The early days of TBI – What did I do right?

My daily life right after my accident was littered with post-it notes, forgetting to eat meals and watching reruns of Law and Order every day.  My fiancé (now husband) would walk in from work and see me watching the same episode of Law and Order that I had watched the day before- I didn’t have any recollection of having watched it previously and probably sat through it several times (nowadays, I can sometimes recall something looks familiar, but I may or may not be able to tell you the details).  I don’t have very many memories of the “early days” but I know I went through the motions of life (wake up, shower, get dressed, brush teeth, go to some type of therapy, etc.) by following post it notes that I had all over my house. When I went into the bathroom it would say “shower & brush teeth” and when I went to the kitchen another note said “eat.” Somewhere in the house would be a post-it as to what I needed to do that day “therapy” or “Clean bathroom” and that was how I survived, achieving the appearance of high functioning because I was groomed and brushed my teeth daily.

Those days are a big blur and I didn’t start writing everything down until I was already until  my recovery for a few months but there are a few things that I did,  right away, that helped me navigate life after TBI.  So, what did I do right?

I took a leave of absence from work. 

I was on vacation for two weeks following my accident and it was during that time that I started having debilitating headaches and I became unable to walk from our living room to our bathroom without throwing up.  I had superhuman hearing as I called it and could hear the slightest noise like it was blasting in my ear and had similar sensitivity to smell, I would be in our condo smelling paint from a new unit owner that was doing work in their home.  I knew things weren’t right and since I couldn’t walk without the world spinning, tried to work from home after my vacation ended and went back to the doctor to discuss my issues.  He recommended I take a leave for “a few weeks” until I started feeling better and was able to work effectively.  I was worried about leaving my team in a lurch with busy season, but I took a leave and took recovering seriously.  Note that this didn’t come without feelings of helplessness and depression, but that’s an entirely different topic.

I took it slow.

Getting ready in the morning (or midday depending when I woke up) sometimes took me hours. I would take breaks as needed and I planned for things to take me much longer than I would like.  Everything took me an enormous amount of energy and took wayyyyyy longer than it used to. I planned for it and now it’s just a way of life.

When I started therapy (physical, cognitive and  vestibular) I typically only scheduled one session of something a day because that alone would wipe me out. Too many things in one day made the next day horrific. This meant that I couldn’t participate in a number of social engagements because I would use all of my energy on therapy.  Taking it slow and not over exerting myself allowed me to learn my limits and eventually identify when I was hitting a wall and needed a break.

I had advocates.

My mother and/or sister accompanied me on every doctor appointment/therapy session to discuss my progress. I wasn’t able to drive at the time, so they had to be there, but they didn’t need to be involved as much as they were.  This was vital to my success, because I would’ve minimized anything I was experiencing for fear of sounding ridiculous and embarrassing myself. I was especially tough on myself for things I couldn’t do (or what I would forget to do, that were routine). I also know that I would’ve forgotten to address things that I should have. By having either my mother or sister with me they were able to be my advocate and discuss how much I have changed and what could be done about it.

I had the right doctors and therapy.

One of the first doctors I went to took a “wait and see approach” and just kept telling my family I needed more time to get better. I did need more time,  but I also needed the  appropriate therapy. After getting an attorney that specialized in head injuries, he was able to get me into one of the best facilities in the State, they had a wait list that was a few months long, and I got on it and within a few weeks was able to be assessed by their neurologist there. At my first appointment, I was greeted with one of the most friendly receptionists who told me to “follow the signs” and asked me if I needed a direction sheet. I knew I was in an amazing place- they took all of the confusion out of me having to navigate back to the room I was headed, it was such a relieving feeling.  The neurologist I met with identified a number of therapies I would benefit from and I started with their program at their facility- one of the two best spots in the State of NJ.

I wrote it all down.

I wish I had started doing this sooner, but at one point, I started writing down every experience I had with doctors and treatments.  When I would be in an appointment I would take notes so I could follow up on them, and when I got home from the session I would jot down a few things or if I felt well enough, type up my experiences, to do’s, things to remember.  This helped me organize my thoughts and let me action the items that I would be given.  I also started writing down all of my questions to bring with me to appointments, that way I didn’t miss anything.

This was especially helpful when the insurance company had me attending IME’s to see if I would be approved for further treatment.  I would recap my experience with the doctor in a word document so when I got the report (likely weeks later) I would be able to recall if the report was accurate or not (sadly, in a number of instances the doctors would portray the examine differently).

I read a lot of books. 

Reading after my accident was and is something I still struggle with- I can’t retain information, forget what I just read, and have difficulty following stories that have several plots.  After my accident, I turned to Amazon and bought a number of books about TBI and despite struggling to read each of them, was still able to takeaway a number of tips and tricks about things I could be doing and things to think about.  A few of my favorite books were:

In an Instant: A Family’s Journey of Love and Healing

Over My Head: A Doctor’s Own Story of Head Injury from the Inside Looking Out

Living with Brain Injury: A Guide for Families, Second Edition

I learned a lot from these experiences and was able to relate to a number of things in these books. I also found the authors to be extremely inspiring (one was a published author, after her TBI, after all!) and it didn’t matter that I couldn’t remember the details, I remember them inspiring me, giving me hope and a reason to keep at my recovery.

So survivors, what are some of the early things you did in your recovery that attribute to your success? What are some wise words you’d share with someone just beginning their TBI recovery? I am sure I am missing a number of things, but this post is getting long and I don’t want to lose your attention so if there’s anything else I am forgetting (ah, the irony), I’ll post another day!

 

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