Sunday, May 26, 2013


I am still stuck in a rather painful flare and have been thinking of lots of things to write because of it. Unfortunately, there is no better inspiration for a pain/disease help site than a painful disease. It always seemed that doctors really had no solutions to offer for coping with the pain of my disease and I think I have figured out why: without being backed into a corner by the disease itself, you do not think of bizarre, creative solutions to deal with your ordeal.

One method that I am particularly fond of are (broadly stated) distractions. Now, I am fully aware that not everyone benefits from the same tactics in pain management. If that were true, there would be one miracle pill that we could all take once a week and skip through the rest of our merry days. However, there is a possibility that one or two of my methods may work. And even if they do not, I would like to prime your own creative pumps to see what you can come up with.

From a neurological standpoint, distractions are useful in pain management because there are two main parts to the pain experience. The pain sensation (where the pain is initiated by the nocioceptor (pain neuron) at the point of aggravation) and the pain perception (where our central nervous system determines how uncomfortable the pain is; how pain is experienced by the individual). Distractions can lower pain perception because they divert resources used for pain perception and lower the overall effect pain sensations have on pain perception. To give a very basic example, if you are having a pain in your lower right abdomen but pinch yourself on your left arm, you will feel both pains at a slightly lower level than either pain would be alone. This is partially because of neurological restrictions in pain signaling (which I will not delve into) and partially because of diverted attention. There is only so much attention the brain has; when you spread it out, you have to take it from one place to use it in another.

I have a few basic tenets I follow when brainstorming for effective, reliable, and valuable distractions. The following lists characteristics/qualities that make an activity/behavior a good distraction for me.

  1. Something that calls for a high amount of attention out of pure enjoyment. It should be easy to focus upon and easy to lose oneself in. It should be interesting enough to suck me in.
  2. Something that requires focus on another part of my body, other than what hurts. It requires coordination, practice for muscle memory, and not painful. Exercise is a distraction, but not for super painful days where it could cause more damage than benefit.
  3. Something fulfilling. It may not be particularly enjoyable at that moment, but it is important enough to me that I focus on it out of self interest. Not saying selfishly--think of something that has so much self investment that your incentive to finish it is especially powerful. 

The list alone may not be particularly helpful so I want to give some examples as well. I will try and aim for two each! Obviously, there will be some overlap between them, but there should be some distractions that better represent one quality than another.

For #1, I offer my two best distractions: time with very good friends and games. 
Good friends can make you laugh, smile, cry, whatever, but they grab your attention rather enthusiastically. Playing Harry Potter Scene It with my boyfriend is especially distracting, because we get to laugh and fight over the game and how much bizarre trivia I retain concerning the stories. Talking with friends is easy to lose yourself in and can be a great distraction from the feeling of knives in your gut. It's fun, socializing, and makes me forget.
Additionally, when I am feeling less than social, video games have been a great distraction. There are actually studies that show that video games are an effective method for pain management and lower pain perception, making it beneficial in health care (e.g.,Griffiths, 2005). For me, a game simply has to have a good plot and motivating. Whenever I am having a more than bearable pain day, I retreat to my computer or PlayStation and enjoy some gaming time. One of the great things offered in gaming is the variety of video games available. There are games of varying types, difficulties, and styles for pretty much anyone. I highly recommend it for anyone in pain. 

For #2, excluding exercise, I have music playing and humming. 
My two instruments are piano and guitar. I admit that I am no prodigy in either art, but I do greatly enjoy playing. It is not only incredibly relaxing, but the focus required for my fingers distracts my mind from the pain it is trying to process. Especially when learning a new song, which requires an especially high level of attention. The audio and motor involvement in what I am doing can pull my sensory attention away from the spot that is hurting.
Humming was a distraction I discovered by accident really. I think I was groaning/moaning uncontrollably and it was making the pain even worse. So I started groaning louder but forcing a tune. Then I was humming. And suddenly the pain lessened. Humming, though simple and easy, does require focus to hit the right notes and devout the correct time to each sound. And it uses your diaphragm, lungs, throat, etc., so it took away focus from my lower body. Now, whenever I'm in a lot of pain, I try to play name that tune with my friends. It distracts me from my pain and allows me to disguise my groans. 

For #3, I offer learning and writing. 
I really am a nerd at heart and always enjoy learning something new. I try to spread that thirst into different areas and try different hobbies, different books, different subjects. Even if a text is somewhat dry, I want the information badly enough that I dive right in. I do not lose myself in education in the same way I do recreation, but it is distracting. I want to be knowledgeable badly enough that things that would be boring otherwise call my attention. 
Writing is the most difficult one to explain because it is the most personal. Although my readers here get a glimpse at my site entries that are (I am embarrassed to say) far from polished/perfect, my real passion is stories. And, if anyone has written, they know that story writing in itself can be a painful, difficult, and trying process. Almost as if I am trading one type of suffering for another! But I want so dearly to be a writer that I feel in another place when I work on my stories. It is my goal, my ambition. So that diverts my attention enough to make it through a bad day. 

These are not all my distractions, but I hope this has been interesting and helpful. If anyone has any suggestions for other distractions, I would love to list them along here. Thank you and I hope you have a pain -free day!

***EDIT: I've realized that after writing this and some of the response I have gotten, that I should do an entry purely on the mechanics of pain and how we experience them. I'll try and make it easy to understand/read from a layman's perspective. Knowing how my pain actually happens in my PNS & CNS was a huge benefit for me. I"ll try to pass that along.

Wednesday, May 8, 2013

I Think my Brain takes the Pain the Worst

I was going through one of the more painful aspects of my disease the other day (burst a rather large chocolate cyst) and I was forced into a lot of bed rest and (like it or not) time to reflect. I was a bit put out about it all because the exact day before the event was the best I had felt in a long time. Some new medication was apparently beginning to work and I was tempted to find hope for normalcy. I say tempted because I personally find it dangerous to get too attached to the idea. So, when the next day was a total train wreck, I was upset but only partially surprised.

So I sat (okay, laid down in the fetal position) and thought about my situation and the pain I found myself in. And all I could think of was that, physically speaking, the pain was not that bad. Now, let me clarify this. I am constantly between a 5 and an 11 on the pain scale. I've got tremors shooting down my leg that have routinely led me to contemplate sawing the thing off. When I walk, I feel like I have a machete jabbed into my abdomen that twists with every step (which, for some reason, no one else can see). My physical pain is a tremendous difficulty in my life and I'm not trying to say that it's not there. However, in comparison to my mental pain, it seems like a splinter in my finger at times.

That weekend was a great illustration of why. Despite trying to remove the temptation to find hope in feeling better, I was still devastated when I could not move the next night because of my throbbing body. Being stuck in bed, losing my hobbies, envying and losing my friends, being seen as a downer, that is what truly hurts. The mental pain is what truly gets to me. Fighting an uphill battle takes it out of me and when I slip down the slope it takes a huge toll on my fatigued mentality.

So when I tackle the pain, I do not merely focus on my swollen belly. I focus on my frustrations. My depressing moments. My envy of 'normal twenty-somethings'. My fragile hopes. Trying to groom up happiness and success wherever I find it. Because if I ever ignored the mental toll this disease takes, I would find myself in a deep and dangerous pit.

I think a lot of us focus a little too much on the physical aspects of diseases and disorders. Distracted by the physical limitations, we can ignore the mental ones that follow. And I think recognizing those problems before they become problematic is where you can succeed. For a great illustration, I recently read about how a family kept all their mother's favorite foods on the bottom shelf of the pantry, so that she could reach them from her wheelchair. This arrangement prevented her from having to constantly ask for help with food and gave her a greater enjoyment of independence.

What the handicap keeps you from that is what's frustrating, not the handicap in itself. Being in bed for a day(s) is not so bad, but I get angry when the situation is thrust upon me. So, instead, I try to work on my book, read, draw--do productive things that make me feel like it is convenient rather than a prison sentence. In that mental reconfiguration I cannot change the physical circumstances of my ridiculous body, but I can change my mental reaction. Yes, I would prefer to go hiking and work, but if I can't... I have to find a way to make it work. Otherwise, I am setting myself up for a loss of control and will be completely at the mercy of my disease. I can be miserable or happy. Those choices are still mine!

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About The BedRiddenHead

I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.

This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.

Thank you for stopping by, I wish you strength in your health and happiness.