Elisa Friedlander
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Elisa Friedlander

Decision-Making: A Painful Opportunity

2/25/2016

6 Comments

 
We all make so many choices every day; we're not even aware of many of them. Some are obvious, like choosing what to eat for dinner, whether or not to exercise or which of two fabulous shirts to buy. Others are subtler: instantaneous decisions made all day long, like how to respond in conversation; what size bite to take of that scrumptious dessert; or whether or not to return that flirtatious glance. 

As a person with a disability, decision-making is often about whether or not to move forward with something despite potential, and sometimes likely, consequences. Like anybody else, I occasionally find (or put) myself in situations in which I feel physically or emotionally vulnerable. A self-regulated negotiation takes place for decisions that are automatic for others. I want to do this, yet perhaps I should do that. 

A person who is not in pain will wash his hands without giving it a second thought. For me, a self-proclaimed germ-aware person (I decided that “germaphobe” is too harsh), it’s a no-brainier that I'm going to clean myself. Simple enough? Not really. Extending my arms to the faucet means inviting radiating pain and touching water that might be too cold for my hands, which already feel frostbitten. Even when it's clear what I'm going to do, my brain shifts from autopilot to conscious awareness. Most of the time my thoughts express compassionate messages like, This tends to cause pain, but maybe this time it won't. I'm being careful, I'll be fine. Even if this does hurt, I'll take care of myself afterward. And then there are days when I think, I'm so tired of simple things increasing pain. 

When I guard against increased pain by doing something like putting gloves on, it's a more straightforward process. I can take measures to protect myself from the cold and hyperalgesia with relative ease, and that's a positive feeling. Still, the cognitive part of my brain taps me on the shoulder and asks for a decision. How will I choose to respond to people's stares, remarks and questions about wearing gloves in 80-degree weather?
Picture
Photo by Antony B Courtesy of Wikimedia Commons
For people dealing with pain, choices present on a continual basis. Here's a sampling of mine:                
  • I could use my cane to give my lower limbs some assistance or walk without it and save my hands and upper body from getting inflamed.
  • I could move forward with my social plans and lift my spirit or cancel and prevent my flair-up from potentially getting worse.
  • I could write when my brain feels foggy or do something mindless, knowing that yet another day has gone by without engaging in my passion.
  • I could go to that crowded event where I'll probably have a good time, but I risk somebody knocking into me and triggering a pain response that lasts far beyond the moment.
  • I could take a bath to soothe my muscles or preserve the energy it takes getting in and out of the tub.
  • I could get a ride from a Lyft driver; it will most likely be a positive experience. Still, I might not choose to risk my cervical spine getting jarred as a result of the driver forgetting or dismissing my request to drive cautiously over bumps.
  • I could use my walking poles in a location such as a theatre to help with balance or go without them and avoid stares.
  • I could open up to a new friend about my pain, but I’ll risk receiving unsolicited advice and demeaning or blaming statements.
  • I could try yet more invasive treatments and either get some relief or worsen my condition.
  • I could take medication or continue to feel “this” way and not have to deal with the awful side effects.
  • I could exercise and feel good or potentially get flared-up.
  • I could sit in response to my leg and foot pain or stand and ease my back pain.
  • I could use my wheelchair and rest my body or move around, inflaming my nerves but benefiting my joints.
  • I could have that surgery and potentially feel better or risk an increase in pain and ​spreading of the CRPS.

Recognizing that there's often a middle ground to these choices (I could use my cane during part of the event and fold it up after a while), decision-making is still involved.


So, what to do to avoid living in that tiresome “If...then” space? I believe that presuming safety and relying on our experience of self-care is the way to go. Caution is sometimes rational and even helpful, but if that was my default mode, I would rarely leave the house and I would never move my body. I wouldn't engage in conversation or take risks. I certainly wouldn't write.

I'm having trouble deciding how to conclude, so I'll just say this:

Being a positive thinker, my nature tends to err on the side of opportunity, and I hope that others in pain can see it this way too. I get to take responsibility for my life and make these and other decisions; I don't necessarily have to weigh my risks and benefits. I do find it helpful, however, to keep in mind a certain piece of wisdom from the song “Freewill” by Rush. "If you choose not to decide you still have made a choice."

Thank you for choosing to read this. 




6 Comments
Abby C.
3/8/2016 09:33:34 am

Yes, each decision has a consequence. Pain and illness really keep teaching that lesson. Thanks for this detailed accounting and reckoning, and your great thoughts!

Reply
Elisa Friedlander
3/21/2016 11:40:35 pm

Hi Abby,
Yes, I keep learning that lesson - not sure what grade I'm in anymore! Thank you so much for your comment!

Reply
Tammie
3/15/2016 05:08:35 am

I was diagnosed with RSD after an auto accident two years ago. It is so nice to find a place where RSD patients can share. It has been a nightmare dealing with this disorder and all the bizarre symptoms that come with it. After awhile you stop talking to friends and family about it you begin to feel all alone and isolated. Dealing with the pain, the way my feet look most of the time, the fatigue and depression and the absolute worse for me was my hair falling out, can lead to isolation. I have bald areas especially around my hairline. Even the hair on my body is gone, although I never liked shaving anyway. LOL It lifts my spirits knowing there are others suffering from RSD that can understand and empathize with us at some level. And maybe I won't feel like I am going crazy and imagining some of these symptoms.

Thanks for letting me share my story,
Tammie

Reply
Elisa Friedlander
3/21/2016 11:38:31 pm

Hi Tammy,
Sorry to hear you struggle with the bizarre symptoms of crps. Thanks for your comment and your humor! I find that - aside from connecting with others- humor is often what makes it possible to cope! I hope you are also able to get support in your area. rsds.org and rsdhope.org are great resources if you need help finding a group! Thanks again for sharing!

Reply
Sandra N. Gordon
5/20/2016 01:41:56 pm

Thank you for a sharing Website for those experiencing a Rare Disease. To learn that you are not alone by finding out there is someone else who knows what I am feeling, is a gift of highest quality! Thank you so much!

Reply
Carol
10/4/2016 11:08:19 pm

Hi Elisa, I have struggled with CRPS/RSD for over 5 years. I had broken my ankle in a motorcycle accident. I was 48 years old and never had a broken bone before. I was going through Physical Therapy and the therapist advised me to look up RSDS on the Internet for he was not authorized to advise me of what my disease that I may have. I contacted my Ortho Surgeron, whom intern agreed and sent me to a neurologist, who diagnosed me with RSDS in 2011. Like others my family did not understand my condition. I have a life change from working 35 years of my life to disabled. I also have been through several medications, different techniques. I am soon to go to court for the motorcycle accident inwhich I was the driver and ran over the dog that was the dog owner's fault. (Pit bull was not on a leash inside city limits) I have a good attorney, but I want the best and I want the jury and the dog owner and her attorney's and the dog owner's insurance company to understand my life change and how The accident caused my RSDS and as much as RSDS/CRPS is explained in detail. I panic when I see a motorcyclist and a dog chasing after the motorcyclist.

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