Thursday, August 17, 2023

A Long Overdue Update... Plus My Recent Realization That I Have Agoraphobia.

Hey, everyone!

I'm sorry I haven't paid attention to my blog over the past few months... It's been a wild ride! 

So back in June I posted my last update–a video update. I then had my next neurostimulator adjustment appt in Seattle at UW on July 7th. I went to that appointment, and it went well. They decided to take my DBS's parameters (3.8mA's) and make the duration of the pulsation and stimulation longer. After I got back from that appointment, I felt fine for 4-5 days. But then suddenly I starting having SUPER severe anxiety that was lasting all-day-long in my body and my mind. I was SOOO anxious and was struggling so much about worrying about having a panic attack and having intrusive thoughts. So after struggling with this for about a week or so, I contacted my neurologist and she gave me permission to change my parameters back down to 3.8mA's w/o the longer duration pulsations. 
I immediately felt better, and for the rest of July/early August I was doing okay. I have though, been struggling with SEVERE motivation issues. I have been struggling with this for a long time. All I do during the day (since I can't work or attend school) is lay on my iPhone on the couch all day long watching these specific stupid/mindless videos. I cannot force myself to do ANYTHING else. I literally have something deep in my psyche that is preventing me from doing things like playing guitar/writing music or practicing my Spanish language on my Babble program. 
It's AWFUL. I hate living life this way... So purposelessly and without any joy. 

I HATE my current lifestyle so much. Being sedentary all day long, not having a purpose, not doing my hobbies that use to bring me joy. I always tell people; "I'd rather be flipping burgers for minimum wage for 8hrs a day–40hrs a week" rather than be doing what I'm doing now. While it may sound like a vacation or sweet life for some, I can assure you that it is INDEED a life of misery and torture. 
I just had my latest neurostimulator adjustment appt the other week. My team DID NOT end up adjusting anything or changing any of my parameters. My neurologist administered a YBOC test and my score was 27/40. This being -11 points down from my pre-op YBOC of 38/40. So she said that we should remain positive because my DBS IS working for my OCD. And overall my anxiety has been better. And also, I went 70+ days without a panic attack. So all that is great news. It's just been this motivation issue and severe depression that I need to work on and that I've been struggling with lately. 

I got a stern talking-to by my psychiatrist up at the appointment with him saying I need to take baby steps and actually work on confronting my anxieties and OCD triggers–like my therapist tells me. He said that I must stop doing my daily routine, get out of the house, and start doing some productive things. He's ultimately right... Me and my Mom agreed w/ him and so did the rest of my team. 

What's hard for me is now I realize I struggle with SEVERE agoraphobia. I never knew it was this bad... I use to just earlier this year go to the store, go out to eat, go to music stores, etc. But over the past 2-3months I've been avoiding doing these things like the plague–instead opting to stay at home on my couch/bed in my "safety zone". Just yesterday, my family and I took our dogs to the beach. We hadn't been in a long time, and it was important that we take my 12yr old dog Zoey to the beach for the last time, because she was recently diagnosed with nasal cancer–and only likely has a few more months to live. So we planned a trip and went. I was EXTREMELY nervous about going. My anxiety was high and my agoraphobia was SO BAD. I knew I was going to have a panic attack either in the car or on the beach... And that's what ended up happening. I had a MASSIVE emotional breakdown at the beach after being able to manage being there for about and hour and a half. I was BAWLING my eyes out, was having SO many intrusive thoughts, was having worried thoughts, was seeing disturbing images, was hearing voices telling me to commit suicide, etc. It ended up lasting for so long that my family had to scrap our plans of going into the beach town afterwards and having a nice dinner– and just pack up quickly and leave to go back home early. My crying lasted like 3hrs and once I got home I was a mess until I just took my sleeping pills and went to sleep. I was so upset that I ruined my family's plans for the day and that I made us have to come home early.

But it was VERY eye opening to see just how agoraphobic I've become, and how reliant on my routine I am. 

So overall, while some things are better–A lot of things are coming up and acting up again and causing me major difficulty. My depression has been horrific, and my relying on my comfort zone is terrible. I told my parents that I don't ever want to leave the house again. And while I know that's not a possibility, I did mean it when I said it. I really don't feel like I can leave the house again anytime soon. And if I did leave the house, it would have to be with someone I trust most, like my Mother. 

Anyways, friends! There's my update. Please if you wouldn't mind, say a prayer for me and ask God to relieve me of my agoraphobia and severe depression. Please pray that I stay safe and don't decide to do something that I can't take back. I'm in much grief–and spend most days sulking in all the grief I have over the previous 5-lost years of my life due to my disablement and severe mental health disorders. 

I just want to be normal again, whatever that means. To just get rid of this stuff forever and be able to be a functioning adult who can work, buy a home, have a girlfriend, get married, have a family, etc. When I look at my life now, all I want to do is end it. That's how severely I feel about my conditions. 


  1. Hi Mitch - Thanks for sharing your journey. I hope you are feeling better. Looking forward to reading an update soon. Rooting and praying for you

    1. Thank you so much! I've just posted a May/2024 update today.