Redefining Disability Challenge – Question 13

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirteenth question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later.

Here is this week’s question:

Describe a bad day in relation to the ways your life is affected by disability.

Last week when writing about good days, I referenced a post written by Christine Miserandino. I used the “spoon post” to explain my process of energy conservation. You can find her explanation here. If you didn’t read it last week, I urge you to take the time to read it now.

Christine’s theory uses spoons as a metaphor for energy. Every day you are given a set amount of spoons to use. The number may vary based on how your body is functioning on a given day. Each daily task you perform requires you to use one or more spoons. You have to accomplish certain tasks, no matter how many spoons you have, so you make choices and sacrifices based on your energy levels.

Monday when I woke up, I knew I would not have enough spoons to get through the day. Monday was what I call a “bad energy day.” To illustrate how this played out in my decision making process and choices, let me take you through my morning two days ago:

5:30 AM – Alarm clock goes off. I have a headache because I dozed for a bit without my bi-pap machine after waking naturally at 4:45 and the oxygen level in my blood is low. I try to move my arm to push off the blankets but the muscles in my arm don’t react to the message I am sending them. My arm falls limply and I sigh. I know already this is not going to be a good energy day. My Personal Assistant (PA) helps me sit up but I fall back against the pillow because my muscles aren’t responding when I tell them to contract and hold my torso upright. I curse under my breath. I don’t have time for this. I am supposed to be out of the house by 7:45 AM because I am working part of the day at Legislative Disability Awareness Day at the New York State Assembly and I am scheduled to meet my colleague, Melissa, at 8:30 in downtown Albany.

Total spoons available today: 30 

5:40 AM – Transfer onto the toilet. My ankles are swollen because I got to bed late last night and didn’t spend enough time out of my wheelchair so the fluid has not gone down. Extra fluid means extra weight. The extra weight will make every future transfer take more energy today. I think about this in my head and ask my PA to get me a granola bar as I mentally adjust my schedule. I eat the granola bar as I sit on the toilet, and send a quick text to Melissa to let her know I may be late. I’m sure others do not have breakfast in this manner, but I have to eat something and this is the only time to do it.

Total spoons used: 3; 27 remaining

6:00 AM – I consider skipping a shower. If I skip the shower, I would need to shower after work. If I don’t have the energy now, I know I won’t have it later. I also don’t know who is going to be working at night because the PA who is scheduled to work sent me a text late last night from the emergency room. She dropped a frozen chicken on her foot, potentially breaking bones. I decide to shower and my PA helps me transfer onto the bench. I can’t lift my leg over the side of the tub as usual so my PA helps me move. Showering takes longer because my tired body does not want to rush. I let my PA help me more than normal because it is taking far too much energy to maintain my balance on the tub transfer bench, let alone attempt to bend over and soap up my legs.

Total spoons used: 4; 23 remaining

6:50 AM – It’s time to get dressed. I have to wear a dress for work because of the event I’ll be attending. Transferring in and out of my van seat wearing a dress takes more energy than when I am wearing pants. I consider wearing pants as a concession but the forecast is for a hot, humid day and the air conditioning in my van is not working. A dress will be cooler, even though transfers will take me at least five minutes longer than usual.

Total spoons used: 3; 20 remaning

7:20 AM – My PA has to blow dry and brush my hair because I don’t have the strength to hold up the hair dryer. I decide not to attempt full make up. Lipstick will suffice.

Total spoons used: 1; 19 remaining

7:53 AM – I am in my van, about to pull out of my parking space. I am only seven minutes late, which I consider pretty amazing.

Total spoons used: 3; 16 remaining and I am just leaving the house

8:33 AM – I smile to the parking lot attendant and ask for assistance taking the parking ticket out of the machine. I don’t have the strength to reach for and pull the ticket. The attendant grumbles something to me which sounds like, “I’m so tired today and now I have to help you.” Those may not have been her exact words, but that was the meaning. I smile and thank her sweetly for her assistance, while the voice in my head is cursing her out. I snag a parking spot right next to the elevators and commend myself for arriving at my destination relatively on time. Melissa is already there and I have her assist me after I transfer back in my wheelchair by lifting my heavy legs so I can re-position my dress. She is used to helping prevent wardrobe malfunctions and I warn her about my lack of energy this day.

Total spoons used: 2; 14 remaining

8:45 AM – We approach the security checkpoint at the entrance to the Capitol and Legislative Office Building. I have to place my keys, purse and cell phone in the x-ray bin. I use my right arm to lever my left arm up to drop each item in one by one. After wheeling through the barricade, I must attempt to lift my arms and lean forward so they can wand me down for contraband I might be hiding on my body. I’m already wondering if I absolutely must go to the office after this event ends or if I will be able to just go home.

Total spoons used: 1; 13 remaining

I wish I could tell you my energy level improved as the day went on, but it did not. There were great moments during the day which energized my spirit, but my body did not respond in kind. By 2:30 PM when we were headed to the office, I knew I had about thirteen spoons left in my reserves and at least twenty spoons worth of tasks left.

I share this with you to show how I adjust my day based on my energy level, not in any attempt to impress you with my strength and determination. I talk about good and bad energy days, but rarely explain in detail what I mean by those terms. There are a few friends and family members who have seen me break down on bad energy days but that vulnerability is something I prefer to keep hidden from others.

I have often said we all make choices as we move through our lives. My choices may not be the same as yours, but they are the choices which allow me to live as independently as possible with a body which occasionally rebels.

All of us are given a set of spoons each day. How do you use yours?

 

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7 thoughts on “Redefining Disability Challenge – Question 13

  1. That does sound like a really rough day. I can see how even the smallest things make big ripples in your physical abilities. Here’s hoping you bring today in with spoons leftover!

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  2. This is such an eye-opening post that gives us an inside viewpoint of just how draining a day can be for some. Thank you for sharing your experiences with your readers. I have learned and benefited from these weekly “Redefining Disability Challenge” posts.

    I use up most of my spoons in four or five days, and I spent the other two or three days gathering more spoons. I attribute this to being an introvert who desperately wants to engage and participate in an extrovert’s world.

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    • Thank you for reading and commenting. I’m glad you are following the challenge. I wish my spoons were doled out in several days worth but I’m not so fortunate. It’s difficult being an extrovert on bad energy days! I want to go be social but it takes much more effort.

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  3. One of the ways I cope with the spoons I am given each day is to decide to do less; to plan in advance to do less; to stop believing I can do everything I want to do. Friends still think I try and fit too much in a day, but I know I have reduced my tendency to take on commitments greatly over recent years. And I continue to do less. And I accept that I won’t be doing everything that my mind says I can. Even through a day and a commitment, I look for ways to limit energy loss. And of course the result is not always perfect calm, with energy in balance. But I am getting better at it.

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    • I still struggle with doing less, partly because I have to work. Eventually I’ll have to consider going part-time but for now I’m managing. The energy required to just survive when my Personal Assistant team is weak or unavailable is more of an issue lately.

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