“How’s your head today?”

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
or
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!

 

 

 

 

 

 

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2 responses

  1. It’s interesting. At the beginning of my illness, or when I made it known to friends and family, I’d get peeved when they didn’t ask how I was feeling because of the whole invisible illness thing. How was I supposed to tell them I wasn’t up for shenanigans without sounding like a whiner if they didn’t ask? I didn’t want to say “I feel like death, sorry I won’t be able to go base jumping with you (or something more realistic like going to a movie ;))”

    Now I’m asked frequently and I agree, it is bothersome. If it’s just a conversation in passing, I usually say I’m fine…or good, which is never the case. If it’s a preemptive question to some sort of invitation, I’m a little more honest. I keep it short and sweet, because you’re absolutely right, it does have a tendency to bring up all of the bad stuff.

    I hope you have a great time and enjoy at least a couple of good days. Sometimes a change of scenery does wonders for the soul even if the body fails to cooperate. 🙂

    Like

  2. From one “CHRONIC PAIN WARRIOR” TO ANOTHER, I hope you enjoy your vacation. I especially liked your descriptions of the HEALTHY PERSON CYCLE and the CHRONIC PAIN CYCLE. You hit it right on. I’ve never seen a better description!

    Like

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