Lately I've been knee deep in books that focus on chronic illness. The books range from addressing living joyfully to managing expectations for patients and caregivers alike. Much of the time I find myself skimming over large portions of the book because I'm not "new" to the chronic illness world, therefore, things like "how to tell your family and friends" doesn't apply at this juncture. Important aspects for newly diagnosed for sure but not after one's walk the road for nearly 31 years!
However, there have been a few reoccurring topics in nearly all the books that have stricken a cord with me. So much so that I've busted out the highlighter and pen to make notes in the margins.
For example, the latest notion that I'm analysing in my own life is the idea that those who have lived along time with a chronic illness develop unconsciously negative touch perceptions. It makes sense. If you've endured countless medical procedures recoiling from touch can develop. Which if left unaddressed into adulthood or long periods of time can have a negative affect.
The amount of stress the body endures during many medical procedure I think is grossly under-addressed. Sure, the doctor or surgeon explains the procedure but the actual physical process the body goes thru during the procedure is rarely talked about. For me, having a PICC line placed is extremely stressful. I sweat, I cry, my muscles are in a state of constant flexing for the duration of the procedure. This is probably pretty mild compared to other more invasive procedures. But the brain has to react to this stress and it can be difficult to reverse the brain's response to recognize that this is not permanent, particularly if its a procedure that is frequent.
Having a negative touch perception makes it hard to connect with friends and family who might want to hold your hand to pray or give a welcoming hug. It can also carryover into ones sex live. Touch no longer becomes pleasurable but rather a precursor to extreme stress or pain.
I think in my earlier years I was just the opposite of recoiling. I was over the top; eager to hug, hold hands or walk arm in arm. But now as an adult I have switched gears, without even realizing it. Maybe because over the years my brain has connected that stress or pain as a permanent state due to the frequency.
I hug way less, I have a hard time accepting a hug from B without asking things like "what was that for?" thinking that touch is associated with the giver wanting or needing something from me. This plays an unwelcome role in our marriage at times. It has caused a bit of confusion at times between B and I. It leaves B thinking something is wrong with him or that he has upset me in some way. Not exactly the perfect recipe for intimacy.
I don't think I'm completely closed off to touch but rather I seem to have episodes where I recoil. As I've thought about this the episodes seem to happen after a round of IV's or after a stay in the hospital. It takes me a little while to warm back up to the idea of being touched.
In all this thinking and realizing I wonder what I could do during those times when touch largely is painful to keep me from focusing on the negative aspects of touch and redirect it to the positive. I wonder if any of the following would work:
However, there have been a few reoccurring topics in nearly all the books that have stricken a cord with me. So much so that I've busted out the highlighter and pen to make notes in the margins.
For example, the latest notion that I'm analysing in my own life is the idea that those who have lived along time with a chronic illness develop unconsciously negative touch perceptions. It makes sense. If you've endured countless medical procedures recoiling from touch can develop. Which if left unaddressed into adulthood or long periods of time can have a negative affect.
The amount of stress the body endures during many medical procedure I think is grossly under-addressed. Sure, the doctor or surgeon explains the procedure but the actual physical process the body goes thru during the procedure is rarely talked about. For me, having a PICC line placed is extremely stressful. I sweat, I cry, my muscles are in a state of constant flexing for the duration of the procedure. This is probably pretty mild compared to other more invasive procedures. But the brain has to react to this stress and it can be difficult to reverse the brain's response to recognize that this is not permanent, particularly if its a procedure that is frequent.
Having a negative touch perception makes it hard to connect with friends and family who might want to hold your hand to pray or give a welcoming hug. It can also carryover into ones sex live. Touch no longer becomes pleasurable but rather a precursor to extreme stress or pain.
I think in my earlier years I was just the opposite of recoiling. I was over the top; eager to hug, hold hands or walk arm in arm. But now as an adult I have switched gears, without even realizing it. Maybe because over the years my brain has connected that stress or pain as a permanent state due to the frequency.
I hug way less, I have a hard time accepting a hug from B without asking things like "what was that for?" thinking that touch is associated with the giver wanting or needing something from me. This plays an unwelcome role in our marriage at times. It has caused a bit of confusion at times between B and I. It leaves B thinking something is wrong with him or that he has upset me in some way. Not exactly the perfect recipe for intimacy.
I don't think I'm completely closed off to touch but rather I seem to have episodes where I recoil. As I've thought about this the episodes seem to happen after a round of IV's or after a stay in the hospital. It takes me a little while to warm back up to the idea of being touched.
In all this thinking and realizing I wonder what I could do during those times when touch largely is painful to keep me from focusing on the negative aspects of touch and redirect it to the positive. I wonder if any of the following would work:
- Shake hands with the person before they draw my blood
- Have B rub my back immediately after a PICC line is placed
- Allow someone to comb my hair or braid it while in the hospital (most women LOVE having their heads massaged)
- Have a loved one paint my toe nails or give a little foot massage; this could also help when I'm having joint pain.
Everything I have read uses pleasurable things to redirect the brain. To help connect pleasure with touch. All the things in the list above are ways that touch is relaxing, inviting, loving, caring and pleasurable to me.
Anyone else have a similar experience?
Anyone else have a similar experience?
~Doodlin'
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