For parents, do you ever feel guilty about having flare ups?

I don't have kids, but I think guilt is kinda universal when it comes to chronic pain...and flares.

I feel guilty when I can't get the housework done and my BF has to work all day and cook and clean or live in a dirty house.

I feel guilty when my legs get stubbly and I spend lots of time in my pjs. When I'm getting sick all the time and I'm totally unattractive.

I feel guilty that I'm not back in college already, that I can't spend more time with my family, that my dog doesn't get enough fetch.

I can't imagine how much that's compounded when kids are involved, but you're definitely not alone.

Try not to be so hard on yourself though. I'm sure your daughter doesnt mind spending time with grandpa. Pain is pain. It can be debilitating whether its in your jaw or in your legs. You're obviously a great mom, and it seems like she understands- as much as she can anyway.

We're here for you :)

Thank you, ladies. It's nice to know I'm not the only one who feels like this.

I've noticed that with my daughter too, she's become very caring and empathetic. Just yesterday she came up to me and put her hand on my face (mimicking one of my pressure relief exercises) and said "It's okay Mommy, I'll stop the pain"

Made me want to cry it was so sweet. I constantly tell her how proud I am of how caring she is and how she's doing a good job helping me. I wish that she didn't have to, because I'm her mother, I should be taking care of her. But I do count myself lucky that I have a daughter who, at 3 years old, takes pride in helping me out.

Hi Night_Al, I'm also a single parent, my son is also 3. My grandmother helps me out a lot, and offers to take him on my really bad days. Sometimes I'm able to grit my teeth through it, and other times, it's better for both my son and myself if she takes him for a couple hours. I did feel guilty about that, still do a lot of the time, but on those really bad days, I think it's far better for the little ones to get to have some actual fun time, with someone that's in a condition to give them a fun time, than it is for them to sit around with us and watch our misery.

In my grandmother's case, she really does enjoy being with my son, and for her, she's said many times that getting to spend time with her great-grandson is the highlight of any week. For me, it's an opportunity not only to get a few much needed hours of solitude, but also an opportunity to have my son get influenced by something other than a completely moronic sponge on TV. In my book that's a win-win!

Yes, in a sense, I do kind of feel sometimes like I'm just pushing him off, but then I try to consider the fact, I'm not out partying, or drinking, or doing drugs, I don't push him on my parents or grandparents for days on-end so I can go play, and I've known or met many people who've done those very things, and just left their kids with someone else, just so they could go out and make total fools of themselves. And when I consider the influence any of my grandparents, or either of my parents, has had on my life, it is definitely something I'd like for my son to absorb eventually.

Hope that's kind of shed some light on that for you, guess I kind of rambled a bit. I know as a single parent, sometimes you just need a couple hours to yourself, you throw in health problems to the mix, and it gets soooo much harder. Take care. Sounds like you're doing the best that you can to me, which a lot of parents aren't these days. Just give your child what you can, no one can ask anymore than that.

Matt, thank you for your input. I totally get what you're saying.

I think I'm really hard on myself about it because I was/am a teen parent. So I put a lot of pressure on myself to prove that I am capable of raising my daughter right and I'm not just another statistic.

Sometimes it's hard for me to take a step back and realize that "normal aged" parents do things like let their parents/grandparents take their kid for a few hours, or get a babysitter every once in a while so they can go have a date night with their boyfriend/husband.

I just hate feeling like I'm being a burden, you know?

Vickie, thank you for sharing that with me. Hearing that your kids turned out great makes me feel a lot better. Hopefully I can do the same for mine.

Hey Night Al,

I'm w/ Vickie on this one - kids are resilient and most learn compassion and empathy when a parent is sick or has pain issues.

I think parents feel "guilt" no matter what the situation is - be it being a single parent, having a large family and having major health issues (my issue), etc. I think some level of guilt just comes with being a parent :)

All you can do is to do the best you can..... be grateful for the people that help support you in your life (my 2 year old twins are with my parents today).... and *try* not to be so hard on yourself (I say "try" because I'm hard on myself too).

It sounds like you are doing a great job, especially being so young, hon. I know it's hard.... hang in there... :)

--Tina

Hello, I have found that with or without the cp problems, it is not possible to parent without quilt. The best you can do is try to keep it to a minimum. I am a single parent, but my girls are grown, and guess what, they are fine, they are better than fine, so do the best you can and so your sorry for what you cant do.

It is difficult to make a 3 year old understand chronic pain, but my grandchildren even know when grandma is not feeling well and will ask me if they can help me. I let them bring me drinks or help around the house when they are here, which is every other weekend, they are 11 and 7 neither of them have ever known me as anyone but a grandma who sometimes needs help or is in a bad mood. They deal with it, by either helping me or staying away from me, lol. Thats when I am in a bad mood cause I hurt.

Do the best you can, and trust me she will be fine.

If guilt was a physical weight I would need a fleet of semi trucks to haul mine around from having to put on hold or deny doing things with my son because of pain.

I have been my youngest son's primary care giver since he was 6 weeks old. He is 7 now and in 1st grade.

In some ways while it is a bit heart breaking to have him offer comfort to me and to see him try to take care of me during the bad days, which he started doing from the time he was 2 or 3, it is also heart warming to see him demonstrate compassion and caring for others and as he has gotten older I have seen and heard about him using those skills he has developed and refined on me towards others.

Seeing this and knowing this type of thing helps with the stress and guilt I feel for not being a more active parent in his life and I think that my condition in some ways actually helps me be a better parent as I focus much more on the quality of what I bring to the table of parenting than the quantity.

Night_Al - I am so glad that you have such a great support system!

Like many have said, YES! You are not alone....I have been experiencing CP for back pain since 2003 My youngest was only 2 years old when I had the first major flare, and I was a single parent at the time. I was laid OUT, could barely move, the only way I can explain my flares is back spasms so bad that even moving my hand would cause back spasms to go crazy and it felt comparable to late stage labor contractions, but in my back and with no baby to make it worth the pain. The spasms were so bad that my back was twisted - it looked like I had suddenly developed scholiosis...my kids dad (now my hubby) was completely there for me and helped me out so much, taking care of everything, going to parent/teacher conferences with my then 8 y/o (and the teacher had the nerve to question where I was and RUDELY stated that my responsibility should be to my child - and I couldn't walk!!! SMH!) We got back together and got married soon after that.

My back has only gotten worse as time goes on, and my day-to-day life is impacted. I can't mop or sweep, limited ability to vaccuum, do dishes, basically most household stuff...so my kids and spouse are left maintaining that - so I have also had to get used to my house not being as clean as I would normally like it - but oh well. I am limited in many activities and do feel extremely guilty sometimes that I can't do more with/for my kids - but after all the years I have gotten to the point of acceptance. They are so helpful and sweet and I am blessed. I do not have any of my family near me where we live now, so having older children that are so well behaved and such a supportive spouse make life in pain much more bearable. But it has taken me alot of years to adjust - and I do still fight the guilt. I feel most guilty about how I put so much into work that when I get home I am spent - just tired and in pain. But I am the breadwinner and that is how it is, and how it will be until I have to stop working.

So I guess my short answer is - YES!

I am a 47 (going on 80) year old father of four. My reasons for living are 8, 6, 3 and 19 months - not to mention my 41 year old bride. I (obviously) didn't get started on a family till late in life. I battled alcoholism until I was 34 and then when I finally got sober, my life really turned around. Got a great new job, bought a house, and married the best woman alive. Life was fantastic. Within two years, I started falling apart. First my right hip was replaced (I was 36) - and I got laid off from my job in the collapse of the telecom world. For the next 10 years I had my other hip replaced (age 39), diagnosed with Lyme disease, had 2 precancerous cysts removed from my neck (separate times), carpal tunnel and trigger finger surgery on both hands, a subacromial decompression of my left shoulder, left shoulder replaced and last fall, my T1 and T2 were fused. My C 5-6-7 will be next, but hopefully not for a while.

I have worked off and on during these years but it is hard to get a job/keep one when you keep ending up needing surgeries. I thought I was done disappointing my parents and being a burden on them. My Dad died suddenly of a brain tumor 5 years ago. I gave him grandchildren he loved but wish I could've had the rest of my life straightened out after the years of hell I put them through. My Mom is 81 and I feel incredible guilt for the added stress I have added to her life. But I have also given her 4 beautiful grandchildren who brighten her life immeasurably.

Despite my best efforts, I snap at my kids when the pain is too much and they are bouncing off the walls or fighting, as all kids do. Sometimes I can't get down on the floor with my 19 month old or pick up my 3 year old or horse around with her older brothers. Since I haven't worked in quite some time, I can't buy my kids the new bikes or karate lessons or take them to Disney World like their friends do. However, I DO tuck my kids into bed every night, regardless of my pain level. I DO act as assistant den leader in Cub Scouts, although I can't always participate physically.

We do the best we can with what we've been dealt. And yes, guilt can eat away at us if we let it. If you can't tell, and I'd be surprised if you can't, I don't have a good handle on guilt myself. It's hard when whenever you leave the house and your 3 year old always asks "are you going to the doctor Daddy?". Half the time the answer is yes. My wife tells me what a good Dad I am. My mother tells me I am a good son. I have a hard time believing either a lot of the time.

Tell you what, I'll pray for you and ask that you do the same. That and putting one foot in front of the other is all we can do. I am sure you are a great Mom.

I'll end this rambling, now that I've probably convinced you that I am a complete basket case

Take care and God bless, Andy

Ashleyh430,

Welcome to HW and the CP forum. I see this is your first post - glad you decided to jump in!

That being said, we'd love for you to start a new thread and just introduce yourself. That way - more people will see it and be able to welcome you :) We've got some wonderfully supportive and encouraging people here on the CP forum.

Look forward to hearing more from you -- Take care, Tina

I had 6 children,my oldest will be 30 this year and my youngest will be 15 on Mothers day. I lost a daughter when she was 5 days old. I got hurt in 98 when my youngest was 3 months and my oldest 15.

I was a Nurse full-time on the ortho/neuro unit at our local hospital,worked part-time for the registry and weekends as a domestic violence counselor at the DV shelter.

Up until I got hurt I spent most of my time at one job or the other. Their Dad was an alcoholic and if he bothered to come around it was to ask for money,dry out a few weeks or steal something.

My Mom was the most important person to all of us.She was the babysitter for all those jobs and pretty much raided the older kids. She passed away unexpectedly while I was pregnant with my youngest was 4 months away from being born and I was 6 months from my injury that put me on this road.

My next 4-5 yrs after the injury was the hardest years,searching for relief,answers,having 6 surgeries and then therapy and everything that we have to do. Looking for the right Dr. It was not an easy time.

We lost everything.The house both car's,had to sell everything else just to eat some weeks. I had lost everything including my support in my Mom and the following year,my 1st anniversary of my injury and still fighting workmens comp my Dad passes away also unexpectedly.

I was fighting to get paid,trying to maneuver the welfare systems and get into government housing and really close to being homeless. I was in a state of mind I don't even like thinking about. Makes me physically I'll to do so.

At this point I was just trying to make it. Thinking my babies wouldn't be so much better with out me. I had a huge insurance policy from the hospital,I was in horrible pain and so very very tired of it all.

I had made an appointment with a Dr that had a waiting list of almost a year for Medicaid patients and the day I knew I was going no more I got a call telling me I had an appointment. I was also on the computer that day and stumbled on a website with a compassionate Dr page,now defunct site.

Short version,life changed that day.I posted on that forum an a longtime member answered and she really saved my life with words. I thanked her everyday for 7 yrs until she passed away a few years ago. She will NEVER know how much she did for us that day.

I learned from her to give my self a break. The kids were going to love me and need me in the years to come,they had suffered all the losses with me.

I will come back later to share the rest of this story and hopefully show others how no matter what you are what your kids need.

Vickie

You know... this sounds like my life story...lol. I. am able to get up n do a few things but for a while I couldn't. My life was sitting on the couch surrounded by pillows randomly falling asleep n I couldn't help it. I. have an 18 &7 year old.I am 39. I constantly look back... to how much I could handle,. do, and all the cleaning n cooking.n. playing. n trips plus having a full time job with management type roles. I went to see a.bran New therapist and she let me talk one time then after that everytime I said I used to, or back then, Or before.... she would cut me off and say... your not who you were then... your right now. So I harbored guilt for so long because I Was able to do so much with my older one and not my youngest one as much. But. kids do understand and if I go to do something... she'll say don't pick that up mommy you have a bad back. She hugs on me and loves on me and we do alot of things sitting sometimes and other times her dad will do more physical things with her but she gets it. How can you feel guilty for something you have no control over? You have to have faith that things will get better... one way or another.Last weekend... my hubby took my daughter to see his great uncle. He had a stroke and is in the hospital. Well they have this big glove like thing on his hand so he doesn't pull out his tubes n.iv. So they let my hubby take the glove off as long as they watched him so he wouldnt Mess with those tubes. By the way, my hubby was reluctant to take her because he didn't know if she'd get scared or upset.She's never been to a hospital in seen someone in that shape... paralyzed on one side n not able to talk. Well she looked at her dad and said its okay daddy..I wanna take care of him. So she stood by his bedside n everytime he tried to pick up his hand towards the tubes.. she'd say... oh no sweetie.. you can't do that. lol Then she said your my uncle and can you squeeze my hand if you hear me... so he did. But. my hubby said it brought tears to his eyes because she never met him before and all she wanted was to care for him. She knows from me and how I Am with not bein able to do everything... how to b caring and understanding. I wouldn't wish my issues on my worst enemy.. however... because of this my daughter had become the sweetest most unselfish person and if I can't do something... she doesn't throw a tantrum.. she just says ok mommy. D ont get me wrong she gets to do alot of stuff n go places n hang with diff people in the family but for some reason... I'm the one she missed the most n wants to b with. Y our kids may get upset or frustrated at times but they really do get it deep down inside and realize that you can't help that your hurting. I wasnt. by no means trying to take away from this discussion n make my daughter look like the world's best kid because it wasn't always like this and it isn't always like this now. Im just letting you know all of us have some guilt inside but I refuse to let guilty consumer me and depress me cause if I cant do alot physical ly with her... at least I can b a happy person and fun to talk to or b around. My daughter is only 7 and she's been going thru it as long as she can remember so just relax and know your kids will b fine and let others help with them from time to time. That way they get out n have fun. If you were completely healthy and could do what you wanted and had no pain... I'm sure if someone needed you... you'd b there for them. SO don't feel bad because your parents take your child out to play.They would probably do it if you weren't in pain. You owe it to your child to take care off his mother. I. got that from Dr.Phil. lol Enjoy life the best you canand take it one day at a time.