The Question Of Touch

I have been asked four times in the last two weeks why I tell people "Don't touch me." and, yet, some people do/need to touch me.  "What is the differerence?" they ask.  "Why can those people (nurse, doctor, caregiver) touch you, but not others?"  Well...it's a good question to ask but a difficult one to answer.  I will try to explain it as best I can, bearing in mind I don't fully understand it either.  These are the things of which I am cognizant that would understandably make a difference. 

First of all, because of the risk, there would have to be a need.
For example:  the nurse may need to do wound care treatment.  So she would jokingly say "Assume the position."  Then I would position myself for her to treat my feet and legs. Next, I would brace myself by clinching the sheet tightly (with both hands) to bear the touch.   
Like driving down the road, if your car hits a big bump or a pothole which jolts your body, it could hurt or misalign you.  Whereas, if you knew it was up ahead, you would brace yourself for it and not be hurt.

Gone are the days of hugging people.  No matter how much I said "gentle", I would still get hurt.  So now I get "virtual hugs" from friends and kisses from family. 

I realize I am super frail and being gentle is critical for any touch.  Whether or not this is representative of other RSDers, I don't know.  I have often wondered about that and would welcome any and all responses, to get an assessment of that.

Blessings to all who suffer with this disease and blessings to those who desire to understand,

Jane

Here I Am Again

Here I am again, doing something I never thought I would do, as I'm totally clueless about blogs...but I was recently inspired by my 11 yr. old granddaughter who started one and I knew  if she could do it, so could I.

First of all, I need to state the name of our disease.  Previously, I used the initials RSDS/CRPS, which stands for Reflex Sympathetic Dystrophy Syndrome (newly named Chronic Regional Pain Syndrome).  Throughout the blog, I will generally refer to the disease as RSD.  Secondly, I need to state that I am not a clinician; just a long-time patient, speaking from experience. 

RSD is a neurological condition that effects nerves, joints and tissue.  Injuries travel to (and settle in) the nearest joint, nerve pain creates intense burning,and skin is tissue...which explains why it hurts for people to touch us.  The pain and symptoms we incur are way disproportionate to the actual injury and linger long after the injury should be healed.  The reason for this is that messages are not getting through between the nervous system and the brain; telling it how much to hurt and when to stop hurting.  It's basically a short circuit in the nervous system.  The analogy I often use is that of a car alarm.  When working properly, it is intended to alert you of a break-in but, when not working properly, it goes haywire, beeping incessantly from invalid causes such as someone just walking by.

While I'm trying to be explicit, I want to keep it simple and I don't want the blog to be repetitious of my book.  Hopefully, I can find the right balance.

So consider that kind of pain and factor in disbelief from people in your life.  Though the symptoms are bizarre and the pain is unbelievable, what's needed more than understanding is trust; trust that the patient wouldn't lie or exaggerate their symptoms.  Otherwise, you could end up with a strained relationship that would cause you both  to  suffer and cause the patient to be isolated.  On the flip side, where there's trust or unconditional love, the patient receives needed support and  your union with them is enhanced.

I sincerely hope this blog will be of help to you in some way or other. 

Blessings.

.Jane