This will be updated through the day.
I’ve written several posts about this situation. My anxiety is so high that I am trying to document it.
We have a plan. We have a schedule. We have four different sets of instructions from the venue.
Overnight – very poor sleep. Lots of frightening dreams involving crowds descending on me. Woke up screaming around 1 AM Woke up around 3 AM, trembling. Took PRN dose of anxiety meds. Eventually fell back asleep. More dreams about not being able to communicate with other people. Wake up at 645 AM.
6:45 AM. I’m trembling uncontrollably. Using breathing techniques to manage. I use the bathroom. My wife wakes up to start her work day. I tell her what’s going on. She is comforting and reassuring.
7:15 AM. Back in bedroom. Wife taking shower. Debating when I can safely take another dose of meds. Without notice, I vomit into an empty cat food container. Foster kittens are alarmed. I lie back against pillows and my breathing steadies. Wife returns to our room. She’s concerned about the toll this taking on me.
7:30 AM. I bolt to bathroom. After a few minutes of being sick, my wonky digestive system kicks in and I now have d+ for awhile. Now that I’ve emptied my GI tract, I am back to just being trembly.
Not quite 8:00 AM. I am using my tools to center myself, identify the anxious thoughts, and reinforce the facts I can control in this situation. My wife is handling morning cat chores. I’m going to try to get dressed.
8:02 AM. Cat locked in second bedroom. I cannot figure out how. She’s stressing, so am I. My wife comes to show me that she had disabled broken door know until it can be repaired and is using our hook & eye to keep door closed. Cat is fine. I have to run back to bathroom. I am frustrated at not being able to resolve simple matter.
Stay tuned …
8;30 AM. Drive my wife to work and come home. Listening to music on the radio helps me step away from the anxiety. I come home, drink a cup of coffee, and turn on Hulu to keep a steady “stream” of distraction content on the television.
10 AM. My chest hurts due to a combination of anxiety and my allergies flaring up. I’ve been doing deep breathing every so often. It helps for a minute, but doesn’t last. I’ve been to the bathroom two more times and vomited a second time as well. Now, to be fair, my ongoing GI issues are tied to something else. Still, the stress is triggering my symptoms. And the ongoing issues are possibly tied to an autoimmune diagnosis which is another circle of hell when it comes to being devalued in our society.
10:10 AM. Someone knocks on the door and I jump up, adrenaline coursing through me. This is an old reactive response that I worked through in EMDR a few years ago. Then Iook at the Ring camera and don’t see anyone which makes me panic, until I realize it was actually the cats knocking a container on the floor that sounded like a quick rap on the door. That darn cat. I’m off to the bathroom again. I’m really thirsty, but nothing sits well on the stomach – not water, not juice, not ginger ale.
10:30 AM. These are what I often describe as “lost days” where I count down the hours until the anxiety causing event arrives. I know intellectually that once I am there and seated and the lights dim, I will be okay – usually. That’s when I’m not subjected to absurd paternalistic crap. TBH, I also look forward to the event or activity being over so I can come home and recharge. I continue to go out and attend things because it is best for me. But these hours? It reminds me of the time when we have a vet appointment to put a beloved family member to sleep and I have to sit here, waiting for that time to come and dreading it. That’s how this feels. It is agonizing. I wish Carnegie Museum and all of the promoters and venues realized that people like me need these artistic engagements to keep our lives rich and informed, but all we need is some comfort and respect for our needs. I’m not asking for a front row center seat and a red carpet or a deluxe box seat.
1:22 PM. I did accomplish a little bit of work today, but I’m very shaken. Takes me twice as long to complete a thought or type something. I am not properly hydrated so that doesn’t help. My stomach is still rolling a little bit, but not as badly. When I start to think about getting ready for the show or going, my heart begins to pound and my breathing gets shallow. I shove the thought out of my mind, but now I’m wavering on whether I should go. Why do I have to be the person who makes a point? Why can’t I just stay home where I feel safe and read the Hannah Gadsby book? I am pretty resentful at this moment. All of this for something I’ll surely be able to watch on Netflix one day. Is it worth it? I’m inevitably going to have nightmares tonight, too if I do go. That’s one way the anxiety works its way out of my system.
Accessibility battles are hard for me because the sexual violence in my childhood was being groomed by an adult (now dead) member of my family AND watching that person assault other women in my family. So I want to be an advocate and not helpless on the sidelines. But I also do want to not feel so alone.
Is this worth it?
2:15 PM. This is the part where things flip flop in my head. Is going to show the win or is it torturing myself to conform? If I take an anti-anxiety pill now, will that mean I’ll be too drowsy to get ready properly? Should I wait til just before we leave? Why are tears streaming down my face? Should I just always stay home? I mean they don’t want me there, right? It’s not personal, just the way they see any person with hidden disabilities? They don’t allow for my realities because its pretty horrifying to think people like me walk into a room and might talk about it, as a processing tool?
My stomach is hard as a rock. Trying to be careful about using my rescue inhaler too much to help me breathe because albuterol can feed anxiety and even hypomania. Can’t take decongestant today also because I have to ration it to avoid triggering hypomania. Its so crazy to have to deal with symptoms. Med side effects. But med side effects that trigger other symptoms? That’s not cool.
But, I mean, I can totally see that your phone-free experience is on par with all of this. Right?
2:54 PM. I emailed my therapist b/c I now doubt my capacity to sort this out. Her response is below.
My wife said to me “You take medication every day for this. You go to therapy. Why can’t they do better by you?” She’s not wrong. I didn’t create this mess that is my mental welfare.
What she’s referencing is that I submitted a request for accommodation over the weekend and they had no plan. Changed their instructions for times as late as Wednesday evening. If this had been properly addressed on Monday, my meds and therapy would help manage things.
3:30 PM. My wife and therapist both want me to stay home. My chest is still very tight to the point that it hurts to take deep breaths so I’m going to jump into a steamy shower. I hate this a lot. But it is a familiar pattern.
4:15 PM I went to pick up my wife from the T (our subway) and I’m so jumpy. The T stop is a mile from our house. Now that I’m home again, my heart is back to racing and my breathing struggling. I’m not even sure how to try to unwind. I’m not going to the show. This blogging exercise has been sobering for me. I am still very jumpy and scattered.
But to be honest, this isn’t just about one event. Granted if they had told me the plan on Monday and I wasn’t fretting it about all week, I probably would have been in a better place. But this is also decades of similar poor treatment by all sorts of institutions – restaurants, banks, employers, public transit, airplanes, etc.
But now I know that the ‘phone-free experience’ is not for me. At least not now. I am trying to find a journalist to investigate the story, but no luck so far.
I’ll update in a few hours to assess if I can decompress a bit.
6:26 PM: I walked down to feed my cat colony just a half block away from my house. I rarely see anyone except the cats. Today, I ran into two people. One was a new acquaintance, sent to mow the property next to our lot and the other was a neighbor who brought me some apple dumplings while we caught up on cat folx gossip. It was just the trick to switch my mind over to new topics. I walked home and felt a little more like myself. Laura just left a bit ago to head out to see the show and I’m now watching a 2006 adaptation of ‘Jane Eyre’ on Amazon Prime video. Probably not the most soothing series, but it is familiar and thoughtful in ways that ground me.
So I am better, but sad that I had to go through all of this. Do I just stay home forever?
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