mental health

Posters and Masks

Someone recently said that someone else thought of me as the golden child or poster child for Bipolar Disorder.  While that is very touching and flattering, it isn’t really accurate because even with everything I do, I’m still not doing well.  I’ve been various levels of depressed since October, which was when I had my last real suicidal thoughts.  It wasn’t so much that I wanted to die as it was I wanted to not be living this life and experiencing this pain anymore.  I just wanted to go to sleep for a really really long time and wake up when the episode was over.  I just didn’t care about anything.  I was so apathetic.

I fight SO HARD every day to be okay, and most days I’m still not okay, not really.  I’ve just had fifteen years of practice of putting on my “okay” mask since I started struggling with depression and anxiety when I was 13.  It’s just been within the past year that I’ve started really feeling comfortable taking off that mask- at very specific times- when I’m behind a computer screen and typing for this blog or for www.illuminatedbyu.com or typing up journal entries.  If I was doing well or okay, my doctor and I wouldn’t still be talking about ECT (Electro Convulsive Therapy- shock therapy) and exhausting all other possible options first.  I wouldn’t have just taken a genetic test to try to see what meds might finally help me because nothing works for my depression (or works for long anyway).  (As a side note, since I’m struggling more with the depression side of things now, I really wish my doctor would take me off of some of the mania meds, I take a LOT of pills each day)

I do work my butt off.  I take my meds.  I go to therapy once a week and the psychiatrist about once a month.  I’ve done two different Intensive Outpatient Programs.  Sometimes I go to a support group.  I have an amazing support system.  My parents are a treasure to me and help me more than they could ever possibly know.  I have an immaculate Wellness Recovery Action Plan (WRAP).  I have a living will and the forms for my parents to have Health Care Power of Attorney.  Basically, I’m prepared for my mental health to go even further downhill, but none of those things can stop that from actually happening.  In fact, I had most of this stuff in place before I had to be hospitalized last May for mania.  I’ve updated my WRAP and Health Care POA since then, but I was attending therapy and psychiatrist visits and taking my meds as prescribed then, too.

I am absolutely not in remission.  I use a scale where 0 is suicidally depressed and I need to go to the hospital and 10 is stable and happy.  Over the past month, there have been some days where I have been as high as a 7.  A 7 may be better than a 2 or 3, but it still isn’t stable and happy and whatever “normal” is.  Over the past week, there have been days when I have been as low as a 4.  There is a little bit of rhyme and reason to it as I do know what some of my larger triggers are, but overall, Bipolar Disorder is like a bulldozer that flattens out your life and leaves you standing there staring at the rubble wondering how to rebuild.

So please, don’t assume that I’m okay because I “don’t look sick” or because I’m laughing or smiling.  I can be depressed and still laugh and smile.  I am so exhausted and so sad and so over it, but I will keep fighting and I will keep telling you about it because helping to end the stigma is so SO important to me.  You know someone who has Bipolar Disorder and sometimes – often, lately – that person is just not okay.  I need help and I’m doing everything I know how to do to get it.  If you feel moved to do something, you can be a good listener or offer to sit with me or do an activity together you know I’ll enjoy.  We could have hot tea or a meal together or go for a walk or a hike or just sit on the back porch talking.  Text me and ask how I’m doing.  I may not respond right away, but it will mean a lot to know that someone cares enough to ask.  Offer hugs.  Invite me to things even if you think I’ll say no because I’ve said no 50 other times because I haven’t been feeling well.  Even if I say no a 51st time, I’ll appreciate the invitation.  Please don’t be offended if I’m being awful at keeping in touch.  I feel like a burden to everyone right now.

I’m struggling and things are hard right now, but I haven’t given up on me, so please don’t you give up on me either.

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mental health

WLOS Interview

I’m pretty open about my struggles with mental illness, which is why when Kim King from WLOS asked if she could interview me about having Bipolar Disorder if she silhouetted my face, I said no.  I told her that I would be happy to do the interview, but that I didn’t want my face darkened out.  You see, that would imply that there’s something shameful about or wrong with having Bipolar Disorder, a medical condition I have that approximately 5 million other Americans suffer from, too.  There’s enough stigma surrounding mental illness, so when she asked “so you want to be an advocate?” her question was met with a resounding, “yes!”  She and a videographer came to my house a few weeks ago and were here for almost two hours, but only a few sound clips from what my mother and I said were included.  I’ve included the link to the story down below, but first there are some things that were left out that I feel strongly about, so I want to make sure they are heard by at least a few people.

One of the biggest struggles for me has been finding a psychiatrist that was both accepting new patients and truly listens to what I have to say.  My first post-Peace Corps, post IOP psychiatrist tried to insist that I had ADHD when I was really just suffering manic and mixed symptoms.  I wrote that provider a letter about how I didn’t feel heard by them and read it aloud during a session.  They said I wrote it because I was angry and in denial about my ADHD.  They also defensively insisted I was, in fact, being heard, which wasn’t all that great of a way to reassure me.  My second psychiatric provider ignored me when I told them I was becoming manic.  Despite symptoms that were clearly related to mania (feeling like there were bugs crawling all over my skin, hearing voices, out of control spending, etc), they insisted that I was just experiencing anxiety.  In fact, I recently obtained my medical records from that provider and the records still don’t indicate any mania, even though I had to be hospitalized for a week for – you guessed it- mania after that provider continually ignored the symptoms I was reporting.  The doctor I have now is wonderful.  He listens to me and offers me real solutions for problems I’m experiencing.  He’s open to trying pretty much anything to get me well and he repeatedly acknowledges that I work very hard at my wellness and that it must be frustrating to do everything I’m supposed to do and still be quite sick.  I’m not sure if he is accepting new patients, but his name is L. Ralph Jones and he is at Carolina Partners in Mental Health.  It took me over three years to find a provider that I trust who really listens to what I have to say.

My other truly monumental struggle has been finding the right medications.  In the three years and four months since my diagnosis, I have tried most of the medications that are available for Bipolar Disorder, with few offering me much relief or offering relief for very long.  My options running short, I’m trying a last ditch medication before the doctor and I have decided ECT may be the answer.  I did recently learn about a genetic test that can be done to determine which medications may be the most helpful and I do plan on trying that test before resorting to ECT, which has severe memory side effects.

I want people with Bipolar Disorder to know that there is hope for them and that they just have to keep advocating for themselves with their doctors to try new medications and treatments that may help them.  I was inspired to go public with my story to friends and family members on Facebook after watching Carrie Fisher’s HBO special Wishful Drinking.  The response to my blog post Coming Clean was overwhelmingly positive and supportive.  The more of us who speak out about this illness and mental illness in general, the more normalizing it will be for others who have it.  If I can help a single person feel less alone, I feel like I have made the world a little less dark and a little less scary.

For more information on Bipolar Disorder, visit http://www.illuminatedbyu.com in the month of March.  We will have podcast episodes and blogs dedicated to the illness for the whole month.  Thank you for reading and I hope you have a great day!

WLOS Story

mental health

4/10

You last got an ode to Catherine.  This, by comparison, is going to sound like a total Whine Fest.  It’s also going to be very honest, which some people like but others don’t, so proceed accordingly.

I’m not doing well.  I’m not doing well and I’ve been trying to hide it for months, which has resulted in me just being plain old exhausted.  I’ve been varying levels of depressed since October.  Nothing specific happened then, that’s just when this part of the cycle started.  This long, seemingly endless, helpless part of the cycle.  On a scale of 0 to 10 where 0 is suicidally depressed and I need to be in the hospital and 10 is I’m doing great, I’m at about a 4.  A 4 is not that terrible though because yesterday I was at a 3.  Someone recently told me that using a scale helps other people understand how I’m really doing, since “not well” two days in a row could mean the same as yesterday or better than yesterday but still bad or much worse than yesterday.  I’m doing everything “they” tell you to try to feel better.  In my Intensive Outpatient Program (where I did group therapy 3 days a week for 3 hours a day) we talked about acting opposite to how you’re feeling and I’ve definitely been doing that.  I feel like sleeping all the time and never getting out of my bed or showering, but instead I’ve been making plans and doing things.  I feel like wallowing in self-pity, but instead I’m trying to be optimistic and plan things for the future.

In my IOP, we talked about negative self-talk and interrupting negative thinking patterns and I’ve been doing my best to do that.  I’m not hungry like I usually am, but that could be the Vyvanse, a medication I started because I either have Binge Eating Disorder or the side effects of the medication have caused me to gain 60 pounds.  I personally think it’s probably a combination of the two.  At any rate, I’m now unwilling to try any new medications that have the side effect of weight gain.  At least the Vyvanse, as a stimulant, gives me some energy.  I think it’s the only reason I’m able to get out of bed at all.  Everything seems like it takes a great deal of effort, even things that used to be easy to me like writing or reading.  I have four partially finished books that I am sort of reading right now.  I keep starting them and at first I can read them and like them, but even though I don’t lose interest exactly, I put them down and can’t seem to pick them back up.  All of them are good and deserve to be finished, but I just can’t read for long enough to finish a book, which is extra bad because reading is one of my very favorite activities.

I joined a Meetup group for Movie Geeks in their 20s and 30s, which is mostly great and the people are super nice, but sometimes I think that no one there likes me and that the group would be better off if I wasn’t there to annoy everyone.  I realize that it’s unlikely that “nobody likes me, everybody hates me, I’m so annoying,”  but that’s what my self-talk is often when I’m around other people.  Maybe that’s just social anxiety, but I think it’s depression, too.  I keep thinking about death, also.  Every time I leave the house or my parents leave the house, I become sort of obsessed with “I love you” being the last thing we say to each other because I’m terrified that something will happen to either them or to me and our last words to each other will have been something stupid.  I keep worrying about something happening to River and I keep getting upset thinking about her death even though it is likely 10-11 years away.  I feel guilty for not playing with her enough or taking her on walks, even though my back then my ankle have sort of prohibited that for a while, which is out of my control.  Also, when I try to play with her in the back yard, she just wants to play keep away, and I can’t really keep up with my air splint on my ankle.

I feel helpless because I know I’m running out of options for treating my illness.  I’ve tried most of the medications available and, as previously stated, I’m not willing to try any new ones that could cause more weight gain, which is most of the medications that I haven’t tried yet.  I don’t feel hopeless yet, which is the good news.  This is primarily because I know there are still options.  One I have been considering recently is ECT.  I haven’t yet talked with my doctor about this, but I talked with my therapist about it yesterday and she thought it was worth talking with my doctor about when I see him next week.  I had blood work done last week to check my Depakote levels and I’m hoping that those are merely off and my dosage can be adjusted, but if not, ECT isn’t “One Flew Over the Cuckoo’s Nest” scary anymore.

They give you a muscle relaxant, put you under general anesthesia,  place two electrodes either on the right side of your head or on either side of your head, put you on oxygen, then induce a seizure for about one minute.  At first they do this three times a week, then treatments become more spaced out until eventually you just have maintenance treatments.  If you had asked me when I was first diagnosed if I would ever consider ECT, the answer would have been an emphatic “hell no!”  It even used to be in my Wellness Recovery Action Plan under “List the treatments you want to avoid:”  but I have been worn down and trampled on by this illness.

The only break I’ve had from symptoms since September of 2013 was September 2015-March 2016 when I was dealing with a large blood clot and a small pulmonary embolism.  And even then I was free from mood symptoms but not from crippling anxiety.  I’m grateful for those 7 months because I don’t know what I would have done if I was trying to grapple with my mood and the blood clot at the same time, but it just feels so unfair that the only break I’ve had was when I couldn’t even fully enjoy it.  Plus, the entire time I kept having chest pains and thinking I was having another pulmonary embolism even though it was just anxiety and panic attacks.

While I was in the hospital and since I’ve gotten out, I’ve kept a journal, thinking that I could turn it and some of my blog posts into a memoir.  I think now that I may have to change the format and possibly write it as a novel instead for legal purposes, but my point is actually that the last time that I wrote was February 6th and the last time before that was January 26th and the last time before that was January 20th.  I can’t write every day anymore, no matter how badly I want to.  It’s like the words just won’t come.  It’s a small miracle that I’ve been able to semi-coherently draft this post.

Check on your friends that have mental health stuff.  Just because they seem okay doesn’t mean they are actually okay.  Let them know it’s okay for them to be honest with you and that they have a safe place to talk.  Often, we feel like we have to hide how we are doing to protect the people we love from their worry about us.  Someone recently told me, “no one asked you to protect them” and that is so important.  It’s one of the reasons I’m sharing my feelings with you now.  One of the most important things I have been told recently was “Your truth is a gift that I treasure.”  You have no idea how much those words may mean to someone.  Be kind.  Love each other.  That’s all for today.

mental health

Accomplishments

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This post is going to sound like an Ode to Catherine and I apologize for that.  I’m usually self deprecating and have very low self-esteem, so writing this will be a big challenge for me, but I feel that it needs to be done.  My therapist recently suggested to me that I start celebrating ALL achievements, no matter how small or insignificant they seem.  I have a really hard time doing that, but this post will be an attempt at celebrating some achievements.  It is my goal to be kinder to myself and celebrate achievements, no matter how small, in the new year.  It’s not a resolution, exactly, but rather a way I’d like to live my life differently in small ways to make it better.

I’m writing this post for a bad day and saving it in my drafts on WordPress in hopes that I will read it and post it when I’m feeling down.  (Author’s Note: I’m not feeling particularly down on the day of posting, but for the past few days I have been incredibly apathetic and haven’t really felt any motivation or felt like doing a single thing, so I thought it would be a good time for me to re-read this post and send it out into the world.) . Today is neither good nor bad, but I’m making an effort to be positive and optimistic in this post.  Last night, I had my dad help me hang the above items above the desk where I write as a reminder that I have accomplished things, even though it often doesn’t feel like I’ve accomplished anything at all.  Even though I didn’t complete my Peace Corps service, I went and I tried and that is more than most people can say.  I even lasted five months before having to come home and it wasn’t really my choice to come home, though I did have a say in whether or not I stayed home and I simply wasn’t well enough to go back to South Africa.  I lived in rural African villages for five months.  How many people from America can say that?  That certificate is signed by the(n) President of the United States, Barack Obama, which is very cool and makes me feel proud.

I did well in both my undergraduate and graduate course work in spite of battling crippling depression, anxiety, and migraines.  I don’t know if you can read it, but that undergraduate degree is from the Honors College at Western Carolina University and it says “Magna Cum Laude”, which means “with great honor” or “with high praise.”  I graduated with my B.S. in Psychology with a 3.802 GPA and with my M.A.Ed. in School Counseling with a 3.944 GPA, so when I look at it objectively, I did very well in School.  I also graduated high school with a 4.3 GPA, but I don’t suppose high school really counts anymore at this point.

I asked for help when I needed it this summer and checked myself into the psych ward even though it was the scariest thing I’ve ever done.  It turned out to be the scariest and the best thing I’ve ever done for myself.  I take all of my medicines as prescribed, go to all of my appointments with my psychiatrist and counselor, and generally work very hard at my mental wellness.  I don’t drink or do drugs, which is kind of a big deal for a person who has Bipolar Disorder.

I advocate for myself with my doctor and therapist when it comes to my illness and my well-being.  I ask questions and participate in my treatment planning instead of just sitting back and letting my providers make all of the decisions.  The three of us agreed training River as a service dog would increase my quality of life, so I’ve gotten River trained (with financial help from a couple of other people).

I wrote three children’s books recently about my service dog, River the Wonderdale.  I submitted them to several agents and a publishing company.  I heard back from the publishing company asking for copies of my manuscripts, which I sent them immediately.  I’m waiting to hear back from them about whether or not they are interested.  I have compiled journal entries and blog posts to use to write a memoir about living with Bipolar Disorder and I start a memoir writing class on January 17th at my local community college.

I stand up for what I believe in and will be marching (or maybe will have marched by the time this has been posted) on Washington in January for the Women’s March on Washington.

Lately, I haven’t been sleeping for 12 hours at a time.  I was going to sleep between midnight and 2AM and waking up around 1PM.  I’ve been going to bed at a reasonable time and waking back up at a reasonable time as well.  This is because of a great new medication I’m taking, but it’s a medication my therapist suggested that I then asked the doctor for, so I’m counting it as an accomplishment.

I guess what I’m trying to say is that there are a lot of bad, dark, scary, shitty things in my life, but there are a lot of light, bright, great, wonderful things, too and it’s time that I start doing my best to acknowledge those and the part I play in bringing them about.

mental health

The Start of Something Old

I didn’t even realize that I wasn’t doing that well until I decided I wanted to post a blog and started thinking about what I would say, but River can tell I don’t feel well.  A few minutes ago, she lay down on top of me and wouldn’t stop giving me kisses.  I know that sentence sounds awkward, but I googled the past tense of lie down and that’s what Writer’s Digest told me it was. My 7th grade English teacher, Mrs. Shope, would know, but she wasn’t available to ask and I wouldn’t want to bother her about such things.

I don’t feel like writing anything today.  I don’t feel like getting out of bed.  So I’m writing this from my bed in hopes that maybe it will help someone else feel a little less alone.  I’m not depressed yet, exactly, but I know that’s the direction I’m headed.  I don’t feel sad or hopeless or helpless yet, but I have barely left my room since Wednesday afternoon, all I want to do is binge watch Homeland and be left alone, I haven’t showered since Wednesday morning (gross, I know, but I’m just trying to be honest and I imagine I’m not the only person in that particular boat right now), and I feel apathetic again.  I wrote something yesterday to post on a bad day, but it wasn’t super long or anything and it doesn’t feel appropriate for how I’m feeling today.  I’m saving it for a self-loathing sort of day and today is just a blah sort of day.  I also shared a thing I wrote for the Peace Corps about my service, but that’s all I’ve really done besides binge watching Homeland in the past two days.

Part of Bipolar Disorder is the hypomania and the mania, where I’m irritable and agitated, everything feels awesome and totally doable/in my power, I feel like I don’t need sleep,  I hear voices and music, I feel like there are bugs crawling all over me, I see bugs and shadows out of the corners of my eyes, I spend a lot of money, I take risks and act out of character, I talk really fast, I can’t stop moving, I have racing thoughts, I have so many ideas I can’t keep them straight, or I start new big projects to name just parts of what can happen while hypomanic or manic.  The other part is the crippling depression that can get so bad that I feel completely hopeless and helpless and don’t want to live anymore.

This is how that starts.  And this is how it will continue for a while until it gets to the bad part or until my medication is changed.  Sometimes it just stays like this for a really long time, sometimes months, and I don’t get to the deep dark bad part, but this part is bad too since I don’t feel like doing anything or seeing anyone and it can last so long if left untreated.  I was supposed to meet up with a friend on Thursday and a different friend yesterday, but they both had to cancel and I was honestly so relieved.  (Sorry/Thanks ladies!) I see my psychiatrist on Tuesday, but I’ve otherwise been doing okay, so he may want me to ride this out and see where it goes.

I’ll do something different today from the past two days.  I’m going to get up, take a shower, get dressed, and go see a movie with my parents, our friends, and River.  In the Intensive Outpatient Program we called it Opposite Action- acting opposite to how you feel like acting.  It’s usually a pretty helpful tool for me.  It doesn’t always work right away, but it’s a good way to gauge when you’re feeling better because you’ll start to notice you’re enjoying things again, which you can’t notice if you aren’t trying any of the things that usually bring you joy or pleasure.  I’m not particularly enjoying things right now.  I’m really just watching Homeland because it’s something to do besides just lie in my bed and I started it and I’m on Season 4 and I feel like I have to finish it.  That happens with me and TV shows.  If I start them I feel like I have to finish them, for the most part.  Book series, too, except sometimes I hold out on reading the last book because I don’t want the series to be over.

So that’s a little update on me.  I hope this lets up soon and it’s possible that it will.  I would normally have just written this type of stuff in my journal, but people seem to be really responsive to the posts I make on here about my mental health and I’ve gotten some feedback that some of my blog posts have been really helpful to people, so you may be hearing from me more frequently than you have been.

mental health

If Only I Had An Enemy Bigger Than My Apathy

As some of you know, I see a therapist each week.  Last Thursday, she challenged me to write about the hopelessness and apathy I’ve been feeling.  I’ve struggled with writing over the past couple of months as the words seem to crawl into my brain slowly, I forget them quickly, and my hand doesn’t want to put them to paper.  Those symptoms, the hopelessness, and the apathy are all pretty classic indicators of depression.  I’m 27, this is not where I thought I would be in my life, and it feels so unfair sometimes.  I feel hopeless about several things, but the big ones are wellness, future success, financial independence, and competence.

If I’m this ill when on medications (I have taken my meds as prescribed since I was diagnosed in 2013 and still had to be hospitalized at the end of May), I can’t even imagine how bad off I would be without meds.  I don’t see a light at the end of this endless tunnel and that’s frustrating.  I don’t feel like doing anything besides binge watching tv shows alone in my room and I’m not getting enjoyment from things I would usually enjoy.  Anhedonia is the word used to describe the inability to feel pleasure, and I’ve definitely got some degree of that going on.

Because I’m not enjoying things and I can’t write much or well right now, progress on my memoir is going much much slower than I thought it would.  It makes me feel like I’ll never finish the book, let alone find an agent or publisher that are willing to work with me and put my book out into the world.  At my core, I just want to make a difference and help other people.  I think the book would be a good way to do that as it would help normalize thoughts, feelings, and behavior for people with Bipolar Disorder, help friends and family members of people with Bipolar Disorder understand the illness a bit better, and offer education for others who read it.  I am also currently feeling like it will never get finished or see the light of day, which is frustrating and makes me feel sad and incompetent.

I’m the type of person who always had a plan for what was happening next in my life, and now I have no idea what that will be.  I have a huge fear of the unknown, which is why I used to plan things so meticulously.  I picked out all of my classes for high school freshmen year.  I declared my college major at orientation.  I knew I was going to grad school a long time before I finished college.  I applied for the Peace Corps a year before I finished graduate school.  Now, life is primarily a large question mark and that is terrifying for me.  Never in my wildest dreams did I think that I would be 27 living at home with bipolar disorder.  I never anticipated that one day I would have legitimate need of a service dog and a daily regimen of medication that includes taking multiple medications three times a day.  This just isn’t where I thought I would be.

In terms of financial independence, I can barely afford everything now living at home and having a car that my parents graciously gave me when I was 17, let alone trying to rent an apartment or house and having a car payment.  It just doesn’t seem like there will ever be a time when I can live on my own and pay for everything I need to pay for.  I can save up some money each year, but it isn’t enough to live on and I usually use it for travel because travel feeds my soul in a way nothing else does.  Some people probably think that’s irresponsible and stupid and a mistake, but traveling makes me really come alive.  Last year, I had alternated between a mixed state and a depressive episode for months when I left for London.  I got to London and the next day started my longest period of stability to date since my diagnosis.  8 months of stability that are at least partially attributable to spending 2.5 weeks in the UK with one of my very best friends.

I used to feel super competent.  I could set goals and accomplish them.  I loved making lists and checking things off.  Now, it’s hard to get one or two things done a day, so forget about a whole list.  I just don’t have enough spoons to do everything I was able to do before the Bipolar Disorder.  Aside from the exhaustion, anhedonia, apathy, and hopelessness, I have a definite pattern of negative thinking going on that’s keeping me down.  It goes something like “I am not _______ enough.  I am too ________.  I am incompetent.  I am stupid.  I am fat.  I will never be ________ again.”  This isn’t how I want to live my life, but I’m having trouble figuring out how I can live boldly, courageously, and authentically while using as little extra energy as possible.  I can’t currently work.  I’m not good at social interactions with people I don’t know well.  My memoir and my children’s book about River the Wonderdale the service dog are promising, but I’m having so much trouble working on them currently that it’s very disheartening.

I know logically that it will be better in the future.  Historically, that has been true.  But my brain and heart aren’t connecting on that at this particular moment and it’s really hard to live my life feeling this way.  I feel so unfulfilled and incompetent and down and apathetic.