I had just returned to work for the first time and, as you may know by now, life with a brain injury was challenging to say the least. I struggled with the commute. I struggled to interact with colleagues and clients. I struggled with the noise. I struggled to concentrate. I struggled with just about everything. I had a constant pain in my head. But one of the elements I struggled with the most was meetings.
I wasn’t back at work long – probably only a couple of days – and I found myself in a meeting. Luckily it wasn’t a client meeting, it was actually a supplier in taking us through some research and some upcoming work. I remember sitting there, trying so hard to take in what he was saying, feeling extremely nauseous and feeling like my head was about to explode.
The next thing I know it feels like I’m looking down on myself. I’m just sitting there watching everyone else engage in conversation but I can’t get any words out. The only way to describe it is how I imagine an out-of-body experience must feel. I wasn’t sure what was going on, or what was going to happen next, but I knew I had to get out of there. I could feel panic beginning to build up as I realised I didn’t quite know how to do that. Inside I knew what I needed to do, but it was like my brain couldn’t get my body to do it.
Eventually, I managed to get up and go outside. Everything was blurry, I couldn’t breath properly and I needed to get sick. The pain was unbearable. I was gagging. I was going to puke right here on the side of the street. I sat on the path with my head between my legs and tried to focus on my breathing. Eventually, I’m not sure how long later, I managed to catch my breath and calm down. The nausea stayed, but the immediate feeling of getting sick had passed. And then, I burst into tears.
Did That Really Happen?
I sat there on a path, in an ally way in Temple Bar, trying to understand what had just happened to me. My head was piercing with pain. Did that really just happen? Was I really just looking down on myself in that room? Was I really not able to get any words out? I could see people staring at me, why are they staring at me?
I decided I should just go back inside and get on with it. But I couldn’t… I couldn’t physically get up off of the path. I was just sitting there. My body had no desire to move and, although I was thinking that I needed to get up and go, I just didn’t. I couldn’t. It was as though my brain just couldn’t connect with my body to get it to move. So I stayed sitting there.
I’m not sure how long I was there, but eventually a colleague came out to find me and check that I was ok. As soon as she came out, the tears started again. She asked me if I was ok, but I couldn’t respond to her. I could feel my mouth opening to respond to her, and I knew what I wanted to say, but I couldn’t get the words out. I could see the worry and concern in her eyes. My brain was trying so hard to force out the words, but I couldn’t get them out. What was wrong me?
She asked me to come back inside, and suddenly my body knew how to get up. It was like my brain just needed to be told by somebody else. So, I stood up, followed her inside and sat in a daze on the couch for a while with people coming and going asking me how I was. I don’t really remember much else other than I must have packed my bag and went home. I was exhausted.
A Bad Hangover
I slept for most of the rest of that day, but when I woke up I still felt awful. It felt like the worst hangover I had ever had, times 1,000! But I didn’t understand what had happened and I didn’t know how to explain it to my friends and family. I passed it off as a ‘bad day’ and that I’d sleep it off.
I soon discovered that events like this would become a regular occurrence in my life and they would take days, in some cases weeks, to recover from. I came to call them ‘ My Episodes’.
My episodes occurred most often in large groups – be it socialising with friends, travelling on public transport or taking part in work meetings. However, they could also occur when I was alone, most often due to too much noise or too much movement in front of my eyes. Each situation was making my brain work too hard. It was taking too much concentration to process what was going on around me, be it too much noise to filter through or too much movement to process.
Sometimes my speech would come back quickly, sometimes I couldn’t speak for up to half an hour. I never cried during an Episode, but as soon as it was over I would ALWAYS burst into floods of tears. I just couldn’t hold them in. More often that not, I ended up on the side of a street, or outside somewhere for air.
When I was alone, I would have to sit there and wait. Wait for someone I know to come and get me – be it a colleague coming in search of me, or texting a friend (I couldn’t physically speak but I could process words internally and put them in a text message) to come and get me. But whenever they came, that was all I needed to get up and move back inside, or to go home. I just needed someone to tell me what I needed to do – then my brain could do it.
I don’t know how else to explain it. I understood what people were saying to me and I could nod my head and follow instruction. However, inside, my brain was telling me those same things, but I couldn’t process it enough to make my body do it.
At first, it was terrifying for me. But it was also terrifying for my friends and family. I knew what they were saying to me but I couldn’t respond. I would open my mouth to say whatever it was that I was thinking but the words just wouldn’t come out. I would be trying so hard to speak but I couldn’t. Of course, this would panic me more, make me more upset and honestly, just plain terrify me. I was losing more and more control over my life.
People began to notice a flicker in my left eye in the build up to me experiencing an Episode, or if I was really struggling inside my head. I didn’t notice it myself, but my left eye would blink uncontrollably shortly before, during and after my Episodes. It would also flicker when I didn’t understand what was going on, or if the pain in my head was getting too unbearable.
[This was obviously linked to whatever my consultant had noticed that first day I met him, and over time it improved]
However, it became my ‘tell’. I couldn’t control it, so when I was really struggling people could tell. I guess it was a good thing, but it didn’t feel that way to me. It felt like I had lost the last bit of control I had left in my life. Before, it was up to me to tell people if I was in pain – if I didn’t want to share it I didn’t have to. I could deal with it alone, or I could choose to ask for help. Now that was gone. People could tell. They could see I was struggling. It felt like my last bit of control was gone and there was nothing I could do about it.
Learning to Manage my Episodes
Over time I learned to manage my ‘Episodes’. I implemented various activities into my life to help prevent them from happening at all. However sometimes, no matter how hard I try, there is just no avoiding them. So I’ve also learned how to deal with them better when they do occur, and how to help my brain and body recover much quicker too! Below you’ll find some of my top tips for both preventing and dealing with Episodes.
Tips for Preventing Episodes
- Wear headphones when you’re out in public, or at your desk in the office to help block out any additional noise and distractions. (Click here for more Tips on managing Noise.)
- If you’re planning on socialising with friends (anything from going to a cafe or restaurant, to going for a walk, to staying in and watching TV) – plan as much as possible in advance.
- Where are you going? Can you request a quieter table? Sit at the end of the table so that you only have one voice as opposed to 2 voices [one on either side of you].
- Can you arrange to meet at a time when there are fewer crowds both on your commute and at the location?
- Are you familiar with the location? New places can often require extra brain power to process.
- Look up the menu in advance and decide what you want to eat. It will be one less thing for you to have to worry about when you’re there. I found making decisions impossible after my accident! Not just when it came to food, but with everything!
- Do your grocery shopping, make appointments, run errands etc. at quieter times to avoid busy crowds.
- Avoid public transport where possible, but if you need to use it, wear your headphones and don’t browse your smart phone. There is already so much for your brain to process on public transport, so don’t add to it! Try to sit or stand in a quite place and near an exit so that if you need to get off suddenly then it’s easier.
- Practice Mindfulness; the more I practiced, the quicker I was able to catch my breath and stay calm during my Episodes.
Tips for Dealing with Episodes
- Go straight to home to bed and switch off from the world. Both your brain and your body are exhausted after an ‘Episode’, so you need time to recover.
- Try to forget about it. It’s happened now, there’s nothing you can do about it.
- But, do try to learn from it! Was there anything in particular that you think set you off? How can you manage that going forward to try to prevent it from happening again? This is where your Headache Diary can come in really handy!
- Eat! You may not feel like it, but you need to refuel your brain and your body.
- Track your Episodes and share them with your Consultant, Occupational Therapist, your Councillor and anyone else who maybe able to help identify trends in what is causing this extra pressure on your brain.
- Talk to a friend or family member about how you are feeling after it! Don’t bottle it up! Let it out and you will feel all the better for it!