Make absolutely no mistake. My name is Ellen Schnakenberg, NOT Betty Crocker.
When it comes to keeping my house in order while suffering near daily Migraines as well as chronic pain and exhaustion from autoimmune attacks on my body, I have a long way to go. Learning how to do it has been a process however. One that I'd like to take a few moments and share.
When my kids were little, life was all about them. Whether or not the house was cleaned each day seemed fairly unimportant when Migraine was already stealing so much of the good stuff of their childhoods. The important stuff got done, when it needed to be, but not usually much before that. In our restored turn of the century home I had the option of a living room and foyer that was kept spotless so visitors could enter and I wouldn't be completely horrified. Those two rooms with my formal Dining Room made life doable, because I could relax with the other personal rooms. Daily damp mopping took moments, yet kept the wood floors spotless and ready for company at a moment's notice. Keeping the clutter to a bare minimum made for easy dusting. Remembering that we were in the process of restoring the home and therefore living in perpetual construction was also important. It's hard to have a "perfect" house when you're dodging ladders and paint cans all day.
At one point I had the spare cash to hire a team to come in and help me clean once a week. When we moved, they helped me pack. I had no one else to help me - sad, but true. If it weren't for these fabulous ladies, I think my house and my family would have completely fallen apart. If there is a way to find even enough cash for 2 hrs by a pro once a week or even once a month, I think it's worth every penny and more.
When the kids were adolescents, life was still about them. Their activities still took top billing, because making those experiences family oriented were key to keeping our family together in the face of chronic illness. You've gotta have priorities, and sometimes something has to give.
However, the kids were also bigger and much messier. Hubs and I disagreed frequently about how much responsibility they should have, and unfortunately, I often didn't have the strength to push my point too far. Things suffered much more without help and this caused a lot of stress for me personally. It felt like I was failing, and all around me were the reminders that I wasn't getting it all done. In the end, I knew it was a temporary situation. I closed my eyes and got the important stuff done and ignored the rest.
At one point I tried the Flylady method of cleaning. I learned a lot, much of which I actually apply in my work as a patient advocate. I highly recommend it for those who can't seem to find the time to do the basics and feel overwhelmed that things have gotten away from them to the point they don't know where to begin fixing the problem. I learned that 15 minutes a day is all it takes to keep things basically clean, and that one month spent on a single room, multiplied by 12 a year is enough to keep the rest of the house pretty close to spit spot. In my exhaustion and pain, having someone to remind me of my tasks for the day was helpful, although also sad. It wasn't that I didn't take pride in my home, it's that I took more pride in being a mom. Like a knick-knack, I had to put my expectations on a shelf for later. Much of getting through this period of time was about closing my eyes and reminding myself that this is a phase... a temporary situation that will eventually, someday be better.
I wish I could say it got easier when my kids moved out. The problem is, their bodies moved, but a lot of their stuff is still here. For instance, I currently have a huge living room, but 1/3rd of it is taken up by an enormous massage table being stored here until the day it has another more permanent home in my daughter's clinic. The same goes for a piano given to her, and a bed and dresser, and boxes and boxes of stuff.
Not helping the situation is the fact that we have been in the middle of an enormous home renovation that began over 6 years ago. We're literally living out of boxes, and until the contractor comes back to finish the job, it's not likely to change a whole lot for a while.
Honestly, painting a room or hanging curtains or artwork is a great way to get me enthusiastic about keeping it in order. I still have virtually no help, but if I can walk into a room and it makes me smile, for whatever reason, I'm much more likely to take care of it when I'm hurting. My desire for a beautiful space has GOT to overcome the pain and exhaustion I feel.
My current mantra is "When in doubt, throw it out." Okay, that's been my mantra since I saw a hoarder's home years ago. Still, it applies. De-cluttering is key to keeping things in order. The trick is letting go of the stuff. One box for *things I love* to be stored - one box per room ideally. One box for *give away*. One box for *throw away*. If it hasn't been used in 2 years, I don't really need it. The exceptions are for those things packed away due to our renovation that can't possibly be used. When all else fails, clear a room out by taking everything out of it, putting it onto the lawn and then dividing it. Only put back into the room those things you're willing to clean. The rest goes into one of the three boxes.
Sound too hard? I plan for those days when I clean big like that. It takes about a week ahead of time to be sure I'm avoiding ALL possible triggers, taking all meds, and then the day I feel good, I get out of bed, take all the pain meds I need to get me thru the day, then go for it the best that I can. When done, I go to bed and sleep, planning on being super sore for at least a week following. While I'm sore, I still get up and move about, taking time to enjoy my *new* room, reminding myself that there is a reason I put myself through such an ordeal while reminding myself that "less is more" and it doesn't ever have to get that way again!
An option many patients have that I don't here in the middle of God's nowhere, is a group of friends to help them. What a joy it would be to get together once a week and clean one house, then the next week go to another. Many hands make light work as the old saying goes.
~patient educator and advocate
Friday, August 10, 2012
Wednesday, August 1, 2012
Dear Migraine, Lupus, Sjogren's and Dystonia:
There are times I let you get to me. Days when I feel that I can't even breathe. The pain of my cries are only surpassed by the agony of choking back the sobs. You didn't think that I'd come back swinging. You try to break me, but you see...
"You think you got the best of me. Think you've had the last laugh. Betcha think that everything that's good is gone. Think ya left me broken down. Baby you don't know me cuz you're DEAD WRONG.
You know I dream in color, and do the things I want. What doesn't kill you makes you stronger. Stand a little taller, just me myself and I. Doesn't mean I'm lonely when I'm alone! What doesn't kill you makes a fighter. Footsteps even lighter. Doesn't mean I'm over cuz you're" here.
"Thanks to you I got a new thing started. Thanks to you I'm not the broken-hearted. Thanks to you I'm finally thinking about me.
You know in the end the day you" came "was just my beginning in the end... "
Music video and lyrics by Kelly Clarkson performing Stronger (What Doesn't Kill You). (C) 2011 RCA Records, a division of Sony Music Entertainment