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Originally Posted by Buckhorn24
Thanks for all your thoughts and concern. We've already seen multiple docs, gone to Pittsurgh, gone through the whole schooling routine, have a 504, homebound that delivers work, but the problem is getting behind in the normal school work. Online schooling is not good, pretty outdated tech and materials, did it last year. Trying to work it out so that she starts going to 1 or 2 classes and works her way up to a full day. 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.
She says she not able to go to school for more than one period. 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.
Next step may be the Mayo, anyone have experience with it?
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When it comes to not talking about the pain...I think there are a couple of things to consider (and I apologize...this got a lot longer than I thought it would when I started typing).
One...as everyone has said...you cannot put the pain out of your mind...it doesn't work like that. It's far too intense and it never leaves you. The BEST I can hope for is that I can find things to help distract me from that pain...which I am only able to do after discovering a bunch of coping mechanisms for dealing with it. I work full time at a very physical job...but I had to take over a year off where I was stuck in a wheel chair for much of that time and then it too me several months after being back at work to really get to a point where I could handle the full scope of my job. And even with all that...I still have very bad days where nothing...NOTHING...can distract me from the pain.
Your daughter doesn't need to put the pain out of her mind...she needs to learn to cope with the pain. Until she can cope with it and learn to function despite the pain...trying to do anything else will be useless. And in order to learn to cope with it, figure out what triggers it, what helps it, etc...she needs to TALK about it honestly without someone telling her to toughen up or put it out of her head. I've had people say that to me and all it does is make me feel like they don't understand and that they don't believe me when I tell them just how bad it is.
The second thing...and many may disagree with me here...but my personal experience is that I DO need to speak up when I am in pain but I DON'T want people to treat me like I am broken. I am still a person with all the same desires and needs I had before. I want to go to work. I actually love my job and take great pride in doing it well...so don't tell me I can't/shouldn't do something just because it will cause me pain. If I didn't do things that caused me pain then I wouldn't do ANYTHING...but it's got to be my choice about what is worth it. Because to do anything is a trade off...a balancing act between what I want to do (that will make me happy and bring me joy) vs the amount of pain it will cost me to do it.
Can you imagine every single day of your life...having to weigh those two things for every single thing that you do?
And yet...it is what it is and the worst thing for me when I have to deal with this very personal struggle (and no one can help a person in pain figure out that balance...they have to do it themselves) is when I have someone tip toeing around me...asking me constantly if I am okay, insisting on doing things for me when I haven't asked, treating me like I am totally useless (not in a mean way...but in a way that makes me feel that way because they don't think that I can do anything for myself), etc.
This is why you have to talk about the pain...openly and honestly. Your daughter needs to feel safe and secure...knowing she can tell you what she needs and without you making assumptions about what she can and cannot handle. Because only SHE knows the answers when it comes to what she can handle. She will need a supportive environment and to be surrounded by people who don't doubt her.
School at this point seems like it is too much coupled with the pain she is suffering. The reason I mentioned home schooling or online schooling is that this would give her the flexibility to work the school around her medical needs. She shouldn't give up on trying to find the answers and to get treatment.
If it is RSD/CRPS...then you are right that she needs to keep moving as much as possible...but that doesn't mean go about life as you used to. You need to do the RIGHT kind of movement and therapy. Trying to continue normal activities will just make her push too hard and then end up bed bound for a day or more. Constant movement is really the key...to do exercises throughout the day every day. But these need to be focused exercises...ones that are focused on her gaining/maintaining function long term. If you can find a good physical therapist who can arm her with these exercises to do at home every day...that will be huge. Then she needs to commit to do these things every single day. I used to spread mine out throughout the day and had a checklist to make sure I completed them all. On bad days when I was unable to complete the more advanced exercises...I would revert back to the easier exercises that I did when I was wheel chair bound so that I didn't miss a day. Doing this was a full time job by itself...and that's why I needed to be off work while I did it. There was no way I could have focused on my medical needs at the time, learning to walk again and cope with the pain, while also trying to continue working. If I could have done any of my work from home...I would have jumped on that...because I hate down time and I was miserable during my time off work not only because of the pain but also because of the boredom. When you are bored...there really is NO distraction from the pain. So if I had schooling to do during that down time...I can see where that would have been perfect for me.
Again...I am only talking about my personal experiences and what I NEED or NEEDED when I was going through a period like your daughter is in now. I have said many times that my family and friends don't really "get it"...but I understand that they can't. When you don't experience this sort of pain day in and day out...you just can't comprehend what it is like. You can sympathize and be supportive and try to be understanding...but you can't KNOW what your daughter is going through.
She needs to be a key player in making these decisions about her future and about what she is able to handle TODAY. While getting behind is school may not be ideal...it might be the best option for her long term to wait until she is physically and mentally able to handle it. Only you guys can decide that...but your daughter needs to be a part of that conversation. She also needs to feel that she is really free to tell you what she can and cannot handle and that you will believe her. Be careful not to pressure her to try something that she doesn't think she can handle right now...it will end badly. You might not even know you are doing it either...which is why you need to be careful. I have zero doubt that you are motivated to get her to go to school because you love her and want what is best for her...that is clearly the case or you would not be here asking your questions.
I wish you and your family the best of luck in this difficult time and hope that you can come to a decision that will work out for your daughter. Take care.