Making life with lupus better, one hassle at a time.

One day a few weeks ago, as I was falling asleep during my afternoon nap, I made a little wish. It went something like this: "Someday, I wish that I could to take a nap whenever, wherever, and however I want. Independent of anyone or anything."

Well, now. That's a tall order, for the mother of a 4 year old and 2 year old.

This thought came on the heels of doing our daily 2pm napping routine - first, putting Bernie down for her nap (which involves the potty-before-bed/read-a-book/pick-a-barbie-to-snuggle-with negotiation), second, setting Deirdre up with a snack, drink, and a craft, third, making sure the door is unlocked and the house is ready for the babysitter to come in 30 min to an hour - and then, finally heading to bed myself.

I found myself dreaming about the days when the girls can go golfing with their dad, while I hang back and sleep. Or when Darwin and I have nap time to ourselves while the girls are in school full-time. Don't get me wrong - I cherish my little ladies. I know they won't be this age forever, and I know I'm going to miss it when they don't need me as much as they do now. But last week, I was wishing for a momentary reprieve.

So I got to thinking. How could I enable myself to have a nap that's a little more hassle-free? Do I have any options?  After a few moments of brainstorming scenarios, I dismissed the thought. In order to make it happen, I'd have to alter my babysitter's schedule, change the time I take my nap, or both, and I decided I was too exhausted to think about it further. And off to sleep I went.

I didn't give it much more thought, until last Friday, when I had The Friday Affair at Hollin Hall. I came home at 2:45pm, after working the first part of the show, only to find that there'd been a mis-communication with my babysitter. The napping routine hadn't happened yet. In fact, it hadn't even started! (Not her fault - ours.) My first thought, of course, was to jump in and get things rolling myself. But my second thought was this: maybe this is my wish come true? Could I actually off-load today's napping routine to the babysitter and just

I seized the opportunity. I told Bernie and Dee it was rest time, and that the babysitter was going to take care of it. They protested, I insisted, and eventually, the babysitter took over. (I admit that I gave in a little bit - I read Bernie the shortest story in the world, and set up Dee with a potential snack, to be administered when the babysitter came back from putting Bernie down.) But from there, I went straight to bed. No haggling, no negotiating, no hassle. It was glorious!

So now I know - it's not that hard to make happen, the girls (in the end) welcomed the change in routine, and going to bed when I want to really IS that much better. I'm going to revisit my options in the coming weeks to see how truly hassle free my afternoons can be. What I thought was a goal for down the road might just be something I can achieve now. I wonder how many other hassles I've learned to deal with, when in fact there might be easy solutions. Have any success stories yourself? Feel free to share!


Eileen said…
I just read an article about autism in a UK newspaper - where a concept put forward by a rabbi about our situation in a chronic disorder.

You booked your holiday in Italy and you did all the homework for a holiday in Italy and that was what you were looking forward to - then when you got off the plane you were in Schipol airport. That's in Holland. You jumped up and down and expended great amounts of time and energy on what you couldn't visit.

Eventually, however, you realised that Holland has nice things too and got out and enjoyed their canals without gondolas and tulips instead of cypresses.

It wasn't the perfect holiday you envisaged - but it was pretty good too.

My younger daughter decided at 10 months there was no way she would have a daytime sleep - big sis didn't so why should she and if she did have even 10 minutes she was still bouncing around at midnight. Your girls won't suffer for being told "No, it's going to be a bit different..." and it will leave you better able to enjoy the rest of the time with them.

My best tip? Dust is VERY patient - and after a day or two it doesn't get any worse! When you dust every day all that happens is that much of the dust is disturbed and a few hours later it has settled again (I don't know, maybe it's less of a problem if you have aircon, we don't in Europe). It takes the same time and effort each time doing it every 3rd day (say) - except overall it is a third of the time and effort. And no-one will suffer unless you have bad asthma or hayfever - though most people suffer immediately after the house has been cleaned. :-)
Sara Gorman said…
Thanks for your comment. Not sure if this is why you mentioned it or not, but that exact Holland story appears on the last page of my book!! It was a perfect analogy for me, i'm glad you think so, too. And the girls WILL adjust...thanks for the encouragement and the reminder!
adelene joyce said…
Hi! Greetings from Malaysia. Your blog has truly been an encouragent and inspiration to me. I've been having Lupus for 5 years and am still trying to cope with this illness and accepting the fact that I have a chronic disease. I thank God that He is using you to bless others even to those on the other side of the world :)

BTW, I finally received( with much excitement) your book which I ordered about two weeks ago. :)

Eileen said…
Sara - no, I haven't read your book so it was obviously a meant reminder ;-) I don't have lupus, I have polymyalgia rheumatica, but spend a lot of time on our forum trying to get this concept through to people who want their lives to be the same as they've always been. As you know that isn't always an option.
At present we have a couple of ladies who have realised that all that effort they put into dragging themselves either along the road to the shops or up the stairs is wasted: one wants a rollator, the other has ordered a stairlift. Their daughters are beside themselves that mummy, at 68, has given up.

I do hope those daughters don't ever get to our place but learn more gently that spending our 10 spoons of energy on 15 spoons worth of things is a bit silly. Your little ones will grow up with a tremendous gift - knowing that not everyone is as strong and fit as they are but that doesn't make them any less of a person :-)

Sara Gorman said…
Adelene - So good to hear from you! I hope you're making your way through the book. I was so excited to ship it off to you. And your wonderful feedback is much appreciated. I'll keep blogging if you keep reading! :)
Sara Gorman said…
Eileen - What wonderful words you've shared. I certainly hope my girls will be more understanding and compassionate because of the limitations they see me experience with lupus. It's so endearing when they ask after my aching joints!

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