Posted in chronic illness, mental health

Having to Stay in Bed Isn’t “Lucky”

Recently I was with a friend when this happened:

Me: I have to go home soon and lay down.

Them: Lucky! I have to go to work. I wish I could just lay in bed all day.

What I wanted to reply was “Alright. Want to trade places? You can have my pain, chronic fatigue and inability to do even the most basic of tasks, while I get to work full time and be independent.” When I’m laying in bed resting, I feel anything but lucky. I hear the cars go by out my window, planes flying overhead, birds singing… but I’m stuck in bed. Majority of the time, I’m actually stuck in bed. I have a chair by my bed to use as an assistive device to help me stand up because on bad pain days I can’t hoist myself out of bed on my own. I take 17 pills at night. I have to monitor my blood pressure. I have at least one doctor appointment a week. I walk with a cane. Life with chronic illnesses is not easy, nor is it something to be jealous of… is it cool that I watch TV, read and play video games all day? Yeah, I guess so. But the whole thing is tainted by pain, nausea, discomfort, rambling thoughts, and sickness in general.

To get an idea of what an average day feels like for me, imagine these steps:

  • Get a severe sunburn all over your body, every time you wear a shirt or pants it is painful.
  • Overwork your muscles so you’re incredibly sore.
  • Don’t sleep for 48 hours.
  • Headbang for 10 minutes every hour.
  • Turn on every light you own and point them all at your face.
  • Get the flu (and never get healthy again… just always have the flu).
  • Electrocute yourself so your muscles twitch and you get sharp, shooting pains.
  • No matter how you sit/ stand/ lie down, you are always uncomfortable.
  • Cover yourself with something that makes you itchy… don’t take it off.
  • Go to the bathroom at least every 90 minutes, for 5+ minutes every time.
  • You can’t eat anything. Hungry? Too bad. Drink some baby food and hope for the best.
  • Tie cement blocks to your wrists and ankles.
  • Wear a snowsuit 24/7 so you’re always overheating.
  • Spin around 10 times whenever you stand up.
  • Eat all the beans you can and deal with the toots.

Now, try to clean the house, go shopping, work… live your normal life. That touches on the surface of what it feels like to be trapped inside my body… still think I’m lucky? Didn’t think so. I’m not being lazy, this isn’t fun, and I assure you that you don’t want to trade lives.

Posted in mental health

How I Became Cut Free

Today I am 2 years cut free. I am going to refrain from going into details on the behavior in this post because I would like to keep it trigger-free so those attempting to stay cut free can read how I did it. Obviously, this won’t work for everyone, but this is how it happened.

My cutting had become completely out of control, and staying in psych wards and having coworkers try to keep me accountable wasn’t working. In early 2016, I moved in with a family who was incredibly supportive and understanding when it came to mental health. It was my hope that living in a supportive environment and with people my own age would help me feel less alone. They hid all the razors and knives, which was very helpful. A week or so after I moved in, I was approved to go live in a mental hospital (Rogers) for a few months. Panicking, I cut one last time with my hidden razor, not knowing when I’d be able to participate in the behavior again.

While at Rogers, I stayed in the most suicide and self-harm proof building I could have ever imagined. So for my first 60 days of my journey to clean arms, I didn’t really have a choice to be clean or not. I realize this isn’t always an option for everyone, but hopefully even staying a week or two in your local psych ward can help kickstart the process. Being forced to stay clean while learning all sorts of effective coping skills was key. My favorite coping skill that I learned involved a frozen orange. While at Rogers, I still had self harm urges. When these urges arose, I went to the unit freezer and grabbed a frozen orange. Using my fingernails, I would carve into the orange’s skin. If I carved deep enough, the juice would squirt out (same concept as the behavior I was trying to stop). Because it was frozen, it provided pain in a safe way. The scent that the juices admitted was also very grounding and helped when I was dissociating. There were always at least two frozen oranges, and they got daily use on the unit. I would also write on my skin with red markers. By the time I was discharged, I was feeling a sliver of hope that I could be cut free.

For the first four months after discharge, I was living in that same supportive home. For the first month or two, razors were hidden and knives were stowed away. There was always an orange in the freezer for me. I had a safe environment where I could get support, day or night. It was hard, I’m not going to lie. At this point is still had a razor hidden away, and I justified it as being “just in case” and didn’t tell anyone about it. If I thought about having to go a whole day without cutting, I would focus on just trying to make it through the next hour. When that hour was over, I challenged myself to make it through another hour. Eventually, the hours turned to days, and the days to weeks. I would reward myself every time I met a goal, no matter if it was a day or a week or whatever. I’d have a bowl of ice cream, or I’d buy a bracelet or something. The longer I went without cutting, the bigger the reward.

When I started having bigger goals, like 100 days or every few months, I’d celebrate with bigger things. I’d get a build-a-bear or even a tattoo! I tried to reward myself with experiences, rather than material objects that could break or get lost. I’d drive out of town and explore places I’ve always wanted to explore, but they were always too far away. Or I would go golfing with a friend or buy a new book to get lost in. At 300 days clean, I finally threw away my hidden razor for good. As time went on, the thought of going a month without cutting seemed feasible. It wasn’t until recently that I could think about never cutting again without getting overwhelmed and discouraged. I still take things one day at a time. It’s been a long, difficult journey, but I did it, and so can you.

Posted in bpd, coping, diagnosis, mental health, stigma

Being Invisibly Ill

I deal with 14 invisible illnesses every day. If you saw me on the street, I wouldn’t look sick. I wouldn’t look disabled. My illnesses are internal. Because of this, I often deal with the fear that I won’t be believed when I call in sick to work or cancel plans. In my past, there was a myriad of situations where I was made out to be exaggerating or lying. I once had a mentor say to me: “It’s not that I don’t trust you, it’s just that I don’t believe you anymore.” There were a couple times I was admitted to the psych ward for suicidal thoughts/ attempts, and either my support group or even DOCTORS would doubt my suicide attempts as being real. As a result, I tend to overexplain everything (often to the annoyance of whoever I’m talking to). I sweat the little things and feel like I have to defend everything that comes out of my mouth as truth.

So when it comes to my illnesses, the same fears apply. Mentally I struggle. I’m either manic or depressed because of my bipolar. My emotions are four times as strong because of my borderline. I’m obsessed with the fear of harm coming to myself or others (OCD). I worry about everything (anxiety). I avoid and restrict what I ear (eating disorders). I live in a near chronic state of feeling traumatized (PTSD). My head is always spinning. My stomach is paralyzed, so I’m on a strict diet and am currently malnourished (despite being ~200 lbs, so I don’t look like it). This basically makes me feel like I’ve come down with a bad case of the flu 24/7. I suffer from chronic pain in many places, sensory processing issues, cysts on my ovaries and pre-diabetes. With these things and everything else I have going on, there is never a day that I feel like healthy. It is almost impossible for me to participate in everyday life activities. When I work a 3-hour shift (the maximum amount I can work per day as determined by doctors), it feels like I worked a 9-hour shift (which I used to do before I got sick). I can barely get out of bed for the rest of the day. Laundry is a daunting task that I usually have to span over multiple days by washing on one day, drying on another day, folding and putting away over the next few days. I’m lucky if I can shower once a week. The pain builds when I cook food to the point where I’m in too much pain to eat what I cooked, and have to stick it in the fridge for later. Same goes for grocery shopping. I usually do it late at night so I can sleep off the pain after completing the task. I’m sick, and it rules my life.

I do my best to live life to the fullest despite being sick. I carefully plan out my week so I have at least 2 days a week where I don’t have any commitments, so I can lay in bed all day and recuperate. I’ll watch TV, write stuff on my laptop, play video games or read a book. I light a candle, use baby wipes to keep myself clean and drink lots of water. I know that if I work, I won’t be able to do anything for the rest of the day. I try to plan fun activities, like board games with friends, after a doctor appointment that might be difficult. I call friends and talk to them on my days I’m stuck in bed. I do my best to be happy.

Even with all of this, I still struggle with the fear of not being believed. I loathe calling in sick at work, in part because I love my job and hate missing it, but also because I’m scared my coworkers won’t understand. Recently all three managers were sick with chills, fever, cough, etc. but they all still came into work. I felt especially useless calling into work sick during that time. I felt like a wimp because they were toughing out their sickness for work, while I wasn’t. Images flashed through my head of them complaining about me being weak. It was a challenge for me to remind myself that their sickness was different than my sickness.

Living with any illness, visible or not, temporary or chronic, is a challenge. The flu is a marathon. Chronic illness is like eternal back-to-back marathons. Not having anything visible to identify to strangers that I’m sick is a struggle that I deal with every day. I’m constantly trying to prove to my coworkers that I’m sick (even though they are lovely and don’t actually need proof). Having a medical ID bracelet is helpful for me beyond just the practical use for first responders. It helps me feel validated, and it’s visible proof that I’m sick. I feel validated when I look at it. I deal with invisible illness every day, and I learn something new every day. It’s a challenge, but it’s my challenge.

Posted in Anxiety, mental health, Uncategorized

My Biggest Fear

As each day passes that I’m battling all my mental and chronic illnesses, the more I feel convinced that I’m never going to find a partner. Each night I sit with a cold wash cloth on my head while on the bathroom floor puking my guts out, the only question in my mind is “why would someone sign up for this?” As I sit in the hospital for hours hooked up to an IV pole every week I wonder “who would willingly get to know me as a potential date with IV scars all over her hands?” Or “Someone who wakes up sweaty and screaming from nightmares?” … “Someone who takes lots of medication and has multiple doctors appointments every week?” I’m not looking for someone to “save me”and I’m sure as hell not looking for a caretaker… I’m just looking for someone who will be there on my good days, but also on my bad days. I want a best friend who will make me laugh when I’m sad and be there when I need to scream and cry. Someone who will go on adventures with me on the good days. And even the not-so-good days. I’m just scared that being my partner is asking too much. And I’ll be all alone. I know there are people who stick by their partner when they become sick… but what happens when someone’s sick before the partner is in the picture? I’m so scared I’ll be dismissed before I even get a chance to say “hi!” I’m so much more than my illnesses. My whole life I’ve been paranoid that the people who love me secretly see me as a “project” or as something to make them feel better about themselves. I mean, who doesn’t love the saint who supports the sick girl? I’m scared that if I recover, they’ll leave cuz they succeeded, but if I don’t recover, they will see that their “project” is a failure and take off anyways. So even IF I somehow happen to find someone, who’s to say my paranoia won’t get in the way? Or my borderline? Or my chronic pain? Doctor’s appointments? The list is endless! I feel like a liability. Like I’ll end up alone. I’m good at saving myself. I just wish I had a cheerleader of a partner.

Posted in coping, Depression, diagnosis, ED

A New Chronic Illness

Hey everyone! I apologize for the month-long wait. I was diagnosed with a new chronic illness last month and I’ve had to direct all my energy into staying afloat. So that’s what I’m choosing to write about today.

I was diagnosed with gastroparesis. Basically, my stomach is paralyzed. It doesn’t work anymore. I lost a lot of weight in a short amount of time and became malnourished despite my best efforts to eat. About once a week I’m told to go to the ER to make sure I have enough fluids in my body and to check my levels. I get iron infusions once a week at the hospital. My barf bucket is my best friend. My muscles twitch, fail and even the slightest pressure makes them feel like I’m being stabbed with a knife. I sleep for 12 hours, go to a 1 hour appointment, and need to take a 5 hour nap afterward because I’m so fatigued. This past month I’ve had to learn through trial and error what I can and can’t eat (error meaning puking my guts out all night and/ or severe pain). I’ve had to walk with a cane or a walker to make sure I don’t fall. People had to do my grocery shopping at first because I was too weak. Having gastroparesis (GP) is already a huge learning curve, and I haven’t even met with my main doctor for a treatment plan yet. For the past month, I’ve had to find ways to cope until I can actually get a treatment plan.

To say I wasn’t ready for GP is an understatement… but the more I think about it, who is ever ready for a life-changing illness? I played doctor as a kid. I used to pretend I was dying in the ER to help me lay still when I was trying to fall asleep. My mental illnesses used to be suppressed and I thought I was destined to a life in the hospital because I was so sick mentally. I would even dream of living in a psych ward. I never used to mind going into the hospital. Now I get incredibly distressed simply getting a bad of fluids in the ER. I’ve had to surrender all control to my body and I’ve never felt more sick, or more helpless. A lot of people with GP end up getting a feeding tube, either permanently or temporarily. I already can barely cope with weekly infusions. I’m terrified of whether or not I have the ability to cope with a feeding tube. Or surgeries. Or whatever else GP treatment throws at me. I’m not coping yet… I’m barely hanging on. I know that I will learn to cope. I will learn to do more than cope. I will learn to live. Just like I did with my mental health. It took years for me to effectively cope. I’ve only known I’ve had GP for a month. It’s going to take time. This article was originally titled “Coping with Chronic Illness” but halfway through I realized that this article isn’t about coping because I don’t know how to cope with this yet. But my blog is dedicated to helping the invisible become visible. This is my story. My invisible journey.

Posted in mental health, PTSD, stigma

#MeToo

This is my experience dealing with the aftermath of sexual assault. Although I do not go into any detail over what happened and solely talk about what happened afterward, I’m placing a TW:
TRIGGER WARNING This article or section, or pages it links to, contains information about SEXUAL ASSAULT which may be triggering to those who have been sexually assaulted or are sensitive to the topic.

Kindergarten. 5 years old. An adult acquaintance. Too young to even know what was going on.

Third Grade. 8 years old. Perpetrators were classmates, no one believed me because how could an 8 year old do something like that?

Last summer. 21 years old. Durning a massage. Was told by an acquaintance afterward: “Why didn’t you enjoy it? I’d love to have a massage therapist make a move on me during a massage!”

The 24 hours after I was sexually assaulted last summer was probably one of the worsts day of my life… and speaking as a mentally ill kid who’s suffered abuse from friends and strangers alike, I feel as though that’s saying something. I was sexually assaulted during a massage (not at the spa I worked at the time). It was a Monday. I spent the rest of my day in denial. I kept telling myself it was an accident, or that it was all in my head. I actually had a good rest of my day hanging with some close friends. But when I slowed down my brain enough to get ready for bed, reality came crashing back down. I cried harder than I’ve cried in my life. For the first time in over a year, none of my coping skills were working. I couldn’t lay down to go to sleep without an intense fear that it was about to happen again. I wanted to believe it wasn’t assault. I called the sexual assault hotline and talked to them. They assured me it wasn’t all in my head, and that what happened to me was definitely assault. They explored my options with me before hanging up. I had a plan. I was going to go to my therapy appointment the next morning and have my therapist help me report the assault. But my appointment was still a whole 12 hours away. None of that helped me now though. I called my best friend to tell her what happened. It was 1 am by this point, and we couldn’t talk long. It helped to have someone know what happened and have their empathy. After a couple more hours of failed attempts to distract myself with self-care and coping skills, I called my other friend out of sheer panic and fear. I was in hysterics at this point in the night. I could not come to terms with what happened… even in the weeks following I found myself unable to cope with the idea that this man had done such a terrible thing to me.
When it finally came time to go to my therapist’s office, I was beside myself with anxiety. When the police arrived at her office, I found myself face to face with a male officer. I hadn’t thought about it until that moment, but I didn’t want to spend the day with a male stranger… last time I was alone with a stranger he sexually assaulted me. I don’t know how, but I was able to make the report. The officer proceeded to take me to the hospital to meet with forensics where they were going to extract the massage therapist’s DNA from my body. It was a very traumatic experience. Having PTSD from prior trauma, I knew I was familiar with the fight, flight or freeze experience. But until that day in the forensics room, I had no idea just how frozen one can get. On the exam table during the procedure, I completely froze. I couldn’t move even if I tried. I laid there for at least 5 minutes, crying and unable to move. I couldn’t even move to scratch an itch.

The worst part of this process what the advice I seemed to get from everybody: “Don’t tell the police about your mental health issues.” Friends, my therapist, the rape crisis counselors who met me at the hospital to support me. Their reasoning? Because they might dismiss my case because I was mentally ill. The argument could be made that I’m overly paranoid or made it up in my head. I was furious! The mental health stigma was… IS bad enough that I had to go out of my way to hide one of the main factors in my life so that I would hopefully be believed?!? I felt like I was manipulating the situation, or lying by omission and that I would get into trouble for it. In fact, the only reason I’m now choosing to tell my story is because I recently got the call from the detective saying that they were dismissing my case (not enough evidence). I was told that I couldn’t post on my blog, Instagram or Facebook just to be safe. I was nervous that I’d get found out, mess it up, and not get justice. Well, now that justice will not be served. I’m speaking out:

I am a survivor of sexual assault. #metoo

Posted in coping, mental health

The Soundtrack of My Health

“There’s only us, there only this. Forget regret, or life is yours to miss. No other course. No other way. No day but today.”

Rent the Musical was playing at the theater downtown this past weekend, and I ended up being able to go see it twice. Rent has been one of my favorite musicals for about five years and was a part of the first coping skill I consciously participated in. Seeing it brought up a lot of memories, some good, some not so good. It also spurred a night of reflection on my life with chronic and mental illness.

“I can’t control my destiny. I trust my soul. My only goal is just to be.”

A majority of the characters in Rent are suffering from AIDS. The plot revolves around the fact that the characters are sick, and will be for the rest of their shortened lives. When I started acknowledging my mental illnesses and realizing that I would suffer from chronic pain for the rest of my life, suddenly the lyrics of nearly every song had lines I could relate back to my situation. I found myself doodling the lyrics in the margins of my school notebook. I listened to the songs on repeat while sitting in the bottom of the shower, mourning the healthy future I would never have. I started feeling an overwhelming sense of hopelessness, because I identified with the characters, and if they were doomed to die young… what was my fate?

“Goodbye love. Hello Disease.”

Rent takes you through a series of emotions during its performance, and I found it easy to get swept up in the brilliance of the music. I’d be crying happy tears in Act 1 from the beautiful harmonies and sobbing into my pillow by Act 2 because of the plot. Back when I first started watching it, I realized it was a way for me to forget what I was going through in my own life. The rollercoaster of emotions it took me on was extreme enough that no matter what I was dealing with at the moment, I could forget for an hour or two.

“Will I lose my dignity? Will someone care? Will I wake tomorrow from this nightmare?”

Fast forward to this weekend. I’ve come a long way in 5 years. I’ve started, and stopped, self-harming. I’ve attempted suicide. I’ve received 8 mental health diagnoses and 3 chronic illness diagnoses. I’ve gone from being on my way to college to living in my grandparents’ basement while on disability. I’ve gone from thinking I’m going to work a traditional 40 hour work week for the rest of my life to multiple doctors appointments every week. I’ve lived in a mental hospital. I am sick. This weekend I watched these characters who have been with me my entire recovery play out their lives on stage. I watched them care for their sick significant others and hold them in their arms while they die. Tonight while I was laying in bed trying to fall asleep, I kept imagining a future partner sitting by my bedside as I struggled with my illnesses. I could almost feel them stroking my hair as my body shook uncontrollably. I could hear their voice pleading with me to try to eat something, or handing me a glass of water so I could start taking my handful of medication. I became so upset. I would never wish that on anyone! Why would someone choose to be with me, where there will be nights like that?

“You don’t want baggage without lifetime guarantee. You don’t want to watch me die.”

The message of hope the plot sings is not lost on me. The characters say that they would always choose love and sickness over no relationship at all. When someone loves me romantically, there will be happy moments. There will be tickle fights and movie nights. There will be adventures and laughter. They will make the commitment to me, in sickness and in health, and love me despite my baggage. Now if only I can emotionally understand those facts.

“There’s only now. There’s only here. Give in to love, or live in fear. No other path, no other way. No day but today.”