Family Time

[daisy]

Hello everyone -

Can you share how you handle family time? I know that so many of us are unable to go out with our husbands, significant others, children due to our illness.

So, what creative ideas have you come up with for family or spouse/significant other time? With the upcoming holiday season, I am also interested in how you handle holidays with your

family. Do you travel? How do you handle trick-or-treating with your kids? How do you explain to extended family what your limitations are?

I will be writing a new column in the newsletter titled "Family Matters" and am gathering some ideas to assist with the first topic - family time. I have many ideas and info. from other sources but to me you all are the best source of all! Any creative idea is welcome.

You may either pm me with the info or post it here for others to benefit. If I use the idea in the column, I will contact you for your permission and name to make sure you get credit.

Thanks!

[Tammy]

Basically most of the time I feel too sick and am too weak to handle any family things. My husband ends up taking our child with him to family doings by himself. If I am able to, I try to go for a little bit until my body gets so weak I can barely move and than I leave and go home again. We limit trick or treating to only a few houses as that is all I can tolerate getting in and out of the car before I feel so faint and sick, I have to go home and rest.

[janiedelite]

I have a very understanding extended family. My mom has carcinoid syndrome and my mother-in-law has severe migraines. They both know what it's like, to have good and bad days. My husband and I know how sick I can get if we push beyond my limits, so we are both very clear about what I can/can't do and have rarely had to explain ourselves. Last Christmas, I had to lay down on the floor while family opened gifts, so I just laid under the tree and told them I was a present!

I rarely wear make-up and fix my hair because I don't want to waste my energy standing upright to do so. Vanity has gone out the window.

We don't have kids. We've always been home-bodies and enjoy having people over or just watching a video. My cleanliness standards are way lower (I keep things picked up mostly, but dusting/deep cleaning rarely happens). And when we have people over, I have them bring stuff and we'll have BBQ (which hubby cooks on the grill) or a crock-pot meal or casserole. People really don't care about fancy food or an immaculate house when you are warm and provide a happy atmosphere. All my friends know I have to lay down a lot and just want me to be comfortable.

We took a trip to Yellowstone this summer. We drove because I could recline the whole way there, keep the thermostat just how I like it, and I put shades on the back windown to keep out the glare. I brought my cooling vest and extra cool packs, lots of drinks and salted G2, spray bottle to cool my skin where the sun hits it, compression, seat cane, and we had a great time! We just adjust our expectations to what my body will allow.

During my bad days, my hubby knows I need my space (this is when I'm glad we don't have kids yet) so that I can just rest and get better. Otherwise, we just try to do things at home that can be done lying down. You can play board games, eat dinner, watch the dogs in the backyard, all while lying down.

[Brye]

Our family time is usually around the house! I have a collection of lawn chairs that I park in the areas we play. If we're playing in the driveway I park my chair in front of the garage. I'm thankful to have 4 kids right now! It's a whole lot of work keeping up with them but they have each other as play mates so a lot of times I can just sit back and watch the fun. They've been understanding and seem happy just to have me around and nearby. We read books and play board/card games a lot. I have a nice small lawn chair that folds up under my stroller that I take wherever we go. We know all the easy hikes in the area and know where all the parks are with the shaded benches and play areas. My kids love watching movies at the theatre and the local university has all kinds of athletic events indoors and air conditioned. It's so hard and it's sad thinking of all the things I would love to do with them. I'm SO thankful though to have 4 healty kids and I just try to enjoy all the time we have together!!

Brye

[bkweavers]

My teenage daughter is the one with POTS and we try our best to keep her feeling as "normal" as possible. We have a pool of our own so we try to have lots of people over in the summer. We go camping a lot because it's really the only thing we can do as a family together. We have a great neighborhood that gets together for barbecues or just impromptu campfires. We bought a Wii and a large television for playing and watching movies in the winter when there isn't as much to do for her. We have sleepovers at our house as much as possible since she hasn't been invited to other girl's houses very much. Last of all, we have all of our family around so we get together with them as well. When there are events that she can't go to, we take turns bringing our younger daughter to those events so she doesn't miss out on everything. It's not the life we had before POTS, but we're doing the best we can to keep our family close and having some fun.

Brenda

[corina]

i have played simple (board) games while laying in bed, usually ask people to come to us and make agreements with my 2 teenage boys and hubby who is doing what (this one especially is VERY helpful as we all know what is expected). it is easier for me to have guest come to us as i have my own chair where i can lay down, feet up. also our guests are very at home at our house so if necessary they can help theirselves at whatever they need. at christmas we celebrate as a family on christmas eve and have one day for family/friends and the other (yes, we have two christmas days!!!) is just for the 4 of us. i start making/writing cards in september/october so they can be posted in time. i ask the girl who helps out for about 3 hours a week in our household to help me decorate (she likes that as well) and the boys help with the tree!

hope this gives you an idea!

good luck with your column, i'm looking forward to reading it!!!

corina

[daisy]

Thanks so much everyone! I am definitely going to use your ideas for future columns (will contact you for permission first of course!) For the Fall newsletter, I have decided to focus on how to make the upcoming holidays easier on us potsy/orthostatic people and ways to have family time without causing symptoms to spiral out of control. Hope you like the tips!

[firewatcher]

I watch movies or read books at home with the kids. For holidays we bake cookies together, it teaches them to cook and they are eager to "go get" the ingredients so I can stay perched on my stool. I don't go "out" to bowling or mini-golf or field trips, I can't walk that far. If hubby isn't home to go trick-or-treating, they go with a friend from the neighborhood's family or my parents. We sit in the floor and play checkers or boardgames and really don't go out much. I have the added whammy of a child with severe food allergies, so we don't eat out much. I suppose we are "old-fashioned."

[daisy]

Thanks firewatcher - I don't think you're old fashioned at all! I much prefer your way - I did even before I got sick. To me the crowds and the party scene and running all over with my kids like a lunatic was very underrated. In fact, one of the positives that came out of my diagnosis was that it forced me to slow down as well as my kids and force us to spend quality time together. We spent alot of time in the car together going from place to place but we were all so overwhelmed and rushed and stressed that we seldom had meaningful discussions. That's not the case now.....and I think it's a good thing. So, bring on the "old fashioned" activities/values - I'll take them anytime!