Pain Awareness Month

Pain Awareness Month

Posted on by wkennar
(Just a few of my son’s cubes)

September is Pain Awareness Month.

Which kind of feels like a joke. Because, I have a close-and-personal relationship with pain. I am very aware of pain — every month of the year. 

Pain is a part of me — night and day. Weekdays and weekends. It doesn’t even take major holidays off. 

My pain is commanding and assertive. It does what it wants to do, and it doesn’t care if I’m in the privacy of my home or walking to my neighborhood Coffee Bean. 

Or at my son’s Cubing Competition. 

About a year ago, my son became interested in Rubik’s Cubes after watching one of his very good friends solve them. (Who knew there were so many cubes? Some of them aren’t even cube shaped!) This past Saturday, my son participated in his first Cubing Competition which involved five different events. 

The competition was held in a high school gymnasium about an hour away from home. Our family didn’t know exactly what to expect, because since this was our son’s first experience competing, it was the first time my husband and I were spectators at such an event.

There’s a lot of sitting around — on bleachers.

Then there’s a lot of standing and moving around so we could get a good view of our son cubing which would then make for good photos and good videos. 

And that’s when my pain decided to make a grand entrance. During one round, and thankfully my son wasn’t competing at the time, I felt like my leg was about to buckle under me. A strong muscle cramp gripped my left thigh. 

This was new for me. Usually cramps hit me in my left calf. And usually they happen at home. Just a few weeks ago, I had a cramp in my calf during my virtual appointment with my therapist. Sometimes cramps wake me from sleep. At home, I can cry and bang the mattress, bite on the blanket in an attempt not to wake my son. 

But we were at a high school gymnasium, with about 100 participants and their families. My husband and I went outside and found a bench. I couldn’t sit without excruciating pain, I couldn’t stand and stretch without feeling like I was going to fall. I couldn’t walk it off or massage it away. And I couldn’t cry or make a scene, because there were a few other parents outside on their phones and dealing with younger siblings. And, most importantly, my son was inside waiting for us. 

I was very aware of the time, knowing my son’s next round was happening very soon, and I certainly wasn’t going to miss it because of a cramp. 

My husband and I went back inside. Underneath my double masks, I pursed my lips. I tried to take deep breaths and tried to calm myself down. 

I tried to focus on the moment and watch nearby competitors as my son waited his turn. But I had a hard time standing and had to lean heavily on my husband. 

I was aware of my pain. Very aware of my pain. 

And that’s probably one of the hardest things about my Undifferentiated Connective Tissue Disease. The randomness of it. The fact that I never quite know how I’ll be feeling from one day to another. Or in Saturday’s case, from one hour to another. 

As my therapist and I have talked about, the only thing predictable about my autoimmune disease is its unpredictability. 

In my life, Every Month is Pain Awareness Month.

It’s Pain Awareness Month

Posted on by wkennar
(You can’t tell from this photo, but I was in a lot of pain. But it was a great day! My family and I had enjoyed a fun family outing – which included a couple of hours in the car as well as an hour-plus of walking. And, I got these beautiful sunflowers – my favorite flower! So there were lots of reasons to smile. But my leg h-u-r-t!)

September is Pain Awareness Month.

It’s gotten to the point where I refuse to answer a nurse when he/she asks me, “What’s your pain level like on a scale of 1-10?”. (Just so you know, I don’t ignore the nurse. I simply explain I can no longer answer that question.)

I used to really try to answer. I’d look at the range of faces and short descriptions under the illustrations and try to figure out where I fit on that scale. 

But now I realize there’s no point. My pain level can change from day-to-day, hour-to-hour, minute-to-minute. 

And sometimes, many times, my pain level is irrelevant. It doesn’t matter how much pain I’m in. If it’s 3:00 on a weekday, then that means I need to pick up my son from school – regardless of how I feel. It’s non-negotiable. 

I rarely let pain stop me from doing my daily activities. Because if I did, I wouldn’t do anything most days — at least lately. (The pain has been off-the-charts the last few weeks which means more doctors appointments and changes to my medications.)

But also, I wonder what long-term pain does to me — my body and my mind? I’ve been dealing with UCTD since 2010 (even though I didn’t know it was until my diagnosis in 2011). Ten years of pain has to warp your perception of discomfort. A “5” on my scale, I’m sure would be at least a “9” on my husband’s scale. (This may be a very bad generalization, but at least when it comes to my dad and my husband, they are not as pain tolerant as my mom or I.)

Here’s the other thing about pain. Everyone experiences it. In some way, shape, or form, everyone is dealing with something painful. 

When you stop and think about it, that’s a powerful reminder to pause and really try to remember to treat others with compassion and kindness and patience. 

Because you never know what someone is dealing with simply by looking at them.

Pain Isn’t a Once-a-Year Topic for Me

Posted on by wkennar

 

Sometimes it’s hard to look at my legs with gratitude for all they can still do.

 

September is Pain Awareness Month, a “time when various organizations work to raise public awareness of issues in the area of pain and pain management.” 

Have you ever seen that 1-10 pain scale? The one doctors show you, with a range of facial expressions? 

I don’t like that scale. And I don’t like being asked to rate my pain. 

I remember a visit to a pain management doctor. During the intake, the nurse asked me to rate my pain, right then in that moment. I refused. 

I’m usually a very compliant patient, obedient and direction-following.

But, let’s face it. After 10 years of living with my autoimmune disease, I’ve gotten really good at pushing through the pain. I have to. As a result, my pain scale most likely doesn’t look the same as yours. What I now consider a 6, my husband would probably classify as a 10. 

Here’s what I can tell you about my pain. It fluctuates. And not just day-to-day. Sometimes hour-to-hour, even minute-to-minute.

In the interest of pain awareness, I thought I’d share just a bit of what my pain is like.

–   Sometimes, my left calf is tight. That tight feeling you get before, during, and after a muscle cramp. Except my tightness lingers. For hours.

–  Sometimes I don’t have pain. I have a general heaviness. My now twelve-year-old son and I used to play “squish” when he was younger. It was a wrestling-type game that happened either on the floor or on my bed. We’d tickle, but generally he would end up “squishing” me – pinning me with his body. That’s how I feel. Like I’m walking around, cooking dinner, watering my plants, and I have an invisible child strapped across my legs, weighing me down.

–  Sometimes I have a throbbing pain. You know that pain you get when you’ve bumped into the sharp corner of a table? You can’t see a bruise, but the area is sore and sensitive and just hurts.

–  Sometimes I just hurt. Like I’ve been pricked with needles (and I have been, so I know what it feels like). My calf is sensitive, and I have to roll up my pants so the fabric doesn’t touch my skin.

–  Sometimes the pain is rocking-back-and-forth, pulling-at-my-hair kind of pain. Sometimes it just randomly hits. Sometimes I know it’s coming. My calf muscle may begin twitching. On certain occasions, I can even see it moving. It makes me think of when I was pregnant, and my husband and I would joyously watch my stomach move when our son would turn or stretch. There is nothing joyous about this though.

–  Sometimes my leg feels twisted somehow. As if someone took my muscle and twisted it, the way you wring out a washcloth. And simple things, like bending to pull something off the bottom shelf of the fridge, or bending down to pick up the mail off the floor, or standing on my toes to reach the colander from the shelf in the kitchen, aren’t so simple for me to do.

And I could go on. 

I don’t want pity. Don’t feel sorry for me. 

Feel compassion and kindness and patience for everyone you encounter. Because you never really know someone else’s pain.