Know Your Numbers

At this point in my PCS life I have a pretty good handle on my pain; how to tell when I am just “uncomfortable” or when I am dancing around my tipping number. I’ve gotten pretty spot on at knowing when a flare is coming on and how intense it will be. I’ve become acquainted with my triggers and can pretty accurately tell when its time to take a timeout.  Occasionally though, I have a day like today when I am doing something I am really involved in and push myself right past uncomfortable straight up to my tipping number and then jump off the deep end into full-fledged MY BODY HATES ME mode. Since I am too uncomfortable to sleep right now, I figured I would take this time to write about the pain scale, and how it relates to those of us with chronic pain.

In the world of Pelvic Congestion Syndrome there is never a 100% guarantee that your pain will stay where you think it will. Some days you wake up feeling great and tank by the time you’ve had your coffee. Other days you wake up searching for ice packs, and by the time you’ve finished breakfast you’re thinking you could run a marathon. Well, okay, not a marathon, and maybe don’t run but a short trip to Target is definitely doable.

A marathon is just silly…..

My point is, no matter how well you know your pain you’re still going to get surprised here and there. But for the most part you become pretty in sync with your body. You just have to listen. Keep a pain journal and track what you do, how long and how often you do it. What is your pain like before and after you do an activity. The same concept should be applied to your treatment choices. What is your pain like before you did inversions? And after? The more you listen and pay attention to your pain and how it reacts to your activities and treatments the better you can take care of yourself.

As a pain patient I can guess that you hate the Pain Scale about as much as I do. Regular people say their pain is at a 7 and doctors jump to treat them, but I walk into my monthly PCP appointments at a 7 and no one bats an eye. I LIVE at a 7 people. But this pain scale isn’t for the doctors, the nurses, your spouses or your friends. This pain scale is for you.  I personally think it’s best to know your “Comfortable Range”, your “Manageable Range” and your “Tipping Number”.  We can use my Pain Scale as an example. Remember though that pain is subjective, my 6 might be your 3 and another’s 8. It’s never cool to judge a Spoonie’s pain scale against your own or anyone else’s. No Pain Scale Shaming.

So, on my scale my “Comfortable Range” is between 3 and 5. “What about 0, 1, and 2?” you ask? I’m a chronic pain patient, there is no such thing as a 0 in my world, let alone a 1 or 2.  

3 is the new 0. You know, like 40 is the new 30 and all that?

Focus brain!

Between 3 and 5 I am comfortable enough to do just about anything; yoga, walking, cooking, driving, computer/desk work, visits with friends. You name it, I’m down. I call these days my GREAT Days. These days mean zero narcotics and lots of happy’s. These days are also like marshmallows at the end of a bowl of Lucky Charms….stupid hard to come by.

My “Manageable Range” is from 5-7 on my pain scale. This range is where I am starting to be uncomfortable. I probably shift positions more frequently and utilize my heat pad as much as I can. I’m using OTC pain medications as well as stretching and possibly a Lidocaine patch or two to help keep me away from my “Tipping Number”. I am less likely to go anywhere for any length of time and standing/walking are only done in short spurts.  Say, I would cook dinner but do as much seated as I can. I might work on the computer, but it would be from the couch, not at the desk.  I’m likely to be a bit picky about my activities here and take frequent breaks since I really want to avoid that “Tipping Number.” It’s also quite normal for me to cancel plans at this point since I am never sure if or when I am going to hit that point.

My “Tipping Number” is 7. Why 7 you ask? Because it’s smack in the middle of Manageable and “MY BODY HATES ME, PLEASE MAKE IT PLAY NICE NOW!”. <—- That would be 10 for you Pain Scale newbies. 

7 is that spot on my scale where I start to get anxious with the pain. I’m losing the ability to distract myself  with other things. My Tipping Number is when the big guns come into play. When we hit 7 is when I sit the hell down, shove an icepack down my super cute Victoria’s Secret PINK sweatpants and lay on top of a heating pad and wait for the number to slip closer to 5 again. 

There are days where I bounce between manageable and tipping from the time I wake up until the time I go to bed. 

If all efforts fail to keep me from going over my Tipping Number we enter into “MY BODY HATES ME, PLEASE MAKE IT PLAY NICE NOW!” territory. This territory took a while to really show itself to me and I had to really pay attention to my body to figure out just how long I have in the Tipping area before we move into caps lock mode. I’ve decided that moving from the Tipping Number to MY BODY HATES ME is a lot like that transition in child-birth when you dilated from an 8 to a 10. It can be quick and almost nonexistent or it can take its sweet time but in the end it’s inevitable.

Yes, it is that dramatic.

When the pain pushes past sort of tolerable to completely intolerable I notice that it manifests in one of ways. The first transition I call The Sillies because I become hyperactive in a sense. I get oddly talkative and silly. My words come out fast, almost excitedly and I talk too much.  I can’t sit down, no matter how much worse standing/walking makes the pain. As long as I am moving there is something else to focus on. If I sit, all there is to do is feel the pain. So I clean up around the house, or sit but shake my leg or foot.  Eventually I sit down, lay down and start the process of bringing myself back to a more tolerable level of pain.  

The other way this goes is what i assume is the more typical reaction: I get cranky, impatient, distracted and really don’t care what you’re saying or doing as long as I can sit down. I lose any interest in conversation and just sort of get quiet and still. Regardless of which way this goes, if we’ve ventured past 7 into 8 and (hopefully not) 9 I am definitely out of commission for the day.

So that covers just about every number on the scale except 10. I don’t like to use 10 too often for one very specific reason. I never want to give my pain the chance to one up itself. If I say I am at a 10 that tells me (and everyone around me) that this is code red, DEFCON 5, sound the alarms emergency shiz. This is get me an animated movie, comfies, stuffies, and my hot pack and The Hubs in my bed stat!

I’m telling you, it’s serious.

I have 2 times in my PCS life where I can say with the utmost certainty that I was at a 10. Once in 2013 when I woke up from my Trachelectomy/Left Oophorectomy and the entire month of March 2014 when my back made it impossible to stand for more than 5 minutes without insane pain. Remembering how intense the pain was at those times helps me to gauge my pain on a day-to-day basis. And let me tell you, 10 is ugly. It’s a lump in my bed watching animated movies eating popsicles and cereal and sleeping off and on for as long as it takes for the flare to come down. It’s like being on vacation in Mexico with that one person you can’t stand. Pain.

Like I said, it’s just not feasible to know your pain every second. There will always be times you think it’s going to be bad and then get better. There will be times you think you’re good to go and then hit a wall. You sort of just have to embrace life at a more spontaneous level being able (and willing) to make adjustments at the last minute, and make the best of the situation.

I know it’s not ideal to spend a chunk of your day reflecting on the negatives of your day and most chronic pain patients spend their time trying to forget about their pain, not put it front and center. Once you have a good sense of how your body reacts to your pain you can make plans around how to relieve it. Having a good handle on your condition also allows you to teach the people closest to you what it means when you say “I’m at a 6” without having to give them a rundown of symptoms and ideas for comfort.

Once you’ve got that baseline you can ease off the tracking and come back to it from time to time to see what, if anything, has changed. Maybe you’ve found a new way to relieve some symptoms or you notice a trend in triggers that you didn’t notice before. The point is that by giving your pain some attention you can learn to control it better. 

Okay! That’s it for this one. As always send your thoughts and comments my way either in the comments section below, via email at TheseNext6Months@gmail.com or Tweet em at me @Elizakate21.

You can also follow me around Instagram at Secretly.a.Superhero

4 thoughts on “Know Your Numbers

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  1. Did you work on your hip and pelvic floor muscles. Your pain is floating pain. you can get rid of this pain if you do proper exercise .
    when did you see your physical therapist for your pelvic pain or back pain .Do you sit long time in your work place, Do you have foot problem . Do you do exercise daily?

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    1. Thanks so much for your interest in my post! I have a fantastic care team helping me manage my condition. As I’m sure you can understand chronic pain is a complex thing and can require several different types of treatment. While I appreciate your intentions I prefer to keep the specifics of my treatment between myself and my care team. Thanks for reading!

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