Now What

This post wasn’t the plan. I'm working on other posts about navigating the medical system and testing, but I fell down the rabbit hole again...

Four. Four times I have had to take a leave of absence from work over the last three years. Last week I had to take another leave of absence from work, leave for the rest of the year. This is the longest leave I have ever had to take (not counting the year I didn’t work). A few years ago, I used to never call in sick to work. Despite working hard to keep up my energy and stamina this summer, I only made it through a week and a half this Fall semester before I started to hit The Point of No Return—the dreaded long period of being bed-ridden after having to push myself past my limits. 

The semester didn’t start well. My teaching schedule included 9 hour days with driving and teaching hours in a row without a break. Something has changed. This time last year, I had almost this exact same schedule. I struggled, but I could do it. The difference now is shocking to me. I decided to no longer stand or walk while teaching (something I should’ve been doing last year). So I would sit and try to teach, but it wasn’t enough. I could barely move and the disabling, new symptoms I have been experiencing this last year—losing my mobility, intense weakness, difficulty breathing, etc—were getting worse. Driving has gotten much more difficult and a little scary, which makes commuting complicated. 

I had been mentally preparing for having to take a leave of absence all summer. After the sheer brutality of last semester (including hitting The Point of No Return twice during it), I knew it was a definite possibility. I just didn’t expect to only make it a week and a half. 

My health has gone downhill this year, and I'm in disbelief with how much less I am able to do compared to just a year ago. But I am learning how to accept this and try to work around it. I feel incredibly guilty about having to go on leave but realistically I didn’t have any other choice. I’m thankful for how supportive my work has been and that I can have this time to focus on my health.

So now I am trying to speed along the endless appointments and tests I have been doing this year. I believe they are getting closer, and I am currently being tested for Myasthenia Gravis, but nothing is for sure. I am trying to rest. I made myself a schedule to work on other projects like writing, painting, music, cooking (while sitting of course), hobbies and passions I haven’t had any energy for the last few years. But I already miss work. I am a workaholic to the core. I told my husband I’d even take a stack of essays right now and he said, lovingly, “you have a problem.” Yea, probably.

I’m still fighting. I’m still pushing forward. Despite these struggles, I have a good life and I’m working on being well enough to enjoy it more. Adversity, ain't no thing. As Maya Angelou said, "Still, I rise."

Presence and Absence

Someday I want to talk about other topics like what helps or the interesting research happening with POTS right now but I am still in the middle of the longest rough patch I’ve ever had: two and a half months. This is a place for honesty and this is what I’m living right now. This isn’t bitching. This is what unbridled frustration looks like. I spent last weekend bed-ridden again with horrific GI problems, failure to be upright, and probably should have gone to the ER, again. I called my husband in a panic and told him to come home from work so we could go to the ER. Instead, I drank two bottles of Pedialyte and managed to stay conscious. I have called my doctors because this is not a fluke. I’m ready for this pattern to be over with. Absolutely done with it. I’ve lost 8 lbs. since January and it’s gross. I know I need to be a little more vigilant about my health and make some better choices, but damn that’s hard. I even stopped eating chocolate. My beloved chocolate! I have switched to a stricter diet and I’m taking (drinking) the medicine my GI dr gave me every day even though I hate it. I’m going to get some control back in my life because POTS/dysautonomia has been controlling me every day these last two months. I’m the boss. I make the rules. I’m getting this thing back on track. I refuse to let this become a new normal. I have some appointments coming up and may try a new medication (maybe). I just hope I can communicate what I’m going through—not be a weepy mess—when I talk to my doctors.

I missed another event last weekend. I think I am averaging going to 15% of the events I have been invited to this last year. It makes me desperately sad. I have always tried to be a reliable person in my personal and professional life but I am no longer reliable. I can’t rely on what my body will do even as I write this. It’s pure chaos. 
 

I’m trying to maintain some perspective that I don’t think most people would be doing what I do every day and going to work dealing with this chaos. I say this with confidence because I’ve spent years training as a chronically ill warrior. I have the battle scars to show I have earned this level of perseverance. I also don’t think my students or anyone I work with would realize how much I am struggling. They would probably just say I look exhausted. Perspective. I have a lot of ranks in looking like I am keeping it together. Someday I want to create a line of makeup for the chronically ill called Perpetually Exhausted. Makeup is sometimes war paint to leave the house and face the world.

Absence. Calling in sick to work. Missing events. The vacant staring from my couch while Harry Potter plays in the background. Absence. But I’m here. I’m here. I just hope that my absence doesn’t imply disengagement or disinterest. I hope no one assumes my absence is purposeful or intentional or that my absence will just be assumed. The view from chronic illness is that so much life is happening around you but you feel like only a small part of it. Time is ticking by and everyone is making plans, building a life, going out into the world. Sometimes I’m motionless as the world is spinning around me. But I am here. I am always here and I am reclaiming the energy for real, actual physical presence. I am coming back to the land of the living. I have the best friends and family. The most amazing husband anyone could dream of. I'll get back to enjoying life with them again. Experiencing and feeling the good times just as intensely as the bad. I’m here.

Musings: Presence and Absence

A particle, a being, a memory, a simple flesh. Conceived in the dust of stars and orchestral supernova. Tapped into the eternal center, a pulsing energy swirling in galaxies that coalesced in the magic of life. To utter these words, to walk a few steps, breathe once in this blink of a memory in the endless motion of time. Smallness in grandeur in the inescapable beauty of movement. The mercy of perpetuity. The cosmic exhale. The gravity to behold