"What does it feel like to be chronically ill?" How do you answer that question for someone who is healthy?
Most healthy people begin their day with an unlimited amount of energy and possibilities for their day. When you are healthy, you expect to have sustained energy throughout the day to do the things you need to accomplish and the things you desire to do.
A spoon represents each task you have to do. You begin each day with a list of tasks (spoons), including the most simple ones, self care, chores, errands, and fun things to do. It's important to know how many spoons you have, because some of them may need to be set aside during your day based on importance.
You don't just jump out of bed, take a shower and get dressed because you have to transfer to a wheelchair using your arms. You have to push your manual wheelchair to the bathroom and transfer again to the toilet, using your arms. Then you have to transfer back to the wheelchair, and hope the wheel locks stay secure so it doesn't move while you are in the middle of transferring. It's no longer under warranty and your insurance won't pay to fix it again. You are not eligible to get a new one for two more years. You feel drained from transferring three times and used up three spoons just to go to the bathroom. Your too tired to transfer to and from a shower chair and dry off, so you skip the shower and save three spoons for something else.
You have to take medication with food, so you must eat. Your arms just moved your body instead of your legs, and now they need to wheel you to the kitchen and put together a meal. You've used two more spoons to do one task, breakfast, because reaching high and low, cost you more than one spoon. You set the clean up after breakfast spoon aside. If you don't take your medication, you may as well set the rest of your spoons aside.
Getting dressed uses up three more spoons. You wear clothes that are easy to put on with with hands that hurt too much to work buttons and chronic pain everywhere else. My body temperature is low, so I need to put on more clothes. You feel drained because it took you three hours to do what a healthy person can easily accomplish in an hour or less, with energy to spare. If you are going to the doctors office or to meet a friend for lunch, more effort goes into what you present to the world outside your door. You use another spoon. The accessible van is late picking you up and you sit waiting for it to come and take you home. People will waste your spoons. Preparing for the worst is part of a real day, so you take your laptop to pass the time. Typing uses another spoon. The time is spent and you are too tired to make dinner, so you conserve your energy for two more transfers for the toilet and then one more for bed. If you don't get to bed on time, it will take spoons from tomorrow before you ever wake up. The only reason you didn't have to get on the potty more is because you have a bladder catheter, which saves you energy. If your bladder spasms during the day, causing excruciating pain, which drains your energy. When it's over, you change out of soaked pants and get a shower, clean your wheelchair and the floor, so that uses 4 spoons.
You didn't go to the grocery store or the bank. You didn't do laundry or clean your home. Some days are better or worse than others. If you push it slightly beyond your energy level one day, your body crashes for days, forcing you to recharge your batteries.
Every detail of your day needs to be thought out because there are things you MUST do and things that you should do, but don't have the energy and time for. Fun gets traded for rest, in hopes that you can keep from using tomorrows energy, today. You may not be need a wheelchair, but the principle is exactly the same because parts of your body don't function like they should, which takes more time and energy. There are things you need to do to function "normally" that other people don't have to think about and take for granted, like being able to go to the bathroom, bathe, get dressed, eat, climb steps, get in and out of an automobile, write a letter or type an email. Chronic illness forces you to slow down, prioritize and not try to do everything.
You remember what it was like to just go and do. You feel left out because you need to stay home and rest, so you don't get weak and crash or catch a cold or the flu. You don't get things done that you need to, much less want to do.
Now, instead of each spoon representing what you have to do in one hour, it represents what you have the energy to do a twelve hour period, depending upon how you feel. Instead of just thinking and doing, you have to plan every detail of your day and make choices others don't have to. You miss freedom and not having to count your spoons.
You don't have time or spoons to waste, so you choose carefully what to use them for. If your friend with chronic illness or disability takes the time and effort to spend time with you, now you understand how much you mean to them and what a gift that is. Hopefully, you will not take your health for granted and choose a slower paced life before something happens to make you slow down.
People ask when are you going to get better? The truth is you might not, or you may get worse. Restoring your health after years or a lifetime of chronic illness is like turning a huge ship. It takes skill with the right information, time, patience, work and focus.
What does "health" feel like? Ample energy for the tasks of the day. Others focused. No pain anywhere. A smile without effort. joy - just because. Living in the present and looking forward to the future, without stress, fear or frustration. When someone asks how you are, you can honestly say, "Fantastic!" When you lose your health, it's a slow process over many years and then something breaks. When health is restored, after many years of chronic illness, it doesn't take long to lose what you've gained. Be vigilant to hold onto your health and value it like your most prized possession, because it truly is.
The "Spoon Theory" was first expressed by Christine Miserandino, but I suffered with chronic illness for 30 years, cared for people with disabilities and had a best friend with MS during the last 17 years, while I was sick. It's the story for every person with chronic illness or disability.
If you have questions, email firstname.lastname@example.org to schedule your free introductory consultation. I look forward to serving you. JVW
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