Agoraphobia

I hate somatic symptoms. They override every rational part of my brain and take over. It leads to panic attacks and dysregulation. I dissociate more and cannot focus. Even my coping skills (which are diverse and usually very helpful) are too hard for me to even access. My brain cannot stop focusing on the fear. I feel like the only lighthouse operator (what are they called), hypervigilance kicking in because a storm is approaching and I am the only one and must be ready. Complex ptsd- you know?

Lately I have been extremely anxious. We all know why. I have been posting about it. And as things are progressing, it is leading to more somatic symptoms.

It is triggering emotional flashbacks that leave me paralyzed- unable to think about anything other than making sure I am safe. It reminds me of the somatic symptoms I got when I was calling agencies every morning begging for the resource of housing because my friends were kicking me out, again, because they didn’t think it would take this long for me to get housing. The disability system is really hard to survive. And the focus of health care now in its target- how could it not trigger these flashbacks.

GoFest, one of my favorite annual events I have participated in during almost every year despite my situations (which we have seen have been pretty dire at times), was hard for me. I also have been having an increasingly hard time taking care of myself, sleeping, brushing my teeth, leaving, thinking, showering. I am terrified and activated. My medication isn’t working. I’m throwing up purely from anxiety. I literally just throw up now. I am coping through all of this. My therapists have nothing but validating things to say. There are no changes that can be made. I am just existing. I’m not sad. I just am anxious.

And angry. Thank you to my friend who reminded me of this recently. I am angry that my life has become a system of begging for resources when I could be doing so much more! I have a great education and was a great school psychologist- a profession that consistently has openings because the demand is so great. However, because of a combination of trauma and chronic illness, I am disabled and have to spend my time and energy on fighting for resources that are now being fought over in politics. This isn’t about politics. This is about basic human needs.

I have been trying to get well, with so many inhumane barriers, while sick, just so I can return to work and have a normal life. I don’t want money or status or power. I just want a normal life. I want to live with dignity and safety. (People who have been read posts a couple of years ago probably know these barriers)

My boyfriend told me my words and thoughts matter. That I’m a good advocate. He tells me that for every person who does respond to my post, there are probably five others who do read it. Which is why I took the time to post today.

I am so scared today. Thank goodness I have both a therapy and a psychiatrist appointment with my wonderful providers.

#MentalHealth #CheckInWithMe #ADHD #ChronicIllness #ComplexPosttraumaticStressDisorder #Disability #Anxiety #Agoraphobia #PanicDisorder #GeneralizedAnxietyDisorder #AutonomicDysfunction #Migraine #PosturalOrthostaticTachycardiaSyndrome #POTS #ChronicVestibularMigraine

This is a vent- I already have a game plan of my next steps.

Case management has been one of the biggest struggles since I have become disabled.

I’m not going to get into all of the reasons I need a case manager but most of it has to do with getting through the disability system without losing that life saving support (because it’s really hard to keep up with the paperwork if you have been homeless) and to get to appointments and advocate for myself because of medical trauma and panic attacks that make it so I don’t get the treatments and tests I need when I need them- no matter how much I try.

I have had to open cases with the local mental health oversight agencies because of two agencies messing with my case management services. Both times, the agencies admitted they were wrong, but the harm was already done.

I have been without a case manager for months after I was discharged without warning by the most recent agency when I told them I wouldn’t see their psychiatrist because I already had one and they agreed to it but went back on it a month later without telling me.

I asked for a peer support person because someone told me that may be more appropriate, but I cannot because I don’t have a SUD.

I went to a different agency last month and the intake was so bad I cried through the whole thing. They didn’t want to know about anything with my physical health or conditions or the medications I take for them. Then they told me I was too high functioning and may not be eligible for case management. I said “I have had case management from other agencies for almost 8 years, I went through this entire intake and you had me share my entire trauma history, i am telling you exactly how my disability impacts my ability to perform these necessary responsibilities for my health, and just because you can’t see my disabilities doesn’t mean they are not there. If they were on the outside of my body then i guarantee I would qualify.” I didn’t think I would hear back from them.

Well I did. I had an appointment today and I spent the week in high anxiety state because I don’t want to go through the justification with someone else again. I “look” fine, i know. So after three separate conversations with my therapists, I made it into that office for a second time, trying to take deep breaths. I made it on time and I found out that they scheduled it at the wrong location. I told them twice I needed it at a certain location. I had my intake there. But they assigned me a case manager at a different location and didn’t tell me when they called me. So I went to the place where I went the first place, the place I requested originally. And the person wasn’t there.

I do not think providers realize how hard it is for people with disabilities to get to these things. I’m tired of explaining and justifying it all. I’m also worried about the upcoming vote on the budget bill that will cut funding for health insurance and make it more cumbersome to complete the already confusing necessary paperwork. (This is not a post inviting others to argue about whether or not this will happen- I am stating a realistic fear that I have checked with my therapists, and is increasing my anxiety about this situation because it feels urgent I get as much done as soon as possible since this is being proposed in the US).

Anyway, thanks for listening.

#MentalHealth #Disability #ChronicDailyHeadache #Anxiety #Agoraphobia #PanicDisorder #ChronicVestibularMigraine #CheckInWithMe #ADHD #AutonomicDysfunction #ComplexPosttraumaticStressDisorder #POTS

Well… I didn’t think this was going to happen.

I sometimes talk about the grief I have from going no contact from almost everyone from my pastz I had a very wide circle, and unhealthy best friends and toxic family members, surviving dv and homelessness- it just didn’t work that I felt comfortable knowing what I ended up knowing later. Specifically it has been hard to not be an aunt. I went no contact with my sister who was my first abuser. It was while the children were minors. I didn’t know what would happen but my sister was making my cptsd harder to manage after it being triggered by dv. I can feel it in my nervous system when “vibes are off”- someone please tell me this isn’t in my mind because the logical side of me is like- what do you mean???
Anyways very tangential- so my niece got mad at me when I was displaced to Cleveland for an unknown period of time and didn’t tell her. Now at that period of time I was no contact with my sister and really weird contact with other family members, I was still unhoused planning to go back to Dayton- and didn’t want that information passed along. I understood her point and told her that it wasn’t a conversation I could have (or something) and I am so so so sorry. I validated her feelings.
So yesterday I got a message from my niece on IG. She had unfollowed me- I refused to block her. She is still young and hasn’t done anything out of the range of normal for her development and knowledge of the situation. I am so happy! Although I was very sad that she grew tired of my sister’s abuse. I am not sure she knows that’s what it is yet. She moved out and lives with her boyfriend. She is over 2 hours away and I remember that liberty when I moved further from reach of my family. She told me she is “no contact” with everyone but my mom and my mom’s husband. I don’t know what she had heard about me, or what she believes about me. My sister’s abuse became worse when I became disabled even though we live hundred of miles apart and never asked her for anything.
I am worried about my niece though. She seems lonely. I hope when she starts working she gets some social time. I’m trying not to be the overexcited aunt who fell out of the family- but here I am.
#Agoraphobia #PanicDisorder #ComplexPosttraumaticStressDisorder #ADHD #ChronicVestibularMigraine #Migraine #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome

Hello, 27 year old woman here living with complex PTSD from long-term trauma, and lately healing has felt really heavy. Even though I’m in therapy, I often feel more raw and alone than ever, like the more I try to get better, the more isolated I become.

I grew up in Philly in an environment that made me feel like I always had to be on guard. I was hurt a lot when I was young, especially physically, and it left me afraid of people in general for a long time. I’m slowly working through that, but connection is still really hard for me. I’m swallowing the fact that the people I’ve known only loved me when I didn’t love myself.

I joined this forum because I want to start gently reaching out, even if it’s just a little at a time. I don’t want to feel so alone anymore. If you’ve felt any of this too, I’d really like to hear from you. I tried to fine tune this post as my general bad experiences will definitely be triggering for those with c-ptsd/processing any form of trauma. I also tried going on Reddit to no avail. But it taught me about mindfulness in posting. It’s just hard to get across to others that I nitpick myself to the bone so I’d much rather suffer in my own pain than to chance potentially upsetting someone else in the attempt to get help for myself.

I hope to post more and open up more as I integrate through this platform.

#CPTSD
#TraumaRecovery
#Agoraphobia
#MentalHealth
#Anxiety
#Depression

Something I talk about a lot is how much I am given as a U.S. citizen on SSI. This is relevant because it has put me in situations that caused me more trauma (homelessness, food insecurity, and very few resources and options to get and stay well). I receive $970 a month and I used to get $75 a month for food assistance- less than one dollar per meal, per day. Not enough to survive on, and definitely not enough where I had any room for spending any extra money- I have been afraid to drop my food because it would mean i wouldnt have anything to replace it with, unless I cut into the next day’s food). When I was living alone it was not possible to afford my life- even the basic necessities. The options for assistance never panned out for me due to a number of factors (where I live, there is a large population of people with substance use disorder where resources are funneled to bc of the need; since I do not have that, or children, I was rarely accepted for things that most people would think i qualified for even though I am disabled- I still continue to get denied for services I need today because I still don’t have those factors).

The other side of the coin is I have an Ed.S., spent 7 years in college, and have a student loan debt. I was the first in my immediate family to graduate from high school, college, and attend and graduate from grad school. Something that used to be seen as an accolade but not so much because it seems not to “count” now that I am disabled. My family repeats the lines of “if you take out the loans you have to pay them back.” Which of course I planned to. I also don’t really understand why this mentality exists when many people in my generation/SES were told if we don’t go to college we won’t get out of poverty, did not understand financial literacy, and these decisions were made to feel urgent in our late teens and early twenties. And also- how are we supposed to predict our lives? This isn’t a car loan. Some can be more like a home loan- especially with the interest rates charged and how they get moved around.

Anyways, I recently found out that my student loans can actually be forgiven because of how long I have been disabled. I will be submitting my application as soon as possible (60 months from my disability date- even though I was disabled before this- I had to take out my retirement and spend it down first). I was able to speak with someone today about it and I feel very relieved.

I know this is a somewhat unique intersection (both as a US citizen who had to take out loans for college, and being disabled under SSI where the rules are extremely restrictive), but I wanted to share it with anyone else who may also share that intersection.

#PosturalOrthostaticTachycardiaSyndrome #Disability #ChronicIllness #ChronicVestibularMigraine #Migraine #Agoraphobia #PanicDisorder #GeneralizedAnxietyDisorder #ComplexPosttraumaticStressDisorder #ADHD