Motherhood and rheumatic disease

The whole week is supposed to be Talvilomaviiko, which is winter holiday. Most of the people go for skiing holidays up to the north. I would go as well, but my husband doesn't have any holiday. Kids will be then with me at home. Anyway, the older one has still her practises. I am excited to have my kids at home and also I am pretty scared at the same time. It has been long time when we have been only together and doing stuff what we really want. But on the other hand it will require my full attention, no rest time. I think I will be quite exhausted in the end of the week. It has been first half day and I am stressed out.

Quite often I think that motherhood and rheumatic disease doesn't go together. You cannot sleep or rest whenever you really need. You have to make food, you have to go out if you really can. It could be really tough. On one side I see it as an advantage, because I am forced to move. On other side you do no have choice.

As I was diagnosed only after my first child was born, I didn't get the chance to choose between having or not having kids. Of course I am absolutely grateful for having my kids, but I am not sure how I would decide now. Kids are bringing happiness but the fear for them and the responsibility are sometimes overloading. I would feel more responsibility that there is open future and whatever can happen. Autoimunne diseases vary between mild and life-threatening.

Anyway, as a mother I can tell some advices how to cope with the disease and having kids.

• I have to set realistic expectations; do only things what is really important. Perfect doesn't mean happy kids. 
• I set my priorities. In that case it will be always my kids. Which means that I have to take care of myself to be able to take care of them. Don't forget!!
• I try to prepare early enough. Even day before. I use any time to prepare for the case I wouldn't be able. I do not want to stress out more than I need. 
• Don't worry to say no to other people. Who wants to understand, will understand.  
• Eat well.
• Exercise. But again only to the level of happiness. If you kill yourself, who will take care of kids. 
• Smile, play. Anyway that's what the kids want and you need it.

I cannot write about having rest or sleep, because until you have small kids, you really cannot take a nap when you need. Only I can suggest is to go to sleep when the kids go to the bed. Don't waste the time. 

I would be so happy to hear opinions and ideas of other mothers with lupus or scleroderma. What are you doing with kids? How do you solve when you feel very sick or painful?

 Have a nice day!!