My baby sister, J, turned 16 this year.
Seriously, where did that time go?
One of the things I hate most about my illness is the way it steals not just from me, but from my friends and family too. Time we should have spent together, experiences we should have had, memories we should have made… chronic illness takes a lot of those away.
The older my sisters get, the more I feel that pain. It made me sad when I became an adult, but couldn’t take them to do fun things like we’d always planned we would when I grew up. There were no trips to the movies, or theme parks. No pizza dates or picnics in the park. But now that they’re young adults, it’s even harder. They’re living life, and wanting me to join in and…I just can’t.
So, when my baby sister turned sixteen, I gave her an unusual present.
I gave her a ring box… containing tiny spoons.
If you’re not familiar with the chronic illness world, you may not have heard of ‘The Spoon Theory‘ before. Basically, spoons represent energy. People with chronic illness have less, and so have to carefully plan how they use them, often missing out on things they’d like to do.
So, for J’s birthday, I gave her a day of my spoons. I wrote her a letter explaining that I knew my illness meant that we missed out on doing a lot of things together. So, for one day, we could do anything she liked. For one whole day, I would give her every ounce of my energy: I wouldn’t try to conserve, I wouldn’t try to keep some energy aside for tomorrow, or the next day. Obviously, I couldn’t live like that long-term. But, for this one day, I would give her everything I had, until I was absolutely, completely empty.
Yes, that would be painful. It would mean a long recovery, and missing out on other things while I recovered.
But my little sister is worth all that, and more. That one day of cranking the dial up to 11 was my way of saying to my sister, ‘You are worth all my spoons’.
She loved the gift, even before she had ‘used’ it. She agonized over the choice for weeks. There was so many things she wanted to do with me. How much could we fit into one day? And, as much as she appreciated me not putting any limits on her choice (apart from scuba and sky diving – neither of which I can do with a pacemaker), she wanted to choose something that wouldn’t (in her words) “kill me”. Eventually, we decided to combine her love of shopping for clothes with her appreciation for bargains, and planned a day of serious op shopping.
Mr Happy volunteered to chauffeur us around for the day (since I’m not medically allowed to drive). We left at 8am (I had to remind myself how much I loved her to get myself functioning at that hour!) for a two hour drive to the city. There are op shops closer to us, but we’re in a small, rural town that’s part of a low-socioeconomic area, so they don’t have as much to offer.
We had the best time. The op shops in the city are like huge warehouses, full of good quality, expensive brand name items (but with a $2 or $4 price tag instead of a $50 one!). We spent hours combing through aisle after aisle of clothes. We have different styles, but we know each other well, so we’d often be calling out, waving something in the air for the other to see. Sometimes we’d pull something ridiculous off the rack and pretend to recommend it. I pulled a dress off the rack with crabs on it, and pretended to give it to J. “I dare you to try it on,” she giggled. I was game, and so, laughing, we took our pile of potentials to the changing rooms.
After trying a few items of clothing on, I pulled the crab dress off the hanger, smiling to myself at the absurdity. But when I put it on, I was surprised. On the hanger it looked ridiculous – for some reason I’m okay with owls and dogs and birds and butterflies on clothing, but crabs just seemed silly. But this dress looked good on me. I knocked on the changing room next door, and J poked her head out.
“Hey, that really suits you!” she exclaimed. “You have to get it!”
“But it’s got crabs on it!” I said, unsure whether I wanted to add crustaceans to my closet.
“Get it anyway!” she declared, disappearing back into the changing room.
I did a few swishes around the op shop in the crab dress, and then decided that I didn’t care the dress had crabs on it. It was part charming, part funny. I would adopt these crabs, and take them home.
Halfway through the day, I surprised J by taking her to a dancewear store. She’s been doing dance for a few years now, but is starting a new course next year, and needs some different gear. We don’t have big specialty stores in our small country town, so it was a chance for her to have a play, drooling over different dance outfits and trying on shoes. She spent a lot of her birthday money (plus Mum & Dad’s money) in that store, but came out absolutely beaming with happiness.
After lunch out (well, she and Mr Happy had lunch out. I had cereal and milk that I’d brought along because that’s what I can tolerate at the moment) we continued op shopping until 4pm, when all the op shops closed for the day. Wearily / happily / gratefully, we climbed into the car and trundled home.
How did I manage such a big day? The adrenaline from the excitement helped (a large dose from a fright or stressful situation makes me sick, but a small amount can be helpful). I drank a lot of water throughout the day, and ate salt straight out of the shaker I’d packed (salt + water = better blood pressure). I took painkillers. I rested whenever possible. I sat down as often as I could in the op shops (the middle of the aisle, the changing room, the furniture section…). I lay on the floor while J flitted around the dancewear shop, propping myself up on an elbow to comment on a pair of shoes, or to answer a question about the fit of a leotard. Sometimes I can do all the right things and still be stuck in bed, but this day it all worked out (and I’m so grateful!).
You’re probably wondering about the aftermath of such an adventure. The pain and fatigue were pretty rough for about a week afterwards, and it took a few more weeks after that to be back to my ‘normal’. Do I think it was worth it? Definitely.
J came home with a pile of goodies…
But more importantly, I got to spend time with my baby sister, sharing fun new experiences and making memories. I think that’s a present she’ll treasure more than a wrapped gift.
Happy sweet sixteenth J-Bear.
I love you more than all the clothes in the world – even the ones with crabs on them.
7 thoughts on “I went op shopping and came home with crabs…”
Reblogged this on a little bit me and commented:
This is the sweetest gift – if you’re not familiar with the spoon theory take a look. We are fully using spoons and that terminology to determine what I can or cannot do in a day.
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Your posts .. I can’t find the words without sounding weird. lol – You’re able to put into words what it’s like with chronic illness, with dysautonomia. Thank you again for sharing such a wonderful post. And I love the dress by the way. 🙂
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Thank you! What a lovely comment! I’m glad to be able to share a little bit about what life with chronic illness is like. I want healthy people to better understand, and chronically ill people to feel less alone ❤ xx
The timing of your posts have hit me perfectly. With the month of October being the “awareness” month, I’ve learned more about my illness in these 31 days then the 8ish years when I was dx’d. Not only have I learned more I’ve also been exposed to people like you and Facebook groups etc. I went from – “Am I alone” to wow – there is so many of us. So many of us with shared experiences and with different levels of severity. I’ve also finally gotten an appt at The Vanderbilt Autonomic Clinic. So – thank you again for sharing as, selfishly, it helps me but it also helps my family to see others have this too.
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You are definitely not alone! *hugs*
My family has been amazingly understanding and supportive through my illness journey, in part because my Mum also suffers from chronic illness, so it wasn’t new to them. But unless you suffer from chronic illness, or are close to someone who does, it’s so hard to understand what it’s like. My hope is that my ramblings might bridge some of that gap.
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I love the crab dress!!
I know that J really treasured and appreciated a whole day of spoons!!
What an amazing generous person you are!!! Xxxx
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Thanks – the crab dress and I are now firm friends!
Aw, thank you for sharing that sweet insight! I’m glad that it meant something to her – I know it was a really special day for me ❤