20 February 2014

10 Tips for Individuals | Supporting a Friend with Chronic Pain

An article was brought to my attention recently. It was entitled 23 Tips for Men on Supporting a Partner with Chronic Pain.

As I read it, I found myself nodding in agreement. As a sufferer of chronic pain, I recognized every.single.thing. he mentions. Not only do the symptoms match, but the ways in which I deal with them and the ways in which I want people to respond are dead-on.

I shared it on Facebook and put it onto my Pinterest, hoping it would help the friends who have asked, "what do I do?" "how can I help?" Those same people, with the best intentions, sometimes do things that make me want to scream in frustration and run away. It's not that I blame people for responding the wrong way, but I think it may be time to realize the importance of learning how to respond - and actually implementing that knowledge into actions - properly. Because even though there is no culpability in it, there is an incorrect way to respond.

The title of the article could be off-putting, however. I'm not married, so I am not directing it at a particular individual. I didn't put it up for future reference; I put it up for now. In light of this, I've decided to take his share some of his tips here, adding caveats that make it more generally applicable to friends and family. So without further ado...

"I think that it is important to think of pain as your common enemy, not as a part of your wife or baggage that comes with her. It is something outside of both of you that impacts both of you and that can kill your marriage."

Yes. This isn't applicable only to marriages. Chronic pain puts strain on all relationships. And when you're suffering from pain, you don't want to be put in the box of problems. You want to be able to face the pain with the people you love. Collaborate, don't lecture. 

"If your wife is anything like mine, she will try to hide her pain from you. She does it for two reasons: one, she does not want to be a wuss or a whiner. Second, she knows that her in pain is distressing for those that she loves, so she hides it from us."

Yes. Yes. YES. This is 100% true. I have been accused of being a hypochondriac, imagining the pain, or a baby about it. And that hurts emotionally. From the fear of that emotional pain, I avoid reacting or acknowledging my physical pain. You need to look for it. Learn signs and signals. In my case, I either get crazy hyper and flippant, or really quiet and sullen. Extremes in either direction are warning of a problem. If you notice that I'm in pain and you say something about it, prepare to fight with me a little bit. I know that my pain will hurt you if you love me, so I will need you to be earnest and insistent.You don't need to say something every time you notice. Just learn to notice and when to say something...

"Because women in chronic pain have to be good at ignoring their own pain, their maximum sneaks up on them and on you. Trust me when I say that you do not want to be surprised by your wife’s pain. The wall of pain will hit her hard, and if you are lucky she will end up snapping at your or the kids. If you are unlucky, she will collapse into sobs that will break your heart to hear. Before I learned to read the signs in my wife, it would seem like her breaking point would come out of nowhere. We tried to get her to tell us when she was coming up on her limit, but she only notices about 30 percent of the time, and that is after years of coaching and encouraging."

This is why you need to learn how to read the signs of extreme pain. The downward spiral has an ugly bottom. This is where noticing my pain is important. If it's normal, everyday, manageable pain, that isn't dangerous territory. But when I have an additional injury, am sleep deprived, or have had a recent physical trauma, the pain can get out of control easily. Even the "normal" pain can sneak up on me and become unmanageable quite suddenly.

"When you note the non-verbal clues of increased pain, reflect them back to her. Ask that she put her pain on a scale from 1-10, but make note if she tends to tip to one side of the scale. My wife has had a C-section without anesthesia, so that is her 10. She rated a compound broken bone where I could see a jagged bone tip protruding through the skin of her ankle as a five. So know how she rates things. When you determine that she is in rising pain, encourage her to move towards a place where she can rest and take medication. Remind her how much the pain storm will cost her. If it is worth it for her to continue, then so be it. Do what you can to support her."

First, I have to say wow. A C-section without anesthesia? I can't even imagine. This woman has undergone horrendous amounts of pain. But the principle applies - when you're in constant pain, your pain scale is dramatically shifted from the normal one. Personally, since I'm always in some pain, everything through the "3" on a pain scale in the doctor office is negated to a zero. The rest is scaled accordingly. I don't think I'd ever use a 10... except in the case of an anesthesia-free surgery. That can have a 10.

To the second point, again, I have to heartily agree. Sometimes I don't notice the pain increasing. It can sneak up on me. If the people around me are able to pick up on my non-verbal cues and bring them to my attention, it can help me keep the pain at a manageable level. Once it runs away with me, it's hard to stop it. 

"Chronic pain does not mean that the person has the same level of pain every day or even at various times in the day. So encourage her to put the fun stuff first. If she has enough energy and pain relief to do a quick trip out and about, encourage her to go someplace fun rather than the grocery store."

Yep. Sometimes we save our energy for what we view as our responsibility and are too burnt out to do anything fun. Ever. Encourage some fun. Assure us it's allowed.

Don’t let her “should” on herself—beat herself up for what she cannot do. Argue back when she expresses guilt or sets impossible expectations for herself. When my wife tells me that she is a bad mother because she couldn’t stand in the rain beside a soccer field, I remind her of all the other ways that she has been there for our kids. Encourage her to tell significant people in her life such as her boss and co-worker that her life is significantly impacted by pain. Remind her that stating the truth is not the same as complaining and it does not make her a whiner.

I will fight you if you say this. I will fight you tooth and nail. I don't want to complain or do anything that could be perceived as complaining. Affirmation from the people who love me cannot be overvalued.

"One of my early ways of dealing with my wife’s chronic pain was to encourage my wife not to do things that caused her pain. Then I realized that if she avoided all activities that caused her pain, she would never do anything. Let her grit her teeth and get through pain for things that are important to her, even if it kills you to watch her do it."

If I can do it safely, without causing permanent damage and ruining my health, let me do it. If I didn't do anything that hurt, I wouldn't get up in the morning. Heck, I wouldn't get in bed. It all hurts. Just because there's pain doesn't mean it's bad for me. Let me have some fun, please. 
 
"Women in chronic pain are used to working through pain, distracting themselves, minimizing etc. They play mind games that help them get around it. But this means that they pay less attention to their bodies than other women do. In my wife’s case, it makes her really really clumsy. I used to try to help her by saying things like “Your toes and nose should be pointed in the same direction as the location you are placing an object like a glass.” That really isn’t helpful. We have compromised: for things my wife knows are important to me, like lifting and carrying food, (I love her cooking and when it gets spilled all over the kitchen floor, I am in pain) she agrees as a favor to me to allow me to do those things. And, I keep plenty of Band-aids, ice packs and other things for the rest."

I am a klutz. I had never attributed my klutziness to my pain, but upon reflection, it makes sense. In support of this theory, I have noticed that I get more clumsy after I hurt myself. I'm not as aware of my body as a matter of survival or "quality of life." It may be frustrating to watch, but it's part of the reality of the situation.

"The key thing to remember is that pain builds even while you are managing to ignore it. The longer your wife is in pain, the more of it she experiences and the less she can block it out. So what would be an objective level 5 pain your wife can block out to make it a level 2. But when she is no longer able to block it, it will come back as 6-8. Beware of this whiplash phenomenon."

When the pain comes back, it comes back with a vengeance. There isn't much you can do about this, but if there's a sudden swing in mood, this is probably the cause. The pain can suddenly go from "under control" to "hitting me hard and burying me." This is normal. Just be as supportive as you can be and help me get it back under control. Help me to breathe and relax. Help me get more comfortable. Distract me.

____________

I don't want my pain to rule my life. Even more than that, I don't want my pain to rule your life. All of these things are ways in which we can make it better... for both of us.

18 February 2014

Side by Side

I was walking down the path, eyes wide open for beautiful things to capture with my camera. I caught sight of a lone rose bud of spectacular color. I approached the bud, contemplating the distance and angle from which I could best catch the wonderfulness of it.

I framed the shot and focused the lens. What I saw through my viewfinder surprised me; alongside the bud was the dead shell left behind by a previous bloom.


I chose an angle from which I could capture the beauty of the rose without having its dead partner in focus.

Then I changed my mind. I snapped another shot, this time allowing the dead and the living to be nearly equally in focus.


Because that's closer to the truth of it all. The living and the dead, the beautiful and the ugly, they are found side-by-side. And every thing that lives will die.

We should recognize and focus on the beautiful, yes. We should not allow ourselves to be swallowed by the evils and ugliness of the world. Sin, temptation, and darkness exist, though. To ignore them and deny that they are in our lives can be just as dangerous as dwelling on them.

Because ignoring the reality of death is also ignoring the reality of life eternal. 

Christ, by his sacrifice, made death a sacrament. The reality of death is something in which we will participate. The sacrament of death is something in which we are allowed and invited to participate by the merciful Redeemer. If we participate in it through His grace, we will also participate in the reward of the sacrifice: everlasting joy, free from all pain and sorrow.

Don't just block out the pain and evil. Recognize it. Allow it to make an impression on you as dark and horrifying so that you might recognize the great blessing of light and joy. 

Don't turn a blind eye to the suffering of others. The ugliness of their pain could just as easily be your ugliness.

Darkness is only driven out by light.

Sorrow is only driven out by joy.

Death is only conquered by life.

Yon Evil Bush

Shutterbugging - a word I learned from Rosie. It means adventuring with the purpose of capturing beautiful photographs.

I recently purchased a very, very, very nice camera (pocketbook went OUCH!), but have had little opportunity to use it in my normal, day-to-day, erm, mostly boring life. This past weekend I found myself on one of the most beautiful college campuses in the world, which also happens to be my alma mater. It was the perfect opportunity for shutterbugging.

I meandered about, sometimes lying flat on my stomach to get the right angle, sometimes straddling bushes to capture a flower. One must make sacrifices for one's art.

I made one unanticipated sacrifice that ended up being rather time consuming.

You see, when a lady is in the real world, she finds herself carrying a purse everywhere she goes. This provides a convenient place to keep many things, one of which is her phone. When one gets used to always having a purse, one forgets how very inconvenient it is not to have a purse. This is relevant because, you see, most women don't carry purses on campus. I guess it's because you usually have a book bag or something, but most people don't walk around with a purse all the time. It would be very inconvenient and cumbersome. Being an alumna, I neglected to even bring a purse with me on this visit.

Wearing Sunday clothes, I had no pockets. I found myself with my camera around my neck, and phone in hand. This situation forced me to be creative with methods of holding my phone while still acquiring magnificent shots.

For one particular shot, I had my phone tucked under my elbow. I found myself leaning over, torso at at a right angle to my legs, trying to snap a photo of a rose (a photo which inspired a blog post to come...). I didn't quite have the angle I wanted and, without thinking about my precariously placed phone, I lifted my right elbow to change the angle of the shot. As focused the lens, I felt the phone slip and heard a soft thud. I finalized my shot, captured it, and then began the search for my phone. I knew it had landed in the bush that was directly under my elbow (dictated by the nature of gravity and confirmed by the noise it made) and thus directed my search there.

Fifteen minutes later, I was still squatting next to the bush, dirty and sweating now, but still without my phone. It had managed to disappear completely, as far as I could tell. The bush ate my phone.


It looks so innocent and innocuous. And small. Yet this bush was able to hide my phone from me for a solid 15 minutes. I was beginning to doubt whether I even had a phone when I finally found it wedged deep inside the bush. I'm not sure what this whole episode says about me, but I'm fairly certain that it doesn't say anything good. 


17 February 2014

Happy Presidents' Day, Y'all.

I was sitting on the train yesterday when I overheard a very funny conversation. It took place between a mother and her son, and I was only hearing the mother's side. This is what I heard.

"Do you know what tomorrow is?"
----
"Yes, it's Presidents' Day. That's why you don't have school."
----
"No, you don't have school, which I think is stupid."
----
"Do you know which presidential birthday it was originally celebrated on?"
----
"No, it's not Martin Luther King, Jr. If it were his birthday I would think you should have it off since he was important. But it was Washington's birthday, which is dumb because Washington never did anything for this country."

I swear, she was 100% serious.