It has been exactly one month since my defibrillator went off and life has certainly changed. I have yet to feel 100% like myself, physically and mentally. Life is getting back to normal, but it is a new normal. It is filled with unknowns, upcoming doctors visits, medications and lots of restrictions.
When I wrote about the experience of my defibrillator going off I had yet to see my Electrophysiologist and Cardiologist. I had an idea of what had happened and I had expectations of what I was going to hear. I figured I had experienced some form of arrhythmia and my heart was beating too fast for too long, because this is something that happens often. I did not expect to hear that I was in a normal, healthy, regular rhythm and then I wasn’t. I went straight into ventricular fibrillation. No arrhythmia leading up to it. No intense physical activity. No medicine to cause it. My heart just decided to stop working correctly. To stop actually beating.
I always knew that this was a possibility. I’ve listened to the doctors intensely, I’ve done proper research, and I’ve paid attention to my body. It’s always been there in the back of my mind. This could happen, but you never think it will actually happen to you. I’ve been unlucky with my health, but I’ve also been lucky. Things could be much worse. I tell myself this all the time. When the doctor told me I went in v-fib for no particular rhyme or reason, I couldn’t wrap my head around. That experience I’ve previously described, where everything disappears around you. You can’t process any new information because your mind is still trying to comprehend that information you were told. Yeah, that happened upon hearing that.
I want answers. I want to know the reasons why. I want to know how to completely avoid getting brought back to life again because I don’t want my heart to just stop working. I am having a hard time accepting that my diagnosis does not have a cure, yet. It may never have a cure. I don’t want to “maintain” it. I want to fix it. It’s unbelievably frustrating. Next month I will be doing genetic testing to get more in-depth answers as to which specific form of Long QT syndrome I have. I’ll see a new specialist for a 2nd opinion. I’ll get a new pair of eyes to review everything and see if they have anything different to say. I’ll see if this new medicine is the right one. So far it’s worked better than anything else. It’s insanely expensive and breaks my face out. It is better than my heart not working right, so I can’t complain too much.
I’m trying to deal with the unknown, the frustration, and the seriousness of my situation with a light attitude. I keep cracking, what some may consider inappropriate, jokes about being in a dead sleep. Or how I can’t say yolo anymore. I have to find humor in this in order for me to cope. I’m still struggling to accept that I had a sudden cardiac death event and my defibrillator did its job. I have no words that can describe how glad I am that this machine, that I never wanted in my body, worked. The nightmares that I have had about me not waking up have been hard to shake. I try not to focus on all of this and continue to live life semi-normally. It’s hard. It’s hard to not be anxiety-ridden and terrified that at any moment it could happen again. It’s hard to not dwell on it. Sometimes I want to talk about it to process it and sometimes I don’t want it brought up at all. I want just a few hours where I can pretend that I’m normal, health-wise. We all know I’m not normal, I’m a bit peculiar. Haha!
The psychical stress this caused only lasted a few days. However, the emotional and mental stress is seeming to last indefinitely. I know some people may think, “So what you got shocked. People get shocked by defibrillators all the time.” To some, it may not be a big deal, but to me it is. I convinced myself that I was doing better and that I was fine. Nothing had happened and it probably never would. I convinced myself I was healthy and normal. I’m having to accept that I’m not. It’s a struggle for me. I’ve struggled my whole adult life with it. All I’ve ever wanted was to be healthy and normal. I don’t want to face the fact that I’m far from it.
Getting back into a routine has been difficult. I’ve had to rely on others for so much and I had to base my life off of someone else’s schedule. I’m finally able to drive myself around town again. I’m still supposed to take it easy on exercise. I’ve re-evaluated how I approach life now. I have a different outlook. I didn’t completely realize how precious our time on earth really was. Time is fleeting and I have now rearranged my priorities. Working my butt off and being successful will always be a goal but I will no longer let it consume me. I don’t care if others don’t understand why I choose to do something. Making memories and actually enjoying my life is now more important. All the stress doesn’t help me. I have far too much unknown with my health to not make the best of my time on earth. That is why I didn’t cancel my trip to New York despite all that’s happened in the last month. I may not have this opportunity present itself for me again. I do not know what is in store for me next month.
Life after the shock has been pretty much what I expected. It’s been a rude awakening and it’s caused my life to do a 180. I’ve grown in ways I didn’t expect. I’ve learned a lot about myself in the last month. For me, it’s been the true definition of an aftershock. A smaller earthquake following the main shock of a large earthquake. My life is in disarray after working so hard to get my shit together.