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· Registered
9 Posts
Discussion Starter · #1 ·
My kids are 3 and 6 and I have had problems for 2 1/2 years...I was SO active before I became ill. I give everything I have to these two kiddos but sometimes my everything is laying in bed (which is rare but still...) How do you address your illness issues with your kids? What do you do so you don't feel guilty about not being able to do everything you used to be able to you think they'll be OK? My father became ill when I was 16 and died when I was 20 -- I remember it being SO HARD and not understanding and I get a sick to my stomach feeling when I think of the stress it probably puts on MY kids!

Thanks for your input! It means a lot! Stacy

· Jen
316 Posts
Hi, my kids are a bit older 14,10,6 but I know what you mean. I've been pretty sick for 2 1/2 years straight, missed a lot of kid events and such but we are learning how to cope better now.

First, I do get counseling on how to deal with a chronic illness and the changes it has brought to my life and family - this has been very helpful and gives me good ideas/tools.

We have come up with different kinds of things we can do during quiet times when I'm not well.

I recently stopped working which has made more time for the kids which they like (there was very little time for them prior as I just worked and rested).

We implemented a family game/movie night which all the kids seem to enjoy and look forward to.

We also had to cut back their activities a bit so my hubby can manage if I can't drive. They are still very active but it was out of control before.

My middle daughter is the worrier so we sit down with her every so often and ask if she has questions, she use to want to 'fix mommy' but now we talk to her 'and let her know she is doing all she should be for a 10 year old girl. She seems to be handling things better.

The guilt seems to have gone down since I stopped working and can be there for them more. And if there is something I need to attend I rest the entire day before if I can. Try not to feel guilty because it is not your fault. As your children grow so will there understanding.

I hope you are feeling well.

· Registered
26 Posts
kids, yep i have them to, 12 ansd 11.. i have been " ill " hate that word.. for a few years now, and have had to slow down so much it's un true....we were a very active family, outdoor kidda people, my world at the moment is four walls.... hard to explain to kids yes... but one a good day we may go for a walk with the dog, i will take them to the park or basketball court, i can't join in but take a video camera so they feel i am... on a bad day, we make up games, write a play and act it out, cards (i might add they are very good at poker huh they win all the time lol) it's tiring most of the time but they have a understanding that the doc's have to get it right for me,and i will do what i can when i can....lots of love cuddles and smiles, seem to help to..... had a hard one this week as a very good friend of mine died last week of cancer and her girls are the same age as mine....they are shaken and keep asking if that is going to happen to me..... but kids have a better understanding about things then we think, a little straight talking, a little not so straight talking...

a little at a time, all they want is love and a smile, a cuddle.....
do what you can and when you can't shower them with love....

not much help i know but thats what i end up doing :)

· Registered
408 Posts
Hi Stacy,
What can I say?it's hard.I have a 14mth old,5year old and one of twelve.I am lucky in that I have a husband who can do the more energetic stuff with them,like swimming and such like,but if you're on your own(don't know if you are)it's much worse.I think mums always feel guilty about something to do with their kids,regardless:) but I'm sure they will be fine.We live in a society where we are now expected to occupy and fill our children's time with all manner of stimulating things,but when I was a child we were 'left to it'more and I don't think that was such a bad thing,we certainly developed more of an imagination,and I grew up okay:blink: he!he!
So,most days I have no energy but I have decided to get their friends round more,they love it and it takes some pressure off me.If I can't do much I will focus on sit down stuff like painting or playdoh,uno or monopoly.When I am up to it,rarely,I take my youngest to play group so she is getting 'active'play.I am also starting to rely more on friends for a bit of help.I am lucky that my eldest has aspergers and doesn't notice that I am poorly,which is a blessing really and my five year old just doesn't notice!
I agree with Melanie ann in that kids need lots of cuddles and just having mum there means everything,

· Registered
4,351 Posts
Hi, Stacey

I was dignosed with SLE just before Christmas. I have for boys 2, 5, 7, 8 and have been having problems since my first pregnancy. Before that I was full of life with only the odd backache or headache!

The kids do keep me busy with school clubs etc.. I do find it good to have there friends round. This may sound odd wanting more children in the house, but I find that they amuse themselves more and all I have to do is keep the food supplies coming until its time for friends to go home - then its time for bed (7-7.30). It does take me about 1 hour to do the bedtime routine though, but bliss when they are all asleep. Some of my friends and family find it odd that my oldest 2 still go to bed as early, but this routine helps me, my kids wake up same time every morning even after late nights.

I do find things tough but boy am I glad that I have them all!


I feel guilty, but not about time spent with them as I think they have more than other kids to with healthy parents. I don't work so that helps with having time for the kids and my husband works from home (helps but sometime hinders and causes chaos!). My guilt comes from lack or energy and tiredness which can lead to being grumpy with kids without good reason!

I do find that now that they can play boardgames together without my participation and love playing in the garden. I watch them from the window indoors so I can keep and eye on them and their behaviour, - they are good though. They all love drawing. I suppose the idea would be to keep them busy but with simple practical things and let them get on with it. Mine do have to tidy-up themselves even after craft activites (with only a little help from me). I have always bought them up to have cuddles,love and parental attention but that they do have to be self-sufficient to a point (depending upon their age and ability and safety factor).

· Banned
196 Posts

My lupus really kicked of about six months after my second child was born, the time when they were small was incredibly hard. (They are now 15 and 12)

The guilt is a really difficult thing I think, partly we are predisposed to feel guilt where our kids are concerned even without an illness that can complete knock us for six.

I wasn't diagnosed for several years, I think the most usefull advise that I could have been given if I had been when the kids were really little would have been to be nicer to myself, and less demanding on me, oh and that kids really are quite resiliant.

If you have friends/family let them help out with the kids and any other stuff, (housework, shopping), cooking) If you haven't maybe look at organisations or support groups that you could tap into.

It's really ok to cut corners to make life easier, especially with housework and stuff, I know that with littles stuff to do is just neverending, but some stuff can be sidelined, I guess I mean prioritise and don't be hard on yourself for not getting everything done.

Take oppourtunities to get some rest, a good video that you can curl up with the kids, or I remember finding giving them jigsaws or puzzles to do on the floor while I laid on the sofa, providing I was giving them some feedback by way of chatting they would be occupied for a little while and I got a bit of rest.

In my experience life did get easier as they got a bit older, in many ways, certainly less exhausting although you get a new set of challenges! Definately easier when they were both at school!

You have to take care of you in order to take care of them, and if things are really difficult for you then please ask for help. How well is your lupus controlled, I hope that you have a good team of docs behind you,

Best wishes for bright days ahead. xxx
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