My “Ah Ha!” moment — What I wanted to know about how to recover and rewire after my injury

I had an “Ah Ha!”  moment about my posts this past week.    With my brain the way it is now, I have to learn more by doing as opposed to thinking things out ahead of time.   Often,  I just have to get going on trying something new, like writing this blog.   Once I have have practiced at it abit, it comes to me where I am trying to go.

My “Ah Ha!” moment was that all my posts have been about trying to describe my “new normal” from the perspective of many years out after my injury.    You can go back and look at them.   Some are about some of the gains that I have made long after my injury–like driving and speaking to the media and how practice has helped me.

Others have been about some of the work I still have to do to stay on balance.

These have been descriptions of different aspects of my “new normal” !

So far, I have talked about how I have hope because I know how to rewire my brain and recover more functioning.  This is called neuroplasticity (and I will come back to it).    Overall, I know that neuroplasticity is working for me —  I am still getting better and the evidence that I am still getting better gives me hope that I will continue to do so.

I also know that I have persistent symptoms following concussion/mild TBI and that I am not “well” and that I need to work hard using my self-awareness, using the compensatory strategies I have learned from doctors and professionals  (in and out of outpatient rehabilitation (which it took years to get receive)).   I have also learned from self-care, from managing and respecting my limitations, and all my strategies to cope with my injury long after the initial “acute” injury–the actual swinging of my head from back to forward and from side to side (referred to as the coup-contre-coup).

And when I am on top of my game, I have to work at it very hard, but my life goes okay and is meaningful.  And my life is getting better at a slow, but overall, sure rate.  I have had long-term recovery and rewiring and it continues (although at a slower rate than I would like, but better than no rewiring at all)

And when external things come up (like they do in life) or I get sick  or I get out of balance for whatever reason, then I need to step up my work to get myself back in balance.    Sometimes I am unaware that there’s too much on my plate or I need “to be cued” to compensate for them and sometimes, it takes me awhile to recognize that I am off balance and I fall “off my game”.    This is part of life.

When I am off my game, my life can become intolerable and I am irritable and cranky and I can get down and depressed and at some times, when it gets really bad, I simply don’t want to go on.  So I know I want to do everything I can to avoid getting in to that “trough” or valley or even getting near it.    At this point in my recovery, I have learned alot about how to manage this downward cycle that I would describe like an airplane in a tailspin.   I know I need to use all my strategies to keep me from getting in a tailspin and if I am unable to avoid getting in a tailspin or do not recognize the tailspin until fairly late, then I must use them to get out of tail spin as soon as I can.    I have a list of things to do to pull me out of a tail spin and reminders to be patient because it takes time.

I think everyone’s life has its ups and downs that may need to be managed abit.   With persistent symptoms following my concussion/mTBI,  I have learned that my issues may just be more extreme.  Some of the strategies that I use might have been helpful for me prior to my injury.  Now they are critical.

And that is a rough description of some of the things that come to mind in describing what my “new normal” is like.

 

 

 

 

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my blog is a work in progress

I view this blog as a work in progress.   I wanted to let you know that.   I am practicing being patient with it.

I find practicing being patient to be one of the hardest skills.   I want to race ahead and to do so much more with the website and with the blog.   I have alot to say about what I have learned about the brain from developing my awareness about my own brain, from listening to media, from attending conferences, from my advocacy and from talking to professionals, survivors and their families.  And I want to talk about what I have learned here!

I have a lot of limitations to work around in writing the blog, however.   I have learned that my day goes best when I respect my limitations.    When I don’t respect my limitations, my life literally falls apart.  I have unintentionally tried that many times.   It doesn’t work.

What are some of my limitations?    Like anyone else, putting up a website and writing a blog would be a new project and there is alot of new learning that goes on with trying to master something new.

What’s different for me is that my new learning happens at a slowed rate — much slower than I was used to it happening.  I have learned alot of awareness and acceptance of my learning curve.   So when I take on things knowing that it will take   “awhile” to get the hang of it, it goes much better.

Since I remember that I used to learn things much more quickly, I have to work hard not to get frustrated in doing something new.   Whatever it would have taken before, it takes alot longer now.   I have to set my expectations realistically and allow myself more time.  I have to let my new slower learning curve be okay.  It is what it is.

And for me, the computer is no longer my friend.    Working on the computer and focusing my cognition while typing takes a great deal more energy for me than you would ever think.   So I have to limit the amount of time I can spend working on the computer.   And if I don’t, I won’t have sufficient energy for all the other tasks I need to do in the day to care for my son and contribute to keeping my family’ s life together.  I rely heavily on the support systems that my husband and I have built to help us but I also need to contribute what I can.

And, I only write content for the blog.    Its my dear husband, Michael, who understands how to add the picture to the blog and who understands how the blog does or doesn’t work.   He’s got alot on his plate with work and helping me out with household and day-to-day stuff.   He pitches in with the blog when he can.   He tells me that there are technical things that he still needs to fix about the blog.   Since I cannot do them myself, I need to find patience to be happy with them as they are until he can find time to get to them.

Construction

These are only some of the limitations I face in working on the blog.     But I wanted to put them out there.  I have found letting people know my limitations is useful for helping others learn and develop awareness and understanding about what my abilities actually are right now.   I am hoping to find more support around developing my blog as I go along.

So, my blog is a work in progress.

I hope you will be patient with it too!

An end note:  After I wrote my draft blog for this week a couple of days ago, I had difficulty getting to sleep.   Not being able to get to sleep is usually the sign that I have spent too much intense-cognitive time on the computer.    So today I am going to try to stay off the computer other than to proofread and post.    Yesterday I got my sleep patterns back to normal.   That’s crucial for me–I have to nip increased sleep issues in the bud.   Today, I want to keep them back  at the place that’s normal for me and enjoy my more restful sleep tonight.

 

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