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
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
This made me think of our first meeting. It is all such a mystery and you are so strong. Thank you for sharing so that others with this can better understand their own experiences and the rest if us can better understand and be better friends. Big virtual hug coming your way.
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