Ticking Time Bomb
“Your body is like a ticking time bomb.” This was a comment from the neurologist I saw last month for a suspected spontaneous CSF leak, while he was reviewing my medical history and the reason for my visit. I haven’t related to anything so much in a long time. I have felt like a ticking time bomb lately, in every sense.
I always felt like I knew what my future would look like. I’m a planner, and I have always known what I wanted. Now, I have a hard time guessing what the next year will look like, much less the next 5 or 10 years. When I got the first diagnosis, Primary Immunodeficiency, I knew that it was possible that I would eventually be diagnosed with other conditions. I thought I would have years, maybe even decades, before that began to happen. I thought that I would have years to learn to navigate the PI world and to get to start enjoying my life again before I ever had to worry about juggling multiple illnesses. It started to snowball in just over a year though.
I had just gotten my PI infections under control when the pandemic broke out. Literally, I had enjoyed about 2 weeks of feeling healthy and carefree when the pandemic forced me into isolation. Less than a month after that was when I got the POTS diagnosis, and less than 2 months later, I got the chronic idiopathic urticaria diagnosis. A couple months later was a nasty respiratory infection that broke my antibiotic-free streak, followed not long after by a CSF leak and the potential for another new diagnosis, a connective tissue disorder that could have caused the spontaneous CSF leak. Just in the past few weeks, I have also started to notice some new symptoms that I had to alert my cardiologist about. I think it is fair to say that anyone would be struggling with all of this.
If you have been following my blog and think that I have been taking it all in stride, you aren’t the only ones. I’ve been fooling even myself most of the time to think that I am managing it all just fine. It’s kind of my signature move, honestly. In fact, I would argue that 85% of my typical grief cycle is spent in the denial phase, every single time. I either act like whatever happened wasn’t a big deal and move on, or I hyper-focus on the practical “tasks” that I can handle relating to it and never give myself time to check in emotionally. Any time something big happens, I “handle it” until the day that I can’t anymore, and then I explode like a bomb. Just like my “ticking time bomb” body, my emotions will tick away until BOOM. They spew out without control. That bomb went off this week.
“It’s just too heavy.” We were mid-conversation, and this was all I could think. The thought repeated in my head on a loop. I realized as it was all spewing out of my mouth that everything in my life right now feels heavy and that I had no emotional (or physical) energy left to spend on normal-people concerns. Politics, current events, a social life, anything. I don’t have the emotional energy to care about any of it, even though I know I should. Over the last several months, I have been using every ounce of my energy to make it through the day, to carry the hard things by myself. The person I was talking to sensed that I’ve been having a hard time. Just like when this happened with the PI diagnosis, he realized it before I did.
I felt lighter after saying it out loud. I feel lighter saying it over and over again to myself this weekend. “It feels heavy, and it’s normal that it should.” It doesn’t magically mean that the burden is no longer heavy or that I suddenly have the emotional energy for normal concerns. It just means that I am finally able to admit to myself and to someone else that this has been hard. That I have work to do to make it feel less consuming.
I don’t have the answers on how to not be a ticking time bomb yet. I can’t change the fact that my body is a mess right now. I’m not a miracle worker. That bomb is one that nobody has the answers on how to diffuse yet. I do, however, have the control to try to stop being an emotional ticking time bomb. In fact, I’m the only person who has that control. Maybe, though, admitting this all to myself in writing will hold me accountable. To do better next time. To give myself the space to grieve and have a hard time. To give myself the same grace and compassion that I would give anyone else in the same position. To be able to admit to myself and others when things feel heavy, before it feels like it is consuming my life.
Chronically yours,
Jen
