In my head, I am hiking the Appalachian Mountains or jumping out of an airplane this year for my fiftieth birthday.
In reality, I’ve been unable to take a walk on the beach for a year.
Last week’s trip to the ER revealed I had a vasovagal attack, which basically made me feel like I was dying, but I wasn’t. What scared me was the loss of vision, because everything else I have pretty much already experienced on a smaller scale. This week, I will begin wearing a heart monitor for 14 days, and in a month, have a heart sonogram.
Deep under my left armpit is so sore, I have described it as if someone kicked me, but more recently, the pain has more of a burning sensation and and radiates from there. The entire area feels “puffy,” often feels inflamed. I reported this to my old PCP seven months ago at the most miserable doctor’s appointment in my life. She barely looked at it, and told me it was from shaving – even though I knew I knew it wasn’t. I’ve been shaving my underarms for 40 years. I think I know the difference between an issue from shaving and something much different. I also reported this symptom in October to my new PCP, and I’ve repeatedly told everyone that the entire area hurts. I mentioned again to my new PCP at my last appointment.
Then it dawned on me – even though I’ve had mammograms come back fine, no one has checked my armpits, and I have not had a manual breast exam from a doctor in at least three years. Since my hysterectomy, I no longer get PAPs, which is usually when they do breast exams. It used to be done at my regular yearly exam, but my local VA no longer has a women’s wellness program for that, which is a fucking sin, so they leave it up to the yearly GYN exam, which I don’t get. This is just one of several huge cracks within the VA system.
Some mornings, I wake up feeling like everything is surreal, and time is different. The only way I can describe it is: time comes and goes in the same way it does when you run a high fever. Except I’m not running a fever.
I believe this health issue affects my brain more than I know. Obviously, something physical is causing this, but I can see how it easily resembles mental illness. And this is what’s scary – because how many people are diagnosed with mental illness because of something neurological or microbial that never gets diagnosed and treated properly? I have been saying for years and years and years that I mainly feel depressed when I don’t feel physically well. And I’ve been told that my physical symptoms are caused from depression, which I call bullshit! This is physical, and whatever it is, is what’s causing depression. Who wouldn’t be depressed in this situation??
Two months ago, I found myself checking my phone and calendar several times a day, setting timers, etc., so that I wouldn’t miss appointments. Normally, I take mental note of my appointments and check my calendar every few days. I had no “mental note” of anything at all except I had to be somewhere. I couldn’t remember if I’d already gone or what day of the week it was, and some days I was checking hourly. I really thought I was losing my mind. Living alone, no one is around to notice any changes in my physical movements or behavior, so everything is on me to write everything down. (This gets extremely time-consuming when my symptoms change every few minutes or several times an hour.)
After attending an important court session via video, I found myself checking the calendar to make sure I didn’t miss it so I don’t wind up in jail for failure to appear. This was very real and scary to me, because I have no one to help me with any of this. And I continued checking the calendar afterwards, because I couldn’t remember if I’d dreamed about it or if I actually attended. One month I paid rent but panicked, because I thought I’d forgotten.
All of this affects my ability to keep up with paying my bills that don’t automatically come out. It affects my ability to do many things that require organization and clear thinking and attention to detail. Being more of a brainy person, this is super frustrating. I’m unable complete paperwork or do anything that needs to be done, because I can’t comprehend what I read.
Any type of fake environmental stimulation confuses me (by fake, meaning not made by nature). Being surrounded by “things” causes anxiety. (I removed many “things” out of my home.) Going to the store and looking for one item, but being surrounded by so much often causes confusion. Depending on what kind of day I’m having, sometimes I will walk out, because I’m so frustrated.
High traffic makes it really difficult for me to drive, because it’s too much going on. On these days, I avoid driving, sometimes canceling appointments if I can’t find a ride.
Hearing high-pitched noises, like phones beeping or leaf blowers or dogs barking, is like an ice pick to my brain. Bright sunlight makes me nauseous, and the sun no longer feels good to me for more than a few minutes. Being a Florida girl, this is truly bothersome.
A few months ago when my brain was feeling really electrified (for lack of a better description), I left my house a few times “knowing” I shut and/or locked my back door. When I’d come home, the door would be wide open. There is a really good possibility at least once I didn’t shut the door, or perhaps the cat pushed it open if it wasn’t clicked tightly. Last December, I swore I shut my door and heard it click before leaving for the day. Returned home, it was wide open. I suspected my neighbors were entering my house when I wasn’t home, because they were being super weird and invasive. I ended setting up a camera, because I really thought I was losing my mind. I wanted to see if they were really doing something or if I was forgetting or imagining things. Nothing ever came of the camera set-up, so there could be a few different explanations for these things – like, I simply forgot… or the cat again. Or the neighbors saw the camera…
When my brain finally calms down, things are SO real, I don’t know what to do, so I panic and think the worst, because shitty things keep happening. And the worst is a very likely outcome, statistically. All I keep thinking about is how am I going to support myself if I don’t get better, because I don’t think I’m going to ever be 100% better. So now I am looking into disability, which is something I had never really thought about having to do for at least another 30 years. It feels more like a knowing rather than a fear that I will never have the normal lifestyle I used to have.
I feel like it’s the end of my world as I know it.