Quote:
Originally Posted by Buckhorn24
....... We've been told by a couple docs not to bring up the pain, she has to learn to put it out of her mind. She has pain in her back, internals, hands arms, legs. The tears come from the pain.
Really just wanting to get the experiences and thoughts from someone who has lived with amplified pain, what you suggest as to how much we push her to go to school. I know that everyone is different, but we have no way of comprehending what she is feeling.
...... When she does something outside of the house she generally needs to spend the next day in bed dealing with the pain. But then everything we've read says to stay active, even with the extreme pain and we have to help her to live with the pain and live a life, as much as possible.
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I would try to find a doctor who will help her get the pain down to a manageable level so that she CAN get through a few classes at a time.
I STRONGLY disagree with her doctor's advice to not ask her about her pain. That would make me feel very disrespected, like people didn't believe that I was in pain or that it feels as bad as it does.
The good articles and books that I have read advise trying to stay active, but not with the pain being extreme. First there should be treatment to get the pain down to a more reasonable level, THEN the activity level should try to be raised.
I have 2 children. I intended to go with "natural" childbirth for the birth of my oldest son. Not an at home birth in the bathtub, but a hospital birth with no meds. I changed my mind on that once my labor became advanced. Hello epidural ! Now, I'll push this baby out. The next year, when it was time for baby number two, my body knew the drill better, things progressed quicker, I had some intense pain but I could handle it......just until it was time to push. Then I couldn't deal with the pain, but it was too late for pain meds/an epidural. Let's just say that everyone on the L&D floor heard exactly what I thought of that !
If my sister and my husband followed anyone's advice to "not to bring up the pain, she has to learn to put it out of her mind" they would have been instantly excommunicated.
If some well meaning, but misguided, person had told me to "live with the pain and live a life" or "stay active, even with the extreme pain" I would have hit them with whatever I could have reached.
I'm purposely using the example of childbirth, instead of CRPS pain, hoping that you might find it more "accessible" I know you're a parent, but I don't know if your wife had a vaginal birth, C-section, or if you adopted. I guess I'm hoping that it was a vaginal birth, for the point of this example. If she had JUST pushed out your beautiful daughter and you said, "You should be active, exercise will help the uterus contract and help the profuse bleeding stop quicker, let's go for a 5 mile walk !" What would she have said to you ?
I think ignoring the pain, or downplaying, or not acknowledging it is a mistake.
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Sorry, I just ran out of steam dealing with my own pain, so I have no transition from the above to some random thoughts about making it easier for her to go to school.......
I'll go to a store looking like a grub in sweatpants, hair up in a bun, etc but if I go to a family gathering or out with friends I want to look as good/normal/healthy as possible. Dealing with chronic pain, picking out an outfit can seem overwhelming. Taking a quick shower and dressing requires either a short or long acting narcotic. Taking a shower including hair washing and/or leg shaving plus getting dressed requires a combo of BOTH the long and short acting narcotic. I only blow dry my hair and curl it a few times a year, but the efforts that I put into that when I was a teenager would take more pills than I can currently count. Then there's make-up......the list goes on.
I'd talk to your daughter to see if there is anything that you and your wife could do to make it easier for her to get out to school when she does feel like she can. Can a friend come over and line up a weeks worth of outfits so they are ready to go ? Can you afford/would she like to have spa days with waxing to eliminate the need for bending over to shave ? (sorry, I don't even know if she has allodynia) Can someone help with her hair or would a simpler hairstyle work ?
Can you encourage her to try to stretch her day....meaning, if she thinks she's only up to one class, could it be the last of the day and then take her to the mall for an hour or two ? Personally, I like to shop more than I liked to sit in school, BUT if I could go to a class and then shop for 2 hours, then I know that I COULD have gone to 2 or 3 classes instead of just the one. Just she still hang out with her friends ? They can help with offers to get her out of the house or be distractions when she is home.
I've had a few occasions recently where I almost didn't make it out. Too much pain, too much effort to get ready, sooooo tempting to just lay down and cancel my plans. Much medication and effort later when I am out, I'll have one of those brief periods when I am deep in a conversation or laughing at something, then sit back and think, "Ouch, sitting back just pulled on my neck" and then it will hit me.....I had forgotten about my neck for a few minutes. With the right distraction, it is possible to not feel the pain.
The thing is, someone else telling me not to think of my pain, does NOT help ME. It makes me want to injure that person. I think that has to come from within, to notice that when I am distracted by a great movie, a great novel, or a fun time with friends, I am not aware of the pain for brief periods of time. The thing is, I had to get enough other pain management tools in my toolbox (narcotics, anti-inflammatory, heat, ice, topical products, TENS, hot tub, cervical traction, etc) to be able to enjoy those activities. It's also my choice to do something or not. If someone told me what I HAD to do, and that I was EXPECTED to somehow deal with the pain, that would aggravate me.....and my pain.
I know this is tricky because this is a teenager. Most of them would skip school on a regular basis if they could get away with it. It must be hard to respect her reports about limitations because of pain if you ever suspected maybe she just doesn't feel like going vs pain preventing her from being able to push herself.