Touch – It’s Complex With Allodynia

hugsThe language of touch.  It’s human.  It’s a means of expression that reaches past the bounds of audible and visual language, affecting emotions, hormones (cortisol, oxytocin, etc), relationships, our sense of safety or danger, and so much more.  As soon as we are born, mothers use gentle touches to console their babies (actually, before they are born mothers do the same by stroking their bellies to calm the little gymnast so mommy can sleep), and children soon learn to explore their world and human interactions through touch with mothers quickly providing their own corrective touch to signal “danger” (or “you better behave!” in the grocery store) without words.  When expressing joy and strong emotional relief, nothing quite matches the intensity of sharing a jumping-hug or high fives – those videos of soldiers coming home are powerful, aren’t they?  When consoling or sharing grief, we may break out of our Westernized no-touch stigma to deliver a timely hug, a hand on our friend’s shoulder or knee, sometimes literally a shoulder to cry on and an extra kleenex.  Of course when expressing love or relational intimacy, touch may add a few notches to its belt from cuddles to hand-holding, kissing, and sex.

Complex Regional Pain Syndrome claims allodynia as one of its hallmark symptoms.  Allodynia is when touch hurts but shouldn’t – putting on a soft sock, walking on a hardwood floor, pressing lightly on the leg with a finger, a cool breeze blowing on the skin.  Imagine having a very severe sunburn and putting on a t-shirt or taking a warm shower and how painful that would be.  Now imagine you feel that same type of pain from putting on your shirt or taking a warm shower, but you have no sunburn.  This is allodynia, and I’ve been “blessed” with static mechanical, dynamic mechanical, and thermal subtypes of allodynia.  

I happen to be an extremely touchy type of person, and if I had my druthers and less fear of gluten I’d likely run around and hug every non-creepy human I saw (and a few telephone poles while I was at it).  (You think I’m joking?  Ask my friends!)  I’m just built that way.  I feel that I understand people on a much deeper level when I’ve hugged them and that I too can express so many things I cannot say with words when I give a hug or some other type of communicative touch.  I can tell immediately how a friend is really doing by exchanging touch and noting their response.  In my world, touch is how I tell you I genuinely love, accept, or appreciate you.

my worst nightmare
my worst nightmare

Allodynia has caused me to think a lot about the meaning of touch in my daily life and in my relationships.  My legs vehemently disagree with my touchy nature and send off strong “NO TOUCHIE!” vibes.  There’s a bubble around my legs that is visible to only me.  Anything that enters that protective bubble of security is seen as a threat because it may inadvertently touch my legs, causing pain.  My hackles go up, my stress response sky-rockets, when my bubble has been infiltrated by an invader, even if that “invader” is a friend or loved one with whom I would gladly and readily share positive physical contact.

Today I bought a new pair of shoes from my orthotist/prosthetist and it took some time of adjusting them and wearing them to determine if they would work for me.  Several times my orthotist bent down to assist me in fitting my shoes.  Each time, his hands infiltrated my bubble I felt that fight-or-flight instinct overtake my senses as my muscle became stiff.  Perhaps he noticed, as he backed off each time before making contact, as if remembering my previous warnings about touching my legs.  The memory of the last time he touched my legs came to the forefront of my mind – it was quite a painful encounter and he felt badly for hurting me with (what I assume was actually) a gentle touch.  That was in January, but I still remembered it vividly.  Any time a person touches and it produces pain, my mind logs down the encounter with that person’s mug shot, as if to file away the “offenders” and avoid future unintentional victimization.

This wasn’t in my plan.  Fear of touch significantly cramps my style.  And though I write about it openly here, I don’t want the majority of my friends to know how much gentle touches hurt because I love my friends and I want to encourage that healthy type of touch in our friendships, given how important it is to me in the process of communication.  I don’t want friends to back off from expressing themselves through touch because they are aware of my issues.  I also don’t want them to think they’re causing me pain or anxiety, and this in itself is a fairly heavy burden to hide.

I don’t want to appear fragile.  Even if I am.

freehugOkay, let’s keep it real.  Alright?  I’m single and I live alone.  (Yeah, here we go; you huggy singles out there know where this is headed.)  I get lonely.  There’s NOBODY TO HUG.  I don’t even have a dog to get those wet slobbers from and to pet and hug and play tug.  Nobody with whom to swap some displays of personal affection.  I’m not talking anything beyond the G-rated stuff…just that simple human physical contact I’ve described along the way here.  I get my “hug tank” filled at church primarily.

When that’s not enough, I use my deep pressure vest which I call my “hug vest” because it calms me when my senses are on overdrive from ADHD.  Or I will grab a bunch of heavy books and sit in bed with the heavy books on my lap (NOT on my lower legs!), which I often did during college to help me focus.  I find ways to appropriately give my body the deep proprioception it craves.  If I could jump or run, I would, but I can’t, so I have to figure it out with more sedentary means.  If the weather is agreeable, I go for a walk/roll with my wheelchair to work my arm and trunk muscles hard, or I scrub something clean with a sponge and lots of elbow grease.  Laying on a hard floor and stretching my muscles helps.  If the weather is not cooperating, I have taken a blanket before and rolled myself up really tight inside it.  The squeeze feels good, kinda like a hug.

So now I wonder if you think I’m a freak.  🙂  Oh well.  I figure at least I’ve found healthy, though a tad unconventional/creative, ways to meet my own needs which don’t include hugging utility poles and getting splinters which could flare/spread my CRPS!

A friend of mine was visiting at my home a few days ago.  Though we weren’t talking about my health problems at the time, I had accidentally touched my own leg at one point and I was unable to hide my expression of pain.  With sympathetic concern in her voice, she asked me how I would manage to have intimate relations when married.  I have, naturally, questioned this myself, though hearing it out loud always adds a new weight to the consideration, especially when an answer is desired.  I was slightly taken aback by the personal nature of the question, which came unexpectedly, but not offended because I trusted my friend’s intentions.  I kept my answer pretty simple.  “I don’t know.  All I know is that if he loves me enough to marry me in the first place despite my health issues, he’ll love me enough to be patient with me and we’ll work out the details.  I don’t need to be concerned about it now.  I’ll just let myself be concerned about the problems I have to manage today, which are MORE THAN ENOUGH to keep me occupied.  The rest will come in time.”

Touch.  It’s taken on so much more complexity to me than it ever had before, though it is inherently complex to begin with.  I do hope that one day the allodynia may decrease enough that my fears of touch won’t be as emotionally crippling.  In the meantime, I’ll continue to try and hide my pain and stress when a friend infiltrates my bubble of security because I do honestly still want to communicate through touch…it’s just….complicated.

By the way, if you haven’t figured out this hugging thing yet, Wikki How can help you:

Additionally, if you wanna try it out via your own DIY “FREE HUGS” sign, be ready for the police to object.  But get your 1960’s free love campaign revived and do it anyways!


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