There are many things I don’t get to do anymore because of my TBI, Traumatic Brain Injury. A TBI changes things for us Thrivers. One of my biggest inspirations in life, in case you didn’t already know (smile), is Robert. He has limitations from his TBI too, but has overcome so much and learned how to manage it so well, that I constantly draw on him for courage to stretch beyond what I think I can do. He is simply, AWE-mazing.
However, it is a fine line between stretching oneself and maintaining good health through self care, and I continue to struggle with that balance. There are two barometers I measure to help me track how I am doing. The first one comes from Nathalie Kelly, known as The TBI Coach.
A, B, C Batteries
“A” is fully functional. This is a maximum functioning level, respective to the Thriver to which the term is being applied. My “A” game may not compare at all to another Thriver’s A game. Most likely, it does not. I have learned that while all Thrivers have symptoms in common, we are all also very different and varied in our symptoms. When functioning at a B level, it is time for caution. Pull back, retreat, do whatever is necessary for self care. At C, all bets are off. Everything needs to stop and the person with TBI should probably be isolated. Quickly.
The thing with me is that I slide from B- to C- very quickly. I can go from being upright and fairly functional to needing self care and solitude, right on in to bed ridden – confused and almost catatonic – very quickly. So I’ve learned to stop when I drop below mid-B in functionality. I don’t drive, I cancel or postpone things I have scheduled, and I isolate – temporarily, for my health. This is what I call a positive isolation, but I also have to be careful that I do not let that slip into a negative state. It’s easy to stay comfortable in my own little world and not take the risk of interacting. I don’t have TBI episodes when I remain motionless, and isolated in my van. There is great comfort in that. But I refuse to become that person. I refuse to give in to the fear.
The good news is that I recover fairly quickly, usually – there are exceptions of course. A lot of it depends on how long I tried to function from my C batteries. And I am fully aware that I’m one of the lucky ones to be able to bounce back and forth. Many TBI Thrivers are stuck in C- permanently.
I got this concept from Kathleen Sheehan, M.D., almost 20 years ago, and have adapted it to apply to TBI. Think of your reserves as a gas tank on a vehicle. Ideally, you want to keep your reserves (your energy level) above 50%, always more than half full. This is true for everyone and is similar to the A, B, C Battery concept, but incorporates many things. Mainly, I’ve learned to manage my reserve levels by paying very close attention to my triggers. The acronym, H.A.L.T., comes to mind – hungry, angry, lonely, tired. Some other factors, at least for me as a TBI Thriver are stress, external stimuli (crowds and noise, etc.) and motion (foot and vehicle traffic, etc.). The list goes on and on and is different for each Thriver.
These are the things that can quickly take me from an A Battery to a C Battery. Everyone has such lists, but the difference for TBI Thrivers is that these things can be life-altering, permanently. When I have an episode, I never know if I am going to fully recover. It is scary to go dark, completely non-functional during an episode, and not know whether or not you will pull back out and be functional again. So far, I have been blessed every time to recover. And I am very grateful.
However, there is scientific evidence that each episode, even with full recovery, causes permanent damage to some degree – much like a person who keeps having TIAs or mini-strokes, or alternately a person who suffers multiple heart attacks. So it is paramount to run on a full tank of gas with as much as possible in reserve.
When I know that I am going to be in a situation that will draw down on my reserves, I literally try to build up for that. I socialize less and isolate more, I pay extra special attention to my diet and sleep hygiene, and I avoid noise and motion activities. All of it helps. My goal is to go in to potentially hazardous situations with a full tank, and maybe even an extra gallon or two.
I built up a LOT of reserve for our 2018 RTR Viewer Appreciation Meetup. I bailed on campfires throughout the week, avoided the RTR crowd, hung out in my van a lot, didn’t take trips to town with my friends and didn’t get to visit other campsites as often as I would like. I am learning to manage my TBI and it is what it is. I choose to focus on the fact that I was able to socialize a few times in small groups, we held our meetup, and … I even went to the main RTR area one morning. One morning out of the 10 might not seem like much to others, but for me, and anyone else managing a disability, it was a MAJOR victory. You can see that video here:
RTR = Rubber Tramp Rendezvous (an awful name but a good event).
I shared all of that with you so you will know how special this meetup gathering was to me, and to Robert. Hopefully this will show how we are able to do such things (a common question from others). For me, two hours was my limit. It dipped me to just below 50% reserve (because I had extra in supply), and it took me to my B battery. I laid low for quite awhile after the event and was able to recharge. It took me a long time to learn these tools, and even longer still to accept them. It’s not easy missing out on so much. And yet I get to do so much. Perspective.
Just look at all the people Robert and I were able to interact with, including several fellow TBI Thrivers! We are so blessed! We really do have the best viewers in the world.
I gave away an autographed copy of my book, Kaleidoscope 9, to all that attended the meetup. It was our way of saying thank you for showing up in our lives, and giving us love and support.
In the video, you can hear me explaining that all of the stories in the book are written as fiction. And all of the stories are based on real events, except for “Gone, But Not Forgotten”. There is some truth in every story except for that one, but even it was inspired by a real event. However, there are two stories that are completely true, 100%. If you read my book, please email me and let me know which ones you think they are. Also, please leave me a review on Amazon. Thank you!
Twitter As A Tool
Another discussion you will partially hear in the video is of me sharing some of my tweets. That came about because someone asked me what it was like for me on a good day. I came up with the idea of using Twitter to track my symptoms (when I remember) after hearing Thomas Dixon on a radio talk show. He has a TBI that periodically erases his memory. I have that issue too but not nearly as badly as Mr. Dixon. Robert aptly has tagged the phenomenon: Swiss Cheese Memory. I love that we can both laugh about our TBIs. So, what you hear on the video is me sharing tweets with those who wanted a glimpse of a good morning. Those tweets are listed here for your convenience. And yes, this is from a good morning – one hour’s worth to be precise. This is what I deal with all day long, every day, on fully charged A Batteries.
“This morning, got all my pills & vitamins out, got ready to take them & realized I already had … less than 20 min prior. Then got all the stuff out to make coffee. Same thing. Already did that. No recollection. Oh my.”
“Saw a wet wipe on my bed. Threw it away. Retrieved it. Forgot I had it out to clean my hands.”
“Robert is headed back to camp. I know he is going to asked me if I had had breakfast when he gets here. I had to look in the trash to remember.”
Our TBIs are manageable, but it takes work. Robert and I both have learned ways to cope. We both are grateful for that and for the many blessings in our lives – especially family and friends, and the connections we get to make with others while on the road. Life is definitely a celebration.
We should have taken an official count of those who came to the meetup, but we both were having such a good time we forgot! You might recognize some of them though, especially the following youtubers ….
Lola, Lost On Land Again
Isaura, Fortunate Travel Adventures
Irene, Irene’s Vanventures
Cindy, Traveling with the Gramkracker
Kelly and Sophie Doyle, Kelly Doyle
If we missed anyone, I apologize. Please email us. We’ll add you to the list right away!
And didn’t our good friend Tiki look awesome on her e-bike?
Robert and I are so blessed by the activity we have had on our new channel. We are having a great time working together, and have great plans for this joint venture … the “odd collaboration.” So, to have so many come out to this Viewer Appreciation Meetup made our day!
Thank you everyone!
We appreciate all of our readers and viewers. And if no one has told you yet today, you are loved beyond measure and incredibly AWE-MAZING!!!
Keep On Keeping On.
No Matter What.
NOTE: It looks like I am sunburned in this and recent videos, but I’m not. It is welts from an allergic reaction to the antibiotics I was taking for my UTI and having passed kidney stones. They are mostly gone now with only a few stubborn ones hanging on. All is well (including me, lol).
2018 RICE RANCH MEETUP will be December 12-16, 2018.
I’m embarrassed to admit that until I stumbled onto your blog I had never heard of TBI. You’re such a lovely lady and I’m so sorry that fate dealt you those cards. But goodness gracious there could NOT be a better ambassador to enlighten ignorant people such as myself than you! I’m glad that you and Robert support each other through the challenges of life with TBI. Respect.
Dearest Edith, this is so very kind of you! And please do not be embarrassed. I have to admit that until I became a TBI Thriver, I had never heard of it or given it any thought either. Life is always a huge learning curve – no matter the issue. We’re so glad you’re here. Thank you for your kind words and support!