[cjmclaughlin]

HI,
I'm a 32 year-old stay at home mom of a wonderful little girl that is 4 and a great little boy that is 3. They are less than a year apart and are each others best friends and they love to play together. My husband works long hours and is often gone during the week from 7am-7pm. When I'm not having major problems with my lupus then we see friends 4 days out of the week. We go ice skating and do lots of activities that the kids love. I usually can function through the pain in my joints as I feel so guilty that my children need to suffer because of my illness. The last year I have gone from taking Plaquenil to multiple meds (Mobic, Xanax, Lexapro, Lamictal, Rozarem, Calcium, Plaquenil, Toprol, Cholchicine, Prevacid and Vicodin PRN) along with multiple doctor apts, PT/OT and now splints on some of fingers. My children are awesome and I try to not let it affect them at all but I feel so guilty. The last two weeks I have been overcome by the Lupus and can barely function. Prior to this, even with all of the problems, we still were out of the house and active and going on with life as normal, however these past two weeks I just can't get going. The pain is really tiring me out but I can't take the Vicodin when I am home with the kids and really hope the cholchicine will take effect even though it is a trial. My family lives over 3 hours away and my friends keep wanting to help out but I feel like I am a burden to everyone. I just want my kids to have a mommy that has energy like I used to last year. I feel so bad for them...and don't even get my started on how I've neglected my husband. Everyone tells me that I need to slow down and that it won't hurt the kids to stay home and watch TV for some time but when they are used to going it isn't an easy adjustment for them (or me). I'm so blessed to have had my kids when I was doing good but now I am so upset that it is affecting their childhood...why couldn't it wait until they were at least in school.
Well, I guess I babbled and if anyone has read this whole post then I appreciate it. Is there anyone else that feels guilty that their children don't have a "normal" mom and how do you handle it? To make matters worse, my MIL has MS and has been in a wheelchair since my husband was an infant and their whole family is dsyfunctional and I don't want that to happen to my family.

 

[Katharine]

Hi there,

I think everyone, without exception, feels guilty in some way for how their lupus affects their family and their kids.

BUT, and I have to stress this, kids don't necessarily notice if you do slow down or do things in a different way. I grew up with a very sick Mum and we had no idea whatsoever of what she was going through. I have been ill since my own kids were small and they have never noticed that I am different to anyone else. They just no that somedays I can't do things and if we say no, it means no. My husband and I work closely as a team and he is instrumental in not making me feel guilty, in not making a big deal out of things and in coming up with kid and Mum friendly alternatives. We never make "promises". We always say that we'll do so and so IF we can (and that may be for any number of reasons including me). Kids need to learn to be aware of others around them, to learn respect and that no means no. None of that damages them in any way, it's all part of their education.

I think that a lot of the problem here may be that YOU yourself haven't accepted things as they are today. It is easy to look back wistfully on the past and how we used to be - and, don't get me wrong, I've fallen into that trap too - but generally it is a waste of time. It's like wishing that you hadn't lost your job but if you have the only thing to do is look forward and adapt.

I don't mean to be harsh on you at all and yes, I do really understand where you're coming from (as do most other people here) but learning to adjust, pace ourselves, take a step back and savour life in a different way are all essential tools to living better with this disease.

There is no way in the world I could ever be who I used to be. It is just not going to happen and even if it were possible I would have to take massive (medically unacceptable) doses of meds to do that. I would be pushing through my disease and making it far worse in the long-run. It is a disease that we must NOT push through - when it demands rest, it means it, otherwise we can pay heavy consequences.

Katharine

 

[Katharine]

P.S. I missed the point about the MIL in a wheelchair - I hate to say this but I know plenty of people in wheelchairs or worse that really don't have dysfunctional families! A lot is to do with that person's attitude (and their partner's).

 

[cjmclaughlin]

Thanks Katherine for your honest thoughts. I really do appreciate and whole heartedly agree with what you are saying is that I need to come to terms with where I am right now...to be honest though I am having a hard time with that. I guess part of it is that I begin to accept something and then another problem arises. I'm just pissed off with being 32 years old but feeling like I am 60. Can I ask how you came to terms with it all?

 

[Katharine]

That indeed is very difficult. I don't think that anyone fully comes to terms with it but we learn to cope better with time. As you say, there are times that it seems never ending and you wonder where it will stop. I think we all go there and this site is invaluable at times like that for providing support and advice.

The most important lesson is to learn to take life "one day at a time". That's not that easy to do when we have been brought up since birth to be planning years ahead. It does make it a lot easier though if you can do that.

Another thing is to always express your thoughts and feelings, don't keep them wrapped up. A lot of people can't even begin to understand where we're coming from on that and that's why the support here is so precious. I'm one of these people who doesn't usually say much when the going gets tough but I have a few close friends I do talk to and coming here (even if not to write about myself) helps a lot too.

Katharine

 

[lazylegs]

Hi,

Accepting help from others can be a two way street. On my really bad days someone else would drive my girls to school or take them for the afternoon. When I felt good I would bring their kids to my house for the day. If I was going out i would call and see if they had an errand that needed to be done in the direction I was going. If you can develop a give and take situation with someone maybe you can get a little more rest.

My oldest daughter was used to mom being able to do everything. Suddenly that all stopped. She didn't understand at first but did adjust. I got more creative with our indoor activities. I also included the girls in the planning. I would say it was bowling day and they would go around and gather items to use as bowling pins with their nerf ball. I could be on the couch or bed while they exerted all their energy. On days I was really bad I would say it was their turn to read a book to me. The stories they made up from the pictures were wonderful. We were still together but the activities weren't as demanding as taking them to the park or riding bikes.

Katharine was correct in saying to take one day at a time. Also don't push through the pain or exhaustion if you don't have to. Pushing through today may mean 2 or 3 more days down. Waiting until tomorrow might mean only one afternoon lost. In time you will learn what works for you.

Take care,
Lazylegs