6 posts from January, 2019

Family activities with a health condition

Posted January 4th, 2019 by

Your chronic health condition may steal your energy, but it shouldn’t rob you of family fun. Jeanette Alston-Watkins was diagnosed with lupus (SLE) when her kids were 11 and 14. Check out this Q&A about activities she enjoyed with them despite SLE. Try some of these with your children or grandchildren over the upcoming holiday break!

(Check out more of Jeanette’s story and perspective on parenting with lupus.)

What are some activities you did with your kids when you were fatigued or weren’t feeling well?

When the kids were growing up and I just was exhausted to the point where I could only make it to the couch, we would play board games, video games or card games. Sometimes, I would make them read to me or I’d read to them.

If I was really hurting, I would have them cook for me, and I would watch them add the ingredients. It taught them how to cook, while helping me out without them even realizing.

Easy, relaxing things that wouldn’t aggravate any symptoms was the way to go for me. (See some of Jeanette’s favorite recipes that work well with her lupus.)

And what kinds of activities did you and your family enjoy when you were feeling well?

When I was feeling good, the sky was my limit. We were always out doing something. I would go watch them at sports practice, I would exercise with them, go rollerskating with them. Sometimes I would just watch.

We would go to a movie, we would bake together, walk around the block together and talk or just go get some ice cream.

My favorite was when I was feeling well, all my kids’ friends would come over to my house just to hang out with me and tell me stories. I’d take it all in and pay attention to sometimes 10 stories at a time. I miss those days. Sometimes we even had sleepovers so the kids could spend more time with me. Ours was the house to be at because I always listened to each one of them and gave them advice.

What else would you say to people with lupus who feel it’s limiting them and their family?

Just because you’re feeling horrible, you don’t always have to seclude yourself. Try to stay moving because it helps your muscles, bones and brain.

While you’re feeling well, you don’t always have to use that energy to clean — use it to enjoy your kids. The mess will still be there, but the kids grow up and move out. You want those memories of the time you spent with them, not the clean house where you couldn’t do anything in it.

Enjoy every moment you have, and push through the rough days as the good days are right behind them.

What kinds of activities do you enjoy with your kids or grandkids despite your chronic condition? Join PatientsLikeMe or log in to connect with thousands of members living with lupus or other health conditions and swap ideas about parenting and family relationships.

Advocacy 101: See our new guide!

Posted January 3rd, 2019 by

Interested in getting into advocacy for your health condition community this year? Raising your voice to boost awareness about your condition or the reality of being a patient takes courage. Yet it’s pretty simple to get started with advocacy, so together with members of our Team of Advisors (a team of highly active members and advocates in their condition communities), we’ve put together a new guide called “Advocacy 101.” See/expand and print the guide here!

PatientsLikeMe advocacy guide

More than 30,000 PatientsLikeMe members indicate that advocacy is one of their interests on their profile. Join PatientsLikeMe or log in now to find and connect with these members here (filter the list to show others with your same condition using the “Condition” search field in the left-side menu).

Have any advocacy pointers you’d like to add? Add a comment below or log in to share with the community here!