The week has left me feeling a bit fragile and much defeated. I started it out with my head pain specialist Monday afternoon. We discussed my headaches, celebrated how much better my migraines are, the fact that I’m still getting these sort of nebulous , all over feeling headaches almost every day, especially when I’m upright for long periods, especially walking around. Since my MRIs are more than 5 years old, we decide to repeat them and check for signs of cerebrospinal fluid (CSF) leak. He had me take blood tests to make sure my kidney function was acceptable and we went from there.
On Wednesday, I checked my results and other than my glucose levels being just outside of normal range, everything checked out fine with my blood work, so I called to schedule my MRI. They actually had an opening on Thursday, so I took it. I was nervous about the dye and how I might react to it in my current state of mast cell flare up, so I arranged for my husband to drive me and took 50 mg of benadryl starting out. I also hoped that since I’m claustrophobic, its drowsy effects might help calm me some, as I didn’t ask the doctor for a script for anything and I’m not being prescribed anything for anxiety attacks.
I had an MRI of my lumbar in January, so I knew exactly where I wanted to go to have my imaging done. There’s an exceptionally roomy machine at the University of Cincinnati’s brand new state of the art football stadium and since I’m both a person of size and a claustrophobe, I get to use it. For my lower spine, it was a breeze because I got to go in feet first and I really only went in up to my nose. I still began to panic a little, and I am breathing heavy now just recalling the memory as I write this, but by controlling my thoughts and breathing, I had it under control within the first 5 minutes.
With my white coat syndrome (anxiety related to medical procedures and practices), it helps to have familiar surroundings, staff I’ve already met and to understand the expected protocol. I was still nervous, but less so than I was in January. I got there and everything seemed to be the same, right down to the sweet and talkative receptionist who shares the burden of migraines. But when the tech came to get me and told me I would have to change into a hospital gown when I hadn’t had to in January and had taken great care to ensure nothing metal was on my person, it threw me, causing a small spike in my anxiety.
For a brain MRI, your head is placed on a head rest that juts out on either side of your head and a cage gets attached to it so that it circles your entire head like a helmet. You’re then fed head first into the machine. The second the cage was snapped into place over my face, my heart started like a gazelle caught by a pride. It isn’t in any way rational, I know that logically. I even loathe myself for my lack of control. It does me no good. My pulse zips through my ears. I begin to draw air in big gulps as my body floods with cortisol and adrenaline. I am ready to fight, to run for my life from a thousand pound predator, but I can’t. I am trapped in a tiny cage on my back, about to be fed into a giant coffin by the tap of a button.
The tech looked at me, frowning. “Are you okay?”
I held up a hand.
“Do we need to stop?”
“I just need a minute,” I managed, panting. I could feel her staring at me and wanted to scream, “You’re not helping,” but I managed to hold my tongue.
“Are you okay, hon?”
“I’ll be alright.”
“Just close your eyes and relax. Don’t think about it.”
As my eyes slid closed, the bed began to move into the tube and my panic rose higher still. I clamped my eyes shut against the terrible truth. Thoughts of controlling my breathing and finding tranquil scenes to concentrate on were often losing out to the urge to scream, kick and cry until they got me out of that contraption. Then I realized that not knowing just how tight of a space I occupied was simply more than I could bear, so I opened my eyes as I have always done before. Everything swam, white on white and shadow over shadow, everything danced until finally things came into focus. As I realized there was more than a foot between me and the walls of the machine, I could begin to form a plan of escape; I needn’t rely on the tech. Feeling reassured, it became a little easier to control my breathing. I could close my eyes again, this time without clenching them shut.
There are certain truths about oneself one should never lose sight of and for me, there are two essential truths that this experience highlights. One, almost all aspects of my neurotic behavior stems from a lack of control, my fear of losing control is deeply rooted in my trust issues, and the way to reach me is ultimately is always through logical arguments over emotional coddling. I know that sounds like three things, but it’s really only two; I’m incapable of trusting others (and therefore of feeling safe in vulnerable positions) and that I really can’t gain control over my emotions without either addressing them with logical solutions or examining them thusly.
I’m not even sure how I came to get claustrophobia. It just showed up one night, in a haunted maze when I was twenty-one. I was with a group of friends, we were in a tunnel, and as the tunnel grew smaller and smaller, I froze and began to hyperventilate. My friends had to get me out, pushing and pulling as I tried desperately to keep from passing out.
At its worst, someone being trapped in a small space on a television show will trigger a panic attack, though I haven’t dealt with that in a while. For me, it generally has to do with how safe I feel in my surroundings, coupled with my health and how well my dysautonomia is being treated as to whether or not I can deal with small spaces. Even putting my mask on causes a slight amount of panic, as it feels restrictive. I have no doubt it stems from my PTSD, but whether it stems from a single incident, I cannot say. To say that there are gaps in my memory is an understatement. Even as a teenager, I was aware that there were years of my childhood missing from my recollection and while the mind sometimes guards us from the things we cannot handle, it usually leaves the feelings and fear attached behind. There are a few memories that are good candidates, most especially the one that caused my first anxiety attack when I was fourteen. I never think of it as being the root, since I was trapped in my own bedroom and we tend to think of our bedrooms as our refuge, but when you’re being held hostage by a gun-waving drunk who’s threatening to shoot you if you don’t meet his demands, it’s hardly a place you want to call home. Certainly, this seems as likely a place to have gotten it as any, though there are other possibilities, all rooted in the same thing.
It’s a tricky business, walking the line between POTS and PTSD and knowing where one ends and the other begins. In truth, there is no way to know. They have overlapping features and symptoms because they are both forms of dysautonomia. That’s why I was so confused when I began to have what felt like a major relapse in PTSD several years ago despite having done over a decade of work to overcome my not inconsiderable bundle of neuroses from my childhood. While I understood that I may never completely overcome PTSD and faced the occasional trigger, I was suddenly dealing with long bouts of anxiety and depression. I was becoming intermittently suicidal and I my outlook on life had completely changed. To make matters worse, my thoughts became consumed with the past, how my parents and siblings had used and discarded me, how my friends had rejected me and treated me like a faker and I felt completely alone and undeserving of love or compassion. I reasoned that anyone in my position, at the time in constant overwhelming pain and mostly confined to bed due to the severity of my symptoms, would want to die and even formulated plans a few times.
Now that I’m diagnosed, I understand the source of these thoughts and feelings and have a lot more control. I’ve found that low dose mirtazipine works to keep most of these problems at bay, along with keeping my POTS well controlled. I also now know what tends to trigger bouts of anxiety and depression so I can do my best to avoid them, such as not getting enough rest, stress, pushing beyond my limits, and vitamin deficiencies. I also pay close attention to what’s on my mind, as obsessive thoughts about the past are usually a pretty good sign that I’m heading for a rough patch. Of course my overall health is the ultimate predictor and I can’t always prevent flares in my conditions like the one I’m going through with my MCAS right now, but I’m doing my best to learn and prevent these things as I go along.
One of the reasons I started this post on anxiety is because I’m finding it helps to talk about it BEFORE I get to the point where I’m ready to bite someone’s head off—for me, anxiety turns to rage. I also have a tendency to shut down and close myself off when I get depressed, so starting this process early is crucial.
Yesterday was a doozy of a day, it’s been a busy week without enough sleep and I was primed for a panic attack, but somehow I prevailed. I had three errands to run; to the post office, the pharmacy and the grocery. On my way to the post office, I passed the DMV and suddenly realized we never received our renewal notice for our plates. BOOM. Big rush of adrenaline, especially since there was a cop following me. I decided to turn up the next street and back track to the DMV. I pull my registration from my glove compartment just to make sure I’m not imagining things and read the expiration date. ‘2018. Is it 2018?’ By now, my thinking is getting clouded. I look at my phone to make sure. I wait in line for 30 minutes and get my tags and she tells me it wasn’t even showing late, even though my registration says it expired on April 30. I manage to calm and collect myself on the way to the post office. By the time I’m done with the pharmacy and the post office, I’m tired as hell, but determined to get groceries, as my husband is working 6 days this week and has challenges of his own.
In the grocery, near the beginning of my trip, I subluxate my right knee and while it usually pops right back in, the damned thing won’t go back in. I hobble along, leaning on the cart and it takes me twice as long to shop. As I’m walking out to the car, I sneeze in my mask (GROSS), and as the hot air hits me when I come out of the grocery, I get hit with a wave of dizziness and can hardly breathe. Luckily I parked in handicap parking and already had my keys out. I got the lift gate open on my car and sat down, panting, sort of leaning on my cart for support and to keep it from rolling away. I was amazed, two people actually stopped to see if I needed help. The second guy helped me unload my cart and took it away for me. I kind of think it was because I was wearing my mask, because I’ve never been approached like this in public before unless I collapsed to the ground. I guess there’s still some humanity left in this world. I made it home safe and managed to drag the cold stuff far enough into the apartment to close the door where I left it so I could fall into my recliner and catch my breath again, but instead I wet myself and had to go clean myself up. My cat Loki took the opportunity to try to break into my husband’s deli meat in the meantime, of course.
I really wanted to just break down and have a good cry, but I couldn’t. In fact, I felt positively incapable of reacting to anything. To be perfectly frank, on a day like yesterday, normally I would have blown up 5 times at worst and snapped at some poor unsuspecting employee at minimum, but I did none of that.
When my husband called on his lunch break and I relayed the details of my day, adding that I definitely won’t be pushing myself like that again anytime soon. He said, “My God, but you’re tough, woman.”
Tears sprang to my eyes. “I don’t feel tough. I feel weak and worthless. I was defeated by a grocery store.”
“It takes incredible strength to go through all that in one day with all you’ve been dealing with.”
Sometimes he knows just what to say. Despite my talk of zebra strong this and that, I realized it’s been a very long time since I’ve thought of myself as anything but a marshmallow, a big, wet, whiney, mushy, marshmallow with a head full of raving squirrels. But he’s right and I needed to be reminded of it. I am strong. I’ve never laid down to die, I’ve never allowed my conditions to run rampant over me, I’ve never laid down to take anyone’s shit, not even my own. Just because I’ve learned to temper my Type A personality for the sake of my health doesn’t mean I’m weak, it means I’m wise. It means I’m learning the value of quality of life over the quantity of my contributions and that my mental and physical well being are paramount to society’s expectations of who or what I should be and do.
I may yet fall prey to the ravages of anxiety and depression. I wasn’t able to sleep well again last night and if I don’t get some serious REM sleep soon, I know I’ll be in trouble. My only plan today is to do some cooking for nourishment’s sake and rest as much as possible. But I’m glad I’m learning these lessons and using the tools available to me to help prevent my anxiety and depression from overwhelming me during these flares. It’s nice for once to not have to say sorry for what I said while I was flaring!