TBI Life: What to do when you are first diagnosed…
There were some things that I did after my TBI that set me up for success in my journey (see post here). Then there were some things that I eventually started doing, but didn’t do early enough in my recovery and I wish I had. If I had done them earlier, they would’ve made my life a little bit easier. I am all about making my life easier, and all of these ideas will definitely help you reserve your brain for far more important things! If you aren’t able to do this for yourself, please enlist the help of someone you trust to assist you.
Consult with an attorney, specifically one that specializes in traumatic brain injuries
I did this a few months after I started being treated and wish I had done it sooner. There were some gaps in my treatment and things that were of importance that I wasn’t aware of and my attorney was able to set me on the right path. He was also one of the best in New Jersey with handling TBI cases, and was able to get me to some of the top doctors and treatment facilities in the area. If it wasn’t for him, I wouldn’t have gotten the proper treatment at the right time. Also, because my injury resulted from a car accident, he was able to help me navigate the system to ensure my medical benefits continued to be paid and that I didn’t get cut off (which is sadly, all too familiar to those with chronic conditions). I’d suggest contacting your local Brain Injury Association for recommendations.
Get rid of overstimulation- phones, computers, TVs
At one of my first doctor appointments after my accident my doctor told me I was on “mental rest.” To me, that meant that I could no longer do my job and had to be home “resting.” This was completely inaccurate. “Mental rest” meant to avoid things that were overstimulating – which included watching TV, playing around on the computer, texting on the phone, having too many people over to visit at once. Mental rest is the something the brain needs in order to properly recover and I still have to take some days (or hours) here and there to give myself a break from thinking and using my brain too much. When I need to take a “brain break” as we refer to them at our house, I meditate, do yoga, color, or just lay down and rest. I generally end up feeling much more refreshed when I respect these boundaries and give my brain a break. However, in the early days, I spent A LOT more time getting rid of overstimulation and giving my brain a rest.
Type up a Medical Timeline and update it frequently
At some point I went back and typed up a timeline of everything that had happened from the date of my accident, and included all of my symptoms, when they started, what medications I was taking, the names of all of my doctors and what tests had been performed. As I continued to see new doctors, I included the dates of treatment and what was discussed so I could accurately recall the information and refer to it as needed. I kept everything in a word document, was able to update it as needed and printed it before apppintments to bring with me. Since my medical issues are still ongoing (8.5 years later), it’s much easier for me to refer to this document and print it out if I am going to a new doctor. When I arrive at the doctors office, I am able to provide them a copy of it when they ask me to fill out the paperwork and complete a “medical history” form. This causes me far less stress because I don’t have to try and accurate remember it- which is when I get confused, overwhelmed and forgetful. I have also started doing this for our son, because once he was diagnosed with epilepsy I didn’t want to lose track of all of his tests, treatments and medications. One of his neurologists actually commented how organized I was and how she wished all of her patients were like that- little did she know it was a compensating strategy!
Keep copies of everything- disability paperwork, bills, doctors notes, etc.
I am pretty sure I used to throw out a number of things that came in the mail. I’d open the mail, try and read the document and would toss it out because I found it confusing and didn’t want to deal with it. I DON’T recommend doing that. Instead, grab a file folder, and start saving it all. Even if you don’t understand it, find someone to help you with it (or if you have an attorney, give it to them!). I would also photocopy anything I was required to fill out, for my disability company or for a doctor. This is particularly helpful when I had to start filling out questionnaires annually for my insurance company- once I stopped throwing them away, I would be able to refer back to my photocopy from the previous year and it was much easier completing the documentation (and saved some of my brain power, limiting the chance of neurofatigue!).
Do your important tasks first thing in the morning (or when you feel your best).
It makes sense that after my accident, I was more alert in the mornings and generally felt my best. My brain has rested all night and I woke up with the energy to kick off the day. Once I recognized this, I started saving my “important” work for the morning. I would try and schedule my therapy sessions and doctors appointments for that point in the day because I was able to get through them easier than later in the day. As time went on, I was able to play around with the timing and would adjust my days accordingly, but in the early days I wish someone would’ve told me to reserve the precious morning time for when things REALLY need to get done.
Look for support online (Facebook/Instagram and Blogs- Like mine!)
In the beginning, I tried to do a lot of reading about personal experiences and people’s journey with TBI. This helped me think outside the box and explore different treatments when I went to my doctor. I had a really great doctor (initially, then things turned disappointing after one my appointments because as it turns out, he really didn’t understand TBI as much as I thought he did) and when I would go to my appointments with new ideas or things to try, he was pretty willing and able to point me in the right direction. I have been to a ton of doctors and therapists and have found the most success I have had with my treatments is advocating for myself after hearing/reading/talking about different ideas. Every brain injury is different, requiring a different way to treat, explore and manage it- things that work for me, may not work for you, but may be worth considering. Blogs weren’t necessarily a thing back when I began my journey (or maybe they were, I just wasn’t aware of any) but I did get my hands on a number of books and personal experiences about what worked and what didn’t work. I was battling daily migraines and pain so I was willing to try anything and everything that would give me some relief. It took a lot of trial and error for me to get where I am, and it also required me to be open minded about treatments I didn’t think were necessarily for me (like meditation and acupuncture!).
There are also a variety of Facebook groups that cater to certain conditions (TBI, Post concussion syndrome, Mild TBI) so if you have Facebook, get on and request to join! They are great places to post questions and get support- you can ask a question and you’ll get personal experiences and honest answers.
You can follow me on Instagram, njTBImom, and if you’d like the name of some of the Facebook support groups, feel free to send me a message and I’ll get them to you.
Don’t try to do to much too soon
I wanted to get better as quickly as I could and tried to do too much too soon, which just caused me additional setbacks and stress. I was extremely hard on myself that I wasn’t able to do the same things that I could before my TBI and would push myself to the limit, which would then result in me being in bed for days at a time and unable to do even more. Once I started noticing this rhythm, I started planning on only accomplishing one task a day (in addition to eating three meals, showering and getting dressed) and I would have one primary goal that was my objective every morning. If I was able to do more then great, if not, then I still felt like a success because I accomplished something. I still do this and it helps me plan my days/weeks more effectively and allows for downtime during the days I really need rest and can’t do anything more.
I am sure there are some more things I should have done, but I’d love to hear from you- What am I forgetting? What are your should’ve, could’ve, would’ve tips to those just starting their TBI journey?