Progress. If there’s one thing out there that people really want to genuinely know about, it’s progress. That’s the question I get asked the most often. Are you getting better? Are you making progress? Some people in the chronic illness world take great offense to this question. Me, I don’t. People desperately like a resolution and they want to hear “yes I’m getting better” or “yes I’m over that sickness.” I get it.
When someone asks me if I’m making any progress, my answer has changed to “I’m making progress in many ways.”
No, I haven’t learned to control my autonomic nervous system yet.
No, I haven’t stopped passing out.
No, I haven’t learned how to teach my body to digest food or regulate it’s temperature.
Yes, I have learned how to better anticipate a faint.
Yes, I have learned how to pace myself better.
Yes, I have learned how to ask for and accept help when I need it.
Yes, I have learned how to take a bad day and do everything in my power to make it a somewhat better day. (Hint this usually involves food.)
Yes, I’ve learned how to use oxygen in public with a bit more confidence.
If you are wondering how I myself judge my progress, let me show you.
Here is an example of my first acrylic painting just over a year ago and my most recent acrylic painting. If I look at my life in this light, I can easily see progress.
I truly think that we get to choose how we view our life.
I was honestly terrified that I would go to bed and never have drive, desire, or feel worth again. To me, that would be a nightmare scenario.
I feel as though I’m making progress artistically and with better handling my new life, but there will always be adjustments along the way.
Please. Keep asking me how I’m doing. Keep asking me if it’s a good day or a bad day. I don’t care how you phrase it. I’m not one to write you a script of words that don’t ‘offend’ me. The fact that you are checking in with me and talking to me shows me that you care. So if you want to start every day by asking if I still have POTS, go for it. You won’t offend me, but you’ll probably get a response along the lines of “yes, my body continues to make that clear, but I did just make Fireball fudge, do you want to come try some?”