Chronic Illness, Mental Health, Phase 3

Goal: 50 by 30

While I am no longer in DBT, during my period working through it I spent some time working on coming up with goals. This was in attempt to come up with reasons to stick around and not give up hope. We were meant to list all sorts of things, but my lists invariably comprised of travel. These kinds of goals are really helpful for me, because they are attainable, fun, and I can never run out of places to see. My main short-ish term goal is to visit, even just passing through, every one of the 50 US states. I’ve already been to 28, and we’re about to add another, with plans for 6 more in the nearish future.

A few days ago I had an urge. My girlfriend is amazing when I get these. They help me navigate what’s reasonable and what’s not. I wanted to just take off on a road trip right then, but they reminded me that while that would be fun, we had frozen groceries in the car. My car also needs some work before it’s roadtrip worthy. Did you know that if the hood latch fails on the interstate, the hood will fly up and not only shatter the windshield, but also bend the hood itself out of shape so much it can barely close? I do now. We’re still yet to fix the hood to be roadworthy, but it works to putter around town. Zip ties are amazing things when you use them right.

Anyway, we went home and began planning. Last year I discovered that I love backpacking and hammock camping, so we decided that getting a second hammock would be cheaper than a tent and that set up (we were barely right). It’s also more space efficient, seeing as we will have to carry everything the whole way, and a whole ass tent would not be fun to lug up and down the trail. Also, freakin’ hammocks. Come on.

There are several states right nearby that I haven’t been to, and figured this would be a great excuse to do so. However, after some research, I realized that it’s still cold in Michigan and Minnesota right now, so the original itinerary is going to be postponed. The original plan was about 30 hours of drive time, hitting, in order, Wisconsin, Michigan, Minnesota, North Dakota, South Dakota, and Nebraska, backpacking in Michigan.

Instead, we’re going to go backpacking in Arkansas, then going down through Louisiana (state number 29) to Florida, where we plan to go to the beach under the full moon.

With COVID isolation for almost 3 months and only working at home, I’ve lost a lot of muscle mass, so I’m apprehensive about how my stamina will be on this hike. The last time that I went on anywhere near this long of a trip was almost a year ago. We plan to make a slower pace. I found this to be incredibly important on my last long hike. There’s no destination, you’re just walking for the sake of walking, no reason to wear yourself out by booking it. We also got two different style and shape backpacks, so when one gets uncomfortable, we can swap. I made sure to get trek sticks that were tall enough for me, even though the trail isn’t all that rough. Trying to take into account my abilities and instabilities, experience with this kind of activity, and the general attitude I’m approaching the hike with has been really helpful in alleviating my anxiety.

Some time in the next month I will hopefully be posting about backpacking as a semi-disabled person.

Chronic Illness, Mental Health, Phase 3

Chronic Illness in the Face of Pandemic

It’s been a while since I was able to write. Immediately after rebooting my website my life fell apart. My girlfriend had moved in, and it felt like things were going to finally be ok. We joke that we had a normal life for 5 minutes. Due to certain plans falling through, we ended up homeless and couch surfing for a good month and a half before finding a friend to stay with short term. After that, we had to be separated, them living with a sister, and me living with my parents. This was torturous. My mental state began collapsing around me, and to top it all off, I had to stop going to therapy. Also in this time, I had a car accident, failed to appear in court and got arrested. That’s right, ya boi is an ex-con now. I was in the lockup for 2 whole hours.

Now, things are– ok. It’s not the best situation; I’d much rather be living in our own apartment, but at least we can be together. I’m still not in therapy, and it’s getting harder and harder to cope.

On Halloween I was diagnosed with Psoriatic Arthritis, a complication of psoriasis. Having a name to put with my debilitating joint pain and fatigue was unbelievably relieving. I’m still in a great amount of pain, but at least with my medication it’s not getting worse. Psoriatic Arthritis is an autoimmune disorder, and as such puts me at a higher risk of getting sick because my body has decided that attacking itself is a better idea than attacking microorganisms trying to make a home in my body. The most common medication, and the one I’m on, also suppresses the immune system. So needless to say, I’m effin’ terrified of getting sick.

Enter COVID-19.

As of writing this, I’ve been in isolation for 45 days. It had been ok; I prefer to stay home most of the time anyway. This week though– this week has been hard. Both my BPD and arthritis are acting up (I guess because they’re bored), making me a miserable, sore mess. I had an argument with my Love, and haven’t been able to clean at all. It’s not usually an issue, but one of my other conditions is agoraphobia. I’m usually ok with leaving home with only slight anxiety. I’m usually totally happy to drive my Love to work. But nothing is as usual right now. The world is upside down. All my fears are legitimate. Usually my fear that the world is trying to hurt me and those I hold dear is unwarranted. These are unusual times. The world could kill me. It’s killed nearly 200 people in my state alone.

The worst part of this pandemic, for me personally, is the mental toll. Not only the ramifications of being in isolation for over a month, but also seeing people’s reactions. When I go out for some essential reason and see people who aren’t wearing masks or aren’t wearing them properly, it is a visual example of how many people simply don’t care about folks like me. They don’t care that they are exposing themselves and everyone around them to this virus. They think that because a healthy person can fight it off, they are safe. When I read about people complaining about the shutdown, all I can see are people who care more about money and appearances than my life.

Don’t tell me I’m overreacting. Don’t tell me everything is going to be ok. Don’t tell me that my daily anxiety and panic attacks are unnecessary. Don’t tell me anything. Just let me sleep.

Mental Health, Phase 3

Living on the Border[line]

As I said before, one of the most disheartening things to discover after getting my diagnosis was how little information there is on what it’s like to live with Borderline Personality Disorder from day-to-day.

Welcome to my life

The usual disclaimer, this is just my own experience and understanding, I am in no way a professional. I have several comorbids, most prominently ADHD, Depression and Anxiety. I do also have PTSD, but it’s been under control for the most part and the ways that it affects my life at this point are mainly faulty wiring and memory problems.

In therapy we put a lot of focus into finding the causes of my feelings and actions. Certain things act as “vulnerabilities,” meaning they make me susceptible to my less affective coping skills. That’s shrink talk for bad. These are the things that I do that don’t actually help me, or end up hurting me. The most obvious of these are the ones that leave scars, but I’m learning that there are plenty of other things I do that fall in this category. When I push people away, pick fights, willfully neglect my needs, or purposely trigger myself, I’m not coping affectively. I’m still learning about my vulnerabilities, but I know that alcohol is one of my primary ones. I don’t have problems with addiction, but rather I have to be in a very good mood otherwise I get incredibly depressed and hopeless. Because of this, and other reasons, ours is a reasonably sober household, aside from the occasional celebratory bottle of wine.

Fasten your seatbelts, it’s gonna be a bumpy ride

One of the earmarks of BPD is emotional instability. Some people try to describe it as being an emotional burn victim; every touch feels like a slap. I prefer the simple, it’s like bipolar, but faster. The term and disorder bipolar are more understood than BPD (which isn’t saying much, but still), but instead of the weeks of up or down, a borderliner will feel it in minutes. It’s exhausting. So much so, that I developed a numbness to everything. It makes sense that my brain would do this. I live with chronic physical and emotional pain, so the only way to function is to ignore it. But that doesn’t work long term, and I’m feeling the effects of it daily. I didn’t notice so much of my deterioration that I have several joints that won’t move and now might be at risk of nerve damage, but I don’t know for sure because getting into a doctor to establish care takes a month or so unless you’re really lucky and there’s a cancelation. I can deal with the physical though. What breaks my heart is that when I come home and see my beautiful girlfriend, who I know for a fact I love deeply, sometimes I feel only the whisper of emotional love.

Over my life, it’s proven safer to leech off of the feelings of others instead of having my own emotions. My theory is that this is why I developed into an empath. My own emotions are both unpredictable, and in the past, unacceptable, so it makes sense that my brain would rewire a network to accommodate. Like most maladaptive coping skills, it served a purpose at one point. My intense empathy has kept me out of trouble, and it still makes me a kinder person. Because I not only sense other people’s emotions, but feel them as my own, I’m good at validating and giving advice. This comes at a cost, however. If someone gets angry at me, I tend to fall into a pit of self loathing. Sorting through what is mine, what is someone else’s, and what I feel on someone’s behalf is a task that takes focus and active intent, and it’s exhausting. You would think that because so many of the emotions that I carry aren’t cohesive that it would be easier to sort out which ones are actually mine, but thanks to borderline ANYTHING CAN HAPPEN. Have I mentioned how draining it is?

Having relationships, platonic, familial, and romantic, with numbed but wildly fluctuating emotions is hard. I want things, but sometimes I can’t tell if I want it or just want to want it. The intense fear of abandonment tells me to do my worst and drive everyone away; we all end up alone anyway, right? Then I remember how lonely I’ve been before and how much better my life is now, and I use any bit of energy I can find to keep the urges at bay.

I’m tired.
Mental Health, Phase 3

Hello, Old Friend

It’s been a while.

A lot has changed. I’m not writing from my parents basement; I have my own apartment (well, with roommates). My long hair is gone– and what’s left is purple at the moment. Last summer I worked out of state for an amazing theater company in West Virginia. I’ve got a new string of mental diagnoses, and I’m medicated and in specialized therapy for them. Oh, remember how lonely I was and how much I wanted to be in a relationship? That happened, er– is happening, and it’s hard and wonderful. Maybe I’ll write about that some day, but that would have to be a conversation with my partner first. That’s something to get used to; I’m no longer a free agent, but being with someone who loves you is so deeply freeing. Life’s a paradox.

After spending days on end unable to get out of bed, missing work and class, I finally realized that I need to use all the tools in my box, hence, the resurrection of this blog. Since my website crashed a few years ago, I haven’t really written or journaled much, even though it is one of my most cathartic outlets. Getting the thoughts out of my brain, whether by talking or writing, helps me to process them. Having them in a place where others can see helps me feel validated.

This blog has gone through so many phases. When I was young it was literally just cat pictures and what I had for lunch. Most of those posts are hidden. You really aren’t missing anything, the pictures probably don’t work anymore; they’ve been imported and exported so many times through so many platforms. The last phase was one of self discovery, and I’m so incredibly grateful to have it documented here. It’s a real life coming of age story, recorded in real time. However, this next phase will more structured.

Like any good millennial, after receiving the diagnosis of Borderline Personality Disorder I took to the internet to find more information from people who live with the disorder. Every now and then I look again, but my searching still comes up with essentially nothing of value. There are a plenty of tumblr blogs and meme pages, but nothing of substance. Don’t get me wrong, I spend literal hours looking through memes. But there’s a lack of balanced, informative but personal content about what it’s actually like to live with BPD.

I mentioned this to my therapist a few weeks ago and she posited that I create my own content. So here I am. Not to be dramatic.

Musings

Pieces: Supposed to Be

Note from 2019 Annie: This is a post that was completed but for some reason was left in the drafts folder, so I am backdating it to the approximate date that it was written. This is unedited.

Tell me who I’m supposed to be now
Make me better
I can’t stay halfway dead forever
I fear now
There’s not much left of me
When you take the sick away
Who am I supposed to be?
Supposed to Be, Icon for Hire
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Anniversaries are important to me. Every now and then I go back through blog posts and read what I wrote a year ago on a certain date or time of year. This spring semester has been full of that kind of nostalgic activity. My Papaw died at the end of February. Looking back and remembering how genuinely sweet and gentle of a man he always was helped bring peace. But not all of my reminiscing has been as tranquil. When I wrote the first blog post about my childhood I don’t think I really had come to grips with how far reaching the indoctrination of that stifling, poisonous environment was. 

While I started opening up about my mental health struggles and eventually seeking help to deal with them, that wasn’t the only aspect of my life that was exposed last March. It was one year ago that I began coming out as– well, not straight. This probably won’t come as a surprise to most people; I haven’t been very secretive about my sexuality and identity. The exact terminology is a bit fuzzy, and the way I identify varies. Sometimes I’ll say biromantic lesbian, other times the term bisexual comes to mind. Exact labels don’t really matter to me. While there are a select few guy type people that I find attractive, I like girls almost exclusively and the general public really doesn’t need to know more than that. I would say they don’t need to know at all, but there’s a problem with that and it’s something I’ve been thinking about lately.

Invisibility is incredibly painful.

Not only is invisibility invalidating, it’s isolating. It isn’t good for me to be left to my own devices; they can be pretty nasty. Much like keeping my pain and past hidden left me feeling imaginary and craving realism, being completely in the closet didn’t last long. I started figuring out my feelings and it became obvious that hiding that part of myself indefinitely was not a viable option. When I first started going to meetings of our campus LGBT club I snuck in, careful that none of my friends saw me. Gradually, those meetings and other events became the majority of my social life. One year later, I’m the vice president of that club where a confused and scared Annie first found acceptance as a queer girl. I could, and probably will, write more about how I had accepted myself as queer as a young child, then forgot about it, but that’s not what this blog post is about. I want myself to be known for the same reason I blog at all. I share so that others can know they aren’t alone.

This year has been my hardest one in memory. At times it feels like I’ll collapse under the pressure and stress of resurrected memories and ideologies that have nearly literally killed me. Like so many other parts of myself, my self inflicted scars are more visible now. When you are taught from infancy that you deserve death, it is hard to come in as an adult and feel that you deserve not just life, but a happy one. Rewriting those recordings isn’t as easy as just swiping a magnet over the tape.

Yet, when I look back at those writings from last year, I can see how far I’ve come in so short a time. It hasn’t been easy, but I’m not as scared of relationships and have allowed myself to be more open to being loved.

Recovery time, a condition like mine
What are we talking here?
Getting so close, I can taste the hope
But I still feel the fear
Supposed to Be, Icon for Hire
Musings

I’m Not a Midwife

When I was 9 years old my first brother was born. I was thrilled to be designated official videographer of the homebirth. After all, that obviously put me at the same rank as the actual photographer, and he was a wicked cool guy with an amazing camera. “Click,” as 3 year old Claire called him, wasn’t the only person at the birth I was taken with. Miss Kathy, the tattooed, motorcycle riding, short little grandma midwife whose house my parents practically lived at for the month of February. I decided that I wanted to be just like her. She is kind and gentle, but also strong, physically and emotionally.snail

For the next 9 years I would grow more and more passionate about my eventual career as a midwife. Since Mom had started working as a lactation consultant again when I was finishing high school, I was already in position to start studying. For the last two years of high school I was around midwives, doulas and other birth workers, attending homebirth classes, first with my Mom, then by myself once the teachers knew me better. This wasn’t just some passing fancy of a teenager; I had my apprenticeship worked out.

The first step was to become a doula. The August after graduation I enrolled in a birth doula training course. It had been said that this was where most potential midwives were weeded out, but I was determined that I wouldn’t be one of those undedicated, dispassionate students.

But I was. And at the same time, I wasn’t.

I finished the training, but afterwards I didn’t even attempt to continue with the certification. Throughout the class my passion, dedication and adrenaline had heightened. I was learning a lot, but most of it was only a continuation of things I already knew. It was easy for me. Then, near the end of the week, we had a session on working with abuse victims.

On the way home that night I sobbed.

It wasn’t only because of the emotional drain of talking about abuse all day. That had been fine at the time. I cried because I knew I was done. The road was taking me elsewhere and the destination wasn’t at all where I had expected. I couldn’t exactly put my finger on why, but there was a sense of completion. What needed to be learned was learned. I didn’t know it for a long time, but I have come to realize that this was the beginning of my journey to reconciling my past with my mental health, and beginning to seek healing.

The next 6 months were tumultuous. It was too late to enroll at community college, and I wasn’t sure if I wanted to do that, or if I was smart enough. What was my purpose? The passion I had felt was real, I have no doubt of that. It just didn’t lead me down the path I originally thought. Finding its location has been one of my missions this past year, and I still don’t know exactly where it is.

I’m halfway done with my second spring semester. There are still plenty of things I’m unsure of, but I do know that going to school was the best thing I’ve ever done. I’m a completely different person than I was, even only a year ago, and I’m a much better version of myself now. But if I were to be truly honest, even with the reinforcement of an invitation to the honors society and a job in the tutoring center, I often feel that I’ll be found out to be an idiot at any moment. I just finished my application to study theater tech at University of Central Missouri some time in the next year. There are a lot of things I don’t know about, but underneath the insecurity, depression and anxiety, I know moving forward is a good thing.

I still want to be like Miss Kathy. I want to be strong and kind. I want to inspire; to change people’s lives for the better. I want a little girl to look at me and say, “That. I want to be like that.”

I know I’m not a midwife. I don’t know everything I am, but I do know that I am a storyteller, a collector, a writer, and a teacher.

Uncategorized

Big

I really hate the predictability of writing a post like this at the end of December. It’s so cliche, and so not me (she said, her voice dripping sarcasm). I get more retrospective on my birthday or the beginning of the school year than around New Year’s. The fact is, I’ve been working on this post since August. I’ve started and stopped at least three times.  There are so many drafts, on all different topics, just sitting on the virtual editing table. Some of them may eventually be finished and published, some may just gather cobwebs. I’ve actually been writing more in the past few months than I have in a long time, but most of it has been journaling.  I’m probably going to continue focussing on journaling for a while, but I felt like saying a couple of things here.wheresanniebw

This year has been– I can’t really even think of a way to end that sentence. It has been, at the same time, the hardest and happiest year of my life. When I posted in March about my depression, I really didn’t comprehend what that realization meant. When your foe is invisible you don’t realize how big it is; you aren’t as scared of it, but it’s more dangerous. After you see clearly what it is, you’re more able to be afraid of it,  but also more able to fight it. I’m still
depressed, and I’ve lost a lot of weight because of it, but I’m getting help and finding ways to cope. I’ve had self harm relapses, some of them have been pretty bad ones, but the shame that kept me in hiding has lessened. Learning to let go of old ideas and relearn who I am and what I want has been my focus this year, in a way.

School has played a huge part in my life. The post from my first day on campus is almost funny now. For one thing, the gamers are my friends and I can hold my own in a game of Super Smash Bros. I’m pretty sure I remember seeing the person who is now one of my best friends playing that day. Most surprisingly, I’m vice president of one of the most active clubs on campus, and have somehow managed to be on the honors list every semester I’ve been here. The club means so much to me, and a little over a year ago I wouldn’t have even joined. The members have grown to be my friends and often call me mom (especially if I know they have a test coming up). If you had told me at the beginning of last fall that I would not only be considered a good student, but also be elected vice president of this club, I would likely have laughed in your face.

I think I know how to end that sentence now. This year has been big.

Musings, Poet Among Other Things

Awareness

Last week I opened my email to find that one of my pieces had been selected as the winner of a poetry contest I had all but forgotten that I had submitted to. (Again, actual content is forthcoming, I have two drafts in the hopper at the moment)

My heart is filled with churning emotion
I don’t understand
A longing
A drawing
She’s calling to me
I must answer
Frantically I search for–
What?
Wandering among her branches and leaves
Finding a place of rest
The air is cold everywhere but here
My body is weak and tired
I lie down

Everywhere my back meets her surface
A warmth surges through me
Her grasses hide my face
Invisible to all but the lights above
And those lights
They sparkle and crackle
They whisper secrets

Faraway lands, they sing of
Lands of light and color
Where lights and sound swirls together
In an ethereal dance
I long to see those lands
A drop slips down my face
“Let me catch it!” a light cries
It leaps from its dark home to mine

I feel arms wrapping around me
Invisible bands holding me down
Not just my limbs
My every fiber becomes part of her
I can feel the pulse of my every cell
The air rush and fill every corner of my lungs
My mind, firing and processing
Then I become aware of her

I feel her move beneath my skin
The rotation that lasts beyond memory
Speed unimaginable
She has seen so much
She knows every secret
We commune and she tells her stories
Every foot that has passed over this spot
Every paw that ever will
She tells me her hopes and dreams
Her pain and woes
We share burdens and they lighten
I spread my hands and feel her surface
Intertwining my fingers in hers
Touching one so old and infinitely finite

The parliament across the meadow begins
They call to each other and to me
Asking probing questions
“Who, who?”
“I am Earth.” I respond
“How, how?”
“We are One.” I reply

Poet Among Other Things

Contest Blame

Perhaps I’ll have an actual post eventually. For now, life is busy; school has started again and I’m heavily involved with some campus organizations doing great things, I’m working through some things and learning a lot about myself. I was reading through some old journal entries tonight and found this from a few weeks ago. The things you think of in the shower…

Contest; v. to argue against, dispute, call into question

Up far into the night
Try to sort through my heart
Try to still it’s restless churning
Still it doesn’t make sense
Though I try as I might
My whole soul feels as though it is burning

I lay out the pieces
Connect all the dots
Fit together a past for myself
It looks broken and shattered
And I bleed where it cuts
Is this really what’s best for my health

And how can I move on
I don’t know what is real
Scars as invisible as they are deep
But they still mar my soul
Break what’s left of my heart
Lose my mind as I also lose sleep

They shouldn’t still sting
It was all in your head
Says the shrill voice as it tries to shame me
Says my feelings aren’t real
Wrong for this reason or that
Causing more hurt with all of it’s blaming

It’s alright to hurt
It’s alright to feel
That sharp, impish voice is a lie
Sure some have it better
And some have it worse
But pain isn’t a race
You don’t have to be first

Memories; a life I left
I can’t remain the same
I must move on
Accept myself
Stop trying to place the blame

Musings

Creativity in Hindsight

Sometimes you don’t really understand what your art means, or why you make it at all. But that’s the thing about being a creative person. You can’t stop making things just because you don’t understand them. When I wrote Volumes of Rows, I didn’t realize that what I was describing was probably dyslexia. That swimming around before the words are finally stationary long enough to convey their message is what goes on in my head every time I try to read. It’s as if the characters are on a rubber band that bounces away and back in the millisecond after my eye touches it. I didn’t notice this until recently, but it’s comforting to have an explanation of why I read so slowly, have a hard time with spelling and punctuation, and trouble doing basic arithmetic.penandink

When I’ve explained what I see to friends, the general reaction is something about how terrifying that must be. The first time I heard this, I laughed. It never occurred to me that vision problems were scary; they’re part of my reality.

But reality can be a scary place. Some of us don’t even have to read the news to see that. Some of us just have to remember. I’m still undoing years of brainwashing and manipulation. There are parts of my self, my personhood,  that I have such a hard time accepting because of what I was raised to think and feel about my body and role as a woman. I’ve felt overwhelming embarrassment when I see a picture of myself that shows some evidence of boobs, or even one that simply makes me look good. The amount of shame I felt after going out with friends and dancing with an attractive stranger left me in a state of extreme anxiety for weeks, resulting in more than one minor anxiety attack (one at rehearsal, in front of the whole cast of about 30). Processing my adolescence is taking much longer than I had expected. I keep finding myself upset about things that I thought I had gotten over.

Creating helps. Writing isn’t something I choose to do, it’s something that happens. To be honest, sometimes I hate it. It burns. It feels like drawing a long thread out of my diaphragm, and looping it into letters and words and thoughts. Both the exit wound and where it contacts my fingers feel as though they are being rubbed raw. But I have to do it. To leave that thread in place would burn even more; eventually eating me up from the inside out. When I journal I don’t know where the entry is going. Most begin with something about how I don’t know what to write or how to articulate my feelings. Journaling is cathartic. Writing poetry helps me articulate my emotions that I’m still trying to accept. I create to find out what I feel. And I share some of what I create to validate my feelings and those of others whom have had similar experiences. But I can’t share unless I create in the first place. “You don’t have to see the whole staircase, just take the first step.”