There are many things that a chronic illness can take from you. It can take your job, your ability to go to school or drive a car, it can even take away your favorite foods. The simple pleasures in life become out of reach, even mundane things like showering or reading a good book. But these are all things that you are warned about. Everyone tells you to expect these things, and so you do. You brace yourself for the impact of letting go of people & things that mean everything to you. You learn to adjust and adapt to a new normal, one where you don't get to follow your dreams, and one where you watch the world bustle around you in progress while you stand like a statue watching from afar. But there is something else that you can lose, and it's something that no one quite warns you about.
No one tells you that if you aren't paying attention, then ever so slowly like a thief in the night you can lose the very essence of who you are. Suddenly you aren't just fighting for your health but also for your identity.
During the first 2 years of treatment I never lost my spark or my spunk. I was physically very far down but my soul was filled with joy and energy. I kept up with all my friends, I painted my nails and had spa days, I loved to get highlights and primp even though I just laid in bed. It made me feel good. I loved to faux online shop for clothes by putting things into my cart and never buying them, but just daydreaming about being well enough to have places to go wear all these wonderful outfits to. When I fell asleep at night I dozed off thinking of things I looked forward to that were out of reach like seeing fire works on a beach or having dinner with my friends again. This sense of hope and never losing myself is what made my days go by quickly despite the circumstances. I was still me. Every quirk that made me who I was stayed in tact, and no one tells you how absolutely crucial that is to being a fighter.
When I relapsed last year it took all of my joy with it. I'm not sure how it happened, but I looked around in October and realized that along with my health my happy was also gone. I wasn't smiling as much as I used to, I wasn't genuinely joyful over things, and I had less of a desire to do the things I loved. It really disheartened my soul to know that I had worked so hard and put so many grueling months into treatment & just when I felt life come back into me everything suddenly crumbled. It was an utter shock how quickly my health spiraled down out of my control, and to be honest I did not know that was possible. I felt like the people who relapsed were the people who slacked, or the people who weren't keeping up with supplements or diets, or maybe the people who didn't care. I never imagined that even when I was doing everything right it could still happen. I felt like a failure, I felt like I let everyone down around me, including and MOST importantly, myself. And somewhere in all of that is when I started to lose who I was.. ever so slowly.
When I say that I lost myself, it's more a sense of not being able to identify with anything. I can't think of many adjectives to describe who I am right now in this moment. I guess last year I would have said things like "good friend," but now I'm so busy doing numerous health related tasks or researching things that I don't have fuel left for that. I've been trying to force myself to connect with the world around me, but I simply can't. I usually don't have the energy or I'm battling pain, and in the moments where I'm free all I want to do is lie on my bed and have that moment of silence and peace. I choose that over connecting every time. I can't tell you the last time I logged on to any social media that wasn't advocacy based (lady of lyme related).
It is so utterly bizarre to feel like I'm just not myself in any way shape or form. I'm indifferent to everything, excited about nothing, and bored with all the things I used to love. Crafting, writing, mentally challenging myself... none of that feels good.
This is my now. Not my forever, but my right now.
I know that I will find my happy again, I know this isn't permanent. I have a lot of faith that the soul sometimes needs to hit a low point in order to regenerate. Right now I have to stay focused on my tasks at hand and getting well. Every spare second I have is dedicated to research in some way shape or form. I am determined to get well, I will never stop educating myself & fighting to find a way. This relapse has thrown a lot of new hurdles at me, and every day is a new mystery of perplexing puzzles, but it only fuels me to figure it out. It doesn't matter how long it takes me to get there, as long as I get to the finish line.
If you're reading this & you are feeling a bit broken yourself, know you're not alone. It happens, and it's okay. As long as you remember to not let it defeat you or take your zest to keep fighting then it's healthy to take a moment and wave the white flag. With a chronic illness you are sick & managing pain every day for years on end, and that will wear on the strongest persons soul. You might feel like you're moving in slow motion, but all that matters is that you keep taking steps.
Ps - If I haven't replied to you via email (my inbox is full), or replied to comments please know I plan to be back in action & hopefully with an update very shortly. This post itself took about 5 days to write up, so things are a bit slow to go but I promise I'll respond to every last email.