On My Experiences With Our Screwed Up Mental Health System

This is not a jovial or lighthearted post. This is a venting post. I may even venture into ranting territory. I would like to apologize in advance for doing all of the complaining and none of the problem solving. I recognize that that can be non-productive. But I’ve got some issues with our mental health system which have been festering for months, now, and I really just need to give voice to my lived experiences. That said, should any readers have thoughts or suggestions to improve my current situation (or, what I’m sure, is the current situation of many more like me), please share them! And if anyone knows of any resources which may be helpful, send them my way and I’ll be sure to link them so that, hopefully, others in similar situations will be able to find some useful tools here. I’m feeling pretty out of options at the moment, myself.

I’ve been struggling to come up with an adequate metaphor for our mental health support system, and I still am. I can label it – consistently inconsistent, frustrating, slow, over-complicated, etc. But a really good metaphor? Maybe a maze. Yeah. A crazy-house-mirror-maze. Only the mirrors are shattered in some areas, so you’re gingerly tiptoeing on broken glass, trying to make your way out without getting lost or injured; trying to walk the line between self-advocacy and being perceived as “overly-demanding/rude/aggressive” (because these are “behaviors” which will get you put on hold, disconnected, or asked to “calm down” in a condescending, but slightly foreboding tone that promises you’ll be in trouble if you continue to “overreact” to the situation).

If you know me, you know that I’m all about being polite and patient. Sometimes to a fault. You also know that I know many case managers personally and professionally. I am currently one semester shy of my Bachelors in Social Work. I was literally studying to become a case manager. I’ve also been on the receiving end of “self-advocating clients” who were, truly, being belligerent and unreasonable more than one time. So, I am not speaking broadly about all case managers in this post. I have also carefully considered the facts of the situation and believe that my current frustration, anxiety, and general agitation are justified and valid, which is why I am sharing my thoughts and experiences with you now.

I have absolutely no desire to be disrespectful, or to make what is already an immensely difficult job harder by being a “problem client.” But I have, over the course of 5 months, been put through the wringer on several levels, and, as the Cold War Kids said, “Hang me out to dry, you’ve wrang me out too, too, too many times”.

I am currently diagnosed with Post Traumatic Stress Disorder (PTSD) and Bipolar Affective Disorder (BPAD). I take medications to manage both diagnoses, and, in a perfect world, I would also be having sessions with a regular therapist once or twice weekly for further stabilization and management of my symptoms. But this is not a perfect world.

Here are the facts of the past five months of my life and my interactions with my primary doctor, the PHP and IOP programs I attended, the State of Vermont, and the crisis case manager I’ve been seeing at a local mental health organization until my insurance kicks in:

  • In early November, my life circumstances changed drastically, resulting in me living truly abuse free for the first time in…well… ever. And I was essentially hit in the face with 28 years of trauma and abuse. I developed severe PTSD symptoms.
  • In Mid-November, I did not sleep for 10 days straight. I did not eat. I lost 12 pounds in those 10 days. I was wired. I was having flashbacks and dissociative episodes like it was my job. I was depressed, but it was agitated depression. I could not sit still. I could not focus. I was making reckless and unhealthy choices. I was a complete and utter wreck. I went to Urgent Care on day 5 of no sleep, which happened to be a Friday. The PA I saw there was wonderful. She called the local mental health organization and was told by their crisis response that I’d be able to see the psychiatrist on Monday. She gave me a small RX of Lorazepam to help me sleep. Even with the Benzo, I did not sleep. I was doped up, but I was still wired and jittery.
  • Monday came. I was told I did not have an appointment with the psychiatrist, but the referral was in. All they could do for me was get me in to see a crisis counselor. The extent of the crisis counselor’s advice? “I get insomnia sometimes, too, and I count backward from 100 to sleep.” (I think I showed immense restraint in not yelling at her.)
  • I went back to Urgent Care that night. They told me if the Lorazepam wasn’t allowing me to sleep, there was nothing else they could do. They established an appointment with my PCP for mid-week.
  • I finally crashed on Wednesday night and slept. I crashed hard. I became very depressed, very low energy. This depression continued for a month. 
  • My PCP started me on a very low dose of Zoloft, and made another referral to the same psychiatrist.
  • I’ve been trying to get in to see this psychiatrist for 5 months, and I’m told it’s pretty much the only option available to me as psychiatrists in Vermont are difficult to come by.
  • Waiting on referrals, going to appointments only to be told I needed to wait longer, having my PCP assure me the referral was in and active while the mental health agency insisted it was not – these were all major contributing factors to me spending a week at inpatient.
  • After discharge from the inpatient unit, I spent the next month and a half in PHP and IOP. The case managers there promised me, up and down, that there was no way in hell they’d discharge me without adequate aftercare established, including therapy and psychiatry. Not only was I discharged without those appointments established, I was also discharged with no insurance and no means to maintain my medications.  
  • We only discovered that my insurance had lapsed on my second to last day of IOP. That was a Friday. I applied online for State insurance first thing Saturday morning. I called on Monday. I set up an appointment with Community Action to try to help get my application expedited. I tried so hard to be on top of my game and not be discouraged. The person I spoke to at Community Action, whose entire job is literally to help people get State Insurance, told me over the phone, “You’d be better off calling them directly. But have a book. And a phone that won’t run out of charge, because you’ll be on hold for a long time. I can’t see you in person until Friday, but I’ll set that appointment and if you don’t come, honestly, I’ll just be happy to get a break.” Verbatim. To me. Over the phone. I get burn-out, but how far past “done” do you need to be to say that to someone calling you for help? 
  • I called the State people, and I’m very pleased to report that that phone call was not nearly the hell the Community Action person made it sound like. I only read three sentences of my book before a real person answered. That real person, though, told me I was looking at an up to 30 day wait. Running out of medications with no money to get the final refills, no appointment to get further refills written, no therapy appointments set up, and nothing with the psychiatrist, either.
  • All of the back and forth and the apparent inability to communicate among my primary care doctor, the physician’s assistant I saw at Urgent Care, and the mental health agency for a referral to psychiatric services ended up costing me my career (and with it, my health insurance, which is creating the current stressors I’m facing) and my schooling, because, let’s be honest here:  if I had just been able to see someone back when all of this started, the more intensive interventions would have very likely been unnecessary and I would probably be writing this blog in my spare time between work and homework and mom-ing. (Ok, really, I probably wouldn’t have time for this blog. So, maybe that’s the silver lining.)
  • Today, the crisis coordination case manager I’ve been seeing in the interim until I can get established insurance and regular therapy sessions calmly told me I’m in serious jeopardy of not being able to maintain my medication routine until insurance kicks in, because of the out of pocket cost and because my primary doctor is unwilling to fill the types of psychiatric ‘scripts one needs to manage BPAD. In addition, insurance and all that aside, I can’t even get on the calendar to meet with the psychiatrist until I’ve met with my PCP and received a referral. A referral to the psychiatrist. You know, the very same referral that has, according to my PCP, been sent no less than three times already.
  • Today, I mentioned to my interim crisis case manager my concern that there may be a mixed-state episode in my near future based on what that’s looked like in the past (those 10 days without sleep, et. al.) and some current symptoms I’m experiencing: Screenshot_20170313-192328She responded by asking, “How did you even get a Bipolar diagnosis? That’s not Bipolar. I’ve worked with a lot of people with Bipolar and what you’re explaining isn’t Bipolar.” (How did I get diagnosed? By sitting down with a fucking psychiatrist and telling her exactly what I’m telling you, that’s how!)    
  • This interim counselor is not aware of this fact, but it took me a solid three weeks to even accept the Bipolar diagnosis. I was very resistant to it at first and did my fair share of pushing back against it before actually accepting the fact that the psychiatrist I was seeing through the PHP knew what she was talking about and was there to help me get well and stay well. So hearing the case manager (who, by the way, is NOT an MD and has spent a grand total of 75 minutes face-to-face time with me in the last 2 weeks) not only question the diagnosis, but essentially state flat out that I do not have BPAD was not only infuriating, but also incredibly invalidating of all of the work I’ve been doing toward accepting and attempting to manage the diagnosis.

But I can’t say that. I can’t say any of it. I have to hold it back, because if I start to say these things, I’ll likely end up yelling them at this point and getting myself in trouble. Because when you’re meeting with or talking to these particular caseworkers, you’re not allowed to be upset. “Upset” is for Therapists. “Medication concerns” are for Psychiatrists. “Referral requests” are for Primary Doctors. Polite acceptance, it seems, is all the Case Managers with whom I’ve been working have room for. And I am so far beyond “polite acceptance”. I am frustrated. I am angry. I am saddened by the stated of things.

You’ve heard of jumping through hoops? I’m bouncing around among five different agencies/offices and perpetually being told to talk to someone at one of the other phone numbers. It’s like a line of people holding the hoops through which I must jump, but every time I jump through one, the fucking person holding that hoop just moves to the back of the line and waits for me to jump through again.

It feels, in many ways, like this system is designed to allow people to fall through the cracks. If I wasn’t a stubborn, persistent, determined, sometimes pain-in-the-ass person, I would have completely given up on this by now. As I write this, I am discouraged, yes. But I am also genuinely scared. I’m scared that I’m going to have to taper off the medications which are still not even at full theraputic value in my system yet. I’m scared about all of this waiting leading to a destabilization and possibly another hospitalization for me. I’m scared of the implications of all of this. I see the “cracks” for what they actually are: gaping holes. And I’m terrified of the fall.

And, to end, I’d like to acknowledge a few things about privilege. In some ways, yes, I am in a position of disadvantage in our society: I am a woman, I am currently a single mother with no income, I’m an abuse survivor, and I have substantial mental health diagnoses.

But, in many other ways, I am very privileged. I am white. I am a Natural Born U.S. Citizen. English is my primary (and only) language. I am perceived as a cis-gendered, straight person. I am educated. I have access the internet. I am literate. I have some knowledge of and familiarity with the system which I am attempting to navigate. I have a steady work history. I have a car and a license. Despite being unemployed, I am not at risk of homelessness. I have family and friends supporting me in many different ways.

All of these factors place me at a great advantage over others who are attempting to gain support and services through this same system, and if I’m having so much difficulty with it, please take a moment to consider how hard it must be for those who do not possess the same privileges.

Our system is broken. And with the current administration’s plans for the future state of health care in this country, it is at risk of becoming irreparable. We need to fix it. We need to fix it before it’s too late.

On Loopholes, Jumping Through Hoops, and Silly Holidays.

In which Sheila returns to the use of footnotes in hopes of being perceived as somewhat funny. 

Ok, here’s the situation*: Vermont is a silly place. I say that with the utmost respect for the Green Mountain State. I’ve lived here most of my life, and, if you’re not from Vermont, it really is as amazing as Bernie Sanders said.**  One of the really amazing things Vermont does is declare “Town Meeting Day” a holiday so that everyone*** can go to their respective Town Meetings and vote on things like school budgets. Literally, every state office is closed on Town Meeting Day, and, to my knowledge, Vermont is the only place to engage in this strange custom. Now, don’t get me wrong, it’s a wonderful thing to encourage people to participate in local politics and in forming the budgets of the local schools and such, however (and it’s a big however) it is incredibly inconvenient should you find yourself in the situation in which I found myself this morning.

Quick little personal note – I am currently unemployed and, according to all the doctors I’ve spoken to, am to remain unemployed with the exception of “possibly being able to work a part time, low stress job which is conducive to a consistent schedule to successfully prevent any intensified PTSD or BPAD symptoms.” Saying that this is a massive pain in the ass is an understatement. There’s something else you may not know about me: I’m kind of a work-a-holic. If I had my way, I would consistently work a minimum of 50 hours a week. It keeps me busy . All this “down” time is driving me nuts.**** So, I’d like to be working, but the powers that be, it would seem, have a different idea. With not working comes the loss of the benefits I had while working, the most pressing one being health insurance. To be absolutely clear, no one knew that my health insurance had lapsed until Friday afternoon. I filled out the application online for state insurance on Saturday. So I have been as on top of this as possible. But it doesn’t happen overnight, and you really need health insurance if you are hoping to manage a chronic medical condition, especially one requiring expensive mood stabilizers.*****

Back to this morning: I realized yesterday that I had less than a day’s worth of one of my medications and no means with which to get more until the insurance stuff cleared. This stressful epiphany came as I was having a late afternoon meeting with a counselor at a local mental health organization. Like I said, the application is in, and I’ve been told, based on my application, I’m approved. But it’s not “official” until the paperwork goes through all the way. State offices close at 4 PM on weekdays, and I did not finish my appointment until 4:10 yesterday. Then, I couldn’t make the phone call to get that magic number that will allow me to fill my prescriptions today due to Town Meeting Day.

So, there I was, with less than enough of this medication I’ve been told I cannot go without to get through the day and apparently no recourse. I called my Primary Care office and explained the situation. They said they were not sure they could help, but “someone will get back to you.” I then called the local mental health organization. I got voicemail. The waiting game began as my anxiety steadily increased.

My PCP office called me back at around 2 PM. I calmly explained that I do not have insurance currently (but I will, and it will be retroactive to the end date of my prior insurance), that I was dangerously low on this medication that every keeps telling me I absolutely cannot stop taking, and I have no money to pay out-of-pocket for a partial RX refill. The lady on the other end of the phone seemed genuinely concerned and interested in helping me, and I could hear the attempt at a reassuring smile in her voice****** as she said that she could call my pharmacy, have them fill the prescription and bill the hospital for now, so my retroactive insurance could handle it when it kicks in.

Fantastic! Problem solved! That was surprisingly simple, I thought. ******* She said she’d call me back once it was cleared it with the pharmacy.

About 15 minutes later, my phone rings and it’s the same very helpful nurse. Her opening line, though, is far less helpful and reassuring than I anticipated. It certainly wasn’t “You’re all set! Just head to the pharmacy.”

“So, Sheila,” she opened with a tone of hesitation. Uh-oh. “Your dosage on this medication has substantially increased since the last time you saw your primary care physician.”

“Um… yeah. Last time I saw him I was fresh out of Dartmouth and not diagnosed Bipolar, so it was being used in a very low dose to manage anxiety. Now it’s being used for mood stabilization.”

“Ok, well, your primary doctor isn’t really comfortable writing prescriptions of psychiatric meds in such high doses. Do you have an appointment with a psychiatrist lined up?”

“Yes, but we’re not sure exactly how far out that appointment will be. I am working with [mental health agency], though, and will have access to psychiatric services through them. The idea with discharge from the IOP, though, was that my PCP could write the prescriptions in the interim. They were supposed to communicate with you guys about that.”

“Well, they haven’t, and your doctor is not comfortable writing scripts at these dosages. So you’ll need to talk with the people at [mental health organization] to set something else up. Also, with your recent hospitalization, I need to clarify that you haven’t had any thoughts of suicide. That’s another reason your doctor is hesitant to write such large dose ‘scripts. We don’t want you trying to overdose on them.”

And there’s the real problem. “I haven’t, and I won’t. These meds are the things that are preventing both manic and depressive episodes. If I stop taking them, then I might be in trouble. But I don’t see how getting the prescriptions I’ve been taking for the last month and half to get stabilized is considered more dangerous than stopping them and risking being unstable just because a doctor is nervous I’ll suddenly try to kill myself with the meds that are literally preventing me from hitting that point.”

“Well, it’s an issue of liability.” Ah, yes. Liability. In our litigation filled society, it’s a legitimate concern for medical professionals. But I briefly wonder what the lawsuit would look like if I was forced to stop taking this medication and then ended up hospitalized again or worse. 

“Ok, so what am I supposed to do?” My anxiety and irritation are pushing code red levels at this point. 

“Well, he’s willing to write a prescription for one day’s worth. That will get you through until tomorrow when you can call about your insurance and also connect with your interim counselor to establish interim psychiatric care until you’re established with consistent care.”******** She tells me to come pick up the one day’s worth of this currently essential medication, which she gives me at no cost due to this loophole she’s found.

This fiasco took me just about all day. It was stressful. It prevented me from doing several other things I was hoping to accomplish today, and I spent a good chunk of the day honestly concerned I would not be getting this medication and missing it for a day would send me into a tailspin and land me back in the hospital, because it’s been drilled into my head over and over again how essential it is that I maintain consistency with my medications.

Maybe it’s my inner cynic, but I can’t help but wonder if the reaction to this situation would have been different were this medicine for a “physical” health problem verses a “mental” health problem. I suspect the answer to that question is a resounding “Yes”. Fear and stigma, it would seem, extend even into the medical world. Which is pretty silly when you think about it. BPAD and PTSD are medical conditions. The chemicals in and physical structure of my brain are messed up. Medication and therapy are essential to correct those issues and maintain “normal” functionality, much like a person with diabetes needs insulin to stay healthy. But “mental” health is still viewed as being very separate from physical health, and mental health patients without an established psychiatrist tend to fall through the cracks of misunderstanding and legal concerns.

So, I’m moving into tomorrow completely unsure of how much of this can be resolved in the next 24 hours. I’m worried that my Primary will flat out refuse to fill the prescriptions I’m now acclimated to and dependent upon; I’m worried I won’t be able to get in with the psychiatrist for over a month (psychiatric appointments in Vermont are very hard to come by, it seems). I’m stuck in this system that simultaneously fears destabilized mental health patients and hesitates to write prescriptions for mental health medications to keep people stabilized.

I was discharged from IOP with no insurance, no way to refill prescriptions, and no established, on going psychiatry appointments. Yes, I’ve learned the skills I needed from that program, and mentally, I was stabilized and prepared to move on. But, when you think about going from two months of wrap around services to seeing a temporary mobile crisis counselor because they don’t require insurance or payments upfront (another loophole I’m currently utilizing) and having a primary care doctor completely unaware of your medication changes and, it seems, unwilling to maintain those changes short term, you can start to see how fucked up this system of ours really is.

I’d be lying if I said I’m not more than a little frustrated. “One day at a time” is fantastic advice, but I’m not sure it’s comfortably applied to prescriptions. I certainly don’t want to be moving through the next however-long-it-takes-to-get-insurance-and-a-psychiatrist one dose or one day at a time.

One thing is for sure, I will feel so much better once my on-going maintenance care is established and I have insurance. I’ll feel better once I can work again, and I don’t just mean working at a “low stress, consistent part time job,” I mean working. Full time, with benefits, in some capacity that feels meaningful. Because I’m not built for a “job”, I’m built for making an impact. I don’t mean that in a “savior complex” kind of way, I just mean that I am someone who needs to feel like somehow, someway, I am making a positive impact in the world.

But for now, I’m literally being forced to live moment to moment. And maybe this is where that DBT idea of Radical Acceptance comes into play. But make no mistake, tomorrow morning this girl’s coming out the gate (politely) swinging, with self advocacy and assertive communication skills cranked all the way up to 11.

*my parents are NOT away on a week’s vacation – an obscure reference, perhaps. OLD Will Smith – like before the acting gigs old.

** Unless you live in the NEK (I grew up in St. J and Danville, I’m allowed to say that.)

*** State and Bank employees

**** Too soon?

*****Seriously, these things are, like, $5 a pill and I am supposed to take 18 of them a day.

******Medical professionals have a “special” voice for mental health patients, I’ve discovered. Quiet and gentle, intentional, like verbally attempting to defuse a bomb, all the while sweating bullets and terrified of an accidental detonation.

*******Famous last words. Right up there with “Hold my beer.”

******** I think I’ve mentioned more than once on this blog how very much I dislike “interim” and “short term” care.

On Moving On and Bumper Sticker Wisdom (That Actually Helped Me)

(Photo – I wanted a selfie while admitting myself to the psych unit… because that made sense. My wonderful friend humored me. This picture is denial incarnate, I think.)

Today was my final day of Intensive Out Patient treatment. This is a massive transition for me, as my life for the past 2 months has consisted of some form of group therapy almost every weekday. In January, when I admitted myself to the psych unit at Dartmouth, I was not anticipating the length of the journey upon which I was embarking.

In Dialectal Behavioral Therapy (DBT), there is a concept called Radical Acceptance. The basic idea is that you have to accept reality for what it is. If you accept reality, while there may be pain, you will not suffer. If you refuse to accept reality for what it is, then you will suffer. Another way of putting it is “willingness verses willfulness”. Willingness is the ability to accept where you’re at and do what it takes to get better. Willfulness is rebelling against or refusing treatment.

I struggled with willfulness at the beginning of my treatment. Though I voluntarily admitted myself to Dartmouth, I spent the first two or three days I was there insisting that I could not learn anything from the group therapy because I had a strong  professional understanding of the topics being taught.

** A slight aside on my professional identity: I have spent the past four and a half years of my life as a residential instructor in a group home. My job was teaching emotional regulation and life skills to dual diagnosed individuals (think Autistic/Schizophrenic; Bipolar/Fetal Alcohol Syndrome, etc.) . In that capacity, I was very familiar with the concept of DBT as it is a resource offered to many of the clients with whom I have worked.

Back to the Dartmouth Psych Unit, sitting in a DBT group as a patient felt pretty unnecessary to me. On my third day on the unit, I had a good conversation with my nurse for the day. She told me that I needed to shut off the professional part of my brain, the part that “knew” DBT skills intellectually, and I needed to have “beginner’s mind” when approaching the material and consider how those skills could be applied to my current situation. This perspective helped me overcome my willfulness on the unit; but I was still willfully in denial of the scope and impact of the struggles I was facing. I was convinced I would return to work and school in a matter of days and that this little detour to the hospital would have no long-lasting impact on my life.

This, as it turns out, was a completely irrational belief. You can’t qualify for admittance to a psych unit one week and be back to business as usual the next. There’s all this follow-up care shit you have to do. (It’s not really shit. But that’s my angry, willful Bostonian coming out.) For me, aftercare was a month of Partial Hospitalization and two and a half weeks of Intensive Out Patient (IOP). Finishing up IOP, though, is also not the end of my journey to wellness. Now, I’ll be working closely with my PCP, therapist, a psychiatrist, and Voc Rehab to try to really get things evened out and get my life back on track. And I’m very excited to continue to learn and grow. Right now, though, I’d like to take a few minutes to reflect a little, if you’ll indulge me.

In the past two months, I’ve learned a lot about myself. I’ve learned that I have Bipolar Affective Disorder. I’ve learned that my PTSD symptoms don’t have some magic cure, and that I’ll have them, to some extent, for the rest of my life. I’ve learned that I have an unhealthy tendency toward numbing my feelings with alcohol. I’ve learned that the way to manage many of my symptoms is to set and follow a schedule (something I despise). I’ve learned that medications are essential for the foreseeable future at the least, and possibly for the rest of my life. Prior to each moment of learning were several moments of willful denial.

“Fuck off, I’m not Bipolar!”

“The PTSD isn’t a big deal. It will pass.”

“I’m not taking any meds heavier than Tylenol.”

“Schedules are boring.”

“I’m a night person. I’m not going to start being in bed and working on sleep by midnight.”

“I don’t even need this program.”

“Drinking with friends isn’t a fucking issue. I can drink whenever I want. Who are you to take away my social life?”

The above are all actual things I’ve said out loud to my friends and/or treatment team over the past two months. Honestly, there have been moments that I’ve been truly insufferable, I’m sure. But, one by one, I’ve moved away from my denial and toward acceptance. And you know? Accepting things as they are instead of getting angry about how they “should be” has truly helped me stabilize and engage fully in treatment, and I have come a long way.

Treatment isn’t over yet, though. And there are some immediate hurtles for me to try to jump over. I’m hoping I’ve got enough momentum to clear them. My insurance lapsed mid-February, which is making follow-up care tricky to coordinate and getting prescriptions refilled impossible at the moment. (I’m working on that, though, with both my PCP and a local mental health organization, and should hopefully have that resolved in the next few days.) But, it’s definitely a stressful note on which to leave the intensive, wrap around support of the IOP program. (There will, in the future, be a separate blog post all about the ridiculous struggles of finding and maintaining affordable, quality mental health care.)

For right now, though, I just wanted to take a few minutes to share with you some bits of what I like to call “bumper sticker wisdom” that I’ve learned in the last two months that I’ll carry with me for the rest of my life:

“Sometimes good is good enough” (for your inner perfectionist)

“Yeah but your yeah buts” (For the moments your self talk is not helping you.)

“Check your lens” (Also for the moments your self talk sucks and your inner critic is dictating your perception of yourself and others.)

“Your shit; my shit.” (For the moments you may struggle with being able to differentiate between your responsibilities and other people’s problems)

“There is no bad mindfulness practice, there is only practice or no practice.” (Even if you’re REALLY distracted, and being mindful is hard, as long as you practice bringing it back to the present, you are succeeding in practicing mindfulness.)

“Act Opposite” (This one is from Cognitive Behavioral Therapy – you feel like staying in bed all day because you’re depressed? Do the opposite, even if you only make it to the kitchen and do 10 minutes worth of something before going back to bed.)

“Use the 10 Minute Rule” (This is maybe exactly what it sounds like, you do something you are avoiding for 10 minutes at a time. Got an inbox full of emails you’re avoiding replying to? Set a timer for 10 minutes and start reading and responding. Wherever you’re at at the end of that 10 minutes, you can choose to stop or continue based on how you’re feeling, but at least you made a small dent.)

“Action Precedes Motivation / If You Wait Until You Feel Like It, You’ll be Waiting a Long Time.” (Mood dependent behaviors are going to keep you stuck in your cycle of suck. You’ve got to do something to break the cycle. 10 Minute Rule is great here.)

“It’s Simple, but not easy.” (All of these things seem simple enough, maybe even like oversimplifications of the struggles you’re facing. But no one is saying it’s “easy.” Doing this work is fucking work. But it will help improve your situation over time.)

“Distress Tolerance: Getting Through a Bad Situation Without Making it Worse.” (I literally have a card of go-to healthy coping methods I can use when things really suck. I also have a list of favorite activities – I call it my “kit-bag”)

“G.L.A.D. / What’s Not Wrong? Journal” – One thing you are Grateful for today, one thing you Learned today, one thing you Accomplished today, one thing you took Delight in today, and two or three things that are NOT wrong in this moment. Write it out every day. Keep track. Over all, it will help challenge those deeply entrenched thoughts of “My life sucks”, “Nothing good ever happens to me”, “Why bother?”, “Fuck it”, etc.

And finally, remember that we are all working as hard as we can, and we have been working as hard as we can, but recovery is based on finding a way to work better, not harder.

So, I’m onto the next step. Wish my luck in this insurance fiasco. I’m told going off my meds due to not being able to refill them at this specific point may undo all the work I’ve done in the last two months, and I’m really not trying to have that happen.   I have several meetings tomorrow, so I anticipate a more technical/ resource filled post at some point.

Movin’ onward and upward, as they say.

On the Good Days

Today was a really good day. Sweatshirt weather, sunshine, Vitamin D, time spent with a friend (who I actually met while at inpatient treatment), and connecting to a lot of really cool resources in my area! I spent a good chunk of the day exploring Burlington with my friend and taking pictures. As I’ve mentioned before in this blog, photography is my absolute favorite form of non-traditional mindfulness.

In the type of treatment I am receiving, mindfulness is considered a necessary component to successful application of the tools I’m learning, but it’s a big struggle for me. I’m working now on getting more comfortable with traditional mindfulness practice (focusing on my breath, doing progressive muscle relaxation, guided meditations, etc.) but it’s definitely difficult. This is a PTSD thing. See, the idea of closing my eyes in a room full of people and blocking out external stimuli is in direct conflict with the hyper-vigilance that comes in the PTSD gift basket. Focusing on my body and breath actually tends to cause me to panic and dissociate, because, physically, it reminds me of trying to stop crying in dangerous situations. When I was a kid, my stepfather would say that often-uttered phrase “Stop crying or I’ll give you something to cry about.” Except, he meant it. If things didn’t turn around quickly, someone was getting hurt. So, I’d focus really hard on calming my breathing to stop the tears. That’s what deep-breathing has traditionally been for me. Combine that with closed eyes in a crowded room, and there’s just no way in hell I’m able to participate. So, I’ve needed to be creative in my mindfulness practice, and photography is, by far, my preferred method.

You have to look at the things around you – really look. You have to consider the angle and lighting and how to best convey the feeling or message you’re hoping to put out there. You have to pause to take the actual photo. It’s being completely present in that specific moment. It’s expression. It’s everything I love about mindfulness practice and nothing that trips me up.

So, I spent all afternoon today soaking up the unseasonably warm weather with a friend who provided great company, laughs, and meaningful discussion, taking pictures, and exchanging resources and book titles and apps that we have both found helpful in our respective journeys so far.

There is something to be said – a lot to be said, actually – on the importance of peer connection and support in recovery. Now, my friends and family have all been fantastic supports, and I do not, by any means, want to minimize that. But, unless you’ve been inpatient, you can’t truly understand inpatient. You create inside jokes based on the group facilitators at the hospital, you have a sort of slang built from the bumper-sticker phrases you learned to go along with your therapy, a sort of short-hand you can just toss out at each other when one of you is having a rough time. I’m very happy to say that I’ve kept in touch with three people I met while at Dartmouth, and those relationships have been very helpful in keeping me on-track in my own journey to wellness. Those relationships, though, due to distance,  are mostly limited to on-line interactions (Facebook). Having one of those peers in this area and spending actual face-to-face time connecting with someone who “gets it” is a rare gift, I think. And I’m very grateful to have the opportunity to stay connected with him!

So, today marks the first day since I started this intensive treatment that I’ve honestly hit every box on the little “Wellness Goals” check-list: social connection, group support (acupressure treatment at Turning Point), mindfulness, exercise (we literally walked all over Burlington – close to 5 miles for me, according to my phone), sunshine and fresh-air, completion of some wellness tasks (I was energized from the day out and was therefore able to get some serious cleaning done around my house, I worked some more on my discharge paperwork, and I am writing this blog post), ate a healthy meal (sort of – that was actually a bit of struggle for me, I suppose, but I had a shake and a banana and some peanuts, so that’s something anyway), took all prescribed medications on time, and am on track to head to bed at a reasonable hour and hopefully get some good sleep tonight!

I write a lot about the idea of balance. When you focus on the good days, they kind of help balance out the bad days. It’s just a mater of maintaining that balance. And that’s the task on which I intend to keep working!

***If you’d like to see the pictures I took today, feel free to hop over to my Instagram account at https://www.instagram.com/sheilajay47/?hl=en

On Mountains and Dichotomy

Mountains have been a recurring theme for me over the past few months. They hold a symbolism I can’t seem to escape. When I was in the hospital, one of my friends (who is a queen of metaphor and puns and all other things creative expression) kept referring to my journey as a hike up a mountain. When I asked my husband to leave, I thought I was getting ready to climb a steep hill and the journey would be tiring and painful but over soon enough. When PTSD hit, it turned out that hill was a treacherous mountain. When Bipolar came to light, that hike up that treacherous mountain was suddenly happening in the midst of a terrible rainstorm. But my job, my one focus, needed to be to continue the climb. Because, my friend promised, the view from the top would be so beautiful and amazing and worth every single twisted ankle and slip and slide and every moment of complete and utter exhaustion and pain.

Independent of my friend, one of the group leaders at the hospital used the mountain analogy for recovery, reminding all of us that there would be times that we felt we couldn’t take another step forward, and it was ok to rest as long as we didn’t build a house there and call it home. There would be times when the path was so steep and slippery that we would fall and slide down the mountain a little bit, and that was ok, too, so long as we tended to any injuries and then got back up again and continued the climb. The group facilitator also summoned the image of the view from the top of the mountain, and how very worth it it would be to reach the summit.

Earlier this week, in a mindfulness group in which I am participating as a part of my treatment, we did a guided meditation in which we were asked to picture a mountain. Mountains have also, not unreasonably, been popping up in my dreams a lot lately.

Today, I had to drive about 40 miles away to pick up my car. I was the victim of a hit and run a week and a half ago and the nearest-to-me-insurance-company-partner body shop happens to be up in the middle of no where. (Welcome to Vermont, friends.) As I drove, I saw the most beautiful mountain range. The skies were overcast but clearing and sun beams were breaking through and lighting the mountains and valleys in a way I have never seen before. Unfortunately, there was no safe spot to pull off and snap a few pictures, otherwise I definitely would have and this blog post would be a lot prettier. But, as I looked at the sun touching those jagged, snow-covered peaks, all of the talk of mountains over the past few months began to truly resonate.

I spent the whole drive there and back thinking about the nature of mountains. The dichotomy, if you will. When you think about a mountain, what comes to mind? Do you think of spiritual leaders like Moses connecting readily with the Divine? There’s a strong tradition in the collective myths of humanity of mountains being the place where the earth connects withe the heavens and, thus, mountains have traditionally been considered places of spiritual significance. (Not only of Judeo-Christian significance, but going back to the Greeks with Zeus and likely inspiring all of the pyramids prevalent in so many ancient societies.)

In many tales, mountains are also a place of great trial and suffering. (I’m looking at you, Frodo and Samwise.) The pinnacle of the hero’s quest to self sacrifice or self actualization (respectively, I would argue – but my analysis of the imagery in Lord of the Rings is probably best kept for another post).

That said, I live in New England, and it’s winter (minus the current global warming, spring like temperatures we’re experiencing, but the topic of the slow death of the earth at humanity’s hand is probably also best left for another post). When mountains are mentioned around these parts this time of year, the immediate thought that comes to mind is winter sports. Some, I’m sure, would argue that winter sports are a spiritual experience (especially my snowboarding friends) – being “one with the powder” and such – but really, it’s recreation. (Sorry to minimize, guys, but smoking a bowl at the top of the lift is not quite the type of “burning bush” moment to which I am referring.) At the end of the day, it’s a recreational experience. It’s exercise. It’s fun.

All of that to say, mountains hold a somewhat contradictory nature in our collective consciousness. On the one hand, many of us are drawn to climb them, to explore, to see the summit, really just to say we did. This allure is, for me at least, undeniable. The flip side, though, is that mountains can be deadly if you’re not properly prepared. Even if you are a veteran hiker with all the right gear, if you get off-trail, your life is in very real danger.

Mountains are viewed as the example of steadfastness. They stand immovable, yet are formed by shifting fault lines and the general instability of the ground upon with they stand. Back to my snowboarding friends – they are a place of immense fun, a playground of snow and tricks and endless rides, yet if you attempt a run on an untouched surface of the mountain’s face, you may trigger and avalanche and be buried. Mountains are considered staples of our landscape, unchanging; yet, a rock slide can completely alter the shape of a mountain forever. (Anyone remember The Old Man on the Mountain in the Notch?)

The dichotomy of mountains has been intriguing me all afternoon. I think that “climbing a mountain” is a very apt metaphor for living with mental illness and for the “hero’s quest” we are all on, I believe, toward self discovery and self actualization. When you look at the mountain, in the thunderous rain, and you see the signs warning you that the trail is muddy and overgrown and covered in gnarled roots and may be flooded out in some areas, you don’t want to climb it. You start looking around desperately to see if there’s a trail lift that can carry you smoothly to the top.

I admit, when I first went to the hospital, I thought I was hopping on that lift and everything would be good from there. I thought I’d sit back passively and let doctors and meds smoothly carry me to that beautiful view everyone kept talking about. When it turned out that the hospital didn’t have access to the lift, they sent me off with hiking boots and a walking stick and rations for a few days to go to the partial hospitalization program.

This is where I hop in the lift! I thought heading in. It wasn’t. They gave me a compass, though, and sent me off to the Intensive Outpatient Program, which, they promised, was a good point to resupply.

Ah! Surely this is where I get on the lift! But it wasn’t. It turns out, there is no lift. There is no easy, bump free ride to the top of the mountain. In fact, the only way to get there is to climb. And it’s a hell of a climb, let me tell you. But, the good news is there are resupply points and there are shelters and there are trail markers and if you just follow them, stay supplied, and keep going, you will hit the summit eventually.  And maybe, once there, you will have some semblance of a spiritual experience – getting to know yourself on a deeper level. Getting to know the “you” you were before the world fucked you up. Getting in touch with your higher self. Or your higher power. Or the universe. Whatever you want to label it. It might not be a burning bush moment, but it will be well worth the climb. I believe that fully. But, as you begin and commit to your ascent, remind yourself of the duality of the mountain. Stay safe. Stay well stocked. Stay on the trail. Because the mountain will kill you if you’re not mindful.

If you lost me in the metaphor – doctors appointments, meds, therapy, friends, peer supports, etc. are excellent places to restock and rest and make sure you’re still traveling with functional equipment.  And they are essential.

On Bipolar Affective Disorder (No Qualifier)

A NOTE TO START – This post has footnotes. They are indicated by * and located at the bottom of the page.

What’s the only consistent thing in life? Change. You’ve heard that before, right? It’s one of those bumper sticker platitudes people sling at you when your life moves in an unexpected direction.

What’s the only consistent thing in Bipolar Affective Disorder? I’ll give you three guesses but you’re only going to need one. If you guessed “change,” congratulations! You’re right!

But it’s not the “oh man, life is progressing and now it’s time for a new [school/job/apartment/house/relationship – insert your adjustment stressor here]” kind of change. No, it’s jumping from one extreme to the other. It’s being on the very end row of one of those big swinging viking boats you see at the county fair. Sometimes, it’s really fun and you’re enjoying the rush; sometimes, you’re trying to run the length of it with each sway, desperately hoping that you’ll end up in the middle and the nausea and whiplash will decrease. What you don’t fully realize is that you’re just running from end to end on a broken ride that will never stop swinging. And the whole time the ride attendant is just standing there throwing handfuls of pills at you and screaming promises that the medicine will make it better. It won’t fix the ride or get you off the boat, but it will make the stomach lurching and head spinning more tolerable. And it sounds like complete and utter bullshit.*

My BPAD diagnosis is very recent. No one is quite sure what type of Bipolar I am yet, but everyone agrees the description of my life experience lies somewhere in the lines of the DSM-V diagnostic criteria.

For most of my adult life, I have enjoyed (and I do mean enjoyed) periods of little-to-no sleep, insights into philosophy, the deep knowledge that, “at my core I’m creative and beautiful and that picture on the wall is crooked but that’s ok because I can fix it and I should fix it – actually I should just change up the whole wall decor because that’s old and boring now and I wonder if god ever just decides to switch things up because they’re stagnant and boring or maybe that’s why the universe is in constant motion and everything is changing, so god doesn’t get bored? My god the universe is a beautiful thing, though, and I’m made of stardust which means I’m infinite and everything is connected so beautifully I could cry for joy and everything is going to be ok because everything is already ok and everything has always been ok and I’m going to go write some amazing poetry or play some guitar or take awesome photographs right after I fix that damn picture on the wall!” – actual to-scale model of my brain-train when I’m hypomanic. I understand if you’ve never been hypomanic, that may sound overwhelming. But it’s really not. It’s fun. It’s being “high on life.” It’s seeing more vividly and appreciating everything around you at a level so deep it seems to resonate throughout your body and out into the world and attract positivity and good vibes to you. Hypomania is being “up,” but still able to function. It’s not psychotic, it’s not detached from reality, it’s not a hindrance to your daily life. It’s just a state of being that feels really good. 

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Hypomanic/Manic – colorful, beautiful, vivid, surreal

As the laws of physics dictate, though, what goes up, must come down. And my crashes from hypomania were brutal. “Nothing is ok. Nothing has ever been ok. Nothing will ever be ok. What’s the point? Everyone hates me. Fuck it.” As is common with many non-diagnosed people on the Bipolar spectrum, it was during depressive episodes that I sought help. Therapy for my thoughts, SSRI antidepressants for my brain chemicals, etc. Until very recently, my manic phases were decidedly in the hypomanic range, so I saw no issue even worth reporting to doctors. The closest I ever came to mentioning it was to say, “Yeah, you know, I have about 3 or 4 bouts of insomnia a year, but I’m pretty good at functioning through them so it’s not really an issue.”

The professionals accepted this at face value, and for 8 years, so progressed my life. Periods of creativity and intense interest in learning new topics (I once spent $200 on books about how to play the piano only to decide two days later that I did not, in fact, want to play the piano, for example.) My sporadic interest in a wide variety of hobbies has been referred to as “flighty” or “quirky.” Friends learned long ago to reply to my enthusiasm about new endeavors with as slightly disconnected and non-committal, “Oh yeah? I hope you enjoy it.” But, when I’m feeling that excitement, their responses never bother me. When I’m feeling the depression, though, every conversation replays in my head and I think “My God, I’m such a fucking loser. I can’t stick with anything. My friends aren’t invested in my interests anymore because I’m such a flake. My friends don’t even like me, they just tolerate me.” and so on.

In November of this year, I had what I thought was just a particularly bad case of insomnia triggered by a major life change (more on that in a future post) and emerging PTSD symptoms from traumas sustained throughout the years. I couldn’t eat; I couldn’t sleep. For 10 days. I oscillated between energetic depression (feeling like staying in bed and sleeping all day but not being able to stay still or close my eyes) and this sense of wired energy with no focus. My friends noted I was talking a mile a minute, and my thoughts were coming at me even faster. I would start to rearrange a room in my house, then get distracted by doing laundry, then get distracted by video chatting a friend and telling her how terrible everything was, then insisting everything was fine and I didn’t need to see a doctor at all because I was good, and so on. On day 6 without sleep, and with the prompting of some friends, I went to Urgent Care. I knew I needed to sleep, though my mind was not the least bit tired. I physically could not sit or stand in one place for long at all. The Urgent Care nurse gave me a small amount of Lorazapam to “bring me down” and allow me to sleep. It did not work. It doped me up, and seemed to increase my depressive symptoms, but sleep was still impossible. NOTHING would allow me to sleep. I was just wired and felt completely overloaded. I saw three different doctors in three days, and they each attributed my symptoms to somethings different – PTSD, Generalized Anxiety Disorder, and “Adjustment Disorder with Anxiety.” Each doctor attempted to refer me to a psychiatrist. No psychiatrists ever got back to me. My primary care doctor started me on a low dose of Zoloft to help with the depression and anxiety I was experiencing.

Sleep never fully returned. I was tired now, though. And I would sleep for a few hours here and few hours there throughout the day and night and catch naps whenever and wherever I could. Despite still not having regular sleep, the energy was gone and the freight train of depression slammed into me head-on and splattered every single reason I possibly had to be happy or even to live across the tracks and gravel and grass. “Brutal” is an understatement. At first, it was painful – drinking and sobbing each night to try to not feel so much self loathing. Then, it became calm, numbed resolve. A firm knowledge that nothing would ever get better and nothing mattered. Nihilism incarnate. My job didn’t matter, my friends didn’t matter, school didn’t matter, my family didn’t matter, hell, my daughter didn’t even matter. And I couldn’t make them matter. It was the worst depression I’ve ever experienced.

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Depressed – black and white, trapped, no way out

So, I went to inpatient to get a handle on the depression and sleep issues (as well as the flashbacks. panic attacks, and nightmares I was having – but those are PTSD things and this post is about BPAD, so we’ll save those details for another time.) The doctors on the unit, though, attributed all my struggles to uni-polar depression and PTSD and, in addition to a few other meds, substantially increased my dosage of Zoloft, which is an SSRI antidepressant – you know, the type I’d taken sporadically over the years but never for longer than 4 months at a time (because, Hey! When you feel better, who needs meds? Am I right?**)

(Spoiler alert – The footer for that last sentence says “I am not right.”) I need to amend that statement slightly. The right meds are important. In case you didn’t know, SSRI’s can actually seriously exacerbate Bipolar symptoms. Who knew, right?  Well, doctors know that, but because everything was happening at once and no one (myself included) had any sort of inclination that I’d been hypomanic multiple times throughout the years, treating my depression like depression seemed reasonable. As it so happens, though, “mania” is not always painting your kitchen on a whim because you just know you’re the next HGTV star, spending your entire paycheck on new clothes to become a model, going out and doing drugs and having dangerous sex you later regret, or becoming so psychotic that you lose time or believe you understand the Illuminate are actually the good guys and everyone needs to understand that they are, in fact, running our society, but they are the benevolent overlords and we all need to spread their message.***  No, sometimes “mania” is what the professionals like to refer to as a “mixed state” (which is exactly what it sounds like and, coincidentally, exactly what I was experiencing.) Depression mixed with energy and the inability to sleep. Rapidly cycling from energized and feeling superhuman and above the need for help to agitated and wanting to give up and incapable of getting help in the span of a few hours, multiple times a day. In other words, hell on earth.

So, I’ve got this history of hypomania that I had no clue about (being able to work 108 hours in a week without sleep or impaired functioning all while spending the awake overnight shifts writing poetry that’s getting a ton of love on Tumblr is not a problem. Objectively, no one is going to say “something’s wrong with me, I’m being too productive, I better get help!”), I’ve got these pretty brutal bouts of depression, and every now and then I’ve got these periods of feeling neither depressed nor “amped up.” From the time I was 19, this was my normal. In reality, every time I ignored the hypomania, every time doctors tried to treat the depression with SSRIs, I was unknowingly inching closer and closer to a full blown manic episode.****

After discharge from the inpatient unit, I went to a Partial Hospitalization Program and finally met with a psychiatrist for a full, two hour eval. (The first true psych eval I’ve ever received.)

“Have you ever been manic?” she asks.

“No.” I answer, thinking of “mania” in the traditionally understood sense.

“How about hypomanic?”

“Uhhh… what’s that?”

She explains and it’s like a lightning bolt hits the top of my head and travels straight through to my feet. I feel my face get red. My mind starts to race. My dad’s Bipolar. I can’t be Bipolar. My therapist actually looked at me one time and said “the only two truly crazy conditions, and by crazy, I mean the brain is reacting in a way that makes no sense and can only be described as a malfunction, are Schizophrenia and Bipolar, and you’re neither of those.” Right! Exactly! I’m neither of those. If I’m Bipolar then I really am crazy and even my therapist will think so! So, I can’t be. I should lie. No. I should tell the truth. I’m here for help. They can’t help if I’m not honest. But Bipolar means meds for life and a whole bucket of “fuck off, no thank you.” I can’t do that.

My silence was long enough, I guess, for her to press more. Over the next few days working with her, my diagnosis changed from Bipolar II (hypomania only) to “Either Bipolar I or Bipolar II” (based on the 10 days with no sleep, which would technically constitute a full blown manic episode and therefore move me into a Bipolar I territory), to comments of “Well, you’ve just got this sort of rapid cycle thing going on, don’t you?” to “Well, whatever you are, you seem to be mixed.” So, for those interested, my “official diagnosis” right now is just Bipolar Affective Disorder with no qualifier, but we’re working on getting more specific.

Currently, I am on mood stabilizers for the first time in my life, which will, in theory, prevent both the manic/hypomanic episodes and the depressive episodes. I’m not up to a fully therapeutic dosage yet, so I’m still kind of all over the place. I’m tracking my moods daily on an app in an effort to gather more information so my psychiatrist and I can get a better understanding of my specific brand of BPAD. Regardless, though, I’ve certainly been learning a lot about the diagnosis and it’s implications. Sticking to a daily schedule, going to bed and waking up at the same time each day, and taking meds at breakfast, lunch, dinner, and at bedtime to get stabilized. Cutting way back on caffeine intake. Eating healthy food. Avoiding alcohol.  You know, stuff that sounds absolutely boring and obnoxious to insert into my life. My life that previously consisted of 2 am drives to look at the stars and a 4 am swim in a river with some friends of mine and nights of no sleep and writing and parties until 5 am and stints as a photographer and as a poet and as a guitarist, etc, etc.

But here’s the thing with managing Bipolar: if you want to be free of that whiplash and nausea, you can’t keep running from one end of the ride to the other –  you’ve got to find some way to sit closer to the middle of the boat and stay there.

Tonight, I’m missing my little brother’s music gig in town because I know I need to avoid over-stimulation too close to bed time and I’ve been all over the place mood-wise the past few days, so staying out of a bar is probably a good idea, too. Self-Care isn’t all spa treatments and vacations. Sometimes it sucks. Sometimes it’s skipping out on stuff you really want to do because you know that long term stability and health are more important than short term fun. I’m trying to get to the middle of the ride.

FOOTNOTES:

*Meds are not bullshit. They are important. I am in no way advocating you neglect the advice of medical professionals. The doctors, psychiatrists, and therapists are there to help and the meds will help you tolerate your condition and live a more comfortable and adjusted life. I’m simply acknowledging the frustration that can occur when you really just want off the fucking boat.

**I am not right. Again, I’m going to say it: medications are important. They are prescribed for a reason. Medical professionals are here to help you.

***All true stories of people I know personally with BPAD

****I still haven’t had a “traditional” manic episode, and I’m now on mood stabilizers so it’s possible I never will (See? MEDS ARE GOOD. Gonna keep driving that point home because I have days I struggle with the idea myself and if I say it enough, I’ll drill it into my own head – metaphorically, of course. No actual head drills. They don’t still do lobotomies, do they?*****)

***** Ok, my footnote has a footnote. I may need help. Seriously, though, sometimes my sense of humor is morbid. It’s self deprecating and it’s part of how I cope. I never mean to offend. If I do, tell me, please. I will sincerely own it and apologize. I’m trying to be a force for good here, so when I make a joke, I want to know if it’s in bad taste. If you’re reading this, I love you and I respect you.

**************All photos in this post taken by me. (c) Sheila Mercon (until I legally change my name back to my Maiden name of O’Donnell)