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how are other moms with lupus managing?

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Posted 1/23/2008 12:58 AM (GMT 0)
I'd really like to know how other moms with lupus try to balance taking care of themselves and resting and also being there for their kids.  When I first got sick with my lupus symptoms my kids were 2 and 6 - they are now 6 and 10 (I can't believe it's been that long already). I have great kids who are pretty independent and can do a lot for themselves now and they help out when I am flaring.  I'm just really struggling because I want to be an active part of their lives and I don't want to miss out because I'm in bed.  In the meantime I know I'm probably not getting the amount of rest I should get.  My youngest started kindergarten this year so I try to get some rest during the day but even that isn't real easy (thankfully I was able to quit work over a year ago).  By the time I get things done around home or run errands it seems like it's time to pick my kids up from school.  I'm trying to figure out how to fit things into my day that I enjoy too to make my life more enjoyable. Things have been a little rougher lately too which is probably why I'm struggling more than usual.  I'm still not recovered from my holiday flare.  My son has JRA and he's playing basketball now which makes his pain level increase.  My daughter who is usually very healthy has strep throat right now and was so sick with it she was up a lot the last few nights, so neither of us got much sleep.  I've got a very supportive husband but he works very long hours during the week. How do you other moms do it?
Posted 1/23/2008 1:35 AM (GMT 0)

Oh (hippi), bless your heart. I was fortunate enough to not get sick until my son was grown so I can't answer your question but I do want to tell you something. I've been fortunate enough to get to know you a little bit and I can guarentee you that you are Very involved in your childrens life. Somtimes it doesn't feel like it because you have to get some rest but, you take your kids to the lupus walk. you got to the games. even holding your little girl when she is sick and driving your son clear accrossed the country to get the help he needs is being involved.

Your kids are lucky. They could have a drunken druggie that couldn't give to hoots about her kids! God knows there are enough of them out there. There are people out there that work 80 hours a week and yes they have money but they have no relationship with their kids. and their kids would much rather throw a football than get an occasional phone call from their parents who are too busy working. I have seen you put your health on the back burner so your kids could have a nice vacation. Some parents don't ever take their kids on vacation.

Sick or not sick we can't always do all the things we want to for our kids. Kids are very understanding and as they get older they will appreciate everything you have done for them. I'm sure they have a pretty good idea by now.

Don't make long term plans. You never can tell if you will be up to it. Try spur of the moment things on your good days. Take pictures talk to them. Kids don't need that much. They need to know that they are loved and I know your kids already know that.

You didn't ask for this disease but you have it. You need to get rest. and yes when you have sick kids you stay up with them no matter how you feel. That just goes with the territory. Your daughter wants to be close to you when she is sick because she nows she is loved. You've done a great job. enjoy the good times. Trust me all parents look back and wish we had done more or something different. 30 years from now you will be setting in your rocker lol saying I wish I had done this or that but hey we do the best we can.

So stop kicking your self girl and thank God for the good days. as a matter of fact you are such a good mom I was wondering if you would be interested in adopting me??????????

love ya

much

carol

Posted 1/23/2008 1:41 AM (GMT 0)
That is a good question. I have 6 kids (DH has 3 and I have 3). They range from 22-28. I've been diagnosed for 5 years. So, I pretty much had them all raised by the time I saw serious progression of the disease. What bothers me most is not doing all the activities I want to with my DGS's (ages 2 and 4). They are "water bugs" and I LOVE to swim. But I can't stay out side for very long or I pay for it with a major flare. Same with the snow and cold temps. I know what you mean, after a day of work I am beat. So everything boils down to choices. If I do this today, then I have to be willing to miss that tomorrow, etc. And of course, there is always the completely unexpected flare - when even the best laid plans go straight out the window.
Sorry, your thread ended up turning into my rant!
But, I applaud all you younger moms (and dads). I can't even imagine the fatigue that you have to put aside because the kids needs come first. I wish you well!
Posted 1/23/2008 2:03 AM (GMT 0)
Hey ((((((((Hippi))))))))), DON'T waste an ounce of your energy on guilt!!!!!! Figure our what you CAN do and act like that is what works. The kids really read into your guilt and its not good for them or you. I was not as sick as you so I REALLY feel for you moms with young kids. Mine just knew that I had limited energy and they could only sign-up for one sport. . . and not all at once. They really do learn the game and they find a way to adjust to it. We did, though, have evenings at the pool or beech, as I could tolerate it better. I just didn't announce it ahead of time. I'd kindof plan it and if I still felt up to it, we'd do a "last minute" outing with them swimming and me lying on the beach/grass watching them. We also do campfires in the backyard in the summer evenings so I'm out of the sun. Kids are very resilient and if they know the groundrules, they really do figure out how to adapt within those parameters. Your confidence in your limitations will go a long way to help anchor the positive attitude. Sorry you are dealing with so much right now. Blessings!
Posted 1/23/2008 2:50 AM (GMT 0)

Oh hippimom...your post made me cry!
First of all - don't take a trip you didn't pay for (guilt trip).

I have a son that is a senior in college and a daughter who is a senior in high school.  My son has ADHD, OCD and ODD.  Why am I telling you that?

Because early on I had to learn that you make the best decisions you can and do what you can and let the rest go.  I think that applies to alot of areas in life.  (By the way, he's doing fine - on the dean's list.  Just didn't know if either one of us was going to survive his childhood!  LOL)

I'm already panicking because my son's graduation ceremony is four hours away...I need to plan two graduation parties...and all with that "what if" cloud hanging overhead.  What if I'm in a flare, what if I have a migraine, what if I'm exhausted.  What if?  I'll do it anyway...just like you do with your kids.

I'm a business analyst by day.  I work eight hours and drive 1.5 hours a day.  By night, I'm a photographer.  Guess who's senior pictures aren't done yet?  My daughter's.  Can't seem to schedule a time when I'm not hurting or exhausted.  She's not complaining about it.  We got the one done for her yearbook and she knows we will finish them...it might be spur of the moment - but we'll do it.

We moms put so much pressure on ourselves...and we set ourselves up to fail on a daily basis...add to that being a "sick mom"...and we REALLY do a number on ourselves.

Here's the thing I can tell you for sure.  Your kids are learning compassion, and acceptance and patience.  Along with a WHOLE bunch of other things that are important in life like treasuring the little things, enjoying time with their families and learning to help others.  Not to mention strength and courage.

Kids will surprise you.  They are very intuitive...and, if you let them, they can help more than you know.  They are going to remember the times you played with them and held them when they are sick.  Not that you picked them up from school or practice every day, or had to sit in the shade to watch them play.  They will remember that they looked over and you were there for them.

Hope this helps...

~Kim

Posted 1/23/2008 2:37 PM (GMT 0)
Thank you for all of your wonderful and supportive words - you made me get teary (but in a good way). All of your responses also helped me get a little more grounded in reality too - sometimes it's hard to get a clear perspective when you are trying to muddle through something. Even though I would never wish for kids/grandkids to have to deal with an ill parent or grandparent, all of you are right that it makes kids very compassionate and aware of others. When my kids want to do something they always take into account how I'll be feeling - they say "If you are feeling good enough can we...?" I can tell they also like helping and they like to do things like rub my feet with lotion. They are very wonderful and compassionate kids. I need to try to look beyond the moment and step back and look at the bigger picture. Like all of you said, the biggest thing is that our kids know that we are there for them and that we love them.
Posted 1/25/2008 1:08 AM (GMT 0)

Hi Hippimom,

I understand how you feel. I have a five year old and I started really getting sick about the time she was 3. I feel robbed of two years because I spent most of them in the hospital while doctors finally figured out what was wrong with me. Kids understand more than we think. I think we are often tougher on ourselves. I try to take it one day at a time and do as much as I can. Trust me kids are very kind and loving anbd they understand more than we often give them credit for.

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