When people first find out I am a person that lives in chronic pain (not to mention the other disabilities I have), they really just act like oh, so you just hurt all the time. Everyone hurts, it's not a big deal, why do you act like it's such a big deal?
Well, first of all, besides the fact of my blog being titled "Chronic pain: It's not just physical" the physical part has a lot to do with it. If you don't live in chronic pain you don't understand it. Sure you sprain your ankle, bump into a wall, have a headache, you understand pain. You break your leg and you may even understand chronic pain on a temporary level. But here's the deal folks. You don't live at excruciating levels of pain, day in and out, every day, for years. Most of the time I am in so much pain I am nauseous, dizzy, can't think straight, sweaty. But can't look like I'm in pain, because that's not socially acceptable. And when people say "Hey, how are you?" The answer should always be, "Good, how are you?" because no one wants to hear the life vom that really wants to come out of your mouth. I would classify my pain on any given day at a 7-8. There is a really cool pain scale, located here that provides descriptors to go with each of the numbers instead of those little stupid faces. I really like the one with descriptors because it provides actual symptoms instead of little stupid faces. You know why I don't like little stupid faces. Because this graphic is extremely accurate:
Anyways, I'm here to talk about why pain isn't just physical. When you are in the kind of pain I'm talking about. 24 hour a day pain, mind numbing, excruciating pain...it takes over your life. It literally eats you alive. PAIN IS YOUR LIFE! Pain affects your emotions, your spiritual realm, your mental state.I'm gonna spend just a little bit of time (because that back injury is acting up into my typing fingers) to explain what I mean by each one. Just so you can get a glimpse into why when someone says, "Well, everyone hurts, it's not a big deal." Why it really is a big deal.
First of all, this week has been an emotional train wreck. I've struggled back and forth in my head of whether or not I would delve into any of these "incidents" on my blog. And I think I will delve into one later, but it is unresolved at this point and I think I am over-emoting it at this point (because my pain is so extremely high this week because of that back injury...see this is proving my point already) and if someone happens to read this that knows these people that could be bad news bears for me. So at this point. I'm just going to say that, I was tried to the max this week. I was in pain to the max this week. I had an injury that should have been better in 2-4 days max and it still isn't healed a full 7 days later. The only thing that I can figure is that every time an emotional bombshell was thrown at me, I could almost instantly feel everything in my body tightening back up and the injury getting worse and me walking straight back to my bed and reaching for another pain killer.
Let's just say I had a complete and utter break down at an appointment and kind of lost it and felt so bad for the practitioner I was with. She was very polite and calm and kept telling me she just couldn't imagine what it was like to live my life, she couldn't imagine how difficult it was. But when you are trying so dang hard and keep failing and keep getting told that you aren't progressing and there is nothing more to do, it gets old. I would say the majority of my summer, I spent at least 3 of 5 (and most weeks 4-5 of 5) days a week at some kind of therapy, treatment, appointment of some kind and I'm not getting better. In fact I'm getting worse. And that gets old fast. That eats at your emotions fast. Like real quick. And I just kind of lost it, when someone else was losing faith in me.
Lastly, the biggest emotional thing I've struggled with is feeling like a burden or having people not wanting me around, it seems like. Like if I get so lucky to be invited to do something with a friend or group of friends the entire time has to be planned around me and then they realize how much of a hassle it is and then they stop inviting. I mean they have to plan where we eat around me (gluten free--maybe more free soon, I've been having a lot of strange reactions lately and lots of salt), what we do (can't be too hot, too cold, involve standing, or adrenaline), how long (I need my naps and if I do anything too long, I'll just fall asleep while we are out), and what time (can't be too late, too early, or during an appointment). I mean I'm almost frustrated for them. So why should they invite me? Shouldn't I just have to lay in bed all day...ummm I know the answer is no to this, but seriously, I also realize this would get old fast. I'm also struggling with frustrating my physicians. I know I'm a frustrating patient. But I'm a frustrated patient. Please don't give up on me.
Let's just say my emotions have me feeling all Meredith Grey this week saying:
I mean it's not like I chose this life. I just want someone beside me in it. I do have one great friend now in town, but more than one is always nice :)
*I'm writing my spiritual section from a Christian perspective, but I imagine it would work for any spiritual believe you have.*
Let's just say this. I really miss church. A lot. I mean I "go to" church just about every week. I watch church on my laptop from my bed and it's good. But there is something about sitting in a sanctuary, surrounded by fellow believers, singing worship music at the top of your lungs, with your hands raised to the sky, worshiping the One who made you, that is so much different than laying in your bed in your living room in pain kind of paying attention, while you might kind of be checking Facebook at the same time.
I don't go to church because I'm in too much pain. You can read that as emotional or physical. I blame it on physical. The church I am currently attending has about a 1.5 hour service in an auditorium like room so the seating is very painful for me and the flooring is cement so any standing is out of the question. They also use flashing and strobe like lights so I would likely have seizure like activity while there and that would be no good of course. Plus, there is a guy that hugs people at the front door and I don't like to be hugged. These are my excuses. But all it is doing is driving me further away from God.
Listening on my laptop, is not the same as being in worship at the House of God. I also, no longer, have a small group or a Bible study, so I am not in the Word weekly on assignment. I am not disciplined enough to make myself do it, because I "don't feel good" or "I'm too tired" or "it hurts too write in my journal or workbook". But seriously someone, somewhere reading this needs to hold me accountable and get me involved somewhere and get me in the Word. Because, seriously, I love God, but I need to love Him more.
Everywhere I drive is only Christian music in my car, but that's not enough. I pray almost all the time, but that's not enough. But anyways, pain takes over your spiritual life too. You hurt so you don't go to church, so you don't go to Bible study, so you stop doing daily reading, so on and so on. It takes a toll. And then when stupid emotional stuff happens you complete freak out and it snowballs, because you aren't rooted where you need to be.
The last way that I'm going to talk about pain not being physical as is mental. I'm talking like cognitive. Like you hurt so bad, you can't function properly and do simple tasks. Or forget simple things. Or forget simple words. Or do really stupid things.
I don't really know what to say about this, but I will give you some examples from recent memory (which is odd, since I'm talking about having a bad one in this section, but I'm not in much pain right now, ironically).
- Leaving the gas on on the stove. And I'm not talking like with a pot or anything on there. Oh no, not for me. I'm too special for that. I'm talking like take the pot off, serve the food, clean the pot, put away the dishes, pack the left overs in the fridge, go to bed, and 2 hours later mom yells in my room "WHY IS THE GAS ON THE STOVE ON!!!" with nothing on the stove.
- Not saving really important documents on the computer. Like your graduate thesis, that you've been working on for 9 months. That is over 126 pages long. That you've re-edited so many times it's no where near the same as the first time. Over 9 months, did I say that, I could have had a baby by now, who doesn't hit save on that?
- Not remembering why I am doing simple stuff, like why I went into the kitchen, or what I was going to the store for, or ya know where my house is. Yeah, you heard that, there have been multiple times I was driving and didn't even know which way to go home.
- Coming up with weird words for things, like how about that time I called my car a guitar.
- How about having a document in my hand and not being able to type the words on the piece of paper in my hand into the computer, because that is just way too hard. Like my brain can't comprehend how to transfer information anywhere.
- This also goes for reading and writing. I can't read fast or write fast. If you guys knew how long these blogs took to write, it would frighten you. It takes me on average about 45 minutes to read a 10 page chapter and I usually will only comprehend about half of it, if that. I'm also extremely dyslexic with both numbers and letters. Thank God for those red squiggly lines and computers. I would get nowhere in life without them, and sometimes with words like from and form I still get in major trouble, like in my thesis, because those red squiggly lines don't catch words that are spelled with one letter switched. Dangit.
So when you find out someone is a chronic pain warrior, realize that it is so much more than just being in pain. And no, not everyone deals with that. We function in amazing ways. We have to keep our emotions in check, balance our spirituality with it (even if that is just meditation for you, it's so important), and overcome the mental blocks that come with it as well. It still ceases to amaze me how we get from one day to the other with people not even realizing how hard it is, because we are graceful and tactful, and probably way more polite than we should be (most of the time). There are definitely days where, I'm not so sure I can do this anymore. But then I remember, I don't really have a choice, so I better suck it up and get to moving on. For now, while I'm still trying to figure out why this pain was given to me and how to manage it (that's a post coming up soon); I will remember this final picture in my head and keep in mind that I'm a survivor and an over-comer, and if you are a chronic pain warrior, so are you.