One day at a time, one experience at a time… TBI recovery over the long term

brain with lots of question marks
How DO you work your way back?

I haven’t been doing nearly as much blogging, lately, as I used to.

Time was, I’d get up, do my exercise, eat my breakfast, and then spend 30 minutes or so blogging before I got my shower and went to work. I did this (almost) without fail, each and every day. And on weekends, when I had more time, I’d blog even more.

I researched. I wrote. I commented. I actively committed to sharing information about my life to everyone who might find it useful in their own recovery from traumatic brain injury, or in helping someone else who was recovering.

And it was good. It kept me going. It gave me a sense of purpose — a mission, if you will. This went on for a number of years. And yes, it was good.

Lately, I find myself wishing I were blogging, more than I really am. There are a lot of thoughts in my head, but it’s hard for me to sort them out, these days. I don’t think I’m declining cognitively… if anything, I think I’m doing much better than I have in a long, long time — maybe ever. The difference seems to be that I’m handling more on a daily basis. I have more challenges in my work life and home life. I have more responsibilities and more accountability. And that takes more energy from me, to handle everything well.

So, as I volunteer more, as I take on more responsibilities at work, as I gear up for my next career move, as I read more and am more active, I get tired more… so, I need to rest more. And I also have less opportunity for blogging.

And from where I’m sitting, that’s a good thing.

Here’s the thing though — in the midst of doing all that I’m doing, I really need to check in and show the rest of the world that recovery after mild TBI is possible. Recovery of a really high-quality life is possible after multiple concussions. And even when you sink as low as you think you can go, there’s still the chance (however remote) that you can get back.

I used to be pretty active on Twitter, but not so much, anymore. Frankly, it depresses me. It seems like all the concussion and TBI talk is around sports, especially pro football, hockey, Aussie football, etc. Despite the fact that countless non-athletic folks sustain mild TBIs from falls, assaults, and motor vehicle accidents, the talk is still focused on pro sports. Lawsuits. Who’s to blame for CTE in football players… and all that.

And it does the conversation a disservice. Because not only does it accentuate the dire nature of concussion — which just puts fear in the hearts of people everywhere (and possibly makes people less inclined to report or seek treatment) — but it also diverts the attention away from actual recovery.

How DO you recover from TBI? Even Mild TBI can do a number on you (as I found out, 11 years ago). So, how do you deal with it? Work with it? Overcome it? Everyone’s recovery is different, clearly, and what I’ve done may not work for everyone, but for heaven’s sake, certainly we can do better than we are now!

When I say “we”, I should really be saying “I”. Because I’ve been to the “valley of TBI despair” — not once, but a number of times. And I’ve wished I could simply die and disappear into the cold, dark earth. At different points, I’ve lost my ability to read, to write, to understand what people were saying to me, as well as how to regulate my moods and control my temper. I’ve had miserable, terrible headaches that wouldn’t go away 100% for years. I’ve had balance issues, sensory issues, work issues, relationship issues… directly related to and resulting from repeat blows to the head. So, yeah, I know what it’s like — at least in part.

All these things have resolved with me, for the most part… although I do have intermittent issues with them, now and then. And if I don’t talk about that, well, then it’s my bad.

It’s my bad, indeed.

I’m not one for sitting around feeling terrible about myself, though. I’m in a position to make a positive difference, so I will. It’s probably not going to be at the frequency and intensity that I’ve been working at for years, but it’ll be a heck of a lot more than I’ve done for the past couple of months. (Hmmmmm… I seem to remember vowing to do that, a little while ago, but nothing much has happened since then… but I can’t be too hard on myself – something is better than nothing.)

Let me close by saying this: My job situation, as tenuous as it is, is kicking me into gear to really re-examine my job choices. There are things I do really, really well, and there are things I struggle to do. I’ve been urged to master the things I struggle with, for my entire life. Now I’m at the point where I feel like I should put more emphasis on what I naturally do well, and not sink so much time and energy into mastering the stuff that I have trouble with. That’s not to say I don’t want to constantly improve, but I think there’s a missed opportunity to make the most of my innate talents and strongest interests… I just have to figure out what those are, after so many years of swimming against the stream of things I have trouble with.

I’m using this job uncertainty as an opportunity to get to know myself better — not only remembering what I’ve done well in the past, but what I’ve really enjoyed doing in the past (whether I did it well, or not). I have a deadline to update my job goals by next week, probably because of the impending merger, and also rumors that a lot of staff will get cut (mid-level management, I hear — although they always say that, and then it’s the little guys who get axed). I need to state clearly what I’m up to, what I plan to be up to, and why that matters to the company.

So, today (with no meetings — woo hoo!) I can spend some quality time really thinking about them, examining what I’ve done, thus far, and taking stock of what I’d like to continue to do. I can then transfer that into my resume and update it with what I want to do, not just what other people have told me I do well (but I don’t really like to do). Seriously, I am so hard-headed and tenacious and perseverative, when someone challenges me to do something — even if it’s not a good idea — I do it. I pull out all the stops, and I GO FOR IT. But what I’m going for, is sometimes someone else’s idea of a good thing. It’s not always mine.

For the past several jobs, I’ve stepped up challenges and roles that I’ve been asked to take on. Not because I wanted to, but because I was asked to. And I did a fabulous job — better than I thought, actually. That looks good on my resume, and it’s gratifying to realize I did great, but it’s not how I want to keep spending my life. God help me, no. I want to do things that appeal to ME, and that don’t exhaust me like the stuff that other people tell me to do.

That’s my goal. That’s my plan. Now, it’s time to go examine my life, see it for what it has been, what it is, and what I want it to be.

It’s time to dream a little — and put the pieces in place that will let me reach my dreams.

Onward!

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

8 thoughts on “One day at a time, one experience at a time… TBI recovery over the long term”

  1. We can relate to the need for more rest when doing more. My daughter has started cross country conditioning. Woohoo-right? This is the first she has been cleared for sports since her last concussion two years ago. She is running farther each time and needing much more sleep, and has had to begin taking naps. Granted we are in summer mode currently so that is no problem, but once school resumes and all thr homework that is associated with it, she is going to have to prioritize her limited time because of the higher physical demands and sleep needs. It seems she is like an older electronic that works just a little slower, wears down thr battery faster and requires more time for recharging. Since we know that, we can manage it.

    Since you touched on the point of most of the (Twitter feed) news of concussions being about sports injuries, I wanted to add on to that point by commenting that the info out there is also a bit male-centric. I am not judging that, just pointing it out, especially as that is not uncommon in the medical field too and their research focus. For your female readers I wanted to let them know about http://www.herconcussion.com which just this week published two new concussion tracking tools specifically for females. They both came from her recent survey about how has concussion alters menstrual cycles and point out a need for more medical awareness and research. Because it turns out that it has changed for lots of females who have had concussions. That is a dialog that doesn’t come up when the media focus is on male athletes. In my other reading about this, it appears that the timing within one’s cycle when the brain injury occurs may affect recovery. Thanks for letting me add to the dialog by making this statement to raise awareness for your many readers.

    Onward. Yes, such a powerful philosophy and mantra. But I’ve come to think of it as Onward Together because of all the sharing that comes from posting and connecting, even though ultimately the concussion experiences are each unique and require courage to take the path that lies before each one. Having knowledge that others took control and continue to do so is quite a powerful motivator. Knowing the path forward is not a straight line is encouraging too because it gets one through the low times and keeps momentum and hope that positive results are reachable for the average person who is actually quite resilient and brave (but doesn’t always feel or think that way). Quiet, often unsung milestones are happening for so many living with a TBI and having a visible online presence is really vital for keeping the community resilient and not overlooked.

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  2. Thanks for writing – that’s great news about your daughter. Cross-country was a lifesaver for me — it gave me a chance to be athletic and be part of a team, while not needing a lot of coordination and ability to follow the team interactions. My processing speed issues, as well as some sensory issues, pretty much precluded me from organized team sports — especially basketball, which always went WAY too fast for me, required too much coordination and split-second thinking. I always hated basketball, even though my whole family loved to play it.

    I recently had an electronics analogy come to mind, as well — it’s like my Bluetooth is always turned on, and my system is always scanning the surroundings for input, so that runs down my battery. You don’t necessarily have to be an older device to struggle — your brand new smartphone will get drained if Bluetooth is on, and you’re in the vicinity of a store that has one of those radio-frequency scanners that’s always communicating deals and prices and offers to whatever device is nearby.

    Thanks for the tip about herconcussion.com. I have followed them in the past, and yes, so much of the concussion information is male-centric. That’s just what gets funding — and also there seem to be a lot of assumptions that men and women experience the same things, when research is showing that “it ain’t always so”. The physiology is also very important. The timing of cycles is significant for many things, they are now finding — including surgery. So why not brain injury, as well? It’s fascinating, really.

    Onward Together. I like that. I’m going to start using that. Because even though, as you say, we are unique, we have a lot in common, as well, and it is so important to share the successes, as well as the setbacks… and to know that along with all the difficulties, somewhere, someone is having a “banner moment” of small victories that probably took years to reach. And so can we.

    Thanks again for writing. I always enjoy hearing about your daughter’s great progress, and how you’re supporting her recovery.

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  3. I am so thankful that I stumbled upon this blog in a quest to find something other than symptoms lists for TBI/concussion. I am a graduate student. I was diagnosed with a “mild concussion” a year and a half ago after a car accident. My diagnosis was delayed though, because I didn’t go to the hospital right after the accident. Anyway, I have had so many lingering symptoms and struggled to deal with them as a system. It has hurt my productivity at work/school. I have been looking for resources that can encourage me and help me see how others have returned to being productive and functional.

    As I struggle to maintain the routine I so desperately need just to make it through a basic day, my question for you is this: life is unstable. How do I create/maintain the stability I need to succeed post-concussion, but still “live my life”?

    Also, how do you deal with the pressure that unintentionally comes from well-meaning friends, family members, and coworkers who don’t understand TBI? I try not to, but some comments really get me down or make me angry.

    Again, so thankful that this space exists. This morning, I feel a little less alone.

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  4. I’m glad to hear you found your way here, and that it gives you hope. For me, TBI recovery has been all about re-learning and re-training. Reducing stress has been critical for me — and I do that by really using routine a great deal. When I first started actively recovering, I created a morning routine that I followed every single morning, without fail. I made myself a checklist and did everything in order. That helped me to not have to use up brain energy to “reinvent the wheel” every morning. If I had it written down, I just followed my own instructions, and then I knew that not only was I going to do everything I needed to do, but I was also going to have energy to do each thing properly.

    It takes a huge amount of mental energy to improvise, and first thing in the morning, I didn’t have that kind of resources.

    The more routine and stability you create in your own life, in the ways you can, the less energy you’ll have to spend figuring things out (little details are a killer), and the more energy your brain will have to recover.

    As for remarks from others, that one is very hard. I found it very helpful to phrase things in ways that are encouraging to others. For example, instead of saying, “I feel terrible today and I can’t manage anything,” I say something like, “I’ll do what I can – I’m still a little tired from all the excitement / activity yesterday, so I might not be able to do _____, but I’ll give it my best shot.” Just phrasing things in a pro-active way, saying explicitly that I’m taking positive steps, has helped to cut down on the complaints from people around me. One of my siblings is disabled with fibromyalgia and PTSD, and they never get any sympathy from the rest of the family. People who are whole, hale and hearty just can’t relate to chronic health conditions — and that’s what TBI is.

    The main thing for me has been to focus on the things I can do, to control what I can, and let the rest go. TBI can make your brain “lock on” to things others say and take them pretty hard. If you can find a way to not take it personally, that may help. But it’s is very, very, very hard to do that.

    This takes time. And I’ve found that it’s an up-and-down process. But just keep steady and keep working — and Resting(!) — and you can come out stronger than ever.

    I wish you well — and good healing.

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  5. Re: How do I create/maintain the stability I need to succeed post-concussion, but still “live my life”?

    Rest and reaching out to others who “get it.” And more rest. Don’t ever underestimate the need for rest and don’t beat yourself up over it either.

    Re: how do you deal with the pressure that unintentionally comes from well-meaning friends, family members, and coworkers who don’t understand TBI? I try not to, but some comments really get me down or make me angry.

    See above…because if you are not rested, the comments tend to seem more like zingers, even if they are not meant to be. Having time for aerobic exercise and meditation works for us too — because it’s really about changing *our response* to what is said. If a person is trying to understand, but just doesn’t that’s totally different than a person who could care less if you had a TBI in the past. I often just find how to minimize contact with the ones who are not on our team, i.e. those not showing compassion and understanding (even though misunderstandings do occur too).

    More about stability and having routines, we were able to set up a “HomeRoutine” app (available through iTunes) and customize it to our day and also build multiple routines for vacations/breaks compared to when we’re at home. We also have routines for weekend vs weekdays since they are different as it is different for each individual in our family (I only keep the kids’ and mine on the app though, my spouse can manage his own). This gives gold stars, if you like that sort of thing, though I don’t care about that aspect so much as that this program will automatically reset at the time you designate, so each day I can start new without a daunting task of writing a new routines’ list for the day. I do have one category on it that I list “three most important things to do today” and so even if the whole rest of the list gets ignored, I’m still successful at tackling the priorities.

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  6. Yes. Just what you/Tanya said. It’s very true that so much of TBI recovery is about rest – and managing your responses to what happens. Keeping yourself from creating more stress and drama in your brain (with fatigued emotional reactions) is important. And exercise is, too. I actually can’t function very well at all, if I don’t start out my day with some light exercise. And I follow it up later in the day with more. I sleep best, when I am physically fatigued.

    Very interesting about the app. I had not known about it. That could be really helpful!

    Thanks for sharing this great information.

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  7. Thank you both for your helpful responses! It is encouraging just to talk to people who know what I’m talking about, and who can offer advice based on their own experiences. I have managed to get up around my ideal time and exercise the past few days, so I am hoping to see it improve my sleep soon as you have seen. I don’t think I have prioritized rest lately like I need to, so I will pay more attention to that and hopefully see a change in my emotional responses to things. I will try out the suggestion to write the routine down, especially for days when I might be out of my normal weekday routine (i.e. during travel, on weekends, or when my work/school schedule changes), because that is when I spend noticeably more energy trying to figure out what to do next or on simple things like what I should wear.

    Tanya, thank you for sharing the HerConcussion.com resource and the app. I also experienced changes in my menstrual cycle (it came 2 weeks early, is on a shorter cycle, and is heavier now than it was before) after the concussion.

    Thank you both for sharing your stories and experiences!

    Liked by 1 person

  8. I’m glad to hear you got some info that helped. These things take time, so be gentle with yourself. With regard to your cycle, make sure your doctor knows about this, if you have one. Endocrine changes can happen as a result of head trauma, and that might also be contributing to your responses to things. It’s all connected. And it’s good for your doctor to be aware.

    Good luck with everything, and take good care.

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