Being home from the hospital has been so wonderful in so many ways. I am there when my son wakes up in the morning, and when my husband arrives home from work each day. I am there to fix my family a real dinner (with two boys in the house that’s how we show love!), and to make sure they have clean clothes. Thanks to my handy shower transfer bench, I’m able to shower and wear real clothes (no more hospital gowns for this girl!).
Being home has also come with a whole new set of adjustments…I’m in a land of self discovery. Before getting sick, I never thought twice about things like climbing the stairs, standing at the stove to cook a meal, or making the bed. These were things I did as a housewife and mother to provide for my family.
Now, they are things I need to chose between. Do I make the bed or shower? Do I cook a real lunch, or a real dinner? Do I do the laundry, or clean the playroom? I must choose, because my body will no longer let me do it all. This is the life of a #spoonie.
The concept of counting spoons, or being a #spoonie was introduced to me as a hashtag on Instagram when I began following other people with CIDP. I was of course confused, so I did a little research. The basic idea of The Spoon Theory is this: each person with an autoimmune disease (or any illness really, but for simplicity’s sake…) starts the day holding a certain number of (imaginary) spoons. Each task that they complete (getting dressed, showering, completing a morning routine like combing your hair and brushing your teeth, fixing a meal, walking up a flight of stairs, etc.) costs them one spoon. Once their set of spoons is gone for the day, it’s gone. If they attempt to use a spoon for something once they have spent today’s portion, it will come out of tomorrows set and they will begin tomorrow already short a spoon. For the full story, read here http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Now that I’m home and trying to live life the way I used to I can safely say that I too and now a Spoonie. I now start each day with a set of spoons, and can only do that many things. Once my spoons are gone, I have no choice but to rest, and have others do things for me. This is particularly difficult when you have a toddler who doesn’t talk yet, and can’t understand why he has to walk himself to his room because Mommy just can’t carry him anymore.
It would be very easy for me to feel sorry for myself, and I do find a good therapeutic cry is sometimes necessary, but as often as I’m able, I choose joy. I choose to be thankful for this new life, for this opportunity to let others serve me, and to find new ways to serve others. I have a chance to find new ways to say thank you, new ways to say I love you, and new ways to be the hands and feet of Christ (usually from my bed, the couch, or my desk).
I do not have many resolutions this year…I would love to stay out of the hospital this year (except to welcome our baby girl later this spring), but other than that…
I have been doing a LOT of research about how to keep myself as health as possible, and will be beginning an elimination diet called AIP - it’s the autoimmune protocol for the Paleo diet. Normally, I hate the idea of changing the way I eat…I love food, and most of the food I love isn’t the healthiest for me. But when faced with making a lifestyle adjustment in exchange for potential good health…not much contest there. If changing what I eat keeps me at home with my family, then it’s more than worth any cost or hardship on my part (though I’m pretty sure eating out just got really difficult). If anyone reading this has heard of/done the AIP diet and has any recommendations, feel free to comment!
So my new normal includes accepting help even when I’m SURE I can do it myself (keep telling yourself that…), taking naps when my son does so I have the strength to make it to dinner time, having a MOUNTAIN of laundry (it’s not just a pile, trust me) when I can only do one load a day, needing to plan ahead when I go upstairs because I won’t have the energy/strength to go back down if I forget something, and having in home therapy (physical and occupational) four days a week.
My new goals include doing a one photo a day 365 project so my camera equipment doesn’t get dusty, learning how to hand-letter, learning how to make all kinds of yummy AIP recopies that 1) won’t put us in the poor house, and 2) can be done in the crockpot, and being OK with not being Supermom/Superwife anymore. Oh, and taking full advantage of using those cool electric carts in stores, and my spiffy handicapped parking sticker!
My body and mind are exhausted. My heart has never been more full.
Welcome, 2015.
"Please take my life and use it, I’m ready." - The Rocket Summer
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