On my way to yoga class last Saturday, I kept thinking about ways to explain the feeling of the sheer exhaustion those with UC go through. It's one of those things in life that you can imagine but can't fully comprehend until you experience a day in that person's shoe. Kind of like childbirth.
The spoon theory explains this aspect quite well.
Here is a different take on it. This analogy of comparing fatigue and exhaustion to cell phones popped into my mind on my walk to the yoga studio while I was struggling with how to conceptualize tired. Practically everyone now has one. So its something most can relate.
At the start of the day a person with UC, like you, may start off with having 50% of their battery charged. Due to the bathroom trips at night and night sweats you did not get a well-rested sleep. When you begin the day, your battery starts running down like everyone else.
Because the person with UC knows that there is only 50% to last their entire day, you are very careful and conscious of the choice of activity they engage in. Everything costs a little bit of energy. From the moment you open your eyelids feeling the heaviness of your body and the soreness in all your major joints, to dashing to the toilet from the bedroom and then counting to three to try and get up from the toilet afterwards, to opening the faucet on the sink to wash your hands, to going back to the bedroom to get dressed, to making breakfast. Taking that carton of milk from the fridge and opening that it, then getting the cup from cupboard and pouring the milk in. Toasting that piece of bread and opening that jar of peanut butter to spread over the toast. If all goes smoothly you will sit down to enjoy your breakfast and remember to take your pills buy fiddling with child proof and joint pain unfriendly bottles. You will then proceed to take your dishes and load them into the dishwasher. Every time you stand up requires tremendous effort so every step you make is planned and purposeful. If you have made it through breakfast without a trip to the bathroom then it has been a good day. You now feel a sharp pain in your stomach telling you another trip to the bathroom is needed. After brushing your teeth you look in the mirror and decide it's fine to go out the door without washing your face. You then proceed to put on your not yet swollen feet in your shoes and tie your laces with your achy hands. You check that another bathroom trip is not in order and begin to head out the door. You make a conscious note of everything you need to bring that day, wallet check, keys check, cell phone check, because you can't afford to come back and get something if you forgot it. You go to the hall and press the elevator button remembering to stand close to the buttons to conserve a little bit of energy to move towards the lift when it does arrive. As you are walking towards the traffic lights you see the pedestrian light counting down from 15,14,13... You tell yourself that it's fine you are not going to make this light just wait for the next one. You start walking during the rush hour morning traffic and notice everyone zooming pass you including the elderly using a cane. The thoughts of trying to keep up with that elderly gentlemen flash through your mind. But you decide. It's not worth it. You take conscious steps to get to the handicap doors using the shortest path and get some strange stares as you use your aching hands to press down on that handicap button. You don't care about the stares because you are busy focusing on navigating your way to work during rush hour and you think I am really handicapped. You question why everyone is in such a hurry rushing to get from here to there. You notice a familiar face a few feet away walking towards you. You think to yourself how should I avoid eye contact so that I don't have to engage in an awkward energy draining conversation where you end up tearing up at the end. You are almost at your building and realize the escalators are under maintenance, which means you may have to take the stairs. You find the backdoor to the concourse level of the elevator in your building and wait there. Hooray you are at work. You avoid eye contact at work because you don't want to engage in small talk. You nod and smile when that is inevitable. You reach your office and is relieved that you can take your shoes off and raise your feet up. The battery that was at 50% is now down to 25%.
As you can see, every little thing from the batting of your eyes, to the lifting of your arms, to the thought of what should I eat tonight, is deliberate and conscious, because everything takes up energy. Just like when your cell phone is running low on battery, you turn the battery saver mode on and become selective of what you do. For a person with UC, their battery saver is always on. There is no charging station available to them to plug into. Sure they can recharge like everyone else by eating or resting. But plugging a UC cell phone into a charging dock doesn't grant them a quick boost. Because some part of the cell phone software thinks that charging docks are evil.
I have just described a few hours of my morning in mundane details. But those are the things that must be consciously acted on in order to leave enough fuel for the rest of the day. Including finishing a day at work, getting to the doctors, carrying a conversation, making meals, injecting medications, showering at night, and the unpredictable trips to the closest bathroom.
When someone with UC tell you they are tired.
It's not an excuse.
It's not because we are lazy.
Most likely we are in bed exhausted hoping tomorrow would be a better day.
We love it if once a while you would show up at the door and hang out with us instead.
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