coping with fibro and a family to take care of

I am new to this forum and I was wondering if any of you out there have small children that you also have to take care of in addition to your self and your illness.
I have 5 children ranging in age from almost 16 to 6 and I find coping with their needs to be so hard sometimes. I want to be a good mother and be their for them, but how can you be nice and understanding and patient when you are in so much pain. I remember hearing a phrase said by someone famous, "you can only act a little nicer than you feel" and so if I feel horrible how nice can i be. I would really appreciate hearing how other deal because I feel like I am drowning most of the time.
Suvivor Power

Hi Oneday,

as your name says it.  One day at a time.  That is all that you can do.  And I agree with the above post.  Keep saying "I love you".  That says a lot. 

You have a lot to deal with.  I would suggest putting about an hour aside each day for just you.  Take a nice bubble bath or pamper yourself in one way or another.  You need that to keep sane.  It will give you more energy too.  I do a lot of meditation.   That really helps to center me.  I highly recommend that for you too.  And with practice, it doesn't take much time to get into a relaxed state.  It relaxes your muscles which helps the pain to subside.  And get a bed buddy.  You can find them at walgreens.  They are a tube filled with rice or beans.  You heat them in the microwave adn then put them around your neck.  They relax the muscles a lot. 

I am so glad that you have joined us.  Keep posting and know that we all care.  If you get a chance, get familiar with the thread called fibro101.  There is a wealth of information on that thread.  It answers a lot of questions. 

Hugs, Karen

Hi, oneday!  Well it can be done.  I guess I didn't take time to think about how I felt.  I knew I had my children and I knew I had to take care of them so I worked around my disabilities. 

 

I was stricken with Crohn's disease when my children were 4 years, 2 years, and 6 months old.  Crohn's causes a lot of diarrhea and I couldn't be far from the bathroom.  I couldn't take the kids to the park, on picnics, etc.  But, I could read to them, sometimes play with them, do puzzles with them, I had a table filled with coloring books, drawing paper, crayons, etc.  Yes, I told them all of the time how much I loved them.

 

By the time they were around 9, 11, and 13 I developed fibro.  They were older so they could now give me a hand.  I was as active in their school functions (room mother and PTA) and I attended all of their sporting events that they were in.  These are all things you can do with fibro.  

 

The best thing about all of this illness that I could find was I was home for my children.  I was fortunate that I wasn't working anymore when all of this hit me.  My children could count on me being there for them, they knew there would be a good meal put on the table for them, too.  It was hard but it can be done. 

 

I did feel guilty because they didn't have the childhood I had imagined and dreamed they would have, but you know what?  They are now all adults and they told me a few years ago what a great childhood they had!  So, remember what a blessing they are and do what you can do for them.  The love  you give is what means the most to them.  And, above all, don't feel guilty.  You didn't ask for this problem but you can make the most of it!

 

Sherrine

what is the video? can we access it?
Sue

Hi onday..

Everyone else already said about exactly what I would say too. I'm so sorry you are in the condition you are now, but you did find the right site for support. My kids are grown now but I can remember well all the times I just could not cope. I really leaned on my husband and family for the support and was so grateful. They grew up and as they became adults they more understood the pain I was in. Unfortunanlty , my youngest daughter is stuck in the nightmare too. You can teach your children how to handle the stress of your pain and they will be strong. Because you can't pick them up and sometimes have to say NO, does not mean you are a bad mother. You do your very best and that's all you can do. Your kids will understand and don't be afraid to enlist your family to help. Grandma and Grandpa's are great for taking the pressure off.

I hope you feel better. Take care and keep sharing. It helps to let others know how you feel and to know that all of us here are dealing with similar issues.

Gentle Hugs.
Steph

Trying to stay afloat is a good analogy, somedays are so hard how do stay calm and not lose it, sometimes they are my greatest strentgth and comfort and sometimes i want to walk out of the house because the noise and the tension is so great it physically hurts me. I have headaches all the time and i need quiet and that is not possible in a noisy house with five children and their friends. how do you stay nice all the time the guilt is overwhelming when i lose it or i can't be the wife my husband needs, i fall asleep most nights before he even comes to bed because i can't hold on any longer. what sleep i get from the clonex i take is the only peace i get. the only time i am not in pain and sometimes that doesn't work either.
OneDay