I did is this:
Medication does not make you weak.
Medication is not the enemy.
Medication does not make you a bad person.
You and your doctor know more than ANYONE ELSE OR THE FUCKING INTERNET.
Don’t be afraid to try medication. Some take time to work. They all work differently on different people. Different combinations maybe required. Different dosages may be required at different times.
Just because one med/dosage/combo doesn’t work, doesn’t mean medication as a concept doesn’t work.
I have been taking psych meds for seven years. It is 2017 and I think I have found a combo that works pretty well for now. I’ll do another post (maybe) devoted entirely to the wonderful world of meds!
My current med regime is this. I take 800mg of Seroquel, 400mg of Topamax, maybe 0–30mg of Valium (depending on what kind of day it is), maybe 0–2 puffs from a CBD vape (also depending on what kind of day it is), and perhaps 0-30mg of Temazepam at night (if I find myself going for days on end not sleeping but I feel like I’ve still had 18 cups of coffee!!!!!)
The side effects you read about? Well, yes and no. Almost all of them wear off. You might have a dry mouth for the first week. Or tingly feet. Or red eyes. Or one heavy period. Or lose a clump of hair. Or can’t walk in a straight line. Or forget what words mean. Or soda loses its carbonation (Yes, I’m serious.)
The first time I started taking Seroquel (I’ve started that one I think five times now. Bipolar people going off meds on their own is a thing, but we should talk about that later.), for the first week every time I got out of bed I would immediately fall down. That went away and never happened again. The thing is, pharma companies are required to report everything. If one person said his toe itched for two days while taking the med, it goes on the list of side effects. I’m not here to push meds. Some side effects persist. And some of them are not nice.
One horrible side effect of Seroquel that doesn’t go away for me is constipation and a nearly uncontrollable desire to mainline sugar. With Topamax, it is lack of appetite, overheating (This is the worst side effect. I’m like an old person in the summer.), the need to now consume 2 liters of water a day, and a no longer full mane of hair. The Topamax definitely has stronger side effects than the Seroquel. I no longer have a desire to mainline sugar. But, the two of them together do a pretty good job at quelling the racing thoughts, keeping the mania at bay (for the most part), and warding off any depression.
You may be asking yourself, why did I need to know what you take, how much, and what your gross side effects are? Because for people with mental illnesses, these meds are a blessing and a curse. They don’t cure. Hell, they don’t even put you into a remission. You still have the illness. There is no such thing as being declared ‘in remission from bipolar.’ If anyone tells you that, they are full of shit. The person may not be currently experiencing a ‘mood state.’ So, let’s be very clear with our terms here. The person is not in remission. They still have as much bipolar as they did before.
Sorry, that tangent is done. Back to what meds do.
Meds just help control the symptoms. On meds, I will still have mood states. I still do have mood states. The hope is that the mood states will be less frequent and less severe.
I will still need to go up and down on dosages. I will still need to change meds. I have tried almost every psych med they make (well atypical antipsychotics, hypnotics, and what they kindly call ‘mood stabilizers’ aka anticonvulsants), with the exception of antidepressants. Why, you ask? Well, antidepressants instantly, as in within 2–3 days, make me VERY HYPER. I’ve been told psychiatrists use that as an ‘Oh, shit’ diagnostic tool. Human brains are weird.
If after reading my long screed about psychiatric medication, you are angry because you feel these meds are bad for people, please read just a little further…
If you don’t have a mental illness, but you know someone who does, or you are judgmental about medication, please read the following, and really try to consider it.
I take an enormous amount of medication. I take what is needed to control my symptoms. Trust me, I wouldn’t take these if I didn’t have to in order to avoid dying. I already have a medication phobia. You can ask my husband. Every time a script is refilled and the generic may be from a different manufacturer, there is suspicion, there are tears, there are fights, there is anxiety. It took years to get me to agree to stay on meds in the first place. He has to REMIND me to take the Valium and CBD. I won’t take it until I am so anxious and there are so many racing thoughts that I am literally pacing like a caged animal.
I will say this again. There might be some sort of ‘hillbilly heroin’ epidemic going on in our nation, but nobody with a mental illness takes these pills for fun.
Nobody.
So please, don’t try to convince people to go off their meds, or that they are taking too many meds, or that they are taking the wrong meds, or that they need to listen to Dr. Oz, or Deepak Chopra, or goop.com instead.
They are fighting a battle you know very little about. They and their psychiatrists know best. Psych meds are trial and error. But, they are what we have right now, and for most people, they work pretty damn well.
So, this is just one woman’s introduction to living with bipolar disorder, and I guess some sort of prelude to what is going to be my story to how I got to year 43.
More to come… Maybe. Probably. Because if I’m anything, it’s predictably unpredictable.
