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.
I think it’s awesome that social media is using it’s viralness to spread awareness on suicide. It’s a step in the right direction when it comes to ungluing the stigma and helping those of us with mental illness feel heard and understood. But I would be lying if I said this month is easy for me. I’m surrounded by constant reminders of the multiple attempts I’ve barely survived. The days my brain made life so unlivable that I felt I could do it no longer. The trauma that drove me to the edge. Each photo on Instagram and article on Facebook just picks off the scab I’ve put on suicide while I heal mentally. I’m reading statistics, wishing I was one of them. Topics on suicide hit me from left and right, it’s like going grocery shopping when you’re hungry. I know the hunger will pass, but in the cake aisle of pick-n-save, it’s impossible to ignore the hunger. The other 11 months of the year I have to fight off the “hunger” on my own, September just sticks me in the middle of a bakery.
Running a mental health blog, it’s no secret I dedicate my time to educating others about mental illness, including suicide. I know that as a neurodivergent. I offer a unique voice to the mix. I can speak to things that the mass public cannot fathom. But in September, I feel obligated to talk about my pain and trauma every day, to anyone online who makes a post. As if my OCD doesn’t force me to dwell on harm enough, now it’s everywhere I look for a month, dangling my pain in front of me, tempting me to engage in the harm. I imagine it’s similar to the thousands who have lost a loved one to suicide. It’s a long grieving process, filled with second guessing and questions. It can take years, so more than likely you’ll encounter Suicide Awareness Month, and be forced to confront your grief over and over before you’re ready.
It’s easy to stay quiet about this struggle. I don’t want to deter the overdue attention the mental health community is receiving. I don’t want anyone to feel bad or guilty for sharing photos, articles, and especially their stories. But it is Suicide Awareness Month, and to do this month proper justice, I think it’s important I share this side to suicide awareness.
This weekend I wrote a letter of complaint to the patient relations at my hospital. Being an advocate on my blog and Instagram can only get you so far. I took the courageous action to share my story with the people who will hopefully really help me make a difference. And it’s only right that I post it here so that it may find whoever needs it and I pray that this continues to find the right people so that this issue is addressed not only in my hospital but in hospitals across the country and maybe even globally.
Dear Patient Relations,
My name is Serenity Kaspar and I am mentally disabled. This means I frequent the ER as a psych patient when I need the extra help. I am an avid mental health advocate and with my latest trip to the ER, I ran across some red flags. I am thankful it was me, and not someone in an unhealthier mindset, who ran into these unsafe situations.
I had a dramatic mental episode on the morning of June 9th, leaving myself and my care team wondering if I had overdosed on one of my medications. I drove myself into the ER, as I have many times before. I know you guys have been rearranging things, and I pray my experience today was simply ironing out the kinks of the new program. If that is the case, I hope this letter helps you adjust the new system. Once I was checked in, I was taken back behind the desk to get my vital signs done, then returned to sit and wait. My first thought I’d like to make is that there was a large number of times that I was moved from room to room and all the standing and sitting was very unwelcomed. I had taken too much medication and I was feeling very sick, as I’d imagine most patients would be feeling given the nature of the emergency room.
When I was finally taken back to a room, I was immediately left alone while the staff member asked a question. I was a psych patient left alone in a room full of chords, medical supplies, and more. Now, given what you have done with the psych ER room remodel, you understand the severity of this mistake. This happened not once, but twice. I was even left alone for a lengthy period of time, plenty of time to do some serious damage. After an EKG, I was left alone again in that new, smaller waiting room area. No one at the desk, nothing. I’d like to note that at this point, I had all my stuff and nothing had been checked. I also had not been asked if I felt like I could keep myself safe or if I still had thoughts of wanting to hurt myself or others. If this had been back when I was at my sickest, I would have had a knife in my bad to cut myself with and I would have lied to the initial staffers. There wasn’t enough of a relationship for me to have felt comfortable sharing, nor for them to know if I was truly safe or not, despite how I may have “seemed.”
When I was taken back into the psych room, I was met with a staff purely made of new people. They were not aware of the rules, when we were allowed, what we could wear… nothing. They weren’t even aware of how everything in the room went. I understand that there are staffing problems, but there should never be exclusively new people staffed in the psych area. I ended up being the one to tell them how certain things went. Again, if I had not been this far into recovery, this would have continued to give me opportunities to lie and get away with things that could compromise my mental and physical health.
Thankfully I am in recovery and was not having current thoughts about hurting myself or others. I want to applaud the hospital for the renovations it made to the psych rooms. They are so much safer, and I rest easier knowing that my fellow mental health patients are safer when they come into the ER.
I also wish that this was the only thing I felt I needed to write about today. I have run into some serious issues in your ER before, when it came to mental health issues. I have had staffers sitting with me and answer my questions about how tall a building needs to be for me to effectively kill myself and sat there while I self harmed. I have had staffers check in on me, find me self harming, tell me not to do it, and then leave again, leaving me to self harm to my heart’s content. These are truly appalling things that I have experienced, and unfortunately, I am not alone in this.
Please take this to heart and get it to the exact right people that can help change this. Don’t make it another email that’s summarized by checking a few boxes.
I am more than willing to talk on the phone and meet with whoever I need to meet with so that this can change. I am willing to do whatever it takes that mental health patients do not need to experience this, and ultimately reject care that has the potential to change their lives.
Not a day goes by where I don’t dread the night. It’s difficult to find the light when even the room around me is dark. I put off sleeping as long as possible, sometimes even for days a time. I have an extreme dislike for almost everything associated with bedtime. I really struggle with taking my medication. There’s all this pressure to make sure I fall asleep in a timely manner so I can get enough sleep so I don’t ruin tomorrow before it even starts. Sleeping requires giving up all control and handing it over to my brain, who I don’t trust. My brain tortures me at night with the worst nightmares one could experience. My nightmares are so real that I can’t tell if I’m dreaming or if I’m awake. When I try to wake myself up in the dream, my nightmare plays the scene that I have woken up and then continues the nightmare. I lose track of reality, and often can’t tell the difference between being awake and being asleep. I’ll talk to my friends about something that happened, and they’ll inform the that it was never real, raising the question of if I simply dreamed it and mistook it for reality.
My nightmares force me to relive the worst day of my life, or take my fears and play them out to the extreme. For example, my OCD concerns itself not with germs and cleanliness, and manifests in self in other ways, like worrying about harm to myself and others. Basically what this looks like, is when my friend recently moved from Wisconsin to Wyoming, I needed her to text me every leg of the journey so I knew how it was going. In my nightmares, my brain takes the important people in my life and puts them in horrible and dangerous positions, both physically and mentally. I often had to text my friend in the morning so they can assure me that they’re safe and alive. The worst is when I wake up from a nightmare, unable to move my body. This is called sleep paralysis, or a temporary inability to move or speak when waking or falling asleep. It’s terrifying. and often adds to my feelings of helplessness and not being in control. I often find myself shaken to my core in the hours, or sometimes even days, after a nightmare, I’m on two different medications to help with my nightmares, and these experiences are still a nightly occurrence. Imagine what it was like before the medication!
Even with my medications that have sedative properties, it can still take me upwards of 3-4 hours to fall asleep. It’s a nightly challenge to turn my brain off in preparation for sleep. Laying in bed, in the dark, with no distraction to keep my brain from wandering, I typically find myself thinking about things that work me up and make me anxious. I’ll think about stupid little things I said to a friend months ago, or I’ll begin questioning life decisions about the places I’ve moved, or the friends I’ve cut out of my life. The negative self-talk soon follows, and by the time I fall asleep, I’m crying and wanting to die. Sometimes I feel so sickened by my thoughts that I genuinely throw up… all I’m trying to do is get some rest!!
On another note dealing with my PTSD and falling asleep, I always have to fall asleep with the TV running. Trying to fall asleep to silence leads to me assuming every little noise the house makes is a past abuser breaking into the house to enact their revenge, by doing something like setting the house on fire or looking for me so that they can hurt me. Most of the time the noises are just the house settling, or one of my grandparents getting a glass of water. But the sheer paranoia from my PTSD takes this little bumps and turns them into full on panic-able things. With the TV on, I hear only a fraction of these noises, meaning I won’t go hiding in my closet at every thump.
Nighttime has always been stressful for me. It has always been one of the most challenging parts of recovery. Despite all of my medication, years of therapies, like EMDR and bilateral stimulation, sleeping is a daily struggle that I have to face. Do you struggle with sleep and have tips of your own that help you fall asleep? I’m always open to hearing new ideas! Let me know in the comments below!
I started writing this earlier this morning and am proud to bring you the best self-therapy I think I’ve ever had:
My mental illnesses are taking over. It’s taking all the energy I have to keep myself from attempting suicide, and I don’t even want to die!! My nightmares/ dreams are so bad I can’t even tell if I’m awake or dreaming. My eating disorder and self-image is at nearly an all-time low and I’m starting more intense therapy. My knees ache in the springtime because of the cool, damp air. My back is getting worse and I’m scared wearing an occasional brace and electrotherapy won’t be enough in the near future. My blog traffic is down so low it’s worse than the first month is was live. I’m stressed all the time. My financial situation is dire. My bipolar is temporarily stable, but the fear or losing control again makes it even harder for me to trust my mood. I’ve had life-altering pain in my side for 7 months with no answers, and more my digestive system is revolting against me and doctor’s don’t know why yet. I’m a mess. I need a vacation. I’m curled around a puke bowl crying and browsing Facebook. I don’t even remember what inspired the thought, but something made me realize I need to do my best to live life despite the blows that knock me down. Lake Monona is my backyard. I got a bigger boost of inspiration than I’ve had in months.
It’s 7:30 am on a Monday morning and I just got home from the ER about an hour ago. I’m struggling with my Bipolar Depression and thoughts of suicide while struggling with the scary and unknown thoughts of digestive failure or kidney disease. Every fiber of my being screams to just curl up in a ball under blankets and just watch a movie I’ve seen a hundred times over. Something on Facebook inspires me to just make a positive memory for myself and live a happy life, at least for the morning. I needed to just let go of all of the anxiety over unknowns in my life and enjoy myself. I wasn’t going to let anxiety win. I got up, threw my phone, a waterproof speaker and an Ensure in a bag, grabbed my favorite canoe, Pea Pod, and dragged it all down to the shoreline. I was so excited, but also nervous, because I had this gut feeling it was a bad idea to go canoeing in my current physical condition. Somehow my persnickety brain allowed me to throw caution to the wind and go canoeing anyways.
I started out quite clumsily, it was hard to find a way to paddle that compensated for my current right flank pain. It was so early in the morning that the sun was either directly in my eyes or so low that I was in the shade and chilly. After a period of wrestling with the canoe and the sun, I realized I had forgotten to turn my music on! That improved the entire situation 1000%. I was singing at the top of my lungs, laughing, talking to the wildlife and enjoying the view. I went down this channel that has a great balance of interesting houses, and wildlife, to look at while paddling. I drank an Ensure, which is a nutritional drink I was prescribed when I was diagnosed with my eating disorder. I’ve been struggling a lot with my eating recently because I’m about to start meeting with a new professional about it, so I’ve been avoiding drinking the Ensures so that I appear “sick enough” for this new doctor (PRIME EXAMPLE OF WHY THE EATING DISORDER STIGMA IS DANGEROUS). It made me feel really good about myself, but there was still this hesitation inside of me that I didn’t like. My thoughts immediately jumped to pushing myself really hard paddling so I’d burn off the calories and not get fat because I drank it. Instead of acting on that thought, I practiced a DBT skill where you imagine your thoughts and urges as leaves on a river, and picture them flowing past you without judging them or acting on them… only I did it in real life on the lake with some leaves from a nearby tree and watched my urges to over-exert myself and self-image issues drift away from my canoe. Then I “took matters into my own hands” and paddled away from them. I decided to make a conscious choice to leave those issues behind me and “paddle towards recovery”. I think my phone heard my thoughts because the next song that played was a song from my library that dealt with physical appearance and learning to accept yourself (as long as you promise not to judge me for being a Gleek, you can listen to the song here).
There were many times I started to turn around. My depression was screaming at me to go back into my bed and just spend the next few hours mindlessly on my phone. Even now, I don’t completely know how I was able to fight those thoughts off and keep going on my planned route. I would mutter a little pep talk (“you got this, remember you’re having a good time?” or “oh no you silly brain. this is my morning and you aren’t taking it from me” or something of the like) and paddle on. At one point my foot fell asleep so bad that I had no feeling in my foot. If you know me, you know I’m ridiculously ticklish
on the bottoms of my feet. I can even tickle myself! I ran my finger across my foot and couldn’t feel it AT ALL. It was a weird out-of-body experience, and also kinda scary. Needless to say, the rest of the ride I was always wiggling my feet and knees so they didn’t fall asleep. I paddled along, quacking at ducks and then laughing at myself… that’s a really powerful gift, to be able to have enough empathy towards yourself that you can laugh at the silly quirks you have, instead of tearing them down. That thought was another positive thought that I noted to use in the future when I begin hating my childish quirks. I seized the moment and sat cheering myself on for the distance I’ve already run in the marathon to self-acceptance.
At this point, I’m about 2/3 of the way through my planned trail to blaze in Pea Pod. Once again, as if on cue, a string of my self-empowering songs played. Pure positive energy seemed to burst from my chest. It was surreal. I paddled with renewed life in me. My cheeks hurt I was smiling so much. I paused long enough to capture a quick video of the moment:
I paddled home in the best mood I can remember ever being in, in recent history anyway. There are a gazillion more thoughts I had and experiences I will treasure from my paddle, but I will leave you with this, recovery is not a straight line. Things had been going well for me these past two weeks, and then everything came crashing down. Even with this paddle to lift me up, I’m still in a funk and overwhelmed. This wasn’t a wand-waving experience that made me feel all better. In fact, I’m still a little low-key passively suicidal. But the opportunity to suspend reality, if only for a moment of relief, was well worth the effort. I’m depressed but rejuvenated. The self-discovery journey I went on today was one I will never forget. I hope this post encourages you to stretch yourself this week, and allow yourself the freedom to take things as they come, and go on a journey with your closest friend… you ❤
Want to hear “My Paddle Playlist”? Check it out here.
As some of you may have known, this was my first week as a Crisis Counselor for the Crisis Text Line. I’ve completed 34 hours of training over 6 weeks and officially became a certified crisis counselor. Over the next year (and hopefully beyond), I will be spending a minimum of 4 hours a week responding to the texters who text into the CTL, listening and supporting them through their crisis. This can be anything from bullying, stress about finals, suicide, abuse, and more. This service was started so that you don’t have to call a hotline and talk to someone, which can be nerve-wracking, but instead, text them, which can be much less stressful.
Leading up to this week, I was excited. I couldn’t wait to start talking with texters and supporting them through their crises. In the hours before my first shift, I was downright terrified. My thoughts were racing: “what if I say the wrong thing and make it worse?” “what if I mess up using the platform?” “what if I’m not good enough and my supervisor fires me?” “what if I’m triggered and can’t help the texter?” … the thoughts went on and on. When it was time for me to log in, I was shaking from nerves. My supervisor was very supportive, and I was able to jump right in. For confidentiality reasons, I cannot share the nature of the conversations I had, but today I’m going to talk about my emotions as I went through my first hours of counseling.
Everything I heard while in training was right, as a counselor, you really do save lives, and let me tell you, it feels pretty great. I was so pumped up after helping my first few texters, I ended up working 5 hours straight instead of just 2 on my first shift. I’ve always known this was my passion in life. Earlier this week, my best friend reminded me that back when I was my sickest mentally, I still talked about how I couldn’t wait to be able to use my story and experiences to help others. Being able to live out that passion is pretty spectacular. But I quickly learned it isn’t all cake and roses.
I knew this was going to be difficult. I knew I might be triggered. I knew that it was going to drain me emotionally and mentally. But nothing can prepare you for the real experiences. Nothing prepares you for the unknowns. The people who when you end the conversation, you don’t know if they’ll be safe tonight. Nothing prepares you for the people who never text you back. And there’s the fact that there is nothing you can do about it. You did what you could. You probably even did your best. You’re helpless… even as a trained counselor, you couldn’t do it. I found myself thinking it was my fault. The “if only”s raced through my head and my heart. I held all the guilt and put it on myself. I failed. The fulfillment and the adrenaline were gone. I felt empty. I wanted to cry. Nothing could have prepared me for this.
I spent all of today shaken over the unknowns of last night’s shift. I could barely get out of bed this afternoon. My nightmares completely overcame me when I drifted off to sleep watching TV. I was practicing a lot of self-care last night after my shift. I drank tea, I snuggled my bunny and got lots of kisses. I meditated and watched my favorite movie while surrounded by my favorite stuffed animals. It still wasn’t enough. I was so wired I didn’t get to bed until 5 am I got out of the house today and met a dear friend at Barnes and Noble… and was an hour late. All I could think about when I was there was how much I needed to write… and how I wish it was easier for me to settle in with a good book. The second I got home I fell asleep again…. only to be met with more nightmares. It’s been clear to me that I am certainly an empath, and it was very apparent today.
This was only my first week. I have a lifetime to get it right. I’ll continue the mantra that I’ve done what I can. I’ll sing about how this is my calling in life. I’ll talk to my animals about the difficulties I faced during my shift. But most importantly, I’m going to persevere and continue to change lives both as a counselor and in my own life.
I can do this.
If you’re in need of help, know there is someone who is always there to listen. Text HELP to 741-741 or message the Crisis Text Line on Facebook.
Receiving a diagnosis of any kind can be devastating to a person’s life. It’s perfectly normal to need to grieve a diagnosis. Getting diagnosed can mean extra treatment, new medication, hospital stays, lifestyle changes, and more. It can put a strain on even the strongest of relationships. A diagnosis can also leave a lot of unknowns for what the future holds, and that can be very unsettling. Fear of the unknown can hold a lot of power over a person. Grieving a diagnosis can look like any other type of grieving, commonly depicted in 5 or 7 stages. I’ve received 9 mental health diagnosis over the years, 2 of them were misdiagnosed and so today mental health professionals agree on 7 diagnoses and an 8th in the works. When I was diagnosed with Borderline Personality Disorder, I definitely spun into a deep state of grieving, and it took me nearly a year to fully grieve my diagnosis. My bipolar diagnosis came slowly, first I was diagnosis with Bipolar 2, then my psychiatrist disagreed, saying it was just my Borderline showing similar symptoms. After getting a third opinion, it was finally accepted that I had bipolar 2. One time I went into therapy, it was very apparent to my social worker that I was fully manic, a state that can only be reached if you have Bipolar 1. Almost a year later, I was talking with my therapist and I mentioned how I get manic for about half of a month and depressed for the other half. According to her, someone who has bipolar only gets manic once or twice a year, at most, not every single month. this means I have rapid-cycling Bipolar 1. About 2.5% of all US citizens have bipolar disorder, and of that 2.5%, only 10-15% have rapid-cycling. Because of this long, drawn-out process of getting a proper diagnosis that 4+ mental health professionals agree on, I went through the grieving process multiple times when it came to my Bipolar disorder.
Drawing on my own experience and various articles online, I’m going to talk you through what grieving can look like after receiving a mental health diagnosis.
Shock/ Disbelief- What did the doctor just say? Surely I didn’t hear him right. I’m perfectly normal. Everyone just gets a little stressed sometimes… right? The chaos can be all you think about, You have to find out what happened, no matter what the cost.
Denial- This can’t be true. It just can’t be. I don’t need this medicine. I can’t have this illness. I’m so healthy! I’ve felt like this my whole life. Why should now be any different??
Bargaining- I can beat this, I just have to grin and bear it with my treatment team. Maybe if I tell them everything’s better, I won’t have to go to therapy anymore. And my mom won’t have to look at me with such sad, desperate eyes. That’s it, just pretend and do what they want you to do and say. Maybe if I went and got a second opinion…
Depression- A number of people tend to get stuck in this phase and that makes it the most dangerous stage. This is where the sadness and guilt can set in. Self-blaming can take over. If only I had gotten help sooner… now it’s helpless. I can never get better, it’s just too hard.
Acceptance- Reaching this stage is something not everyone is able to reach. It’s looking in the mirror and saying “Welp, this is the hand I was dealt with. I can do this.” You radically accept any emotions that come your way about your diagnosis. You can begin to forgive yourself, and let yourself be loved again.
Please remember that I am not an expert in grief, I am speaking from personal experience and the experiences of others that I know. Greif can look different for every single individual. Have you ever grieved a diagnosis? Do you have any tips or tricks that helped you in your grieving process? Let me know in the comments below!
If you’re struggling with grieving a diagnosis, know there is someone who is always there to listen. Text GRIEVING to 741-741 or message the Crisis Text Line on Facebook.