I really miss the hospital I used to go to in the Chicago suburbs, especially after this last one I stayed at. As you may have expected, I checked myself in as the mixed mood didn’t get better and I got closer and closer to hurting myself as the thoughts bore down on me. I took notes at this hospital because I couldn’t believe how bad my experience was.
In no particular order, and as only a partial list, here are the things that went wrong:
- Food. The food was cold, poorly cooked, and mostly out of a can.
- Lack of privacy in the bathrooms. Besides the bathrooms having no doors, the staff doing rounds found a way to always know when I was in there, need to mark down where I was for the every-quarter-hour rounds, and always look in and make eye contact while I was on the toilet or in the shower.
- Uncaring night staff. The night nurses (7pm-7am) failed to learn any names, even when with you for several nights; and failed to ever do anything that could be “extra work” like look up if you can have melatonin even though I know the dr prescribed it because the day nurse looked it up for me.
- Not sharing info. I saw a different nurse practitioner every day and no one had read notes about how I was doing from the previous day. Same with nurses between shifts and on different days, case managers, and therapists. I would be asked the same question multiple times a day, by different people, and no one checked the notes anywhere to see what I had said or what the dr had said (who only saw me for a grand total of 5 minutes between 2 visits and never took a history even of medicines I tried).
Cleanliness questionable. Day room was mopped and trash emptied each shift, but all hand rails were sticky, the bathrooms were only swiffered daily and toilet/sink cleaned every other day, and I never saw the main halls actually cleaned, just swiffered. No wonder everyone upstairs shared a cold, and then it was brought downstairs and everyone went home with one.
Crickets. In my bathroom, in my room, outside my room, and others had them too.
Yelling. All day and most of the night from a dementia patient – did I mention I was on the geriatric floor? And others with intellectual disabilities yelled and spoke loud at all times of the day and night.
Assault on the staff. By a person with dementia. Nothing done about it! She yelled violently at patients regularly too.
Meds from home not approved. After the main nurse practitioner insisted I get meds from home for meds that were not on the hospital’s formulary (like Advair!) – that would have to be approved by pharmacy and then prescribed inhouse, a process that should take a couple hours, right? – I NEVER got them until I discharged, and then they didn’t give back one of them because they didn’t want me to take it anymore!!!! It was mine, prescribed by my regular doctor!
ECT brought up. Multiple times, by multiple people. If you read my blog you’ll know why that scared and pissed me off!
Sleep meds never ready. Even though they were prescribed, and I took what was in the formulary, the nurses never pulled my sleep meds to give me at night, and I would have to wait 20 minutes from the time I asked to the time I got them even when all they were doing was pulling my meds for me.
Transfer to another hospital didn’t go through. I asked first thing the first morning to go back to the hospital that sent me cuz they had no beds the night before but did after discharges the next day. After getting the runaround about who to talk to, I kept on him all day and he finally came through – though no one else on the staff knew I was leaving. Sigh. Then the other hospital said I’d have to self-pay and that was too much money!
Diapers. People just left in them for hours. Patients would tell staff about puddles or smells.
Interns, and bad basic therapy. Every day I was there a therapy intern or a weekend-only staff person led the processing and education group. We would get 2 minutes to say what was on our mind, longer if we had a complaint and then they might jot something down. Super, super basic coping skills like deep breathing or the 10 cognitive distortions (just read off a sheet, not explained) were “taught,” and as someone who knows and practices them, they were not helpfully taught, explained, or they don’t work anyway.
Intake, middle of the night. Imagine this. Been in a small room with just a couple chairs and a tv for 9 hours. During that time you had an hour-long intake covering everything possible. After several hours, you are told there are no beds and they will transfer you. Then more hours go by. And there is one bed available at a hospital without a good reputation, but legally (to cover their responsibility) they can’t just let you go under family’s care, or let you just sleep in the little room because you have reported intense feelings for suicide. More hours go by. An ambulance finally shows up to transport you to new hospital, sans sirens and lights. New hospital takes their sweet-ass time processing you – 4 more hours until 5:30am – and asks the Same Exact Questions even though your paperwork with all the answers was faxed over hours before you got there. Plus the people were rude!
Despite this and more, I remained model patient, taking meds, participating in groups (just 2 total to fill the day, sigh…), keeping patient, talking to and helping other patients. Just needed a restful place to feel safe and wait for the suicidal thoughts to wane.
I felt alone. It seemed everyone around me wanted me to continue with ECT. Yet it’s my decision. It’s my body. I live with the illness – and it’s consequences. I live with the treatments and the symptoms of anxiety they cause in me. Here is what I decided after several conversations with my therapist, my psychiatrist, the ECT team, and my mom. I even read medical journal articles.
I want my life back. I want the anxiety I’ve been living with to be back to reasonable levels that I know how to live with. My mood has been stable and my psychiatrist expects it to stay that way. I hope he is right! I’d like to learn how to live with a mood that experiences many emotions without dropping or accelerating into a mood state.
I decided NOT to do ECT anymore. I want to try medications again if my mood becomes depressed or manic again, or if I become suicidal. I have to get the port in my chest removed again since I no longer want to do ECT. (The port was used to access a vein so that nurses didn’t have to try multiple times per treatment to create an IV.) ECT has been helpful for getting my mood to baseline, and perhaps it would help in the future too. I’m just not sure, I don’t like the reaction I have to treatments (days of anxiety), and I’d rather work with pills. ECT had been a last resort when I started it last fall, and resumed it this spring and summer. I just don’t think it has to be my Go-To treatment method anymore.
I will be super vigilant about routine, schedule, taking meds, nutrition, exercise, coping skills, and sociability as I try to maintain a stable mood with these things that have Not proven to work before. But I will do what is personally in my power to care for my multiple mental illnesses. I will work with my psychiatrist for meds and therapist for coping and exploration as needed. I will reach out to others for support on a regular basis. So don’t be surprised if I contact YOU!
I’m taking my life back.
I hate to say “I told you so,” but I did tell you that stability wouldn’t last. Over the last week-plus, I slipped into depression, with fatigue, hopelessness, sadness, guilt, tearfulness, and the agony of suicidal impulses and visions. What seems different this time is that I am hopeful that it will pass and that I can find stability again. That hope is a HUGE difference! I still fall into utter hopelessness and think life will always feel as horrible as I feel now (and then I often pass into thinking of death as the only way to end such suffering).
I finally told my mom on Sunday how I was feeling, and she insisted I try to get in to see my psychiatrist on Monday. (I had already been texting with my therapist.) He was actually able to squeeze me in! He started me on a med that I tried last year that ended with a hospitalization. He thinks I was already feeling bad and was getting worse anyway, and that the drug didn’t have anything to do with the hospitalization. So, I’ll try again, under my family’s watchful eye, with my doctor on speed dial. He suggested a sun lamp too, first thing in the morning, as well as calling to get in to get some maintenance ECT. (UGH! ECT is NOT what I want to do, though apparently now it works for me…so I guess I should follow my doctor’s advice.) He thought the schedule of an IOP or PHP program might be helpful, but that I didn’t really need to go over coping skills again.
Both my psychiatrist and my therapist agreed that the time of year – the equinox – has something to do with what’s going on for me. As my doctor put it, “Spring is a fragile time,” and “The last 100 patients have had the same problem as you.” He said both spring and fall are the most fragile times (I’m sensitive to the solstices too – Gr-e-e-a-a-t), because it is the circadian rhythms changing. It’s nice to be believed about the time of the year being hard for me! Not everyone at my hospital in Illinois believed me, though the most important people in my life did. So, if any of you are having trouble at this time of year, rest assured that you are NOT alone!
All of this description and action plan just to tell you, dear reader, that I feel Horrible, from the pit deep in my solar plexus and spirit, and Empty and Ugly and Worthless. Leading to hopelessness and deep sadness. Right now, at least, I don’t feel suicidal. I’d like to think I could avoid a hospitalization this time.
I have been staring into the abyss for two weeks. I have been very close to suicide, even in the hospital, where I am right now. I didn’t get to take my Chicago vacation because I was in a New And Good hospital. Excellent doctors and staff, comfy bed, decent food.
And still I struggle with life and death. It is deeply agonizing. Good doctors have taken me off three of my meds and added one. Med changes are miserable but usually necessary. One thing to discern is whether my suicidal visions are from depression or OCD, reopening an old argument. I want the death, but the visions come unbidden. So the argument remains.
With only a little persuasion, I have agreed to a full course of ECT – 12-20 sessions, three days a week. Yes, I have had bad experiences such as long-term memory loss and cognitive loss. I’m at the end of meds I can I can try. I’ve been told I’ve taken enough that I have a 5-10 percent chance of Any working at this point. I never did a full series of ECT before so I don’t know if it will work. I’m going risk further memory and cognitive issues because sometimes I want to live.
I need your love and support. I’m very alone at the edge of the abyss.
With the limited amount of faith I have in myself (not much), I’m going to follow my therapist’s suggestion to restart my coping skills with curiosity about them and deciding as though from the beginning if they are working for me. I feel like I am doing Everything Possible to manage bipolar. And still functional depression is my baseline mood. I fluctuate from functional depression to regular depression regularly. In August or December or both, I may have a manic episode. Not every year, but with regularity enough to look out for signs of them. But depression is my regular existence.
I feel as though I have no control over my life. Bipolar moods dictate energy, mental ability, cognitive ability, and emotions. Medication has been able to stop the fluctuation among forms of depression, but never out of depression as the baseline. And I’ve had well over 50 med changes in the last 8 years since diagnosis. Medications have sent me spiraling into despair and soaring into mania, but stability has been elusive. I use coping skills and a healthy lifestyle because I am supposed to because they are “good for me,” yet I see no effect on my mood. Since I can’t influence my moods with skills and lifestyle, I don’t think I have control over my moods, and therefore my existence.
With the extremely little hope and faith that I can have an effect on my mood, tomorrow I will beg my new psychiatrist for help on the medication front. I will also follow my therapist’s advice to re-examine coping skills and restart them as though from the beginning. First, I need to list what those skills are. So many come naturally now that I hardly think of them. So a list to remind me.
These are the elements of a healthy lifestyle I practice:
- A regular bedtime, 8-9 hours of sleep and rising at the same time every day
- Healthy eating and regular mealtimes
- Exercise, 30+ minutes 4-5 days a week
- Social contact at least 2 times a week (could be better, but I have no friends in my current location yet)
These are the coping skills I regularly practice:
- A breathing meditation every day
- Deep breathing to manage flare-ups of anxiety and depression
- Examine recurring thoughts and feelings with curiosity and work to accept them as existing, no judgment
- Defuse from unhealthy recurring thoughts
- Ask myself if a course of action is in accord with my values, and take actions that are
- Distract from moods and anxiety with diversions such as reading, movies, tv and social interaction
- Distract from escalating emotions with grounding exercises such as paying keen attention to the moment, to sounds, to visual cues, with calming scents and with soothing things to touch
- Ride the wave of emotions
- Blog as journaling to help with introspection into what I’m thinking and feeling
- Spend time with my cat, petting, talking, playing
- Reach out for support or practical help from friends and family
Well, I’m still depressed. But the anxiety has a reason! I saw a new psychiatrist last night. His theory is that I get more anxious when my mood changes. And since I’ve had so many mood changes over the last many years, that would produce more anxiety. And the times that I went in to the hospital with anxiety that led to suicidal ideation, I was having mood changes. So, besides social anxiety over the past several days, I am in a mood change. Which I thought. I didn’t start feeling depressed until I had been anxious for a couple days. Then there was some suicidal thinking, but nothing to worry about. Just thoughts.
He also increased my antipsychotic, is thinking of increasing one of my anti-convulsants, and stopped my anti-depressant which will just add to my anxiety he said. I agree, but it seemed to be the drug that worked to make me stable the last month. He said it may have brought me out of a depression, but ultimately won’t work to keep me out of one. Since it costs so much any way, I’ll go with him. He also wants me to consider an injection of an antipsychotic that lasts a month at a time. It’s a drug I’ve been on before with disastrous weight gain and very little if any effect on my mood. But the injection is very different he said. The research I did seemed like it would still cause weight gain. Having just passed the 30 lbs lost mark, I don’t really want to make it Harder to lose weight! But I’ll think about it.
I left thinking there were treatment options and that he had my best self in mind. I can like and trust him with my mental health.
Today I saw a new spiritual director. I haven’t seen anyone formally in close to 10 years I think. A pastor acted as one informally but more as a spiritual friend, which technically is what a spiritual director is… I shared with her the torn identity I have between my ordination history and nurture, and the new place I am, which is not feeding me as well as I hoped. I talked. She listened. She heard that I very much wanted to act on the great compassion I felt for the world. She heard that I was searching for who I am. These are things that I have discussed with my therapist ad nauseaum, but not in those exact words. It’s great when the two people you share your innermost life with are on the same page!
I’ve lost a sense of my contemplative side and of who I am and want to be in the world. I’m running in different directions trying to find places to volunteer only to have doors and windows slammed in my face, all saying not now. I guess it’s time to figure out who I am. I’ve made drastic choices to get help by moving here. By not having to think about some aspects of living because I don’t live alone, I have the opportunity to figure out who I am, even if I’m not stable. And I’m not. I’m depressed again. At least I know the feeling. I can summon some energy to act human.
Psych meds are no joke. Just when you think “This might be the pill that saves me,” that same pill threatens your life.
I was put on a brand new antipsychotic on a Thursday night. Within half an hour I was feeling more depressed. I woke up the next morning heavily depressed and thinking constantly of suicide, with a very specific plan.
I still went to my therapist appointment that day. I told him what I feeling and asked him to talk me out of going to the hospital. He asked what I wanted to do. God I hate that question! My therapists and doctors always ask me that. As though I can tell if this will be the time I’ll act on the feelings.
He said he knew I was going to the hospital when I wouldn’t even crack a smile at a corny joke. He had seen my flat affect (stony, not-moving face and not showing emotion or animation). He saw the psycho-motor retardation (little movement in the face and body due to a psychological issue such as depression).
He surmised all of my symptoms – including the suicidality – was from the one dose of the antipsychotic.
I called my family to come take me to the ER of the hospital with a psych unit that was recommended. This was instead of getting a police escort to drive myself.
I was in the ER for 6 hours while waiting for the antiquated Texas system to place me somewhere. Days later I found out the psych unit at that hospital has its own assessment office! Wouldn’t have taken so long!
The doctor I saw inpatient concurred with therapist that I reacted to the antipsychotic med. Of course I didn’t take any other doses. He increased one med and added a new kind of antidepressant.
Five days into the hospitalization and I was free to go! I was feeling back to my normal self and almost – wait for it – happy! I haven’t felt happy and optimistic without an irritable hypomania since, well, since my last manic episode. But this almost happiness wasn’t a chemical defect. It was me. I found me!
I’ve been home for 4 days, and my mood is feeling “off” today. I guess depressed. Just woke up this way. I’ll take what I got of happy, and I’ll ride this depression out. I don’t feel stuck. I still have my usual suicidal thoughts, but they are fleeting and I have no intent. As I said, I’ll ride this depression out. I might find happy again. Who knows?
Mid January through early February I spent in the hospital. Yes. Again. My psychiatrist was adamant we need to find another way than bouncing in and out of the hospital. I agree! The changes we agreed upon were staying with friends if I didn’t feel safe. That would allow me to ride the wave of emotions longer without using the hospital before I need it. And it would provide a chance for me to trust myself to keep myself safe. These things seem basic and “Why didn’t you try them before?” We have, but not with the same rigorous energy to keep me out of the hospital. The bouncing this time was ridiculous.
In other news, I’m still in physical therapy after shoulder surgery in early December. It still hurts, and the exercises seem to make it hurt even more. This pain has kept me from getting back into the pool for water aerobics. I’m too concerned about damaging the progress we’ve made. I could go to the gym and focus on the lower body. I’d be moving and re-establishing the habit of going to the gym. The water aerobics classes that are best for me are in the evening. But going to the gym in the afternoon and evening uses up any available energy. I’m a better morning exerciser.
A real factor in the exercise department is that I’m depressed and low energy from the depression. Any extra energy anywhere is like pulling teeth. So even though there is concern about hurting my shoulder in the pool exercises, the going-to-the-gym option seems less of an option because I am depressed. I already feel bad about myself. Now I can have guilt for not exercising added to that. Another real factor is that my drugs keep me hungover for most of the day too. And yet another real factor is that I made the decision I’d rather be healthy than skinny. That doesn’t help motivation to get back to the gym. I do still want to work out, but I’m less concerned with weight loss. Might be a mistake, but my mood affects the decisions too. I’m still trying to manage the mood. How am I supposed to manage pain and weight loss too, when my energy is zapped and I feel horrible about myself anyway?
One foot in front of the other in a boring life right now.
Wow, it’s been a while since I blogged. Sorry, dear readers.
One reason is that I met someone special and we are beginning to share our lives together on a more permanent basis. The process is slow because he also lives with mental illness, and putting us together means my or his illness can interrupt plans to spend time together.
Another reason is that I had shoulder surgery in December. I’m now in physical therapy and function is getting better, but strength is still elusive. All in good time.
The major reason I haven’t written in a while is that I have struggled with my Christmas delusion (that I am bringing Jesus to the world and have a special mission to bring unity or hope or joy to the world). Fortunately it only showed up a week ahead of Christmas Eve. I was on haldol to keep me in this plane of existence, but I did experience psychosis from time to time when I was not in touch with reality.
I went off the haldol – as my doctor indicated – when the delusion passed. Unfortunately my mood tanked and I ended up in the hospital for a few days before the new year. Putting me on low dose haldol brought my mood back to mostly stable so I went home for the holiday.
Then last week my mood tanked again – no trigger. So frustrating. So shameful to me to have to go back to the hospital for no apparent reason. Especially after only 10 days. No med changes were made, much to my chagrin – fix something! I thought. Suicidal thoughts eased up as did my depression, and I was discharged on Friday. Another short stay! Hooray!
Now, it’s been a couple days. I can feel the suicidal thoughts again building up steam. I can feel my mood tanking. I don’t want to go to the hospital again, but I feel it coming up again. It seems the only time I stay out of the hospital are the times I mostly seem “up” which means hypomanic or manic, usually the summer. And I hate the summer. I’d rather be in the hospital then, than the rest of the year when I like the weather better and can find some solace in the times of the year.
I don’t know what to do now. I committed to teaching middle school at church next week. But I might be in the hospital again. I see my psychiatrist tomorrow and she may send me there. I try to make plans and my mood always wins. This is so freaking old. And I always feel ashamed when I walk onto the adult unit – again. Why can’t I take care of myself? And it’s hard to explain to a new person in my life. Though being in and out of the hospital shows part of the story.
My longest stay occurred from early March to late May. I was mostly confident I could discharge since I was going to a friends’ house to stay and daily spend some hours at home for a couple weeks.
I was overwhelmed with my first time back at home, even with friends there. And then again today when there alone. It’s filthy, with even just one cat living there alone. I guess she really does need staff to look after her. I called a cleaning service but they are booked out till the following week, which is probably the case for most places. So, I’m looking for teens who need spending money. 🙂 I can’t do this alone. I’ve got to keep asking for help. I spent 80 days institutionalized. Living on the outside takes some time.
Some details about my time inside. My doctor increased my mood stabilizer and lowered my anti-depressant. That led to a depression that led to a suicide attempt. So we spent 6-8 weeks coming back up from depression. Then we tried a different mood stabilizer cocktail. That didn’t seem to help. Then we added an additional anti-depressant to help the one I was already on. That would take 4-6 weeks to kick in, and we figured I’d be out before it kicked in but ECT would speed up the process. So I tried one ECT again and called it quits. It’s just not for me. Never got results from it anyway. And as it turned out, I was in the hospital the 4-6 weeks needed for the second anti-depressant. Meanwhile I’m taking heavy duty prns to handle anxiety and agitation. Finally got a day of stabilization without having to take haldol or thorazine on a huge increase of mood stabilizer. I got sent home with haldol and accompanying drugs just in case.
All the while I’m in daily group therapy with a very good therapist. And we uncovered the shame and anger and embarrassment of being in the hospital again, of having and living with bipolar and having to ask for help. Lots to talk with my regular therapist about.
For about 9 weeks I felt like this:
Death is not. It is nothing
I am not. I am nothing.
I don’t want to die. I want to die.
Make it end. Make the thoughts of hurting myself end.
Make the emotional pain end – anger sadness.
I am less than human because of them – thoughts, feelings.
I am pain, a hemorrhage of negativity.
No one understands unless they know this darkness.
Black hole, sucked into nothingness from images of gruesome death.
Am I romanticizing it, or speaking truthfully from a hurting being?
I am not thinking of others.
Their pan will be deep and unending.
I will not be in pain anymore.
Whose pain is worse?
Do I deserve to be less human because others will have pain?