For the first couple of months after my accident, I was in and out of St.Vincent’s University Hospital to a concussion specialist every week. I honestly didn’t really know what was going on, all I knew was that my test results never really seemed to improve. The specialist mentioned ‘Post-Concussion Syndrome’, ‘Mild TBI’ and not knowing how long it would take to recover as “everybody is different”, but it all went over my head. After a couple of months of no improvements, I was referred to a consultant in the National Rehabilitation Hospital (NRH).
Whilst waiting on my appointment, I (stubbornly) decided to return to work part-time, less than 2 months after my accident. This was when I thought getting back to work was the most important thing in the world and would fix everything! I didn’t know how to justify being out of work, spending all day at home, when for the life of me I couldn’t explain what was actually wrong with me. How could I possibly justify that to myself, never mind my colleagues?
And anyway, I looked absolutely fine – there wasn’t a bruise or a scratch on me. (It turns out I actually looked dreadful; tired & pale, but I didn’t notice that.)
Reality of a TBI
By the time I met with my NRH consultant I was seriously struggling with working part-time. I left in tears most days, and that was when I made it into work at all! I was exhausted and in pain every second of every day.
I would often find myself zoning out and have no idea what was going on around me. I would find myself looking at a computer screen and not remembering why I was doing what I was doing, or what it even was that I was doing. I had to stop going to meetings because when I went they would usually end in, what I would come to call, ‘An Episode’.
[My episodes varied, depending on the situation, but they generally consisted of an out-of-body-experience and nausea, the pain in my head would get worse to the point of feeling like my head was literally going to explode, I would struggle to breath and I wouldn’t be able to speak.]
Not only was I struggling at work, but I was struggling at home too. I had just moved in with 3 new people so we were all trying to get to know one another. But I was exhausted. I was cranky. And I was emotional. All I wanted to do was sleep and be by myself, away from any noise. Anything that made my brain work that little bit harder.
Actions Speak Louder Than Words
But there I sat, infront of my consultant for the very first time, and I pretended everything was fine. I told him I was happy, I told him I was getting better, I told him it had all improved…. I was lying.
I was just so angry and frustrated and I wanted it all to be over! It made perfect sense to me. Tell him I’m ok and I’ll be ok. They’ll all stop talking about concussions and TBI’s and I’ll move on with my life.
But, luckily for me, he did his job. I could lie with my words but I couldn’t lie with my actions. Following our initial conversation (where I lied through my teeth about how I was feeling), a series of simple tests showed a flicker in my eye. When I looked to the left my left eye would stop for a second and then continue again. And it hurt… It hurt like hell. The whole thing hurt – the conversation, the concentration, the movements, the pretending, all of it!
I was exhausted. I was nauseous. I was anxious. I was upset. I couldn’t get out of there quick enough.
Needless to say, I was referred to the NRH outpatient clinic for further tests.
And So My Journey Began
On my first visit I met with my Rehab Occupational Therapist. As soon as I walked into her office everything changed. She asked me how I was and immediately I just broke down crying and kept repeating “I don’t know, I don’t know what’s wrong with me”. I hadn’t managed to make it to work the last few days as all of my symptoms just seemed to be getting worse and I was just so exhausted.
This was the first time I had cried and been truly honest with a medical professional in 3 months. Sinead would go on to become one of the most important people in my recovery. This is where my journey really began…
She immediately removed me from work, indefinitely, and of course I was devastated. I had failed. My biggest goal at the time was to get back to work and I had failed so completely. It would take a lot of work to build my confidence and spirit back up after that knock, but I would get there.
However, after spending the last 3 months not understanding what was wrong with me, not really realising it was anything serious, she sat me down and explained everything to me. I didn’t just have concussion; I had a mild traumatic brain injury (so that’s what TBI is!!) or post-concussion syndrome.
This was the first thing that I struggled to understand though. Why are there so many terms for the same thing? ‘Brain Injury’, ‘Concussion’, ‘ Mild Traumatic Brain Injury’, ‘Post-Concussion Syndrome’, ‘Acquired Brain Injury’ – which one did I have?
It turns out they all mean the same thing really, but because everyone’s brains are so different and, depending on where you injured yours, different brain functions can be affected in different ways. Even your external environment has an impact. So, there is no ‘one way fixes all’ approach. It’s trial and error, it’s spotting trends (this is where my headache diary became extremely useful), it’s listening to the experts, it’s being patient.
Patience; Living With A Brain Injury (TBI)
Patience certainly wasn’t something that came easy to me, but over time and after allowing my stubbornness get the better of me one too many times, I began to learn the art of patience.
I also learned that there was no point ignoring the problem, I had to accept that there was something wrong with me and face it head on. Trying to ignore the problem had almost cost me any and all medical support.
I began to see the small wins as big wins. I began to see no improvements as a positive thing – as at least I wasn’t going backwards. Nothing is more frustrating than taking steps backwards in your recovery. I had failed at my first return to work, my biggest goal at the beginning of my recovery, I wasn’t going to let that happen again. I was going to be patient. I was going to listen to the experts, learn from my mistakes and try again.