Energy Management: The process of tracking and monitoring energy levels to conserve usage.
This is a forever tough one for me. I have spent years trying to teach patients and giving them strategies on energy management. But that was BC (before cancer) times. When I thought I understood the concept of tired. When I could push myself through my tired to run a marathon and the consequences were not very high. I could recover in a few days, and it made me sore but never stopped me from completing tasks of daily function like showering and getting dressed and cooking something simple to feed myself.
For those who are unfamiliar with energy management, the most recent analogy that seems to work for people is you start your day with a certain number of spoons. Each task that you do that day will take a different number of spoons, when you are out of spoons you simply can't keep going, you have to rest. Different tasks take more energy or spoons to complete. For example let's say you had a really active couple of days and then you wake up and realize you have a fewer spoons day with maybe 5 spoons to start the day instead of your normal 10. Or you don't necessarily know that you only have 5 spoons, but you quickly realize that when you take a shower and get dressed and that takes 3 spoons, then making breakfast and eating takes 2 spoons and you have barely done anything and yet you absolutely must rest because your body is hurting or shaky or you cant seem to move your arms and legs anymore. Or when it gets really bad you feel super nauseous and better not move or you will start to throw up.
People dealing with chronic energy depleting conditions deal with this every day and have to make decisions based on what energy they happen to have available that day or that moment. I have had to cancel plans with friends or plans for going out and doing activities that take higher energy. I have had to change vacation plans to events that take relatively little physical activity. I say relatively because my comparison is always BC levels for me.
I have spent too much time being tired and feeling sick and pining after the activities I really want to do, like go to an activity with a friends or even a walk though the woods on a sunny day. Instead of the things I have to do, like get dressed and cook food that is lower in phosphorus than what I can get in take out or prepackaged meals. I am not looking for suggestions to help, I know a lot of them and have used them when I can.
One of the things I love to do is host a party. It brought me so much joy to have a group of friends over laughing and talking and enjoying food I prepared. But what do you do when you have people coming over and you hit a wall in the middle of trying to prepare for them? What if you can't even enjoy the gathering because you are too tired from all the work getting ready for it and you just want to lie down and take a nap? That is a new experience for me, almost every day I get to the point where I have to lie down and rest and it might be a 1 hour nap or a 3 hour nap. I get very frustrated with how much of my day I have to spend napping and resting.
I can lower my standards, maybe not worry about how clean my house is. Maybe get more pre-prepped food or ask more friends to help. I got to that point yesterday when we were having a very late family birthday gathering for Dawn and Leanna. It was just us and them and their SOs, but it was tea party style so, of course there is a soup, salad and sandwich course. There is the fancy table cloths and napkins and because its cold rainy weather a from scratch Masala Chai tea brewing on the stove. That's how we show our love right? By preparing favorite and or requested foods and welcoming our loved ones home to a clean and lovely environment. We should have just gone out to eat, or maybe I could have asked some friends or family to help. I realized this half way through the morning the second time I had to sit and rest since my hands were shaking too much for me to be safe with sharp objects. I try not to beat myself up over it but yesterday I got to the point where I could no longer move and was so nauseated and exhausted that I needed to lie down and have everyone help me as I couldn't even get to the bathroom for my stupid pills.
The pills that are a constant flow of chemo in my system, the pills that make me tired and shaky and nauseated. The pills that make my hands and feet hurt and my skin dry and peeling and cracking and bleeding, and my mouth and lips to have sores and my hair to go straight and fall out. The pills that make me so tired I can't plan more than one high energy activity in the morning or afternoon and have to take naps.
The pills that are keeping me alive.
Energy Management means; If I go meet friends for a walk I won't be able to cook dinner for myself. If I go to an evening gathering of friends I need someone to drive me or make arrangements to spend the night as I will not be safe to drive myself home. If I do laundry I won't be able to go shopping. If I go shopping I won't have the energy to cook. Often my best energy is in the morning, I am awake at 5 am most days and have good energy till around 9 or 10, then I need to lay down and rest again. Then I have enough energy From 11 till 1 or 2 then have to nap. Afternoons are often bad for me, after my afternoon nap I often wake not feeling rested, with sore arms and legs and am easily nauseated. By 8 pm I am exhausted and it's a struggle to stay awake until 9. It's difficult to meet with friends and host a house full with this level of energy.
I have tried to stay active and do activities with the Cancer Support Community of Ann Arbor. They are a fabulous organization and I have attended Zoom group support meetings and taken Tai Chi, Pilates, and yoga classes. They also host different events and have guest speakers for education on things like energy management and navigating the healthcare system. For anyone who is looking for help navigating their New Normal with cancer I highly recommend The Cancer Support Community of Ann Arbor.
And if there are any really early birds out there who don't mind meeting at 8 am I have really good energy at that time. Sadly 1-3 is usually nap time for me and I won't have much energy until 5 or 6 for a short period before I need to get to bed. I really do miss my friends and family and love you all. Please don't see my lack of participation in events due to lack of spoons as a lack of interest. Most of my days I feel very lonely and desperately wish I had the energy to do the things my friends and family are doing.
