As many of you know I have dealt with chronic back pain most of my life. It’s something that has impacted my world, my daily life, my thoughts, and even my ability to function on a basic level from time to time. For those of you who deal with chronic pain you know the struggles. You know that trying to describe your pain to people who don’t suffer from chronic pain is about as useful as describing quantum physics to a three year old. I’ve learned to not talk about it to people because they begin to treat me like I am fragile; broken. Yes, it affects my life. No it doesn’t mean I will fall to pieces if you touch me wrong (at least not usually). Today is another step in allowing myself to be seen in my truest and most vulnerable sense in order to show others that, I, just like everyone, else struggles. Follow me as I take you through a little bit more of who I really am and what my life is really like underneath it all.
My first memory in life is a car accident. Honestly, it’s sort of nice to have my first memory be one where my parents are rushing to my aid because so many of my childhood memories are so dark (a story for another day). I was maybe 3. I was sitting behind my dad who was driving, Tashy was in a car seat and still very much a baby, and Rosie was behind my mom. There was a big white van in front of us, and I remember my parents rushing out of the car to check on us with the care and consideration that some kids only dream about.
By the time I was 24 I had been in 7 more car accidents with the last one being the worst I could remember. Pain has a funny way of discounting itself over the years. Physical therapy for the pain happened at least once that I can recall…or at least what they called physical therapy back when I was a wee one. I remember the hospital nurse finding us cute little train printed pajamas to wear instead of the horrible white gowns the grown ups got. They put us on these uncomfortable beds and switched between ice and heat. That’s the extent of what I remember from “physical therapy.”
Over the years my pain ebbed and flowed. Some days being so debilitated by it I couldn’t get out of bed, and other days being a crazy happy go lucky kid who only felt the minor twinge of an ache while running on the beach chasing whatever waves we could find.
The pain worsened as I hit my late teens. My metabolism took a dive, and I gained a lot of weight between the ages of 18-20. By the time I got my first gym membership I was horrified to discover I was at 38% body fat. For someone who had never been more than a size 2 this was horrifying to me. I dealt with the pain in whatever ways I could which was really very limited considering I had no idea how to fix the problem besides stretching when I couldn’t bare it and numbing it with crazy amounts of Icy Hot. Because my mom struggled with addiction most of my life (she is now more than a decade sober btw!), I was super against taking anything that I might get addicted to. I would take an ibuprofen maybe a few times a year because I was so afraid that I had this addiction issue built into me too. Icy Hot was my go to for pain, and I smelled like menthol for years. I would go through a tube a month at least. Somehow the feeling nothing was better than feeling the pain all the time.
I wrestled with a lack of sleep that left me feeling much more than irritable. From the time I moved out at 18 through the age of 20 I cannot recall a single time where I slept more than 30 minutes before the pain was so bad it would wake me up. It drove me sort of mad, this lack of sleep. I was bitter and angry and just plain mean. Me, you ask? Yes. I was a terrible person. I like to think that my poor behavior stemmed from a lack of sleep, but honestly, it was more likely just that I hadn’t yet been humbled by life in the right ways. I was reproachful at best towards my father for these deep seeded feelings of abandonment that guided my world at the time (more to come on that another day). I
had a self righteous attitude that not even Jesus could pull off. I am ashamed of it looking back.
By the age of 22 I had lost 20% body fat and I looked and felt better than I ever had before. My back pain was still at the very least a constant annoyance. After losing so much weight I did finally start to sleep 2 maybe 3 hours straight, and falling back asleep became easier too.
By 25 I was doing 4-6 sets of 20 reps on the leg press with 450 pounds. I was a beast! I did one leg Romanian dead lifts on an upside down bosu with 25 lb dumbbells in each hand. In college for fitness, I was working out about 25 hours a week between classes, internships and my own workouts.
When my ex-husband had me move to North Carolina with him after I finished my degree I remember waking up for the first time in my adult life, maybe 2 months into living there, after finally sleeping on a real bed (the truck took forever to bring our stuff over!) and actually sleeping straight through the night. I didn’t wake up once. I slept 8 solid, glorious, hours, and the world was new again! I could breathe better. I could see better. I could think better. I had energy. What? It was like someone had refocused the camera lens to my life, and I remember realizing “oh, this is what it’s like for everyone else all the time….fuck.” haha. I couldn’t believe I how different the world was with a full night of sleep. It was like magic!
I went through a few years around this time where I had very few really bad days with my back pain. I had a hard time going to the movies, and if I did I had to be ready to deal with 3 nights of poor sleep and an active pain level of 5-8 for those next few days. Other than movies and long car rides I was basically fine. My pain was back burner stuff generally.
That leads us to today I suppose. Since starting my business a little over 3 years ago my pain has certainly gotten worse again. My life is very sedentary. If I’m not in cuddle sessions I’m on the computer keeping records, doing payroll, trying to keep up with email, social media, interviews, creating certification programs, writing books, writing blog posts, reading, meditating, watching television or playing a game on phone because I just need 5 minutes to let my brain not be such a clusterfuck. You get it. On top of the very sedentary lifestyle I lead, I also deal with an incredible amount of stress. I often feel like my body is failing me. I get sick more now than any other time in my life. I deal with an average pain level of 4-5 with moments and sometimes days where I have hit 9 even in the past year.
After dealing with all the big emotional black holes I could find, I recently, finally, felt stable enough emotionally to go to the doctor about my back pain. This is one the scariest things in my life because I’ve always wondered if I’ll eventually lose my ability to walk. The pain is pretty bad sometimes, and after so many car accidents that went basically untreated I was very worried that my spine was not ok. With the encouragement of my Beau I made an appointment, explained the situation and how I refuse to take pain medication for a chronic problem and how I wanted to figure out what was wrong with me. My doc was great and ordered x-rays, physical therapy and acupuncture to start.
The x-rays came back a few days ago, and I am glad to report that other than some abnormal curvature in my neck and mid back I am fine. Thank goodness. They told me the physical therapy should be able to resolve the pain. I have yet to make an appointment for that. Don’t judge me. I’ve got a lot to get done right now. haha. But really, the online certification takes precedence because I believe this is the step that will make it so I can finally take a salary and not live on credit cards anymore. That’s worth it. The financial stress makes my chest hurt now. I have to solve that first. I just do.
Ok, so obviously I write really long blog posts. I apologize. I get really into this kind of stuff. I am an over-communicator if anything at all. The whole reason I wanted to write this blog post was to explain my chronic pain because I know so many of you have questions about this and I rarely talk about it (or even let anyone know it’s an issue), so here’s the heart of this little post:
My pain scale:
1-no active thoughts, but minor irritation in the back of my mind a few times throughout a day
2-several slight irritation thoughts in the back of my mind throughout a day, but still no active pain
3-most of the day I feel/notice discomfort in my back, but it’s not really bothering me much
4-discomfort basically always in the back of my mind for a day. Usually a dull achiness, but sometimes more of a radiating pain, stiffness, or slightly off putting nausea pain feeling
5-this is the point where it becomes an active thought that I cannot ignore and must actually do something about. The pain is strong enough that I have to move, stretch, walk around, something immediately if I’m going to avoid worse pain. This level will usually dissipate quickly if I listen and respond to my body. It hurts, but it’s not going to derail my day.
6-by this point I might be able to regain control of my thoughts for a moment or two if I need to, but it’s hurting enough that I have to be actively dealing with it. i can answer questions and hold a conversation (as long as you don’t mind me being in a funny stretch while we talk). This pain feels usually squeezy, pokey, slightly stabby or sort of hot flushings of pain that radiates from my mid to low spine and up/out
7-I’m in enough pain that I’ll only hear about 50% of what you say to me. The thoughts are so intense with the pain that it’s controlling me pretty fully. I am actively attempting to repair it. I am likely going to shed a tear or two, taking slow, deep breaths while I move or stretch or do whatever I can because this is not ok. I am not ok. I’m still not to the point where I want to take pain medication (except for maybe a pot edible if I’m home and don’t have to work anymore that day). This pain usually lasts a few minutes to a few hours and takes over my active thought process most of that time.
8-the intensity of the pain here is to the point where I can’t take normal breaths. I am crying; actively. My back muscles feel like they are made of bricks or steel. I can’t stand or walk. Sometimes as it reaches closer to a 9 I actually will cry with tears streaming down my face but without any body movement because that makes it worse. There is a heavy pressure in my head at this point and the world becomes a tunnel vision view for me if I can see anything at all. I might be able to get out a couple words which will likely be to tell you that I’m at an 8. This pain typically lasts a few minutes up to maybe 20 minutes. If it last more than a few minutes I am taking pain medication. I have to.
9-this is a paralyzing pain. It’s so intense that my vision goes black. It feels like my spine might actually rip out of my body, pulling me into a million little pieces. My breath might be held for up to a full minute in the worst of it because the movement of taking a breath is excruciating. I don’t feel the rest of my body at all. All that is is torturous pain. I likely will have made it to the floor prior to hitting this stage and I need to be left alone. I can’t talk. I can’t tell you how bad it is. I can’t think. I can’t do anything. I have to wait it out. I will likely cry for a good 10-15 minutes after hitting this pain level because it’s physically and emotionally draining on me. I will be exhausted for hours afterward. I will hurt for days and not sleep well for at least that long. Luckily this pain level usually lasts no more than 30 minutes and recovery can begin.
10-this has only happened once that I can think of. It was after the last car accident. The EMT thought I was faking it and pretended to give me morphine on the way to the hospital. We were going at least 45 when we hit the car in front of us (I’ve never been the driver in a car accident btw). I was in an incredible amount of pain. The ride took 15 minutes or so. After about 10, they asked me if I felt any better from “what they gave me.” I said there was zero change and I was still having a hard time breathing. The guy said that he hadn’t been sure if I was faking and so he hadn’t actually given me any, but he did then. It still didn’t seem to make any difference. The worst pain of my life happened in the hospital. They forced me to do this x-ray machine or something to take a picture of my chest (which I still have scar tissue on my rib cage from btw), and the machine they put me in squeezed my back and rib cage. I screamed so loud and so intensely that they actually kicked us out of the hospital…ok, not technically, but they rushed me the heck outta there immediately after that with a prescription for 2 muscle relaxers and the doctor version of heroin. I didn’t pass out. It wasn’t that kind of pain. I wish it had been that kind. It was so much worse than that. I do not have the words to do it justice, but I also don’t anticipate reaching this level again (as I don’t plan on having children) so I suppose it doesn’t matter much.
Knowing how pain works for me, you might be wondering how you can respond the best way when I experience pain. Here’s what you need to know.
1) I have had one moment in the last umm…well really ever that I can remember where my pain level would be considered a zero. It was weird. (this does not count when I’ve had drugs though because obviously I can’t feel pain when I numb my body to it). I’m always in pain. For me that’s normal. It doesn’t usually merit a response. It’s as much a part of me as my brown eyes or bright smile.
2) If I have a pain level that you requires immediate attention and I am with you I will tell you where I’m at and what’s going on.
3) You don’t need to treat me any different than anyone else. Maybe don’t hug me so tight you crack a rib, but you shouldn’t be doing that to anyone. Bear hugs are still fine. I am a tiny human. Use common sense and squeeze accordingly. You won’t break me.
4) If I tell you that I have a pain level of 5 or higher please do not touch my back. When I am actively dealing with the pain touch is actually distracting and concerning because it’s another thing I have to keep track of and try maintain control over to avoid the pain getting worse. This usually takes just a few moments and is not a big deal.
5) If i cry because of the pain please don’t pity me. Don’t look at me like I’m broken. Honestly, it’s best if you just pretend it’s not happening or didn’t happen. It’s embarrassing. I get that that is silly, but it is. You treating me like I’m broken or fragile or different than you makes me feel broken or fragile or different and that sucks. Please give me my dignity, allow me to deal with what I have to, and let me be just a normal person. Please.
6) If you have questions about my pain, my back, my history, or literally anything at all please just ask. Be direct. Do not be ashamed. I am an open book. Ask me anything you want. I am happy to give you the appropriate and honest answer. If I do not want to answer your question I will tell you that. I will never be offended by a question though.
7) Sometimes I can predict the pain, and other times I can’t. Please know that if I have to adjust or change plans on a bad day it’s not personal. I adore you. I just sometimes have to prioritize pain. Sometimes it wins.
8) Suggestions are great, but I likely have done whatever the thing is you’re going to tell me to do already. Don’t be offended if I roll my eyes or get irritated. When the 500th person tells me I should do xyz it gets hard to pretend like it’s new information. I mean no offense. I do this to people too. I love when people tell me things to try, but sometimes it does get frustrating.
9) I am the same person I was before you knew what I deal with. Nothing has changed. If you have people in your life or if you are the one who deals with chronic pain I urge you to have open conversations about it. Ask them or offer to describe the pain scale and what they want/need when things are tough pain wise. “What do you need right now (or when xyz happens)? or How can I best support you?” are both great questions to ask if you have someone who’s dealing with pain.
Lastly I want to thank you for taking the time to learn my stories. I am grateful and humbled by the support and stories of all you amazing people around me. I want you all to know that I am doing good. I’m stressed out, but I am making progress. I’m in a lot of pain today, but like most days, I’m ignoring it when I can and dealing with it when I have to. Thank you for being here. Thank you for being in my life. Thank you for being you.
Peace, Love, and Cuddles,