Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
I had an RSD flare last night, one that is getting worse instead of better. I have NO idea why, but then who can really explain RSD? I did take my 2 year old to Chuck E Cheese yesterday for the 1st time with a friend, but usually stuff like that just makes it a bit higher on the pain scale for a few hours, not a full blown flare.
It's been awhile, and I can't recall if I've had one in front of my son since he's gotten bigger. He noticed my ugly blue/black foot and the sweat, and seemed a bit scared. I tried to explain that Mommy's bad foot changed color, but he didn't really understand. I mean, he's 2. What did I expect?
DH is home today and thank God is taking over, b/c I'm just embarrassed that my son see me in so much pain. I did try, but I can't get up to help him put a DVD in or lift his "zoo" down from the shelf. He is totally getting it, too! I can tell by the look on his face that he's confused. He's a late talker, but he can talk. He finally pointed at me foot and said "Lala, Ouch!" (He calls me Lala, we don't know why, LOL!)
I get tired easily during a flare- NO idea why- extra pain shouldn't make me tired, should it? Anyway, we spent time together but when he tried to come hug me, like a total 2 year old BOY, he ran at me and threw himself onto my lap. My foot was grazed, just grazed, and it hurt, BAD. So Jaden's hugging and kissing my cheek, and I'm trying not to cry. He's too young to get it. I had tears in my eyes but hid them well. I had my DH come take him and J just didn't understand. He cried for me and I'm crying in pain and my DH is just shaking his head. But at least J didn't see me cry.
Thank God it's only 1 child and I don't have to worry about other people in the house. But how do you stay positive in front of people when you have a flare up? Now I'm up in bed and J is wondering why. I feel like a crap mother. Forgive me but that is the word I have to use.
Adding to the pressure is that I have no idea how long the flare will last. I also am having severe muscle spasms in my back and scapulas. Does the whole body have to go at once?
After watching my mom die of cancer, I feel like I shouldn't even complain. After reading about people who have RSD and other CP diseases and NO meds, I feel like I should just shut up. But when it involves my kid, it's hard. I want him to grow up knowing I have a bad foot and know the truth, but also know that I work and I raised him, etc. But now I fear his big memory will be of seeing my ugly blue foot and being scared.
Sorry- just had to vent a bit. I'm confused, in pain, and wondering if I will be able to sleep. I HATE that this happens! I had planned a quiet day but not sitting on my butt all day! Then again, maybe it will help end the flare up?
I just don't know. I'm tired of hiding it from family but I feel like the more they know, they more they'll judge. I did finally tell my friend about the RSD and she was wonderful. But I didn't go into detail about meds, etc.
She is the one who sprained her knee but didn't get so much as an aspirin from the doc she saw today. I told her that's what happens now.
Family is different though. And even the ones I told (Brother, Father) never remember what I have. Why are there so many problems with CP? And why is it so hard to explain? I'm so tired of it all. Maybe I should hire a plane to fly a message in the sky so none of them forget it? Or maybe I should just leave it all be. After 15 years only a few people even know. All I really care about is my son now. How do I protect him from this?
Thanks for letting me vent. Or rant. Whichever this was. :)
It's been awhile, and I can't recall if I've had one in front of my son since he's gotten bigger. He noticed my ugly blue/black foot and the sweat, and seemed a bit scared. I tried to explain that Mommy's bad foot changed color, but he didn't really understand. I mean, he's 2. What did I expect?
DH is home today and thank God is taking over, b/c I'm just embarrassed that my son see me in so much pain. I did try, but I can't get up to help him put a DVD in or lift his "zoo" down from the shelf. He is totally getting it, too! I can tell by the look on his face that he's confused. He's a late talker, but he can talk. He finally pointed at me foot and said "Lala, Ouch!" (He calls me Lala, we don't know why, LOL!)
I get tired easily during a flare- NO idea why- extra pain shouldn't make me tired, should it? Anyway, we spent time together but when he tried to come hug me, like a total 2 year old BOY, he ran at me and threw himself onto my lap. My foot was grazed, just grazed, and it hurt, BAD. So Jaden's hugging and kissing my cheek, and I'm trying not to cry. He's too young to get it. I had tears in my eyes but hid them well. I had my DH come take him and J just didn't understand. He cried for me and I'm crying in pain and my DH is just shaking his head. But at least J didn't see me cry.
Thank God it's only 1 child and I don't have to worry about other people in the house. But how do you stay positive in front of people when you have a flare up? Now I'm up in bed and J is wondering why. I feel like a crap mother. Forgive me but that is the word I have to use.
Adding to the pressure is that I have no idea how long the flare will last. I also am having severe muscle spasms in my back and scapulas. Does the whole body have to go at once?
After watching my mom die of cancer, I feel like I shouldn't even complain. After reading about people who have RSD and other CP diseases and NO meds, I feel like I should just shut up. But when it involves my kid, it's hard. I want him to grow up knowing I have a bad foot and know the truth, but also know that I work and I raised him, etc. But now I fear his big memory will be of seeing my ugly blue foot and being scared.
Sorry- just had to vent a bit. I'm confused, in pain, and wondering if I will be able to sleep. I HATE that this happens! I had planned a quiet day but not sitting on my butt all day! Then again, maybe it will help end the flare up?
I just don't know. I'm tired of hiding it from family but I feel like the more they know, they more they'll judge. I did finally tell my friend about the RSD and she was wonderful. But I didn't go into detail about meds, etc.
She is the one who sprained her knee but didn't get so much as an aspirin from the doc she saw today. I told her that's what happens now.
Family is different though. And even the ones I told (Brother, Father) never remember what I have. Why are there so many problems with CP? And why is it so hard to explain? I'm so tired of it all. Maybe I should hire a plane to fly a message in the sky so none of them forget it? Or maybe I should just leave it all be. After 15 years only a few people even know. All I really care about is my son now. How do I protect him from this?
Thanks for letting me vent. Or rant. Whichever this was. :)
Didn't want you to think you're going unheard....
I do hear you...am listening...I am just sooo yuck at the moment...
Would you bump this tomorrow so I remember to reply?
Ease up on yourself.........hugs.....jc..
Even at 2 your little guy is going to be picking up on the elephant in the room. Kids are so perceptive and it's ok to begin giving simple information. I think it is good for the entire family that way no one feels like they are keeping a big secret. Plus, your child needs to know how to behave around you. Gentle hugs are fine crashing one's not so much. Hugs, Cathy
No matter how you try to keep it from them, they know. I can't imagine how hard it is to bite back the tears.
I'm glad you vented. I have notied my emotions are raw during a flare.
I certainly hope you feel better. This too shall pass.
I totally understand that people are going to bed, etc. I appreciate the posts all the same. And Heather- I totally get what you're saying. That's exactly how I feel- RAW! My emotions are getting the best of me tonight. I can't get comfortable, my eyes are bad, and I'm deep breathing to try and help it. But RAW IS the world.
Cathy- you're right- he needs to learn that jumping on Mommy isn't right. It's just difficult for a 2 year old boy to understand that playing around with Daddy and the sitter and playing around with Mommy are 2 different things. As much as I don't want to be the boring one, he will learn to not be so rough. He's actually a snuggler and not rough, but he's been around another little boy lately so we're seeing some wrestling type behavior.
Jaden is such a good kid. He loves nothing more than to sit on my lap and cuddle, and he gives kisses for no reason, just to make you feel good. He's just such a good kid. I just wish I could give him 100% all the time. As he grows and understands things, he will understand that Mommy's foot is off limits. I think he was just excited to see me as the sitter put him to bed and I slept in. The late-talking is so normal amongst young boys today, and he's getting speech therapy (as much as a 2 year old can) but I want to be sure he gets the best of me. And that means these damn RSD flares need to stop.
Sorry, ranting again! Or is it venting? That sounds nicer.
Again, thanks all, I needed to hear some kind words. When someone attacks me, I usually let it go b/c words are just that, words. But when I attack myself, it's ugly. And nothing hurts a mom more than thinking her child may be hurt or forever harmed by something she did.
I'm off to check the clock, and maybe get some sleep?
Thanks again ladies!
Something I did with my son was create a kit of toys to keep by the bed and my chair in the frontroom. In the kit were quiet games the two of us could play together. I also had books that I could read to him. But they were always right there at hand. He knew that those were for our special quiet snuggle times, when I had to rest. It worked out really well. I always kept new material in the box to keep it interesting. And of course it grew with him.
As for the aggressive hugs, that you need to explain from your heart to the little guy. He does not want to hurt mommy believe me. So if you remind him from time to time it will sink in.
I'm just so sorry you are hurting and will keep you and your family in my thoughts and prayers. Hugs, Cathy
I am new on here. I have read what happened to you yesterday, and completely understand how you are feeling!! I have an 8 year old and a 18month and I feel completely cheated by my pain. My partner away alot so have to call on the help of extended family to help with the kids and it breaks my heart that I have to do this. Like you I try not to cry in front of them. Thinking of you so much...you are not alone in your feelingsxx
You don't have to justify your pain you have an obvious disease process going on!!! Your doc should be loooking at ways to dontrol your pain. and if he doesn't listen find one who will God knows they make you jump through enough loops!!!! I can tell you stories,but I'll save that for another day.. anyway all you can do is all you can do!!! try not to aggrivate an already angry condition if you have to stay in bed all day stay in bed I've had to!!! And being new to this forum everyone here that I've talked to are acurly aware of how we have to live and are ready to listen!!! Peaxe
Tim
I know with my niece my sister will just tell her Auntie has a boo boo & this seems to do it. She never forgets & will ask about it from time to time. She'll actually study me at times, so cute.
He's a wee bit younger but its never to early to start explaining, or try anyway. At that age something like mommy has a boo boo or any ouchie may be enough.
He'll need to know at some point as he is your life.
I think so many of us feel the same. I still go in my room or wait to be alone to cry.
Now I can say I hid a lot from my youngest & she was in her teens. She was furious at me when she found out I was not sharing with her. I thought to shelter her but that was not the way she seen it at all.
Anyone who has been around to read your posts knows your the best of moms. As long as you try your best that is all anyone can ask. He will learn & you will learn how to work around it as he grows.
I think just reassuring him of your love & explaining the best you can as he grows is all you can really do.
I'm glad your friend understands, keep your meds & such private.
As far as family well most have that problem. I don't bother as it only opens the door for more hurt.
Lets face it life with CP is never easy. You have a good doctor so you may want to talk to him & have something around for these flares. At least it will ease your mind.
I wish you the best & don't ever feel your anything less then the best of moms.
There are plenty out there with no CP that do not try near as hard as you. So give yourself some credit. I wonder if there is a book out there for younger kids to help them understand. If not it sure would be a good ideal, after all they have books on other things for children. We have bad days but we are still mom & dad & our love never changes.
Hope your better soon here, Sammy
I was just curious, why do you hide your pain and tears? I hear mothers say this and I wonder why?
My mom hid her pain and tears all of her life when we were growing up to protect us but in ways I wish I would have known.
Aside from that, I hope you are feeling some relief today. I hate those days when it's all you can do to just rest and try not to "watch the clock" for meds. Pain sucks.
But as for my son, now that he's starting to talk, I am very observant of everything he comes into contact with. And he just doesn't understand yet, about the foot. He's too young. Some 2 year olds would be able to get it, but he's a late-talker. That, in itself is a good reason, if just to give him 1 less thing to worry about. And yesterday was the 1st time I saw him worry. He's not slow or have any medical condition, just is a later-talker, though recently he began talking a lot more that we were ready for, especially the word "No!"
I will never lie to my child, but for now, let him be a kid. He has a lifetime of worry, and as I'm his primary caregiver, I don't want him worrying about me or being scared. When he is old enough, I'll explain. For now it's just that Mommy has an Ouch on her foot. That's another of his favorite words- he is an only child and he's just learning words so even if he bumps his finger, he has to SAY "ouch!" to let me know. It's actually cute. Now he's learned to say "Help" and that goes for just about everything.
His speech therapist says it is shocking how many boys are late-talkers. All but one of her students are boys! And along with talking late, they might understand things a bit later. Jaden's proved that most of his late-talking is mostly due to his being an only child, no Daycare, no friends or family in the area. We started speech, play group and he has a new friend, and the words are flowing!
I'm get why a mom shouldn't hide things like pain, but again, he's 2. When he's 4, maybe he'll be expounding theories of his own. But for now, I don't die it so much, just hide the tears. Seeing my mom cry when I was 5 is a huge memory in my life. It scared me. I guess that is why I don't cry in front of him. But to be honest, I rarely cry anyway.
Everyone had such great suggestions- thank-you all!
They know you are hurting anyway!
The most important thing to let him know is that you will be around for a long time. Most of the time children watching adults hiding pain think the adult muct be dying.
Mine did not ask me until 5th ot 6th grade. I wish someone had told me to let them ask about that so they did not worry that I would be gone one day when they walked in from school.
No one ever remembers that I have Celiac either. I guess if they can't see it , they just don't remember. That is the only thing that I can guess.
It does get annoying being a nag or a broken record constaly talking about my ills.
Hope I said all that proper! And you understand that I was planning to go back and edit.