I've been very hesitant to write this two-part post, but I've decided to forge ahead even though I'm sure I'll get flack about it. I'm writing it, fully aware, I'll lose readers by doing so.
I really hope you'll take the time to read it even if the worst pain you've ever experienced is a stubbed toe.
After all, how do you know, really know, it won't be about you or someone you love someday? (Remember, I had a perfectly "normal" life until a man ran a stop and totaled his car into mine.)
I'm writing this post as a layman, not as a medical expert.
I'm writing this post based on my experience, post car accident/post eight surgeries/post being disabled. It also incorporates information explained to me by medical professionals I trust.
I'm writing this post in the hope it will bring understanding to many people who don't understand.
Because … so many people don't understand.
And yes, that even includes many of my own friends and family members.
I recently got a lot of very supportive comments and individual emails when I wrote about experiencing a particularly brutal pain flare up I've been going through. I truly appreciate them, and the thoughts behind them, so much. (I'm relieved to say I'm finally improving from this particular pain episode.)
After writing the initial post, I also got some pretty insensitive/calloused/rude emails from people who clearly don't understand chronic pain, but like to assume they do. Some of those people like to send emails with fake names and fake email addresses. (Really people? If you believe it enough to write it, own it.)
I took a total of about 30 seconds to make this chart to show you what my pain would look like if it could be graphed. Zero would be where a "normal" person would hang out most of the time. Six is where a person lives who is awakened at night because their pain is too severe to sleep. Level ten is the worst pain imaginable.
For a long, long, time (years) I lived at Level 9-10.
It was the most horrible thing imaginable.
Normal for me now is a pain level between 6 – 8.
Thanks to Dr. Painless, I now sometimes sleep through the night with the help of drugs. Prior to beginning treatment with Dr. Painless, I hadn't slept through the night in over four years. Oftentimes, even with drugs, I still don't.
No, I don't suffer from insomnia.
Yes, I do suffer from severe chronic pain.
Do you have any idea, putting the despair of living with constant pain aside, how impossible difficult it is to function, long-term, without sleep?
What I'm trying to convey to you is that a good day for me is pain at Level Six. And yes, Level Six is a pain level worse than the majority of people will ever experience in their lives. Those who do experience a Level Six will usually only experience it for a very short period of time, perhaps for a night or two after a surgery.
I've had to learn to live with Level Six (or higher) being my constant -my norm, every day. Yes – not being able to sleep, because my pain is too severe, is normal for me post-accident. (And if you're reading this Dr. Painless, thank you for making sleep possible for me some nights now, even though it requires drugs for me to do so.)
When I have a "flare-up," my pain level literally goes through the roof. Sometimes it escalates quickly, and sometimes it escalates over a period of 24-48 hours. Regardless, it becomes completely debilitating. The pain chart only goes to Level Ten but when I'm at Level Ten, I'm convinced I'm really at a non-existent Level Fifteen because ohshitithurtssomuchcan'tsomeonepleasejustmakeitstoprightthisminute.
Level Ten is when even breathing hurts. Level Ten is when I'm curled in a ball, concentrating on forcing myself to breathe, and waiting … waiting for it to decrease even the slightest bit, quite possibly to Level-Nine-And-A- Half. Level 10 is when I'm perfectly quiet because the pain is far, far, beyond tears.
Level Nine and/or Ten is also when I might bite your head off if you look at me the wrong way or start telling me how I should feel or what I should do about it. (Dr. Painless is the exception; he gets paid extremely well to do exactly THAT.) If you're ignorant enough to insinuate I'm responsible for feeling such anguish, you will receive death stares from me even if you're hundreds of miles away.
In other words, if you aren't the one experiencing Level 10 pain,
And if you aren't my personal doctor,
With five years worth of facts regarding ….
My initial injuries,
With detailed knowledge of what was involved in all eight of my surgeries,
With intimate understanding of my permanent disability,
And extensive understanding of my bionic arm/shoulder/electrodes/abdominal generator,
Along with, pervasive knowledge of the instructions I've been given regarding what activities I should, and should not, do in my daily life,
Not to mention, an in depth knowledge of all the types of pain medication I'm on …
Then you have no business telling me how I SHOULD feel or what you think I SHOULD do or why you feel it's MY FAULT I live in pain.
I'm sorry if that sounds harsh, but I'm really not.
I share my story on the Internet because it helps me to write about what I'm going through. Writing is therapeutic.
I share my story because it helps other people, who live with constant pain, to know they aren't alone.
I share my story because it helps thousands of people increase their knowledge about chronic pain.
Support, kindness, love and good intentions are always welcome.
Unconstructive, negative bullshit is not.
You can find Part II of this post by clicking here.
© Twenty Four At Heart