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. :)
As I mentioned they have books for younger kids on strangers, new siblings, loosing loved ones, its to bad someone did not come out with a book on parents who are disabled, in pain or sick.
Kids identify in different ways. At the same time they can be much more intuitive then we realize.
When my girls were younger I suffered horrid migraines, They would put me off my feet for a month a time. I became violently ill when they hit & at times I'd have stroke like symptoms.
This scared the heck of my girls, I remember watching my youngest out of the corner of my eye as I was heaving over the toilet. Little tears rolling down her face. Had me so upset that they were so scared. She had yet to learn about illness or loosing anyone close. As soon as we did loose a loved on they both became frightened that my condition my take me away from them.
Of course this is not abnormal & I had to explain & reassure.
As young adults they still worry. only now they express their fears.
Its not easy for kids no matter the age.
What hurts our children hurts us.
He'll learn & it will become sadly enough a way of life.
Out of the bad will come good. Most kids that come from parents with something like CP are empathic & care much more about others at an early age.
He's such a doll & I'm sure full of energy.
You'll find a way to explain about your condition. Just thinking about that foot of yours & a energetic toddler has me cringing of what could happen.
Till this day I do not like my girls to see my cry in pain. It only worries them. I have those days I just loose it. I explain at times it more out of frustration. There are times I still sit them down & let them know I'm still mom & that won't change. I have some problems but I'm fine. They will some times refer to me as being "sick". For some reason that sets me off.
My heart goes out to all parents suffering from any condition with small children. Its not an easy road but as with most things in life you manage.
So funny I can hear my daughters already making plans to take care of my husband & I when we get older.
I took care of their grandmothers so they feel they have to care for us. All I hear is how stubborn I'll be & how they will handle it, LOL.
As I said I believe most grow up with big hearts.
Perhaps a hidden blessing that comes from such a painful mess our lives can be.
Sammy
BTW- foot is normal color and not 100% but I'd say we're 50% of the way back to normal pain, etc. I feel better today than yesterday, and think the flare is letting go. Thank Goodness!
As for your son, if he is old enough to ask questions, he is old enough to have answers that are structured for his age. There are many books that explain living with a parent who has chronic pain. I would go to Amazon.com and look for them appropriate to his age.
Children NEED to feel secure and they need to feel like they have some control over situations. Security and control help them to feel involved, capable and reduce fear.
One of the things you can do is turn physical cuddling into a game... Have him "sneak" up on you to give you hugs and cuddles. The sneakier he can be the better. He can come up on the side of you like a "snake" or from the floor like a kitty. That would remove the "running leap" into momma.
You can also do art projects and stuff from your bed so he does not feel that you are "off limits" to him. One thing that is too difficult for children this age to understand is that mommy/daddy is "not available" when they are in their own home with the child.
You can set a timer for 30 minutes or whatever you can handle that is time just for him while you are in bed, on the couch or whereever you are comfortable. Then, after that...it is time for your nap. Talk about naps with him and maybe, he would like to take on with you? You could have your hubby set up a "camp ground" in your bedroom for him with a sleeping bag, t.v., maybe even a blow up mattress or pool lounger.
Be straight with him but, focus on the positves. It will help you feel more involved and help him feel less scared.
I raised two babies who were ten months apart by my self. It was so hard when I was down. These were things that really helped me and, my kids still talk about them today as fond memories--my son is almost 18 now. They also have expressed to me how thankful they were that they knew how to help me without compromising the closeness we shared.
I hope some of these sugesstions help. Even if they don't...I hope that you will allow yourself the ability to not blame yourself or feel guilty.
In support!
I'm not bedridden and still work so it might be confusing to him that some days I'm able to play on the floor with him, and some days I'm sitting in the chair most of the day. I pray it never gets to being bedridden (I waited so long for him I wouldn't want to miss anything!) but if so, I've got so many ideas from you all. I appreciate it.
We've been good for 2 days now and hope that it stays that way! But I love the idea of games having him sneak up on me. That way I can learn to hear him better, and he can learn to remember Mommy's bad foot. Good idea!
Thanks again!!!
And I think that if J has a question, give him a simple answer like "it hurts." If he asks why your foot is blue, tell him "sometimes it gets blue, but the blue will go away soon." And he can kiss your ouchies to make them feel better, just have him blow a kiss to your foot.
I hope your foot is feeling better. Gentle hugs.
My son has only known me as disabled since the lupus flared out of control right after I delivered him. I got my SSD when he was 4. He was the one who found me unconscious and unresponsive when he was 8. I had another coma when he was 9. He knows how many meds I take and that I'm slow moving. He said once that he knew I was different from other moms because I couldn't take him to places like Chuck E.Cheese or the park. But he liked all the "us" things we did at home. Maybe that's why, at 13, he came out to me before anybody else. I'm so touched by this!
Don't worry about Jaden. Kids are resilient and it's ok to tell them you're in pain and that's why Mommy can't do this today. It's better than leaving them hanging, thinking that you just don't want to do things with him!
God bless!
Sandy