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Posted 1/7/2015 12:25 AM (GMT 0)
hey y'all

I'm having trouble with my emotions right now, I feel like nothing I say can make her understand and because she doesn't understand it she acts like it's not there even when I have had to use a roll walker. I'm torn do I try to open dialogue or what. I feel like she judges me for not doing things or not acting like the outward package I present to people.

Does anyone have advice
Posted 1/7/2015 1:39 AM (GMT 0)
No I struggle with my family with this. It's just tough bc they don't understand how anyone can be in pain 24/7 because they aren't. If it was them they would understand. The only thing I could suggest let them go to the dr with u. My dr explained nerve pain to my husband as this. He said what is the worst pain u have ever felt. My husband said a abscessed tooth. My dr replied she is living with a abscessed tooth pain likely 10 x worse 24/7. He told him nerve pain hurts worse than any other pain. It helped my husband to understand. My pain dr asked him he said how long did u last with ur abscessed tooth he said 3 days. My PM dr replied she's lived with this being constant since January. Since then my husband totally gets it. He just got over having an abscessed tooth and had to have it pulled after 3 days bc he could t handle it. Afterwards he said I'm so sorry u hurt everyday. He said because the last 3 days was miserable. So if u have a good PM see if he can help.
Posted 1/7/2015 4:35 AM (GMT 0)
Friends and family can be challenging. People can try to understand what this life is like, but sadly until you are here...well, you know. And so does everyone here. I loved the explanation given to the hubby.
I think sometimes people just cant comprehend what 24/7 is like...day after day. It is daunting to imagine and worse to endure.
I think others insulate themselves by denying or demeaning pain. Its far too scary to look into the abyss that is pain. Others cant help and don't know how to deal with the situation. Or they could just be jerks. .
I would try "I messages" with her.
Sucky as it is, in these situations we have to take the high ground and be understanding. We have to take these opportunities to educate others. Not only on CP but on human compassion.
I get the impression you are young? Maybe she just hasn't lived enough to face the situation you are in.
I hope you find a way to get through this; the pain and sister. I hope you are able to improve your communication skills. Most of all I hope your sister becomes a source of support.
Posted 1/7/2015 11:23 PM (GMT 0)
Daesin I am 28 and my sister is 31. I've lived with this for 10 years and it sux. She thought after my surgery I'd be " all better " 😩 but 1 1/2 years later I'd graduated college and gotten married and undone all the benefits of surgery. I'm a hairdresser more like I was a hairdresser. I worked long hours at a premier Atlanta salon and left only after I was shaking in pain and unable to cut or color. This is when it started with her she just didn't get it, why I was broken.
Posted 1/7/2015 11:48 PM (GMT 0)
Bunnygirl, so sorry that your sister does not understand your situation. It is so common for family & friends to not understand. They are healthy people & it is just difficult for them to accept & relate to. Some family just stay in denial. She assumed after your surgery that you would be as good as new & probably banked on that happening. Maybe if you could sit down with her one on one & talk it might help.

Take care.
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