Sunday, March 7, 2010


The sun was glorious today and it warmed up to about 50 - downright balmly for March in New England! My husband and I decided to get out and enjoy the weather with a walk. I suggested we do our "long" route, which is about 3 miles. My husband said "OK, but as soon as your feet start hurting, we're turning around," as my feet have hurt on nearly every walk, long or short, lately.

It turned out that my feet didn't start bothering me until after the 1/2 way point, so we kept on our way. By the end of the walk, I wasn't as achy as I had expected, considering that was the longest walk I'd taken in at least a month. Still, I needed to rest for a bit before going out to lunch, just to get my feet back to normal.

Since I started feeling the effects of being off the Arava, I've had to get back to this idea of balancing rest and activity. When I was in remission, I was in this sweet place where I could pretty much do whatever I wanted. Stand up baking cookies for 4 hours on end? Sounds great! Do 30 minutes on the bike in the morning, 20 minutes on the elliptical at lunch and walk around town at night? Sure, I'm young - let's do it!

These days are different. I'm still lucky enough to be able to get some exercise most every day, but it always needs to be followed by a rest. Like most RA-ers, I get frustrated by this sometimes. But I know that it's really the best thing for me, since if I push it, I'll pay for it.

So this got me thinking about the energy of kids. Take my 4-year old nephew who pratically bounces all the time. He may be an extreme example - but he is just a ball of energy. I usually try to get him to play Legos or Lincoln Logs to give me a bit of a break, but that only lasts so long. I try to play as long as I can because I feel bad about saying "I can't." 

Here's what I'm wondering: if it frustrates me, a logical 29-year old woman, to have to take so many rests - how does a 2, 3, 4-year old deal with it? Does your child just get used to it because he/she grows up only knowing that? Or does he/she struggle? If so - do you feel guilty about your child's struggles? (Not saying you should feel guilty! I'm just wondering if you do... if I would... ??)


  1. Yes, they get used to it, and Yes, the word mother is pretty much synonomous with the word guilt, so there is that.

    I always tell people that the best way I can explain my son adapting to RA is this:

    Growing up, I had a friend who had deaf parents. On top of that, the mother's eye sight was failing miserably. We often wondered how her parents, especially her mother, managed to raise her. Upon walking into their home, you would witness their communication style. The daughter would automatically go to her mother, touch her in a way that alerted her to her presence and then they would begin their own way of communicating. At times, the two would sign into each other's hands. It was obvious that my friend had adapted to her parents' disabilty, but that they would've had trouble watching any other kid.

    That is how it is with my son. He has a longer attention span than most kids. He knows there are days we have to have "Movie days" or "book days" b/c I can't walk too well.

    He does great with it, and yet I always feel the guilt. I know that I am disabled, but he is not. The best I could do for him was make sure he is enrolled in a part time (9 -12) preschool program, so he can have those few hours of the day when he is spending time with other non-disabled folks.

    There are some physical challenges we have, but you also have to look at everything you have to give a child: 2 parents whom are very loving, educated, knowledgable and ready for him/her.

  2. That makes perfect sense. I figured as much - just wonder how it works in practice ;-) As for mom=guilt - I must be ready for motherhood because I have the guilt thing down!!

  3. With my first child we lived a few blocks from the park and the pool and the library, so we walked everywhere then. Then we had to move and our new house was miles from anywhere, so we drove all the time to those kinds of places, which was a blessing in disguise.

    Nowadays, the kids all know that no matter what they ask, it will probably be about five minutes before I can get started with it, no matter what it is. They know that some days are going to be low energy days where they either have to play the running games amongst themselves and that sometimes I'll be running alongside them. They know that sometimes I'm too achy tired to get out of bed right away and that Daddy will have to take care of their breakfasts or that they can come snuggle up with me in bed for an hour or so.

    It's not as bad on them as it sounds, truly it's not. We have a lot of friends and family around to take up some of my slack. We run around in packs at the park and the science place and the zoo. There's always another mom or dad around to keep walking with them or take them out in the woods if I'm relegated to the bench. There's that saying "It takes a village to raise a child." Well that goes double for us. Find your village and you'll do all right. :)


I welcome your comments and experiences! If you have any questions, I will try to get back to you as soon as I can.