The first couple of months after my accident were among the hardest. They were hard because I didn’t really know what was happening to me. I still hadn’t met with the team at the National Rehabilitation Hospital so I didn’t understand the magnitude of my brain injury, or it’s symptoms.
I had very little energy. I was really down on myself. I was becoming extremely negative. I’m usually full of energy, upbeat and one of the most positive people you would ever meet – annoyingly so at times!
In hindsight I should have moved home for a little bit – had more support from Mum & Dad – if for nothing else than to cook my meals and get some TLC. But my medical care was in Dublin. So I needed to be here and to be honest, due to the rollercoaster of emotions going on inside of my head, I didn’t want to be at home. I wanted my own space. I just wanted to be alone.
Anyway, almost every day I would sit in my room and cry. Sometimes because I was frustrated, sometimes because I was feeling sorry for myself, but other times I really didn’t know why I was upset but I would just sit there crying. I couldn’t have put my parents through seeing me like that.
Or maybe I was being overly dramatic. Was I really in pain all of the time? How could work really be this difficult for me? I was struggling to get through a few hours at a time in the office, but what was causing me to feel this much pain? I needed to figure this out and get back to being myself again! I needed to understand what had changed and figure out how to adapt to my new life.
I was advised by an Occupational Therapist in SVUH to keep a headache diary. Simply track the severity of my headaches throughout the day and rate them out of 10, noting down what I was doing at ‘particularly painful’ times and if I had any other symptoms with it.
It turns out there was a lot of these ‘particularly painful’ times. Starting first thing in the morning with my commute to work – the noise, the crowds, the brain power in general it required to get to work.
Then came work itself. Looking at a computer screen and trying to concentrate on it for hours on end was a massive struggle. It almost always left me in absolute agony, exhausted and confused. And 80% of my job required me to sit at a computer all day long! The other 20% was going to meetings which I had to cut out completely! They were far too much for me to cope with – lots of people talking and chopping and changing between topics!
Talking on the phone in a busy office, with other people having different conversations around me also didn’t work. I couldn’t concentrate on what the person on the other end of the phone-line was saying, never mind formulate a response to them.
Then came the commute home again. Crowds. Bright lights. Sirens. Traffic. Holding a conversation with my housemates. Noise at the gym. Doing my grocery shopping. Watching TV. Scrolling through my social media. Talking on the phone to my family. It seemed as though everything would set me off in some way. I never stopped writing in this headache diary! It felt as though I was getting worse, not better.
After about a week of keeping my headache diary I realised that I wasn’t being dramatic, I really did have a pain in my head all of the time. I woke up with a pain in my head, I spent all day with a pain in my head, I went to bed with a pain in my head and I woke up throughout the night with pains in my head. It was constant.
However, with the relief that I wasn’t a drama queen came the stress of…. “How was I going to make the pain stop?”. Eventually, when I received support from the NRH team, this question would be answered and the detail in my headache diary would play an even greater role in my recovery. Together, we would identify trends and come up with solutions to manage the pain in my head, along with my other symptoms.
Headache Diary Findings
After another few weeks the diary helped me to identify what activities and parts of my day made the pain worse. Trends were beginning to jump out. And not just trends of what was making the pain worse but, over time as I began to try things to help ease the pain, I could also see which ones were working and which ones were making no difference at all.
The first think I realised that WASN’T working for me was any form of pain killers. It didn’t seem to make any difference when I stopped taking them for a period of time. So I continued without them, only taking over the counter pain relief on occasion. I found that taking it less frequently actually helped me more as my body wasn’t immune to them and I actually felt the benefit then when I took them. [However, just because this worked for me doesn’t mean it’s what will work for everyone!]
And one thing I realised that definitely WAS working for me was exercise! Over time both of these lists would get longer and I began to fine tune exactly what it was that helped me to manage my brain injury and get back to living a normal life.
Sample Headache Diary
So, if you haven’t already started one, here’s a sample headache diary that you can use to get started! Just download it here and start tracking. I promise, it will come in handy on your journey to recovery!