883 posts in the category “Conditions”

Family activities with a health condition

Posted 5 months ago 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.


Gift guide: Gadgets for people with health conditions

Posted 6 months ago by

Who needs another scarf or coffee mug? With the holiday shopping season upon us, PatientsLikeMe members are crowd-sourcing a list of handy products and tools that can actually help people living with pain, fatigue and other symptoms of chronic illness or aspects of aging.

Check out the list below, for starters, and then join PatientsLikeMe or log in to chime in with your own ideas here in our general forum (share your favorite gift ideas with your loved ones who truly want to know what’s on your wish list and what could be helpful for you!).

What’s behind this gadget guide/wish list?

We were inspired to start this “wish list” because many PatientsLikeMe members have shared in the condition forums which gadgets and products have helped them function a bit better day to day. For example, here’s a peek at items people with Parkinson’s disease and ALS have hailed as helpful in their community forums (join PatientsLikeMe or log in for access to all links):

  • “rocker knife,” also known as an “ulu” or a “mezzaluna” knife “works great for chopping/slicing veggies, fruits, cheeses, etc.” and a “large-blade pizza cutter is great for cutting pancakes/waffles very quickly,” one member says
  • With a food chopper, like those sold by The Pampered Chef, “I can chop onions, peppers, garlic in no time,” another member says in this thread about kitchen knives for people with tremors
  • Silk pajamas and/or satin sheets may make it easier to get in and out of bed
  • Members have made other wardrobe adjustments, like: “Larger, easy wear clothes, a long-handle shoe horn and pre-tied or slip-on shoes, covered hairbands looped through waistband button holes, an old shoe button hook & large paper clips in zipper grips for those days the fingers refuse to work” (Hint: Here’s how the hair elastic/button-hole trick looks… pregnant women also use this hack)
  • “I use elastic shoelaces so I don’t have to tie/untie my shoes,” another member says
  • “I can no longer button my shirts. This has led to me showing up in t-shirts for events that clearly require more. Then my doc suggested MagnaReady shirts – they have magnets that are hidden behind fake buttons and buttonholes. Genius!
  • For writing: PenAgain – alternative style pen, eliminates the need for a firm thumb-forefinger grip to write (available online and in office supply stores).
  • Devices that “cinch” your shoelaces (regular or elastic) closed so you don’t have to tie your shoes each time. An example is “lock laces.”
  • Also check out the products mentioned in our cleaning/laundry tips article (and the comments section), such as dust mop slippers and a garden kneeling pad (to make cleaning floors a little more comfy/easy) and a folding/camp stool to keep in the laundry area and/or kitchen when you need a quick rest. Consider asking for gift cards for a cleaning service or a new gadget (think: lightweight or robo-vacuum) that’ll make cleaning easier.

Drug store gift cards may not be the most exciting holiday present, but they’re very practical for most patients and can usually be used toward prescription medication co-pays (check with your local store to make sure).

What kinds of items would you add to this list? Join PatientsLikeMe or log in to see and add to the “gift guide” thread (and remember, don’t be shy about telling your friends and family what would be helpful to you this year!).