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A Not So Touchy Situation

I've written a lot about touch and the challenges it brings when dealing with chronic pain and, more specifically, Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. The issue of touch can get pretty (excuse the expression), touchy. On one hand, it's really isolating to never be touched. We can communicate a lot through the simple shake of a hand, hug or pat on the shoulder. During Guide Dog training five years ago when I trained with Julio, I realized how much I relied on hugging my parents good night and hugging my friends at school and church when I spent a month with little if any physical contact of that type.

That said, with RSDS/CRPS, things get tricky. As the sensitivity spreads up my leg (now into my hip), I constantly find that touch is very painful. Think about it, how many times do you pat someone's knee, steady yourself on their leg or accidently bump someone gently but unintentionally? It's not a mallicious act, I don't know anyone who thinks to themselves I'm going to go around and touch people to cause them pain. In fact, if you don't know me well, or don't understand my type of pain and nervous system issues, you are wondering why I'm even writing about touch, again.

In RSD, there are several things which go wrong and several types of symptoms someone with the disease can experience. Only a few of them are relevant here. The most common symptom is pain. It's most commonly described as a burning pain, although for some of us, it's a cold burning pain, maybe like the pain of grabbing a bunch of snow with no hand protection. For many of us, the next symptom is sensitivity. I'm sensitive to touch, pressure, texxtures, cold and sound (or the vibrations caused by sound). This symptom is known as
it's a sensitivity to something that is not normally painful. For me, this includes putting on my socks, pants and shoes as well as touch. Even a light brush with the finger is painful. Before I became ill from CRPS/RSDS, I would have thought this was crazy. In fact, I didn't report the symptom until a doctor asked me and even then, I was extremely hesitant until the doctor explained that it's not my fault that this happens.

So anyway, now that I have this sensitivity to touch, I've been forced to figure out how to deal with it. For most of the time I've had CRPS/RSDS, I have felt uncomfortable telling people that their touch hurts. It's an odd symptom and I knew that people weren't trying to cause me pain. I wrote about the problem of painful touch, I told people about it when they asked about my pain but I never told people they were causing me pain. My friends and parents knew and often I'd have someone who knew about the touch issue sit on my left side to protect me. My friends and parents were also good about helping me out with the problem when it happened. They often warned people or even stopped them from touching my leg if they saw it happening. But because I have a hard time communicating when I'm in pain as it's happening, I rarely said anything myself.

That is, until this summer. At one point during convention, someone touched my leg. I knew that they'd simply forgotten about the pain touch causes me, but my relationship with this person is strong enough that I can simply ask them not to do that and it's okay. So I simply asked my friend not to touch me there again. The sky didn't fall down. The next week when I was receiving the Ketamine treatments, everyone was so good about not touching my leg without warning that it reinforced my new self-advocacy. Over the last month, I've been working on setting physical boundaries. I've worked at communicating with others so they know what hurts and what doesn't.

I think people feel bad when I explain that what they've done causes pain, but so far, everyone has gotten over it. I've also noticed a paridoxical response. People are more willing to touch me in other ways, giving a hug, shaking a hand. I think knowing what they can do and can't do helps. If they're not sure, they just ask. In a way, setting a clearer boundary in a respectful, non-threatening way has taken down barriers I wasn't even aware of. As school starts up again, I'm going to work on setting those healthy, respectful boundaries.


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Sep. 7th, 2009 10:51 am (UTC)
Good for you! :)
Hey, as the subject line above says, good for you on starting to communicate with people regarding your pain. :) I can understand it's difficult, but I'm glad you're starting. Sending virtual hugs your way, and continuing to pray for you. Mark
Sep. 8th, 2009 04:14 am (UTC)
Re: Good for you! :)
Thank you, as always, for your support and encouragement as I try to make these small, but important, changes. I appreciate it a lot.

I've been off messenger for a while because my MSI Wind crashed a few weeks ago and I'm still getting my programs together I haven't been able to install Messenger yet. I only today installed Adobe Reader, and now that I want music to unwind to, I'm downloading Winamp. Messenger could be next and we'll be able to have our enjoyable talks again.

I hope you are doing well and that life is good!
Sep. 8th, 2009 10:48 am (UTC)
Re: Good for you! :)
Coolness! :) I'm sure you'll have it up and running soon. and thanks for replying. :) It's one of those things that takes a lot of time, but it's a good feeling when you've got everything set up so you can use it again fully.
Sep. 8th, 2009 10:49 am (UTC)
Re: Good for you! :)
And just so you know, I forgot to log in, so that last comment was me. :)
Sep. 7th, 2009 09:33 pm (UTC)
I'm really glad you're finding ways to communicate that to people. Also, thank you for sharing.
Take care, and good luck in starting back to school. Are you almost done?
Sep. 8th, 2009 01:44 am (UTC)
Thanks for your comment and encouragement. I'm hoping this will be my last year in my bacholer's degree in social work. That said, I'm currently a super senior because my health has thrown so many obstacles in my path and I've had to take fewer courses than most of my peers. So, I'm really hesitant to say that I'll for sure be done at the end of this school year.

I hope you're doing well, I'll admit I'm way behind on my blog and Twitter reading with no hope of catching up.
Sep. 10th, 2009 04:56 am (UTC)
Thank you for explaining this in detail, both medical and social/personal. RSDS/CRPS is something that, like many chronic conditions has aspects that are known by the people who have the condition but not considered in the realm of what is socially acceptable to talk about. I am not glad that it is has spread, but I am glad that you are able to talk about it - it is interesting how an impairment/disability requires US to be more assertive.

I hope that setting boundries results in less pain on a day to day level. Thank you again for such clear writing, I am able to understand.
Sep. 10th, 2009 04:56 am (UTC)
Ack, that's me, Elizabeth McClung!
Sep. 10th, 2009 05:51 am (UTC)
Thank you for reading! I am really glad you found the post helpful. I'm still getting used to this whole boundaries thing, bso time will tell how much setting will help me. I think it's a good goal to start with practicing setting boundaries.

I need to hed to bed, I'm exhausted, but there's always more stuff I need to do... I want you to know, before I head off to bed, that it means a lot to have you complement my writing

Take care, I wish I could wave a magic wand and help you feel better
Sep. 28th, 2009 03:18 am (UTC)
I'm glad that setting the boundaries inevitably helps you to be in better control of what is and is not happening to you. I didn't know that the CRPS had spread. I'm behind somewhat on LJs, so it's possible I've missed something, but still... I'm praying for some sort of ... is stability the right word? ... that it doesn't spread anymore than it already has.

Thank you for explaining what helps, and doing such in a clear, understandable. I have always enjoyed your writing style, but more than that, it makes sense, at least as much sense as is possible from my vantage point.

*gentle hugs*
Sep. 28th, 2009 10:54 am (UTC)
Spread, touch and prayers
Thank you for praying, it's really amazing to think that so many people do pray about this. I am not actually sure if I'd written about the spread much. It's usually one of those friends locked filters which I think you should have access to. I post those things there because I'm usually so upset and it feels safer thinking that Google will see some of thos upset posts. And don't be too worried about being behind, I've had a rough patch posting lately.
Dec. 19th, 2009 08:27 pm (UTC)
Thank you for sharing this, i am really very much impressed!

IUC 5100
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