This blog has been a long time coming. I have always loved writing since I was young. From 19 to 25 I shared my life on a semiprivate blog (cough live journal cough). Then things shifted for whatever reason and I found myself unable to write about what was going on. Years passed, things changed. I went on a blind date and met the wonderful man who is now my husband.
I ran races and knitted and worked 40 hours a week as a master esthetician and makeup artist.
And then at age 28 I began a new phase of my life when a simple foot injury from running turned into a chronic pain condition called CRPS. This disease “is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury.”
5 months later in a cruel twist of fate I also developed Chronic Lyme Disease (still not laughing Universe).
As much as I have fought it, being “sick” has shaped this part of my life. When you are in a lot of pain your world shrinks down and because you can’t escape your body, you can feel incredibly stuck. All you want is to not be in pain so you can become hyper-focused on anything ANYTHING that might save you. You name it Ive probably tried it. Antibiotics, anti-seizure meds, pain medicine, nerve blocks into my spine, 20 sessions inside a Hyperbaric Oxygen Tank, an acupuncturist who made me bleed (this one I got some serious side eye on from my family), physical therapy, diet changes, herbs in horrible tasting tinctures.
Each time one didn’t work my heart broke a little more.
The key of course is to not let it all consume you. Easier said than done.
How do you not lose who you are when you can no longer do most of the things you love? How do you maintain friendships when you don’t feel well enough to go out? How do you keep job when you can’t walk? Sometimes I do really great job at still being “me” and sometimes I absolutely suck and wallow in this huge pity party puddle where I feel like I’ll never be me again. Ever.
Thankfully I have found others who have health issues and find that my own experiences very much mirror others. Until you are faced with health issues, its something that most people don’t think about. People ask me to describe my pain and when I text to them all the different pain sensations all over my body I think to myself “ok this sounds completely insane”
I have found that many people in my life don’t understand or can’t comprehend completely what a day is like inside my body. And that’s ok. I didn’t get it either until it happened to me.
You don’t get it until you get it.
Things right now are tough. Certain things are a lot worse and for whatever reason, the treatments I am currently doing aren’t helping. Sometimes I feel like I am just watching myself slowly become disabled and there’s nothing I can do to stop it. Its frustrating and sad and lonely etc etc etc. But then you can pull back and say “HEY! There’s things I CAN do!” What we tell ourselves matters so much.
If you tell yourself you won’t get better…you probably won’t.
I don’t want to have a blog about being sick. But I can’t blog about being well because at this moment in time I’m not.
I guess I hope to share what its like to deal with chronic illness BUT also what its like to live life in spite of it.
How do I find my way back to myself when sometimes couldn’t feel more removed from the life I had? How do I not completely give up on the dreams I hoped to accomplish? How do I mourn my old body while still appreciating this new body? How do I find joy when everything really hurts?
I don’t know the answers to all of those questions yet. But I’ll keep searching until I do.