Ever feel guilty about having IC??

[mimimama]

Hello Dear Ones,


I am mother to a darling 4 and half year old son, Pierce. He is my little angel. I confess to you all that I feel very guily about never feeling good. I rarely have the energy to play and frolick about with him. He plays so well by himself, no siblings yet..but he knows Momma is sick and I feel so guilty about that!

He goes to grandparents some days during the week when hubby is at work and i am having a tough day. he cries alot becuase he wants to stay at home with me:( This breaks my heart.

Any other mommas that have gone thru this with little ones? I could really use your words of wisdom!

[GriffsMommy]

I feel guilty all the time. I feel guilty when I snap at Griffin (about to turn 3) because I'm hurting and he's driving me crazy. I feel guilty when I can't play with him the way he wants me to. I feel guilty that money is tight because I have missed work because of this stupid IC and I'm the primary bread winner. IC makes me feel guilty all the time. I don't know if I have any words of wisdom for you other than it's obviously not our fault that we have IC, we didn't want it, we wish it would go away. Our boys know that we love them, heck I probably tell Griffin 50 times a day. From what others have said raising kids with IC has made the kids be very giving, caring people later on in life so maybe in some weird way we are giving them a gift, the gift of being very understanding and compasionate towards others.:grouphug:

[mimimama]

Christine,

Hey, thanks for the feedback. It's good to know I am not alone (and neither are you)

I just feel so bad for being such a crab all the time. i am getting my period (I think) and am super crabby today. My poor husband just told my son to tread lightly.."Momma's not in a good mood today!" My son is going to his Grandpa's today..is it bad that I can't wait for them to go so I can get some quiet time??? I work from home doing schedueling for Clinique and I cannot have any distractions or I'll screw up someone's schedule and then there is He!! to pay:)

I try to do the 5 second rule. Whenever I am really hurting and about to SNAP I try and wait 5 seconds before I blow my stack and say something awful that I will regret. My son is a little person with feelings and one time he said "Mommie, I want you to be nice to me" this really checked me about my bad attitude and the way I wad responding to him. I'm not perfect but atleast I'm aware of what needs to be fixed.

I love my family more than anyone..why is it that sometimes we treat strangers better than we treat our own flesh and blood?

[GriffsMommy]

Because our family is right there with us all day and sometimes they can get on your nerves! That doesn't mean that we don't love them but when Griffin is being really whiney and I feel like crap it drives me nuts. Or the step kids are fighting like always, they are teenagers, I don't think they can help it! I just snap! It's easier to be nice to the people on here sometimes because at least we know what we're all going through and can relate to each other.

[ICNDonna]

There are some things you can do with your son when you don't feel good. When my now adult children were still "children" children, we did a lot of things like watch movies together in my bed. Sometimes we played board games together --- those are the things they remember about childhood.

One thing I did, and still do, is to tell my family when I don't feel well. What I usually do is tell them I'm going to have a "cranky" day. They seem to deal with it very well, which helps me to be less cranky.

Sending warm hugs,
Donna

[mimimama]

Donna,

Thank you for your words of wisdom. You are so kind. I've read numeros posts that you've written and really look up to you!

You're the best:angel:

[mary124]

Can't really give you words of wisdom here, as even though I had IC when my kids were little, and I was ill with this and everything else under the sun, I seem to do ok, I worked full time (still do in fact) but my kids knew that I was sick, thankfully they had each other. Later on, when my youngest was about 14, I had to have heart surgery, and you talk about caring for me, he was my nurse, housekeeper, cook, etc. Couldn't ask for anything more! even now, at 19, he works full time and still does a few things for me, as this illness is geting me down now, I don't know how long I can go on working F/T - I come home tired I go to bed almost as soon as I get home and pretty much sleep the weekends away, everyonce in awhile, I do find the strength to clean the house. I really don't know how I would do it all now if I had young kids like most of you do - I know I couldn't handle it!! You are all just amazing in my books!!

[billie]

Yes, I've felt guilty. My boys were 5 and 8 when my symptoms started. They're now 12 and 15. Like Donna, we would do things like watch a video or play a board game or take turns reading a book, and still do. They understood that "Mama has bladder pressure and pain," and they would play quietly together. I'm very proud of how they're growing up. They are very sympathetic and kind to others, they help me a great deal around the house and I couldn't be happier with them both.
I know there are down sides to being in pain and sick, but I cherish every moment they would like to kick back with me and talk. Try to focus on the things you can do. It will get better!

Wishing everyone a pain and guilt-free day.

[tigger_gal]

I feel bad that I have bad days and in too much time to play with my 2 year old.
Christine has a great point about our children when they are older we are giving them a gift, the gift of being very understanding and compasionate towards others I also hav a 19 year old that is the best kid in the world. If Jake turns out 1/2 as compationate, understanding, and loving as Ashley has, I will be truley blessed.

[GriffsMommy]

I think Griffin is already compasionate. If he sees I'm upset or really hurting he will ask me what's wrong and give me extra hugs and kisses with out me having to ask and he's about to turn 3. I think he will be a very compasionate person.

[Briza]

Hi Mimi and others...
A guilt story from a different angle, but guilt just the same. I missed work most of March, APril and a good portion of may this year from a flare the likes of which I haven't had since the year before I was diagnosed and got treatment. I'm a middle school teacher and not being there for the students makes me feel terribly guilty, and with additional pressure from administrators and parents, does not help at all. Luckily my symptoms have been improving greatl with a new pain med and rest so I should be good to go when school starts in mid August, but I spent most of June coming to terms emotionally witht the fact that my job had been in jeopardy, even though I applied for FMLA, they were able to a reassign me to a completely new and not especially desirable position at a different campus without any advance notice as soon as I returned to work in May. I was devastated and have been so depressed, but luckily feeing better and preparing for what's ahead for me in the fall... where I'll be assigned and such. One good thing is that my new assignment included a RR IN MY CLASSROOM and a security guard and bouncer (these were the real bad kids L:) ) available at all times to relieve me for a minute run to the RR as often as needed. So THAT was fantastic and I'm going to fight to get that position again...looking into ADA and how it can help me get the accomodations I need. Going to call the district office today and see if they've decided yet where I'm going to be in the fall, and I'm going to get the ball rolling to see if I can continue with this new position with the RR in the classroom, even if it takes letters from my doctors or whatever ADA things need to be acquired to receive the accomodations I need to make me as productive teacher as possible with few absences from work. ANyone with experience with ADA, please let me know how it works. Of course I will do my own research and probably will need to start a thread on this.
Anyway, all this to say, yes, I feel the guilt, too, even though I'm not a mom, I have 110+ kids that look to me to be there everyday, as well as bosses who expect the same. Best wishes to all of you and just remember we are doing our best in a very difficult situation. :grouphug:

[Berkshire Road]

I think probably most of us feel some guilt; I have been ill off and on for nearly all of my daughter's life (she is now 12). And I can't say it's been easy for any of us. There have been days when I just wanted her to go away, but usually would come up with some kind of game to play in Mommy's bed, or a video, or a playdate. Fortunately we live in a small town where we know a lot of people, and my parents live here too. So I could usually dump her somewhere when I was desperate. But, of course, she wanted Mom.

I just keep doing my best with her. But I have to tell you, she is the most compassionate, helpful child that I have ever known. She's always anticipating my needs, and offering to do things for me ("Mom, do you want me to bike down to the grocery store to pick up milk and bread?" "Mommy, are you okay, maybe you should lie down now..."). And not just with me, she also demonstrates this same empathy and compassion to any disabled or elderly person who crosses her path. She holds doors for moms with big strollers. She gives up her seat on busses and trains, without being asked.

So, if I had a choice, I would not have IC and the other conditions in our lives. But, since I don't have a choice about that, I do try to focus more on what IC has given us, than on what it has taken away. It has given Susannah patience, compassion, self-reliance, great sensitivity to the needs of others, and a special kind of maturity that only comes from facing difficulties in our lives.

I know you'll probably keep feeling guilty, anyway -- Moms always do. So here's one suggestion that worked well for us when Susannah was much younger: I used to keep a "surprise" box hidden in my closet. I would pick up a video or a toy or art supplies or a computer game, or something age appropriate, whenever I came across them. Then, on days when things were really bad for me, I'd say, "Okay, I will give you something from the Surprise Box if you will promise not to bother me unless it's an emergency, until Daddy gets home." She would be jumping up and down with excitement by this time. It never failed. I just had to remember to keep the box supplied! And because I worried that her time with me tended to be sedentary, we made sure to enroll her in early sports programs, from Gymboree up to Little League, soccer, gymnastics, Irish dance, diving, and she eventually settled in swimming.

So, as you can see, IC does bring some benefits along with it, and there are ways of making life more fun for a child with an IC mom. I hope you dont' beat yourself up too much about this. Your son will turn out fine as long as he knows that you love him!

[mimimama]

Carolyn,

This is such great advice. I have been doing alot of special things for him..I always try to reward him if he has been extra helpful or really understanding when I am having a bad day.

You are all right on about sick parents making very compassionate kids. My mom and dad were both very ill all throughout my childhood..my second home was the hospital. i have grown up to have a huge heart for sick people. I am trying to finish my bachelors so I can go on to be either a Nurse Practicioner or RN. I love to help people feel better! My son has the same tempermant.

Love to all who have responded! you guys are the best!

[Autumn B. May]

I too feel very guilty. My daughter will look at my husband and say "Mom is sick again!" but she will quickly add "We have to take care of her daddy because she loves us and takes care of us!" She is a sweet thing. She is 7 and will get lotion out and rub my feet as hard as she can to help me relax. My son who is now 9, understands a little about me because he was born with a birth defect and while he is doing o.k. now I think that that has given him such a kindred spirit and he just stays clear of me or he will just lay in bed beside me and rub my arm. My husband will kick in ONLY when he HAS to but he has gotten better lately. He has never had anything except his widom teeth cut out but he hangs in with me and TRYS hard to understand. I just feel so bad because I feel as though I am just a BURDEN and that they would be better off without me but then they tell me they love me all the time and thank me for all that I do for them. And I tell them all the time that they are what keep me going and that IC will not take me away from them. Take care everyone! HUGS!!!:grouphug:

[Claredale]

I have lived with IC for most of my son's lives. They are both grown now and I have asked them at times how it made them feel with my being sick so much. It's funny to hear some of the things now when your kids are grown. I would say they took advantage of the situation at times, but they were good kids, so luckily it was nothing that got them in trouble. Just kid stuff! While I did go to most of the activities after school such as games, plays, they knew the times when I was in pain. My older son (who is now married) told me one time when I was recovering from surgery one time and he was supposed to stay with me, I had told him that he could take the car (he was 17) and gave him money so that he could go to the movie with some friends (I was heavily drugged at the time! LOL). I woke up later and there was a number beside my bed and it said call if I needed anything. It was the cell phone number of one of his friends.

There were and still plenty of times when my sons were in their teens that they would have friends over and I was just in lala land with my heating pad sitting in my favorite chair. They would tell me that their friends loved coming to our house since I had no rules (they were good kids at least!), they could eat what they wanted (when I had the energy to go to the grocery store). Some of them still come over and see me when they are home from college and watch TV with me (like old times). They tell me that they appreciate the memories that they had at my house. So what I am trying to say, when my kids were in their teenage years, I felt so guilty, but to find out that even though I wasn't totally involved, I was still there and they remember that. They have also told me that they knew the times that I had my "mean" days and they always coaxed me to go to room since any little thing would get on my nerves. I am grateful that they were understanding of my illness for the most part. I still have guilt about losing contact with alot of my friends, but alot of them still call me from time to time to invite me to a movie, or come for dinner or come by and see me.

[ICNJess]

I'm a little late to this thread. :)

Today I had a HUGE case of the guilt. My daughter played quietly (for the most part) and watched Noggin while I felt like I was dying on the couch. I felt so sad and upset that I couldn't play with her and work with her on her colors and shapes and words.

My daughter is the best thing that has ever happened to me, but I sometimes feel selfish for bringing her into this world when I spend 1/2 my time in a flare up or in too much pain from either IC or the nerve pain from the stim and I just end up crying and feeling sorry for myself...until Izzy walks up to me and puts her hands on my face and giggles, and crawls into my lap.

[dancemomof2]

I feel guilty all the timethat my soon to be 15 year old takes over so much for me in the morning especially if I have had a bad night. She never complains just does it, then I feel guilty when I let her do extra things for helping like go to the pool with her friends in the afternoon or movies or whatever and my middle daughter sits home because she refuses to lift a finger to even pick up her own mess let alone help me out hardly ever even if she knows she will get rewards for it. SH eis just so stubborn. I think kids understand more about our IC if we include them in the dicussions and as much of the decision making pertaining to the care of the family member that they can understand. I do

[mimimama]

Hey mommas,

Thanks for responding. it is so hard to be a good momma when you are hurting all the time.

Pierce spends alot of time with daddy because I feel so crappy all the time. When they're gone I get so lonely and depressed. The guilt really sets in. As soon as they come back from their excursions out together, I am so much happier. That's why i really wanna get my pain under control so hopefully I'll have more energy and be able to do more with Pierce.

I cherish this support group. You ladies are wonderful!:pray: :angel:

[Jamey]

mimimama,
You shouldn't feel bad for wanting your kids to leave as long as you're happy to see them when they're back. I can't deal with kids/hubby/life if I don't have time to "center myself". It's really good that Pierce understands. It makes it easier for him to know that you're not just getting rid of him. You may ask your doc about an anti-anxiety med. This helps me the most when it comes to being snappy. Benadryl can be used to calm you down if needed and alot of Dr's recommend trying it first. Also my journal is my best friend. It doesn't judge me or tune me out when I'm too bi***y. It always helps me figure out what's really bothering me. My daughter helps with little things like hot rags for my eyes or chasing drinks when it hurts to get up and down. It makes her feel included and helpful. She's so compassionate and I wonder if the pains she has are her own or sympathy pains. My pain started when I was her age so I'm a little worried about her. If you can get past the guilt the time you have to yourself can be so important for your mental health. I believe mental health to be number one. You can't be your best if you're not at your best. Lots of luck and remember, you can never love your child too much. Make sure he can talk to you about his concerns/fears.

[billie]

Hi Everyone,

I guess we're all feeling guilty. My advice is to try and do your best. Also, children need to know how you feel about them, not your IC, so when either or both of my boys come into the room, I really try to show them how important they are to me by looking at them with a smile on my face, light in my eyes and love in my heart. Even though you may not be able to play or help them with homework right now, they will know by your face how much you love and cherish them.

Hope this helps a little.

Billie.

[Berkshire Road]

Thanks, Billie, that was really nicely put.

[Moad]

I feel quilty alot. my kids are 9 and 11 and can entertain them selves but still want to spend time with me. they are always wanting to go to the park or the family fun center or somewhere and I feel quilty that I cant do it when they want to. and I missed out on a family trip to idaho to see a our new neice due to a bad flare up. and had to send my husband with the kids by themselves. I always think they are already getting so big and before I know it they are going to be all grown and I will have lost so much quality time with them. and my 11 year old is such a mommas girl and just wants to be with me. and I have flares sometimes where I am in the bathroom constantly. the last big one I had, I didnt leave the bathroom for 3 days it was so bad(even slept on the toilet, worst 3 days I have ever had) and she got so upset because she hardly got to see me. its so hard because they dont understand why we cant spend the time with them that they deserve. I spent the whole day today in y room and felt guilty the whole time. soo.. yes..It is really hard having this freaking disease .. well its hard period, but maybe even harder on the little ones.