How Do You Explain "Agony" To A 6 Year Old? | Arthritis Information

 

Well, I have had a horrible weekend with my little girl. I am completely frustrated with my situation.

It's Monday here, but has been a long weekend so she has been off school Sat, Sun and today Monday.

All she wants to do is 'be with Mummy' which is not easy when Mummy is in absolutely agony!!!

"What's agony?", she asked me genuinely.

I tried to explain it's like having an 'owie' all over that never, ever stops but I could see her ability to comprehend this was just not there.

So my whole weekend has been Neve bouncy around wanting me to do things with her that I can't do. It's hard to do anything. I can barely move I am flaring so badly.

Play ball.

Paint things.

Blow bubbles.

Watch tv.

Do this.

Do that.

Bounce. Bounce. Bounce.

Forty thousand suggestions of things to do together happen within 5 minutes. I am exhausted just listening to her.

I can't take care of myself in all this to then take care of her.

When I say I can't do all these things with her because I literally physically can't right now, she then takes that as 'Mummy doesn't love me.'

Needless to say by this morning I was in tears just trying to keep up with her.

I've tried explaining that we can be together but we have to do things at MY pace not hers...she doesn't understand. Just her talking to me about all the 'things' we have to do together makes me panic and then cry.

I feel like a complete failure here. It's not that we have not done anything together this weekend. We have watched dvd's, cooked and baked together, played games, read stories but I can never, ever do enough.

Does anyone else feel completely unable to keep up with their young children because of your RA? I am lost here. I can still manage if I can go at MY pace but my pace is just not satisfactory to Mummyhood. She is obviously feeling very insecure and I can't work out how to make it better. If I say, rest and suggest we read stories my whole bed will be bounced on hurting my whole body, there will be wriggling and jumping on me...we don't listen to the stories and I end up giving up. The house, of course, is a mess due to Neve and I being messes and I feel guilty about that but at the same time think the tidiness of my house is the least of worries.

I am going nuts. We have spent the weekend in tears and screaming at each other alternatively. Instead, I know we need CALM which I just can't seem to create.
Has she ever been really ill? Like a horrible flu bug? I would try to remind her how sick she was and how she just wanted to lay around and rest. Explain that mummy feels like that all the time because she is sick.
I hope that helps you some anyway. So sorry you are having such a horrible time. :(

Thanks, GrammaKathy, for your reply.

No, she has hardly ever been sick at all. Which I think is part of the problem, why it is so difficult for her to get 'it'. She has been one of those robust healthy kids that NEVER gets sick.

She did recently though have a awful bout of gastro which meant she was off school for a week. She didn't remember ever being sick like that before. I will attempt to use the idea of how she felt with that and compare it to how I feel all the time, we can only hope it might gel for her.

I have calmed down a bit just by writing the post and getting it all off my chest. Venting can so help sometimes.
HI Cords, yes I know how you feel, I have two boys as you know, one is 11 and the other 7, I think the worst part for us is the guilt we feel for not being able to participate.  I don't feel up to playing at all, especially physical stuff, sometimes there are tears, and tantrums from my 7 y.o, or if I am resting, absolutely exhausted, he will keep waking me up saying, when are you getting up Mummy?  So I can understand your feelings, granted Gary is here a lot of the time and I am incredibly lucky that he is such a good father, but when he can't be here, I have to take over and sometimes that can be scary, as I may be terribly sore/frustrated/grumpy etc etc.  My 11 y.o understands more, but he can get angry if I say we are going to do something and I cancel due to not being up to it, although generally he is very good and helps me greatly with Luke (7), and to be honest Luke sometimes helps with Liam (11).

As for Neve, perhaps you could get her to starrt a hobby such as scrapbooking or writing like Mummy and then when you are unable to participate, maybe you can supervise and guide rather than take part.  It is hard at her age to really understand, do you have a friend locally who has a child, that could come over and play, and her mummy supervise or Neve go to their house?  Sorry, I can't think of  any real solutions, I know Luke gets very frustrated if I won't play with him, so he might sit on the bed next to me whinging, they can only watch so much TV eh?  Hope you can sort it out Cordy, I guess there is always vacation care, which you could utilise for a couple of hours during the day , it won't be too long until she is able to understand more and she will be only to pleased to help Mummy because shes unwell.  Best of luck Cords, hugs Janie.XXX
_popupControl();Hi Cordy, I am sorry that you are having such a rough time with this. It would be wonderful if having kids was a never-ending joy, but they are who they are, and sometimes that means facing aspects of their personalities that we don't like. I don't have kids, but I am very close to my 4yo cousin who just loves hanging out with me as much as he can, playing lego, watching Dora, reading and everything, but he just doesn't "get" that sometimes I can't do things, which makes him very frustrated as he can remember when I would throw him around the room, and run around with him, much to his delight. The amount of times he has asked me "what's arthritis?" and I've explained is too many to count. So I feel bad because I end up disappointing him regularly, and he really gets hurt when I can't hug him or he can't sit on my lap.

My aunty has had FMS and depression for over 20 years now, and faced the same issues when her kids were young. Her kids just got so frustrated and angry with her that she ended up taking them to therapy so that someone could explain and communicate to and with them on their own terms and at their own level about why mum can't do everything that other mum's can. I'm not saying that you should consider this for yourself and your daughter, especially because she is so young, but it allowed my cousins the voice and the space to express themselves without hurting anyone, and it also helped them to understand how "special" mum is. I would perhaps also consider after school care or for Neve to go over a friends house or a nanny/house keeper (teenagers will work for peanuts!) for a few hours until Neve is old enough to help out. It must be tough.


I totally empathise with you......I have a 4 year old daughter, and feel like such an awful mother, when I have to keep saying 'sorry love mommy's hurting again today'.  I hate to think that she will remember her childhood as mommy being ill.Cordy...I am so sorry. It does seem like it is impossible to get them to understand. I don't have much advice as I also don't know what to say. Luckily for me, one of his favorite activites still consistes of rolling his matchbox cars along the floors. He is VERY active. I have tried to find ways to keep him occupied while I can sit. Yesterday we went to the pool for a few hours. He has been taking lessons for a while so all the guards know him and I was able to sit back and relax for a bit. He also does soccer. Once again, I get to watch. But, there are the times when only mom's attention will do. I feel like such a bad mom when I keep telling him to "get off me!". He isn't doing anything wrong-just being 4. I do have family and friends that will help out if needed-but he wants mom. And I want to be there for him.

I wish there was some answer I could come up with. I do keep hoping that this will make him a better kid in the long run. My students that have parents with chronic issues are often the most caring and mature kids I have. I just don't know how to get my little one to that point.Thing Is even  when mine were young and I was working full time before my RA caught up with me     It was hard to keep up. I  have  3    boys that are   20,19,15 and have        never been able to keep up. Dont beat yourself up even without ra you would feel overwhelmed. Just take a deep breath and do what you  can because she will remember the good    more then the things you couldnt do. Quaility not quantity and just do as much as you can she wil be fine.

I was lucky enough not to get RA until my children were grown so I can't give too much advice. Do they have counselors in the schools there? Do you think it may be beneficial for her to talk to someone? It's certainly not your fault that you can't keep up or do the things you'd love to do as a mom. Maybe someone could explain chronic illness and the emotional issues that go with it for both the person experiencing it and the people who love them.

I'm so sorry your weekend was so rough.  I have a suggestion that worked/works to 'slow down' my older daughter and I won't hesitate to use it on my younger one, if needed.

All those 'thousand ideas'?  Make her write them down.  Takes six year olds a long time.  Make sure she has pretty paper or markers, etc., and ask her to make a list of ideas.  Make the whole decision of what to do an activity.   Or put each idea on separate paper (oooh, with a drawing of you both doing the activity) and use them to narrow down what you will do.  You can drag this out if she likes decorating....make a box for 'can do today', 'maybe today', 'another day'.  Eventually you will have to do something, but keep her busy 'getting ready' to do it, if that makes sense.

And make sure she knows great she did with her letters, how beautiful her drawings are, etc.!   You are a great mom!  Slow her down to your pace, but let her think it is her idea.

We can make 'picking out a DVD' take a long time, too.  My older daughter still likes to do this, just to do it LOL.  She puts them in categories, then they 'compete' until we narrow it down to one. 
Maybe you can make a list of hobbies/activities that you would be able to do, and then make a big deal of letting her pick her favorite?  at 6 she should be playing independently except for maybe 15 minutes a day. kathy_in_wlsv2008-05-05 07:44:18

For me, I want to be able to play with my son.  I am all about independent play but the times I can have fun with Nathan are the ones I remember as the best.  I had a pretty good day last week.  We built an entire lego city and it was hysterical listening to his conversation.  It is not just his happiness, but mine as well.  He is very independent-he has had to be with just the two of us.  But, I am going to have years where I will beg him to spend time with me.  Gotta love teenagers. Now that he wants to, I want to enjoy every minute. 

Thank you all so much for your wonderful replies. I have to get the DD to school and then I can sit down and read them thoroughly and take them in properly.

I had a good night's sleep last night - 10pm to 5pm so I am feeling slightly less crazy. I haven't slept well for weeks...been waking up in pain through the night, every night.

Cordelia2008-05-05 14:41:35Much hugs to you & Neve, Cordy.i am so sorry for your struggles.  i got ra when my children were babies-  my daughter 2 years old, my son 2 weeks old.  i always told my children they had to be gentle around me because i hurt.  they were never allowed to jump on me or get near my feet.   they loved for me to read to them.  one on each side of me on the sofa.   sit in a chair outside and let her play.  many times i was on the sofa laying down and they were on the floor playing whatever.  i wish there were easy answers.  i can remember calling their grandmothers in desparation and neither one of them willing to help out.  my mom and mother in law are healthy and are still healthy they do not and did not understand.   just take one day at a time.  put on her favorite movie, watch it with her again and again.  tomorrow will be better! wonderwomantalk to Neve about your disease all the time they understand alot more than you realize!  God Bless You! wonderwoman Wow, well, reading through all this...all your ideas have given me ideas which is just fabulous!!! So thank you all for bothering to sit down and take the time to answer this thread. I really appreciate it so much.

Rocckyd - Neve is also very ACTIVE but does not want to play on her own at all. A friend of mine who raised two girls says she thinks girls want to be with you more, wherever you are, whereas boys tend to go off and play on their own more. I am also saying, 'get off me!' all the time. Now Neve was three when I was dxed and she had all the talking about being gentle and how much I hurt etc but it seems to have very little effect. She is 6 and being six. I don't have family who help out and that makes it difficult. I, like you want to be there for Neve also and believe I am but I also need her to occupy herself and do things on her own. Even around me would be fine but let me rest. An attempt to do calming activities...say like we both lay on my bed with books to look at,  turns into her jumping all over my bed and me. And even jumping around me makes me hurt. It always helps to hear from you Rebecca, you being a single parent also. Thank you for your thoughts on this.

doobgirl32 - you made me feel better describing how you couldn't keep up with your kids without RA. Cordelia2008-05-05 18:37:11It does just get so frustrating. I can want to do things all day-but physically it is a gamble. All I have told Nathan is to be gentle with mommy. I don't want you to think that I meant that you should want to play with your daughter. When I reread my second post it kinda came across that way. I meant that I feel like I am losing out on part of his childhood. He actually wants to show me everything now, and care about my opinion. I feel like dirt when I don't have the energy or time to listen.I know that all kids need their independent time as well-I just feel that Nathan has more than his share. But, the sooner he can understand that mom has limits-the better adjusted he will be.

Arrghh...I am just talking in circles here. Just know that you are a good mom. The fact that this is a concern of yours proves it. I think the counselor is a good idea-maybe it will help.It's okay, Rebecca. I didn't take it that way.

I do want to play with her and can't but most of all I want to get enough rest so I can cope and look after her. That is always my concern. If I can't take care of me then she won't get taken care of here. When I am flaring badly, I only have about 2 energy units a day...11/2 goes to her needs i.e. she is fed, bathed, has things for school, clean clothes, homework help etc...the other half goes to my care so I can care for her. Play is just not my priority when we are in this place. I have nothing left to give to anything but those basics. In that I may not get to feed or shower myself because I have nothing left for that either. I always put her needs first, of course, even if it means my self care is neglected. I often have to choose. Awful hey?

I know what you mean about feeling like you are missing out also. I feel exactly the same way. Yep, and NOW they care so much about what we think and later they may not at all. This parenting and RA thing sure is NOT easy...especially alone.

It's okay. I find your input so helpful always, Rebecca because of our similar situations.
when mine were little we had a quite time every afternoon and we all went to our separate rooms for 2 hours.  this gave me an opportunity to nap.  they did not have to go to sleep but they had to play quietly in their own rooms.   i did this even in the summers when they  were in elementary school.    wondermanI think mine have come to realize mommy does not feel well. My son, 3 years old, will notice I am not doing well and he will tell me to go to bed. I tell him "Oh NO... so you can make more of a mess?!" He just smiles and says "no." Yeah... that is the mischief in him. I cannot take my eyes off of him for a few minutes.

 

My daughter is starting to understand now too. But she has her times she does not. She notices when I am slow moving or hurting and flaring. She will lag behind with me and talk to me. Most times I have no idea what she is talking about because I am concentrating so much on walking and making it to my destination, but she does not know that I am not listening to her, because I will say "uh huh." "oh really" "nice" you know whatever pops into my head when I notice she has stopped talking and waiting for a reply.

 

Both of my kids now ask me if I am hurting. I am straight up front with them too. I will tell just how much or how little pain I am having when they ask. So... I am going out on a limb here and say mine kinda get it, but not completely. Just like anyone else who does not have this disease. But I know they see me struggle and cry and lay in bed in the evenings.

 

I hope the best for you, Cordy. It will take time for her to understand, but one day she will.

 

Much hugs to you.

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