A Day in the Life of a Spoonie Sister
Having a TBI is exhausting, both physically, and emotionally. Let’s refer to “The Spoon Theory for a better explanation.” The Spoon Theory is a way that chronically ill people explain to their friends, caretakers, and family what certain “normal” everyday actions cost their bodies to complete.
As a TBI survivor, we suffer most with chronic migraines and excessive fatigue. These symptoms were worse when I first received my TBI from a car accident back in 2016.
I had no idea that my brain worked so hard doing activities that I thought were exceedingly simple. That’s the thing, we can’t see how hard our brain works and what all it does, especially when we are not thinking about it.
The brain controls breathing, movement, problem solving, decision-making, and lots more. Yet, while we conduct these actions, we think nothing of it. The spoon theory was a very useful tool when I attempted to explain to a few family members what I was experiencing.
Healthy people begin each day with full charge after getting a good night sleep. A TBI survivor may only wake up with 40% charge, and still has to get through the day. The theory better explains “charge” by the using spoons. 10 spoons is often considered full charge, therefore, a survivor may only wake with about 4 spoons if operating with 40% of their energy. Due to this, survivors have to make educated decisions on how to keep and what to spend their spoons on.
Personally, taking a shower is what sucks my energy the most. In the event that I wake with 40% charge, I have to decide whether taking a full shower is required, or if a half-shower is acceptable depending what plans I have scheduled for the day. Should I attempt doing some light exercises at the gym?
Do I have enough energy to drive to the tanning salon? Do I have enough time to take a short nap today? These are a few of the questions that I have to ask myself. It’s incredibly frustrating having to go from an extremely hard-working go-getter, to having to slow my life down substantially to take care of my brain.
I have to focus on what I should rank, first. Taking care of my brain is at the top of my list. I can’t risk injuring myself again just because I want my life to go back to the way it was. I have many ways that I control my emotions throughout this experience.
One of which I use most is writing. I’m a blog writer and my goal with my writing is to not only be an advocate for myself, but for others in reference to a TBI. I also wish to give God the glory for saving my life and for getting me to where I am now, and if I can do that with my writing, then I see it as a win-win situation.
I also do an excessive amount of research on traumatic brain injuries and what issues they cause long-term. I’ve always been a researcher and the more I understand a problem, the better I can find or create a solution. Thirdly, I use my church as a support system. I am blessed to have a church family that accepts my situation (for those that truly know of it) and helps me when I’m in pain.
It’s a great comfort to have others praying for me, teaching me how to effectively pray, and giving me encouragement when I hit a low point in my recovery. Lastly, I seek others who are having the same issues with their TBI and I ask questions, as well as compare and contrast to see how others are handling these same symptoms caused by the brain injury. It truly helps me to not feel so alone in this process.
Of course, there will be days when I simply run out of spoons. There will be days when, we as survivors, do not wake up with enough charge to complete all the activities that we had scheduled for that day.
An additional concept that makes things hard to deal with, is that we may go through an entire week having pain and excessive fatigue, only to be rewarded with a day or two without any complications. It’s like one step forward, and three steps back. So how can this be dealt with?
Referring to my own methods, I resort to tracking. I have several apps on my phone that remind me to track how often, how intense, and how long my migraines last. I then have a second app that keeps track of what medications I take or have taken for that day. These tools become useful when checking in with my physician.
It tracks progress or setbacks that I have as well as “triggers” that could have caused them in the first place. I have light sensitivity, and sometimes sound sensitivity that trigger my migraines. Other times, the migraines simply come at random.
These migraines are classified differently than the traditional migraine. Due to the fact that these migraines are caused by damage to the brain itself, the pain is often unbearable. Often times, the migraines experienced are often categorized in two sections, pressure migraines, and stress migraines.
I may find myself screaming in pain from the throbbing and the pressure that feels as if my head is going to explode, or I might be under a substantial amount of emotional/physical stress which flares up the pain. These are often treated with medications, as well as constant ice application and very dark environments.
Having a traumatic brain injury completely changes your life, and what makes things hard is that a TBI is considered an invisible injury. Those who can’t see it have a hard time understanding or even believing everything that we survivors are going through.
The important goal should be to educate those who don’t understand but also understanding that your health comes first. Therefore, it’s important to educate yourself as well, and never feel scare or ashamed to reach out for help if you need it.
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