I don’t know if my friends should ask me every time they see me, “How are you doing… How’s your head today?”
I appreciate the love and concern and support, buuuuut…
it’s getting depressing, to be honest. It reminds me that I have symptoms every day, and full-on pain attacks almost every day as well. It’s rare for me to have a full good day.
So at this point, it’s safe to assume that if they see me out and about, it’s either because:
A. The pain/symptoms are tolerable at the moment
B. I am able to fake feeling better for the moment
So maybe I should have a chat with them.
I can see how much they care. I can see that they are curious about how I am doing. It’s just not my favorite topic at the moment, because it brings up all these negative feelings in me.
I’m getting better at talking about it when I need to talk about it. All other times, I’d rather be distracted and try to forget about this disease that haunts me.
I know that deep down, I am lucky that people care. That people *want* to know. That my friends are trying to understand what I am going through.
Having a chronic pain condition is different than getting sick. The cycle is different.
Healthy Person Cycle: Healthy -> Gets sick -> Rests, eats chicken noodle soup, stays home for a few days from work, takes antibiotics or OTC meds -> Gets better -> Life resumes as normal, until you get sick 6 months later or a year later or whenever
Chronic Pain Cycle: Gets diagnosed -> Tries a hundred remedies and medications -> Has symptoms almost every day for life -> Misses work and social activities all the time -> Has to take pain meds to function most days -> No more “normal” -> No more “getting better”
I’ve lived in this pain cycle for 15 years. I have hope that something will help my condition eventually, but I haven’t found it yet. I am learning to cope with this life I didn’t choose. I try to spread awareness to the people in my life. So I thank them for asking me how my head is, even though the answer has been the same for 15 years: “It’s up and down. Good and bad. Unpredictable. But I am managing the best I can…” because I am a chronic pain warrior!
My definition of a CPW?
“Chronic Pain Warrior”: Someone who experiences excruciating pain every week. Someone who treasures their good days *so much* because they have so few of them. Someone who wasn’t given a choice to live this kind of life. Someone who keeps going despite how hard it is some days.
P.S. I am going on vacation for the next week! *Fingers crossed* that my pain levels are nonexistent… or at least tolerable!