The Truth About Pain

The audio version of this post can be found here.

One thing that's always bothered me about how people who don't suffer from chronic illnesses talk to those of us who do is the way that the 'Don'ts' talk about pain. Specifically, learning to ignore it.
I could never truly figure out why, or at least put words to it, until one night about 5 or 6 years ago when I ended up in the emergency room.

I'd been out at my favorite dive bar, and my back had been hurting all night. Every few minutes I would run to the bathroom. I was annoyed, and sore, and had never experienced anything quite like it before- a pain that grows almost so gradually that you don't notice until it's excruciating. I remember a family member picking me up and driving me to the hospital, trying to drive as gently as possible because every single bump or jostle made me scream in pain.

I was taken back pretty quickly- at least, I think I was- everything was pretty foggy thanks to the horrible pain. I wanted someone to knock me out- anything to make it stop. Finally, they put an IV into my arm and injected me with Some sort of painkiller. Almost immediately, the pain eased- and just as quickly I was out like a light.
That instance made something crystal clear to me that I had, on some level, always known:

Pain is really fucking exhausting.

I'm talking truly, mentally and physically exhausting.

So when people talk about getting over the pain or ignoring it, I always end up wanting to yell at them. Because, while it's true that pain IS a neural response- sensory receptors in our body send a message to our brains which process the sensation which we perceive as pain- it's not a voluntary one.

Think about it this way- pain is a way that the body has developed to tell you that something is wrong. But it's not like a comprehensive system you can just override with a few simple commands. The pain response is more like the anti-theft alarm on an older model car. Whatever sets it off- be it someone kicking the bumper or actually breaking in- the ultimate response is the same: the alarm sounds. Now, there are only a few ways that the alarm stops. You can damage the car, you can temporarily disable the alarm, or you can wait for it to reset (or speed up the process yourself).

Leaving off the car alarm analogy, my point is that the body's pain response CANNOT actually be ignored- if you are in pain, it takes up some of your mental capacity. YOU may not be thinking about it constantly, but it is constantly running in the background- that response triggering those receptors over and over and over, making your brain work a bit harder. Making you use more mental energy.

I recently tried to explain the premise of this blog post to someone. "But that's not really true," he argued "Because some people can get over it." For 'proof' of his concept he cited a football player famous for getting hurt- a lot - and getting right back in the game. Comparatively, he drew my attention to another player famous for getting a relatively minor hand injury, who was out of the game for a few weeks.

There are several problems with this comparison- but it, itself, brings me to my other point: Not everyone deals with pain the same way. The wonky and wonderfully frustrating thing about the human body is that there are subtle differences in the way we experience pain- and in the level of energy it takes to process it.

In fact, the comparison between those two players highlights the very problem of disregarding that fact- one person is not 'lesser' than the other because their pain tolerance is perceived to be lower. You cannot, and should not, compare the way one person performs while in pain to the way another does.

It comes down to a technique that we learn early in our lives as a way to relate to each other: comparing our perception and experiences with those of another person in order to establish a connection with them. It's a crucial lesson for a child because it introduces the basic concept of empathy. "You are like me, so I can relate and should act accordingly- I should treat you the way I want to be treated because you are the same as me."

But the important thing to remember is that that is a very simplistic version of empathy.
The advanced version that we must use in order to form full fledged adult connections with each other which are not harmful or dismissive is this:
"You are like me, and, even though we are not the same, I will respect what you are going through without judgement by comparison."

To people who don't suffer from chronic pain: Please be mindful of how you speak to the people in your lives who do. Exercise empathy. Pain isn't voluntary, and turning it off isn't a choice. Overall, remember that telling someone who is in pain to get over it or ignore it is unhelpful. All pain is valid, and everyone is different. Stop telling us how we should deal with it.

Now With Sound!

Audio version of this post can be found HERE.

Hi everyone!

I just wanted to provide a quick update and let you all know that as of today, every post from 2019 on will include a link at the top to an audio version of that post. This is done in an effort to increase accessibility. I will also be tweaking the blog style and structure over the next few days or weeks to make it easier to read and view.

If you have any suggestions for ways that I can make things easier for you or anyone else to enjoy the blog, please do not hesitate to reach out- I'm always willing to learn!

Also, if there are any particular posts in the archives of this blog that you would like the audio version to, please shoot me a request, and I will record them for you.

Community Compatibility: We Don't All Just Get Along

Audio of this post can be found HERE.

One of the things that makes life with chronic illness difficult (at least for me) is the struggle for community. Though these things we go through are incredibly personal, it helps some of us to be a part of a group of others who know the struggle. People tend to think that just because you have the same disease, you'll all have the same mindset for dealing with said disease. This could not be further from the truth.

For example, I just recently joined a Facebook community for people who have eczema. It's a rather large group- thousands of members, actually. So far, it's been rough to be a part of it - and not just because of all of the posts which give me vivid flashbacks to growing up with severe eczema as a child, and then a teenager. Actually, what's pushing me away is the mindset of the majority of the people.

I am someone who absolutely hates unsolicited advice. I have a very negative reaction to it, because I've been subjected to an inordinate amount of it (especially regarding my health issues) for my entire life. That is why I try my hardest to never give advice unless asked (or given the okay). That's just who I am, and frankly, nothing alienates me faster from a conversation than unwanted advice - especially from people who do not know my specific situation.

This is a mindset that the majority of people in this group do not share or respect. People are bombarded with advice, from practical to absolutely ridiculous, on every single post- whether they asked for advice or not. It's, frankly, daunting.

But even if we ignore that glaring social faux pas, a big part of compatibility with a community comes down to sharing the same ideals and, to an extent, similar views.

Example: If I swear exclusively by the miracles of modern medicine to deal with my skin problems, I probably won't find a lot of connection in a group devoted to holistic health solutions for eczema.

Conversely, if I were only interested in natural remedies for my eczema, I would feel very out of place in a group which follows the progress of the newest medicines and treatments becoming available.

In either of those situations, despite the core trait that we share, we wouldn't, at the end of the day, have much to talk about.

I guess what I'm trying to say is that community is important- but a supportive community where you feel listened to and comfortable in is essential. Life is hard enough without our support systems being stressful, too.

So for me, at least, the search begins again! I hope that everyone looking for a community finds one that's an excellent fit.

Until next time, friends!

Aaand We're Back!

Audio of this post can be found HERE

Hello everyone!

It's been about 3 years since my last entry into this blog. Frankly, and possibly ironically, I find that the times that I'm struggling the most with my chronic health issues, and therefore have the most to say, are also the times that I least want to write about it.

Regardless, if you're reading this, I want to give you a quick update on my personal health situation, and then share some news about this blog and what to expect in the weeks - and hopefully months- to come.

On a personal note, the past few years have been rough, health-wise. I've had a few surgeries, way too many trips to urgent care and hospitals, and a new diagnosis. Throughout it all, of course, the thing that remained irritatingly constant was the eczema. I tried a few new treatments for that, too! But more on all of that later! On to the big reason that I'm writing this:

Someone recently said to me that it is human nature to fear what we do not understand. But I counter that that is an incomplete idea. It is human nature to fear what we do not understand- and that is what drives us to try to understand everything. We are curious creatures- we never like to be in the dark for long. In the spirit of that, I'm revamping Scritch to be an open exchange about chronic illness. I'll still be primarily focusing on my life with the chronic illnesses I struggle with- after all, that was the foundation of this blog, and I would never dream of writing for another group of people when I have no idea what they're going through. But I hope to tweak the structure to include a little more education and exchange of ideas, highlighting different views on symptom control and bettering quality of life. I'm pretty excited about this, and, even though the idea is still new, I hope once I can iron out how to do it, it can become something great.

If you're still reading this, thank you! I hope you'll continue to visit, and join me on this very uncertain journey.

How We Spend Bedtime

I've struggled with sleeplessness for as long as I can remember for one reason or another. Sometimes- too often- it was a genuine, avid dislike of the actual act of sleeping (but that's a story for another day). That meant I even hated lying down.

But somewhere along the line, between 10th grade and now, something has changed.

I still hate sleep, don't get me wrong- but now, sometimes, lying in bed is the best part of my day.

In fact, for awhile after my surgery, I'd go to bed, telling my roommates I was going to take a nap in the middle of the afternoon - and then I'd lie down and just....Think. Sometimes I'd stare at nothing, or close my eyes and doze...

I still do that, although not in the middle of the day anymore. And as I lie there, I do this soft reset... like a brain version of installing updates and restarting. I finish unfinished thoughts, sort others, categorize things and contemplate whatever happens to be swirling around what ever major stressor is out there.

What's funny is, I hardly ever think of That thing during those times. Just the other stuff- the stuff I've been neglecting, stuff that's been unable to get any light with that giant ball of Important blocking the way.

This never happens anywhere else. I can't summon this frame of mind in a quiet moment at work or curled in my armchair at home, or anything like that. It has to be in bed.

I even write, sometimes.
That never lasts long, though- it's very rare that I get this far.

People say you should, if you have persistent trouble sleeping, never do anything in your bed except sleep- never read, talk on the phone, text, play games, et al.

I think it's safe to say I've been pretty awful at following that guideline.

But at least this time I finished a post.

Wooo!

Take My Hand

I think that a lot of people with chronic health issues have varying degrees of trouble asking for - and accepting - help.

For me, at least, it's not so much about pride or maintaining an illusion; I'm well aware of myself. I know that I am not a particularly strong woman, in any aspect of my life. I am often easily thrown down emotionally by one thing or another, I bitch when I'm uncomfortable, and I'm afraid a lot of the time. I don't hide my weaknesses - I don't have the strength or energy to waste on being anything but myself.

For me, asking for and accepting help are hard for reasons which developed a very long time ago.
Ever since I can remember, there have been people who reacted negatively when I asked for help I needed. So, I learned that asking was bad, something to be embarrassed about.
Often, when people did help me, it was with a lot of grumbling and resentment. So, I learned that, if people helped me, I was being a burden.
These people weren't strangers, either- often they were people who claimed to care about- or even love- me.

More than once, someone would start out insisting that they wanted to help, to be there- only to decide that the task they had taken upon themselves was too much for them. Inevitably, they distanced themselves.

So when I find someone who's willing to help me, and does so without complaint or impatience, it frankly leaves me stunned. It breaks my brain to have someone who sees me struggling and reaches out without reluctance, without me asking. Who treats me, the whole time, with kindness.
I find that I have no words for them to express why that means so much to me.

Even if I had the words at the time, I would struggle to express them, because I'm afraid that they'll be misunderstood, or make that person uncomfortable.

So, I'll take a shot at expressing them in writing.

Thank you. I will say that to you a million times, because I honestly don't feel that I can communicate it enough. I am so incredibly touched by your kindness, your patience, your willingness to help me, because it's something I am rather unfamiliar with. It means a lot, and counts for more than you realize.

Please know that my reluctance to let you help isn't because of you.

Please understand that apologizing for being an inconvenience is hardwired into me by now. So, too, is my embarrassment for needing assistance in the first place.

Please don't forget that when I say 'Thank you' over and over, it's because I can't think of what else to say, because this level of kindness, patience and compassion is alien to me. I don't know if I'll get used to it.

Please remember that it's almost a certainty that I will never expect your help.

But I will always be grateful for it, and happy that I have a friend like you.

A Deep Breath, and an (Unintentional) Test Fall

Last night, one of my housemates had some painting to do. He and his girlfriend cosplay, and, with a convention coming up this weekend, he was running out of time to finish up all the elements of his character.
He was using spray paint, and decided to do it outside, in the backyard. He'd hardly begun before it started to sprinkle.
Meanwhile, I felt the urge to take a walk. With a word of sympathy for his bad luck, I bundled up, pulled a hood over my hair, shoved my cell phone and inhaler in my pocket, and started off into the cold, rainy night.
Rain has never really bothered me. Sometimes I love it; I still find being out in it therapeutic at times, but since my fall, I had been afraid of it.
My need overcame my fear, though, so along I went, making steady enough progress through the neighborhood, sticking to the streets with the most lights on...
Eventually I ran out of those, though, and my leg was getting tired, so I retraced my steps back towards the house.
I got there, walked through the door, and was met with the strong smell of paint. It went into my lungs and I immediately knew that this wasn't a good plan, so I told him the paint was getting to me, and went back out.
I realized I had nowhere to go.
I didn't feel like walking again.
I didn't really feel like being alone.
There was nowhere dry to go.
Shrugging, I settled myself on the front steps, trying to pull my coat down so that I sat on it, instead of the wet concrete. It didn't work.
After a few minutes, my ass was numb, my pants were wet, and going inside and facing the paint fumes seemed a much better option than staying out.
This turned out to be a mistake.
I walked in and the fumes were much stronger. I started coughing, as they entered my lungs, threatening to choke me.
I made a beeline for my room, trying to hold my breath as I walked through the kitchen/dining area, where my roommate had been doing his thing. I almost made it, but right at the turn towards the backdoor and the tiny hallway that led to my room, a cough caused the breath to whoosh out of my body, which immediately tried to replace it...
Coughing so hard I thought I would retch, I jerked open the door to the backyard and barreled outside.
I didn't make it very far.
Earlier that day, the ramp which had been installed for my move home from the hospital had finally been dismantled. Finally, the brick 'deck' with stairs down to the actual patio and backyard were exposed.
It turned out that they were also incredibly slippery.
I made it about two steps before wiping out- going down in a spin, (with all my weight banging into my bad knee and leg) to lang solidly on my back, inches from the muddy grass.
Incredible pain shot through me, extreme protest by my body for putting it through this type of thing, but there was no 'wrongness' like the day I broke my leg. A small part of me relaxed at that, but she wasn't at the wheel, and the rest of me Was Not Happy.
"F---!" I shouted, then- "Goddamnit!"
I lay there, not moving, rain falling on me, cool drops hitting my face and neck, for a minute before two of my housemates appeared over me.
"Did you break the other one?" one of them said
"Shut up." I snapped, still biting back more expletives as my leg continued to yell at me.
I finally moved it, cursing as I did. I sat up, carefully. Still no huge amounts of pain from anywhere else, no feeling of wrongness.
With great difficulty, I stood, and made my way inside. My leg threatened to give out on me- even the feeling of the fabric of my pants on my knee hurt. A black mood settled over me. I was embarrassed. More than that, I was royally pissed off. I had had enough happen that day, and the fall, the subsequent consequences, were too much to deal with on top of it. I stomped (figuratively) around until I was finally able to make my bed, strip down, dropping my muddy, wet clothes in a pile on my floor, and curling under the blankets, without doing any of my skin routines.
It's the next day, and I regret that last decision. My skin is worse, of course. Especially around my eyes.
My leg is angry too, still- the muscles in the back of my knee are so tight and painful that I can't fully straighten it. I'm limping again, too.

There's at least one good thing about this though. The way that I fell, I really could have- and probably would have- broken another bone. Maybe more than one. It was very fortunate that I was able to take the impact with my knee, and rolled onto my back without my limbs flailing. Yes, I hurt. Yes, I'm limping. And that's incredibly annoying.
But I'm not broken again. And I very, very easily could have been.
So, there's something I should remember to be thankful for, at least.