You know those days. You want your body to do one thing but it's not agreeing. It's only 7a.m. and you've dropped your coffee mug and shattered it into a zillion pieces. The broom handle is way to thin in diameter for you to grip without stabbing pain down your fingers. You finally sit on the floor because squatting is out of the question. Your knees are so weak they'll buckle and you will literally have a piece of the ceramic mug lodged in your ass cheek from falling back on it. After a half hour all the pieces are picked up. You sit there. You curse this stupid disease because you can't get up. You crawl, trying not to put weight on your knees, which means weight on your wrists, switch back to the knees, no now the wrists. You get over to the chair and you pull yourself up. By now you are fuming. You are angry. There might have been some yelling, definitely a curse word or two thrown in there. You stop. Out of the corner of your eye you see your child watching you in horror, tears welling up in her eyes.
Anger: Yes your child saw you angry and upset. Yes your child probably thinks you are angry at them. Sit them down. Explain that you are not angry at them you are angry at the disease. Give more examples than what they just saw. You are angry with this disease because you sometimes can't go to soccer games or dance recitals.
Permission: Give them permission to be upset. They don't have to be strong. It's ok to be frustrated and cry. Ask them what makes them angry about the disease. Tell them you understand that they can have bad days too
Listen: Look them in the eye. Pay attention to your body language. Is your body facing them or are you off to the side playing with your phone or texting. Let them feel that at that moment in time, they are all that exists.
Teach: Teach them the basics of the disease. When children are scared they tend to make things up in their head. You and I both know RA isn't contagious and you cant catch it from someone. Your child may not know that. They may also think that you having this disease is their fault. Another important topic that may come up is death. Reassure them you are not dying. You are not going anywhere. Avoid saying that you don't know if you will ever be better. Stay optimistic as far as they are concerned.
What not to do
Do not make them into mini adults saying "ok Sammy you are the man of the house now because daddy is sick" They can still help you out a little more than usual but they should not bear the same responsibilities that you do. The boundaries will start to confuse them and they will act out.
Don't discourage them. We know this is a silent disease and most of us don't look sick. Try not to say things like "What's wrong with you? Can't you see mommy is sick and can't play with you?" Rather "Mommy would love to play with you. Right now I am tired. Can you ask me again in a little while?"
"I don't know how much longer I can do this." This is a opportunity to teach your children how to deal with life when it's not all roses. "Daddy has his good days and his bad days." It's ok to talk to a therapist if you are feeling overwhelmed.
Smileys
Make some signs to hang on your bedroom door for those hard days. A red smiley face means mommy needs to get her rest. A yellow smiley means come in and give mommy a kiss but she's still not up to playing. A green smiley means come in and we can play a quiet board game or cards. Have the children help you make the signs. Glitter always makes things fun!
One more thing I would like to add is that as of late I have had to use a wheelchair or a cane. I was worried about the embarrassment it would bring to me or my daughter. My favorite color is pink so what did we do? Pink glitter and rhinestones decorate both. My daughter was enthusiastic to help. Now when I'm in the chair she shows it off and is not embarrassed.
I know everyday life is hard. This is just a few suggestions on how to help your family cope. They have helped for us and I hope they help you.
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