Love: ‘It’s like you become more you, which is normally like BOOM but now it’s okay because the person, they chose to take all that on. All that weird stuff, whatever’s wrong or hiding in you suddenly it’s alright. You don’t feel like a freak anymore’ Suzanne (Crazy Eyes) from Orange Is The New Black

Appointments with my psychiatrist are something I usually do alone but Stephen attended one with me on Friday 7th July. Even though we’ve been together for just over four years and he’s the one person who understands my brain injury the most we feel that lately he’s become less aware of my daily struggles. This is because he works away during the week and is only home on weekends so he’s not used to being around me all the time anymore. He gets frustrated with me which he never did before and he mentions things he didn’t before, such as:

“You need to handle pressure better”
“It’s easy” (When talking about the simplest of tasks)
“It’s easy to remember, you don’t need to write it down”

He doesn’t mean to say these things and he doesn’t mean to upset me, we both know that but we both know that he needs to understand why. Why I can’t handle pressure, why I get upset over nothing and why sometimes, the simplest of things aren’t easy.

The things he’s mentioning are only because he’s not around me all the time like he used to be, he has been amazing ever since he met me and I thought of the quote above the photograph ‘Love: ‘It’s like you become more you, which is normally like BOOM but now it’s okay because the person, they chose to take all that on. All that weird stuff, whatever’s wrong or hiding in you suddenly it’s alright. You don’t feel like a freak anymore‘ because ever since our first date where I bared my soul (scar and bald head…) he chose to take me on, to take all that on.

He asked me questions so he could understand me and my injury more, he didn’t shy away from my scar, he came to appointments with me to further understand. I remember my first ever appointment where the doctor was asking me how I was with memory, fatigue etc and I just said “Oh, I’m fine” and that’s when Stephen stepped in to explain that I wasn’t. He saw me more than I saw myself and he saw the things my brain injury had done to me. I was so naive at that time because when I left hospital no one informed me of the lifelong troubles I would have, I honestly thought it was a minor surgery and I could get on with my life. I didn’t receive any follow up help for six months, I feel like this contributed to part of that naivety.

In this blog post I’ll be explaining the things we spoke about on Friday, the advice that was given and how they apply to almost everyone living with a brain injury. I hope you find it helpful and if you do please share to help raise awareness.

How I can’t handle pressure

After a brain injury the part of the brain that processes information is damaged. Which means it takes the brain longer to process information and under pressure this is impossible, if people don’t understand this and keep giving you information and instructions it only makes it more impossible…and more frustrating.

There’s times with Stephen where this will happen. He’ll keep giving me more instructions and I won’t understand because there’s already too much information in my brain. I’m frustrated, flustered, overwhelmed and because of all this I become angry and my brain feels like it might pop. The advice given to him was to take a step back, because his brain has the ability to do so and give help slowly so I’ll be able to understand or give me time to calm down and come back to the situation later.

Stephen gave a great example of this situation in the form of a question: “What if there’s a situation where I can’t step back? For example if I’m driving and Naomi is giving me directions but she’s not giving the right ones so we’ll get lost?” the psychiatrist’s answer was “There’s no advice for that. You would have to get lost or pull over to look yourself”

This example can make anyone understand a brain injury.

Short fuse

Having a short fuse is one of the most common side effects after a brain injury because the part of the brain that controls emotions is damaged, which often leads to:

• Getting upset over the smallest of things, things that wouldn’t have bothered you before your injury
• Shouting or snapping without realising
• Crying without wanting to
• Random emotional outbursts, it can be one single emotion like anger. Or you can feel all of the emotions at once: these can be the hardest, often leaving you overwhelmed both emotionally and mentally. Try to find somewhere to calm down or if you feel like you need to, have a nap (this is something I’ve come to learn without help)

Because all of the above things are cognitive they can’t be helped, but we did receive some advice, including something that is easier said than done: say “I’m too angry to talk” and the advice mentioned in the above section ‘How I can’t handle pressure’

Noise sensitivity

Noise sensitivity is something I really struggle with, this contributes to the short fuse and random emotional outbursts. I can’t talk at home if there’s noises such as TV, radio, music, washing machine, tumble dryer or phone noises on. If Stephen shouts me from the lounge while I’m in the kitchen when the tumble dryer is on I’ll shout “WHAT?” without thinking, I’ve gotten better at this with time…I now go into the lounge and say to him “I can’t hear you because the tumble dryer is on” or if I’m too busy I’ll turn the tumble dryer off because we’ll be able to hear each other properly then and I’ll ask nicely what he wants.

While I’m out and about I really struggle though, the smallest of sounds are made louder and are all running around in my head, I can’t think properly let alone speak properly so often at times when I’m outside I don’t speak…at all. If I have to speak? the words come out angry, snappy and I honestly can’t hear myself speaking. I just hear the noises running around in my head.

There are so many noises outside, way too many to list and when you have noise sensitivity you notice every single sound, if you’re reading this and you don’t have a brain injury or noise sensitivity next time you go outside put your fingers in your ears to block out sound for a moment then take them out…you’ll probably notice more sounds than you did before.

Just like other brain injury symptoms I’ve tailored my life around noise sensitivity.

• I now book a quiet table, which is usually a corner table facing away from a crowd at a restaurant. If we spontaneously go to a restaurant and a waitress gives us a table in the middle of the room I’ll (sometimes very nervously) ask for a quiet table, even if it’s a booth that is supposed to fit lots of people I still ask for it. This isn’t selfish, you need to look after yourself
• When we do get a corner table, even though it’s a quiet area there is always one seat where people are behind you. Stephen always gives me the quietest seat that no one is behind
• Noise cancelling headphones, such a simple thing but they do such a great job. I’m in my own little bubble and not being surrounded by noise means my chronic fatigue symptoms are slower to arrive
• If I’m somewhere where I can’t escape the noise I go and hide in a public restroom, I put the toilet seat down, lean my head against the wall and close my eyes for a few minutes. This sounds so sad and I don’t think anyone (not even Stephen) knows I do this…but it really does help

Although I do all of these things I always feel weird, nervous and sad when we’re with a group of people and I ask for the quietest seat because some people don’t know and I feel like they look at me in a strange way. I think I’ll always feel that way, for me, feeling strange in normal situations is another side effect of a brain injury.

No filter

After a brain injury you are no longer able to filter your words, your brain does not think before the words come out, it no longer has the ability to. You say something without knowing you wanted to say it, this can be linked to the part of the damaged brain that handles emotions which lead to random outbursts or can just be during a random conversation when you feel completely calm.

I’ll give an example. I was talking with one of Stephen’s friends who I’d met a couple of times before and he was talking about his surgery:

“Have you had surgery? Going into the theatre is so weird”
“Yeah but I don’t remember it because I was pretty much dead”

He moved his head back in shock and I did the same inside, I didn’t even know I was going to say that…my brain does not have the ability to stop and think and sometimes it doesn’t have the ability to think at all.

In conclusion

In the session I feel Stephen and I didn’t receive enough advice. Despite this Stephen said he’s glad he came because he can see and understand more of what I go through, I also feel that now he’s been to one I can talk with him about my future ones with ease. He also said when I when I go to future sessions he can picture me in his head (aww) something that surprised me? He had no idea about some of things I struggle with…but like I said, we’re not around each other all the time now.

Just like Stephen, I also discovered something about my brain injury that day. I can say the wrong word thinking it’s the right word up to five times, even if Stephen asks if I’m using the right word I’ll say I am and use the wrong word again. I usually think of my symptoms as frustrating or depressing but I think this one is just fascinating, especially because the wrong word relates to the right word in some way, for example I’ll use ‘table’ when I mean ‘chair’…isn’t the brain just incredible?

This has been a hard blog post to write and has taken six days to write, I didn’t feel positive at all after the session. I just felt like these problems and worries are going to go on for the rest of my life and I still feel like that because, let’s not lie…they are. Especially when new situations arise, when things in life change, when we go to new places and just day-to-day life in general.

I feel my cognitive problems lead to negative thinking because sometimes, even for me it’s hard to accept that things now take longer, are harder and are more confusing. I hate the fact that my brain injury debilitates me so much, I hate the fact I can’t concentrate if there’s noise, I hate the fact that I have to take regular naps and I hate, really hate my random emotional outbursts. Although many random outbursts are cognitive I also feel they’re already sat waiting in our subconscious ready to explode. One example that I think most brain injury survivors will have is when you try your very hardest and someone says it’s wrong or it’s not a good job, what can we do? We have tried our very hardest, we are proud that we’ve achieved something despite our injury and we are happy. When someone says it’s wrong, they may not be having a go at us but that doesn’t matter because all those negative thoughts still come to light, which makes it almost impossible not to have a random outburst.

Finally, I’d just like to say that part of me hoped that we would go into the session and be given exceptional advice for all of our problems and we would leave feeling like we understood me and my brain more. Unfortunately though, cognitive problems are the hardest thing to deal with and even now, despite knowing so much about the human body scientists and doctors still don’t know much about the brain.

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Is there anything I haven’t mentioned that you’re struggling with? You can submit your story or read other survivor stories to understand more