a Scarlet D

My mental health journey

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  • Ok, this is going to hurt

    Obviously, a lot of content on this blog is about emotion and emotional hurt, etc. I think I’ve talked about the fact that needles don’t bother me anymore. After two series of ECT (with IV) and so many ketamine IM shots I’m pretty numb to them. If I recall, I haven’t had any meds that caused headaches or other kinds of pain. Again, memory sucks but…

    There are two therapies I have had that have caused uncomfortable pain.

    The first was the BrainsWay Deep TMS. Plain old TMS is like a woodpecker, but it’s more of an annoyance than pain. But the deep TMS tickles something in my head in a unique way. It fires for a few moments, then there is a pause for a few beats, then repeats. While it’s firing, I have felt my depression something like 10 times more than normal. While that sounds bad, at least it’s doing something, and maybe will do something positive later. When it’s done firing, I go back to normal depression. It’s hard to explain, but that’s it. Also, I end up feeling tired and weak afterward. The pain part is the tapping on the head and the headache I get on a regular basis. Like the one I have now. In order to map the machine to the location in my brain that they’re shooting magnets into, they try different settings, and when my thumb twitches, they can determine the final target. My tremor is bad enough that it was hard to see what was twitch and what was tremor.

    The second is my VNS. If you’ve been reading you’ll remember once it was in and I was healed, we ramped it up by .25 mA — eventually getting to 1.25 mA. I thought it was only 1 mA but today my doctor said we got to 1.25 mA. Regardless, in order to qualify for the Deep Brain Stimulation clinical trial, they want to exhaust every option. So we’re going to take it up to 2.0 mA. The reason we stopped where we did, was that the next level up in the ramping was causing me enough discomfort and pain that I was having trouble handling it. I don’t remember the feeling, but I remember it was tough. And I’m pretty good with pain. So to ramp up three more levels kinda scares the crap out of me. At least they didn’t suggest more ECT.

    Did I mention I started deep TMS today? Every weekday for seven weeks. I’m just thinking about gas consumption in my car. Seven weeks is St. Patrick’s Day, technically it could get warm enough to go convertible in my car. Also, next week I have the appointment where we increase the VNS.

    So I’m sad. I was having a rough day already. I’m trying to figure out bills, are they pre or post medicare? Trying to get started with a new online pharmacy, and finding most of my critical meds aren’t covered by my drug insurance. Literally thinking of canceling it if I’m just going to pay out of pocket for everything. And they won’t mail the controlled meds, so what’s the point?

    Over the last month or two I have been feeling a depth of hopelessness that hurts. Isolated in my apartment, no structure and all the time in the world to stew. And I’m quite deep in the hole. We talked about adding structure, so going to TMS every day at 1:30pm will get me out of bed, though I’ll have to set an alarm and get up early for that. Only half kidding there. My sleep is completely messed up. We’ve also talked about getting back into a DBT program. It would have to be in the morning to allow for the TMS, which would mean more activity than I’ve been used to for months and I’m dreading it. My weekly appointment count would be ketamine, TMS x5, Therapy 2x, Psychiatrist, DBT group, DBT coach. Grand total of 11. I know most people put in 8 hour days and then some, but an hour at the clinic just talking to the Social Worker was exhausting and wiped me out for the day. So 11 appointments a week is going to be a heavy load.

    So that’s where I am. I’m deep in a new strange low of depression, anxiety is all over the place, and my tremor seems like it’s getting worse. And my city is occupied by the National Guard.

    Good news is that disability has kicked in again and I got a nice retro payment.

  • Between the Between

    I wrote about drowning between therapy sessions. If I miss one, it’s very frustrating. It isolates me further and reminds me that a canceled appointment for anyone else is just that. (And my bad brain tells me I’m not important enough) Like a runner who paces themselves for a rest and reaches that rest exhausted, I’m reaching the appointment exhausted, When canceled, I begin the next waiting ready to drop. Things are very hard these days, and I’m always surprised by how my mood can be broken so easily.

    Today my therapist canceled. I’m feeling at sea, disappointed with today’s cancellation after a very long weekend. I do have another session at the end of the week.

    But this is an awful long time to be drowning.

  • Somnum Rumpitur

    Friday, 2 hours of sleep.

    Saturday, hadn’t gotten to sleep until something before 5am.  Woke up at 6:40pm.  Couldn’t get out of bed until 8: 00.  Crap. I just lost a day.  slept 14? hours. This is unbearable.

    All I want is to not exist. Normally sleeping is my way of having that for a time. But I feel like something was stolen from me, a day I would have hated to live. That’s irony, right?

    Last night 5 hours. As usual though, feel groggy and exhausted.

    We’re trying to re-jigger my meds to help stabilize sleep, but this is maddening.  More sleep meds to get me to sleep, stimulants to wake me up for the day. Often my night meds leave me thick, feeling as if I’ve just woken from the deepest of sleep.

    Added my prn benzo at night because the CPAP which has worked flawlessly for me for over a decade now makes me claustrophobic and anxious. Anxiety has never been part of my sleep. So now I’m worried the regular use of the benzo will reduce its potency over time, trying not to think of it the addictive properties.

    It’s like being completely exhausted except you can’t sleep.  It’s been weeks since I’ve had a proper night’s sleep that hasn’t left me tired, frustrated, and feeling like a zombie. Seeing my meds doc weekly.

    Whole care team is trying to find a program for me: PHP, IOT, DBT, whatever. I understand the need for structure, and I can’t do it myself. But the idea of being in a day program for more months or a year makes me feel like I’ll never get better.

    On the plus side, disability has been turned back on for me so the fear of losing my apartment is much less.

  • Between

    (I am fully aware that this reads like 7th grade angst poetry but I don’t have it in me to rewrite/edit.)

    It’s the time between distractions that’s the hardest. Between therapy, clinic, ketamine, dinner with friends. Those distract me from myself – thanks to friends. They distract me from my mind – thanks to ketamine. They distract me from my time – thanks to the clinic. Unfortunately, therapy often distracts in the wrong way – thanks to poking at my psyche.

    There are only so many movies you can watch, or shows you can binge. When you have no interest in anything, it’s even worse. We all flip through options on streaming channels without ever choosing anything. And we all watch short videos of things that are the equivalent of cholesterol for our brains.

    My friends are so expensive. The cost of getting out of bed. Showering. Dressing. Going. In the end it’s a return to home wiped out. They are worth it though, and they make me laugh and I make them laugh. That’s good for me, I’m sure.

    Inevitably, I am going to end up back home. Maybe I’ll go straight to bed to not sleep for six hours. Or I’ll binge something on TV without really paying attention. And then I’ll go to bed and not sleep for six hours. But most of the time I feel alone and bored and I have this pain in my chest. Maybe that’s my soul. But all I can do it be there and wait out the clock. I can’t eat, I can’t sleep, I’m not interested in anything.

    I don’t know how many people understand the between. It’s just being alone with your thoughts or raw emotions. Just waiting for something to kick in and help. Or waiting for the energy, motivation or hope to try something helpful for yourself. Just how many hours there are between things. I know structure would help, but that’s another topic for another day. Friends say they’ll see me soon. Clinic techs say “See you next week.” Today when my Therapist said “Hang in there,” I wondered if they know how long that is when you have no landmarks on the sea?

  • Meds

    My psychiatrist helped me change my meds a bit because I wasn’t sleeping. She wanted me to go to sleep earlier, get up earlier, and be active during the day. So we increased the sleepy time med and we increased the stimulation med. Except I feel like it’s all gone south. Because I don’t sleep enough, the sleep meds are still working while I’m awake and then adding the stimulate to that just makes everything swirly and crazy and contradictory. I am working really hard not to cry right now, which is not me. Ironically, these changes were the result of a virtual meeting I had with her last week in which I spent the whole time crying. Again, not really a me thing. I’m having to use the apple dictation which is kind of neat but I couldn’t type, as all the letters were off. It’s like I’m drunk, but I’m not. And I’m gonna have to guess that this is all going well because I can’t read the screen because my eyes are too fuzzy. I’m used to trying med changes, but this one is troubling.. Honestly I feel like Drunk Robert. Not cool. I could revert the change to what it was before. Not that will help the sleep at all, but I don’t think much can help the sleep. A lot of a lot of it is willfulness more than scientific insomnia. Yesterday I visited the old house because both kids were in town. We had a lovely dinner, but I felt like everybody was worried about my stumbling around. Normally it’s me feeling stumbly but nobody else sees it. That night I got the “help your dad out to his car” thing going on. Yes, I drove. But like Geri on facts of life said she’s one of the few people who can drive better than they can walk.

    Keyboard and screen are making me frustrated so that’s it.s. Just wanted to complain into the void. Thanks void, ignore the typos

  • Accidental Homebody

    Accidental Homebody

    Stealing the title and just a bit of my content from my travel blog here. So if you’re reading this getting upset at my self plagiarism, just read on. It’ll get better. Or worse.

    On the 10,000 mile road trip I was lucky enough not to experience any tickets, breakdowns, or crashes. Settling back into home I faced a mental crash. The fact that I was dismissed from work and all that comes with joblessness has worn me away. An accident I could see coming and there was nothing I could do to prevent it.

    The accident, or crash, was. mental. I think we were all thinking the trip was great, but what about when I get home? No job, no structure, new money worries, and then there’s the good old fashioned depression, with a fleck of anxiety for flavor.

    As for homebody, that’s been described as a person who likes to stay at home, especially one who is perceived as unadventurous. Unfortunately , I have gone from adventure of a lifetime to an extremely unhealthy solitude. My best friend is there for me, we go out to dinner and linger and chat, which helps. But that’s a couple hours of a day, and it certainly doesn’t cover the darkest of night.

    The darkest of night being the hours from 10 pm to 3 or 4 am. Or 5. I’m not going to bed for the same reason I can’t get up out of bed. Hopeless and pointless. I’ve had a med change to help me sleep and help me be awake. But after 3 ours sleep I still feel the buzz and the density that makes it hard to walk a straight line. The increased stimulants help with that some, but no matter what you give me, three hours sleep is still three hours sleep.

    I used to love solitude, and I still do. After the trip everything feels a little off. Being alone is good and all, but I feel like I’m drowning (nothing new) but now I’m reaching up for help. Which is ridiculous for someone who can only see one way to make the “curl up and cry” go away.

    Speaking of crying. Until a week ago I couldn’t cry. Wouldn’t? And then something happened.

    Our local coffee hours / bakery announced it was closing on January 1st. The whole family was sad. I was really sad. They had perfect eclairs. My sister initiated me into the eclair club back when I was in grade school. And I enjoyed so many eclairs at this place. Sad to lose the eclairs. I was fine, like a local Target was closing. I’ll just have to go to the one a little further away. My daughter and I decided to go one last time before the closed, for old times sake.

    The retiring owner was by the register, doing something of a meet and greet. He looked at my 22 year olf daughter and commented on how much she had grown since we started going there. I don’t think I had forgotten we did it, but I don’t think I connected the place to the important memories.

    When she was in grade school I would go meet her at school and we would walk home. Once a week or so we would stop at the bakery on our way home. It might have been a couple times a week, likely because I wanted a latte. We would sit at the tables by the sidewalk and talk about her day. When I think of her it’s one of my. most cherished memories.

    I swear to god if I start crying in the middle of this coffee shop I’m going to be pissed.

    Daughter teared up by the owners comment and memory of her. I was severely touched, but I can’t cry. We had our treats and drove both blocks back to the house. Yeah, I know. They actually were out of eclairs, which bummed me out, so on the last day I went down early enough and got two eclairs. My ex-wife did something similar but got eclairs for my daughter and me. We may have divorced but there’s an old growth love there that will always be there.

    Great, went through that. Faked it quite well, then went home and spent the rest of the night wanting to die, as usual. Also spent 40 minutes looking at all the stuff Netflix has and not watching anything.

    And then I had therapy. I was trying to explain the coffee shop experience, and did a pretty good job.. Right up to the part about spending so many afternoons having conversations with my daughter. Age 6 and upward. I knew that, and I knew that we did all that. But I have no real memory of it. Snapshots in my brain, but the soul filling time spent with her wasn’t there. I had been robbed of some of the very most important memories of my life, and it upset me.

    Cue ugly sobbing. For a long time. When I regained my composure we talked about it but my Therapist stepped on a. huge landmine and took out a whole platoon. She attributed the memory loss to the possibility that I was getting old. That upset me but I didn’t say anything right away. A minute or two later I interrupted and voiced my issue and we talked about it, she apologized (therapy bingo square) and we continued on. It wasn’t something that made me want to stop seeing her, but I’m very sensitive about memory loss vs old age.

    When I talk about my memory loss and my memory retention issues I often get “Oh I know what you mean, I’ll walk in the kitchen and not know why I was there, but I eventually think of it.:” – and I’m not discounting that. This morning I was ready to head out but knew I needed to do or get something from the bathroom. And then I’m just standing therein the bathroom and I know I’m not going to think of it. Three hours later and I have no idea. But standing there in that moment wasn’t a “derp I’m old” feeling. It was being stabbed ever so slightly in the soul. It was being reminded or my problem, and then reminded or the reason I had ECT, and so on.

    So the fact that I couldn’t remember a key experience made me sad for forgetting it, frusterated there was nothing I could do about it, and finallly break down over everything happening and broken and densely sad. Straw that broke the camel’s back, I guess.

    Because I was seeing my Psychiatrist (drug doc) and spent the whole hour either crying or on the brink. I just couldn’t control it, and I think it freaked her out a little, as she sent a note to my TRD doc during the call. She tried the usual stuff`, set a schedule or volunteer somewhere etc. She asked if I liked animals and I replied that I didn’t want a pet because I knew that’s where I was going. I can’t take care of myself, eat, and I sleep so many hours a day my apartment would become a poop minefield.

    I think seeing me that desperate and sad (and crying) might have freaked her out a bit. It was a good call, and we adjusted some meds, but really just another check-in call. WIth ugly sobbing.

    I really wanted to get this out. I’m not sure if it helped, but maybe. It’s just that my little girl was so goofy and smart and interested in everything, so those coffee chats were always amazing. But I’ve lost the part that was my daughter. Like part of her childhood is just gone and I can’t find it.

    Heartbroken.

  • On the Road

    I may not be Kerouac but I am indeed on the road. It’s been fun, exciting, tiring, surprising, spiritual, and tough. I was great until I got to two different cities where I had history. It was so nice to see them again and eat at restaurants I missed, and things like that. But I stayed in each town probably 12 hours too long. The last one actually had me questioning the choice to make this trip, and I got pretty deep into my head

    A good nights sleep helped a lot, and the next city I went to was one of those “Disneyland for adults” kinds of cities. Oddly, even though I don’t gamble or drink anymore, I enjoyed myself and was quite rejuvenated.

    Tonight I visited with family and had a wonderful time. Some of my favorite people ever, and great to hang out with. I was helping fill in my “file” they had and we talked about the last 5 years. It was hard to recount, both in terms of bad memory but also details. I probably went too deep, but it was all just answering questions. It has, however, left me pensive. Though I know I’m tired and they doesn’t help, it’s made me create another one of my rules for the road: No Reminiscing! It shouldn’t be hard, as those were the big memory spots, and everything from here on out is brand new or familiar in a general sense. I’m sure I’ll shake off this mood in the morning as I blow out of town to do a marathon driving day – the first of 5 days!

    It is a bit disheartening, as I meant to leave myself behind. But of course we bring ourselves with ourselves. My depression has been right behind me like a backpack, not in the forefront but happy to remind me we haven’t succeeding in fixing that. That makes me sad.

    Just wanted to tell you about that. Thanks for listening.

  • Therapy Road Trip: Finding Myself by the Ocean

    Work just couldn’t wait for me. They made it clear it wasn’t about me. It was about needing someone in the role. My team needed a leader. And I get that. While unemployment brings so many stressors, I have to admit I’m relieved. The stress there is what landed me in the pile of goop I’m in now. One thing they left me with, though, was long term disability. The company helped with FMLA and provided short term disability during my absence. They’re funding the long term disability as long as I need it, or for 2 years, whichever comes first. It’ll just pay the rent and the bills. It won’t allow me to buy a new 500″ super flat screen TV. I can’t buy a pair of jet skis either. However, my day to day will be helped considerably.

    Ok, I’ve fallen off the therapy cliff. I don’t have a job to go back to. I need something. Structure or something to look for. Well, we’ve been talking about that in therapy and group, and I have a plan. First, though…

    I always said if I ever lost my job, I’d get in my car and head west until I hit an ocean.

    Dinner with a friend grew the idea to a real road trip. More chats with friends transformed it into a real concept. My care team was also part of the transformation. I didn’t commit to the idea for a long time, as I was scared of being disappointed. It was just last month that I attempted suicide. And this month I had the worst panic attack of my life – that almost ended me up in the hospital again. So this trip is a scary idea. But it gave me hope, something to look forward to. Within a short amount of time my whole care team were on board, embracing it as a positive change/therapy.

    And so, tomorrow morning I’m going to get in my car and head west. Until I find an ocean. I may still post here, but maybe not as often. I’m sure I’ll have some thoughts driving so many miles..

  • The Return to Now

    I hate it when I’m in my ketamine therapy and the soul-recharging dissociation crosses a line back into reality.

    As I’ve described, at the bottom of the experience I feel like I’m at the atomic level, one with the universe, and all that. As the potency of the ketamine starts to soften, I start to come back “up” to reality. For a while I’m still convinced I’m in a simpler state. That everything is just a copy of everything, and the events that happen are simply repeating over and over. But as time goes by those events become more complicated, longer. At some point my perspective changes from that of something tiny that is part of a fabric of the world – and the new perspective is one of someone taking ketamine, aware that they are in a chair in a clinic.

    And that’s the part I hate.

    I keep my eyes closed and try to relax and enjoy the rest of the ride. But it’s not the same.

  • Day Program Elephant

    On the way back into one of our rooms at the Day Program, I noticed something on the white board next to the door. It’s my elephant. When the kids were little I came up with this elephant and a giraffe, and maybe a lion or something. Some doodle I could knock out in one stroke or so. Ear to trunk to leg, tummy, leg, over the back to the head. Two long lines with a bunch of little ones between and you have a blanket on its back. Little tail and you’re done.

    My memory sucks, right? Well I couldn’t remember drawing that during Day Program. Or PHP for that matter. So I asked our therapist if she knew if I drew that, or how long it’d been there. She said it was there ever since she started working there.

    But the last time I was there was summer of 2021. I can tell you without a doubt that’s my elephant. Which would mean it’s been there over 4 years. I don’t know if I believe that, or if you should believe that. But if it’s true that’s pretty fucking cool.