Thursday, February 20, 2014

Spoons: Walk in My Shoes!

A Way To Explain It a Little Bit Better:   

A few nights ago a friend sent me a link to an article and told me to see what I thought, she thought I might be able to relate. And, she was right. It didn't fit perfectly, considering the theory is based off of someone with Lupus, but I still rings true for me. Let me explain a bit further. Also, feel free to read the original article that describes what it is actually like living with a disease, disability, etc in a way that makes it relate-able : Article About Spoon Theory!

In the article she discusses how she explains to her friends what it is like to live with Lupus using spoons. Her friend is curious to really understand what it feels like. So she hands her friend a bunch of spoons and tells her to go through the actions of her day, but to keep in mind she only has a certain amount of spoons before her energy is gone and needs to make good decisions on how to spend her spoons. And remember you never know when you may need that extra boost of energy due to a surprise( a flat tire, or for me a seizure), so keeping a few spoons til the end of the day is smart. Spoons = time and/or energy!!!!In the article she discussed the number of spoons it takes her to shower, get dressed. I have to admit those actions don't each require a spoon, like she does (unless my CF-related Arthritis is flared up, which means my joints are frozen still and I have a fever. I can't move on those days I would take a spoon just to get my pjs off!!!!), BUT USUALLY it's more like getting dressed, showering, and eating some cereal = 1 spoon. Doing 1 hour of nebs in the morning =1 spoon. Cleaning dishes, cleaning and sterilizing nebulizer cups = 1 spoon. And walking (in the winter) to the car and clearing it off = 1 spoon (since I have asthma attacks almost every time and takes me a bit of time to relax before I can start driving). So that would equal 4 spoons before I even get to work.

Working actually takes 1 spoon per 2 hours. It runs me down if I work more than 3 hours, I lose a lot of calories, and I can feel the difference in my energy. I'm exhausted after work. When I get home I drink a gallon of Gatorade practically (probably cuz I'm dehydrated. I sweat more than the average person), and sit on the couch like a zombie. I usually work a 4-5 (right now) hour shift, using 2 spoons at work. I drive the half hour home and crash. If I had classes that day (dragging my bookbag & computer around) takes another spoon. If I'm doing a show (theatre/plays, show choir,etc) 2 hours of practice = another spoon. Those practices are between 2-4 hours, so 1- 2 spoons every night while in shows! Everyday I spend at least an hour cleaning the house, usually 1 spoon. If I had to run errands, another spoon. But grocery shopping is separate, it is 1 spoon to shop and 1 to carry groceries inside. I start wheezing before I even get out of our apartment parking lot. I need 1 more spoon for making lunch and doing the dishes, along with doing and cleaning my afternoon nebs. And my last 2 spoons in the evening: 1 for cooking & cleaning up dinner, while the last one if for my night meds.

So let's add them up, on a typical day I need around 9 spoons if I don't have class or need to runs errands or grocery shop. I'd probably say I have ten spoons a day. If I run errands (post office, pharmacy, movie store or library) I need to use that 10th spoon. I go to the pharmacy/ run errands every 3 days.  Meaning I only have an extra spoon 4 days of the week. But if I have to go grocery shopping, I don't usually end up cleaning the house those days, because shopping wears me out. since it takes two spoons. That's another reasons I choose when to do theatre. I don't pick shows to be in, I just decide to audition based on my lung function,
weight, and how I'm feeling. Do I have time to give up two of my spoons to theatre? If I can, I do it. Otherwise, I wait for my health to get back to a position where I can do more extracurriculars! (picture: at auditions for a show I was in earlier)

Don't get me wrong, I'm not complaining either and some days I feel really good, I'm not wheezy and coughing. I have those perfect days where I'm allowed extra spoons, because I slept well the night (I didn't wake up coughing 3 times for once)  and I'm starting my day with energy! And better yet, my lungs feel good and I can actually breathe, My stomach tube is NOT leaking for once, so I don't have to watch it all day and replace the gauzes... I have no arthritis problems or stomach problems this day. This is my perfect day! On perfect days I get like 15 spoons and on those days I use them wisely and tackle bigger projects. Christmas Shopping, Home Fix-It projects, Organizing projects, or I get a big monthly grocery shopping trip to Sam's Club done. Most days I use more than the spoons I'm given though, its just part of my fast paced personality.

 I like to save a spoon and put it aside for when I go out with friends. I love going out with friends. This usually takes at least 1 spoon. Not because it's tough to hang out with them. I enjoy it, but it takes time away from getting meds done at night, pushing everything back. Getting my meds done later= a couple hours less sleep and I never sleep well to begin with, so I start the next day even more tired ( which uses more spoons or starts me out with less).

I think it really puts people into my shoes and helps understand my life. I have to always make decisions (almost like run on autopilot to get all my medical stuff done. I feel it makes me similar to a zombie. As long as I make good decisions, I can save spoon for activities I love like dancing! Some decisions: Do I have the energy to wash those dishes tonight, or hope to fall asleep early and wake up early to do them? Do I go to the movies with my friend, even though I won't have time to do meds before hand? Do I vacuum the house even though I'm already wheezy and should do an extra set of nebs? Do I eat cereal all day today, because I can't find the energy to clear off my car of snow and go shopping? Do I give up 2 spoons a day, 5 days a week, for 2 months in order to do a theatrical show that I love!?I have to make decisions. I've made bad ones before. Skipped doing nebulizers for a whole day, because my friends want to spend the day shopping in the Quad Cities and we see a movie when we get back. Or I decide to pick up an extra shift at work, even though I'm exhausted, because I feel bad for the co-worker who needs it off. The more I do and less I take care of myself the more my lung function decreases. Right now I'm at 50%. I was 64% in October. However, at U of I ( I really overdid it, getting really involved) my lungs really took a hit and were at 34% by the time I graduated. So 50% is okay.. So spoons are important!!!!

My doc once explained the importance of my lung function. Note: CFers all of us are different, lung function varies, and its isn't a perfect equation. It was just a way for him to make it so I could physically see the important of my % of function! He showed me on paper. Let's say you get listed for Transplant at 29%, get a transplant after that...If you don't want a transplant or want to live as long as possible without one as , let's say I have until I'm 30% before it's officially time for one. He explained the older I get the harder it can be for me to keep my lung function stable! A great year = my keeping it stable and not dropping. But on average that's not realistic. It fluctuates and on average it's been decreasing 2% a year. Usually it will decrease 1-2 % That means if I'm at 50% right now, I have 20% points or  10 years until I'd need a transplant. You can get lung function back to an extent, unless the lungs have already been damaged and scarred. So it's really about the math!  That's why big drops like 64 -to 48% in the fall had him concerned. It went back to 64% after the IVs. But now is back to 50%, doc is thinking if it doesn't start going back up, I may need more IVs to see if we can boost it again. I'd like to keep it above 60%. Once it decreases below 50% I get more concerned.

When I'm lower in lung function and I'm concerned that's when I spend more time eating, napping, doing extra meds, walking on the treadmill and spend less time socializing and doing fun things like theatre. Those are times when I'm more focused! Hopefully, this helps you take a couple steps in my shoes. I love reading autobiographies and understanding about other people (probably why I ended up graduating with a degree in Psychology)! Feel free to share about your use of spoons, everyone has to use spoons, but you never know how people have to use them! Hope you enjoy this theory as much as I did. I love that this friend thought of me and sent it. It's quite an easy and smart way to understand what it is like for anyone with a disability or medical condition that complicates their life.

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