In June 2019 I had a subarachnoid haemorrhage, due to a burst brain aneurysm. Optimism and determination were essential to my recovery.
A little bit about Eva
My name is Eva and I am a Clinical Research Sister at The Great Western Hospital in Swindon. In June 2019 I had a subarachnoid haemorrhage, due to a burst brain aneurysm. I spent about a month in Oxford Radcliffe ICU. I miraculously recovered well enough to go home, not without sequela. I developed hydrocephalus for which I had to have a VPN shunt.
How my life changed
Following my discharge, my main issues were headaches and my balance. Having a “valve” in my head also took a little getting used to as it was limiting all the things I’d normally do. I also experienced extreme fatigue; it has got better with time but it is probably the main sequela that I struggle with.
My recovery journey so far
Initially, I had a couple of visits from the Occupational Therapist to assess me, but they were happily surprised with my recovery. I also attended an appointment with Headway, but they also deemed that I recovered very well, and they would not be of much use to me. So, after a month from discharge, I was left to my own recovery with my family and friends’ support as my only support.
As part of my recovery, my Neurologist told me to do crossword puzzles, read and take on crochet or something like that. I did some crosswords, but I was getting a bit frustrated as I was quite bad at it, I think I was always bad at it, so I tried crochet and now I have pretty much filled up my whole house with crochet items. I love it, it relaxes me and even helps with my headaches as I can focus on one thing and block out everything around me. I have also been slowly going back to swimming. Being in the pool really relaxes me and the floating feeling also helps with my headaches, it makes my head feels lighter. As with most things, I try not to push myself too much, so I don’t overdo it. I also enjoy walking and listening to music. I still struggle with reading; I can do it but it makes me really sleepy so I can't read too much before I fall asleep.
What’s allowed me to move forward
My neurologist said that my optimism and determination were essential to my recovery. My biggest worry was that I would forget how to be a nurse. I was due to go back to work when the pandemic hit the UK. In a time of healthcare uncertainty and stress, I felt I could do more and was enjoying every minute of being back at work, the chance of being able to help and not worrying about myself helped my recovery even more. Returning to work is my biggest achievement. Although fully I am not where I was, workwise I am and it even allowed me to develop my skills further.
Areas that are still challenging
It is hard at times, when fatigue hits and physically I can't move or when headaches are so bad that I struggle to concentrate, but my mind tells me to keep going. It is hard to have a constant feeling of looking after myself either to avoid a knock on my head or my stomach as such things could affect my shunt. Not being able to help others in the same capacity as before can still be frustrating. I enjoy looking after people but I am not great at looking after myself. There is so much that I have to think about now and sometimes it feels overwhelming. I feel bad about saying no when someone asks for help, and 3 years down the line, not everyone knows what happened to me, and my brain injury is not obvious. On the outside, I look normal, and it is really hard to justify when I can’t do something, which puts a lot of pressure on myself and my recovery.
What can be done better
Last year, my shunt got disconnected and I required another brain surgery to get it back together. That really knocked back my recovery emotionally and physically. After another A&E admission due to headaches, an alternative headache pain relief was proposed to me. I was very grateful for the option but frustrated by the fact that it took 2 years to acknowledge and recognise that I needed extra care.
My advice to other survivors
My advice to other Brain injury survivors and caregivers is that not everyone is the same and not every recovery is the same. Don’t rush your recovery, it takes time for your body to heal after brain injury but remember that your mind also needs to heal.
Your mental health is as important as your physical health and you must nurture both.
Don’t expect to go back to what you were before it happens. You need to teach yourself that it might be different from what it was but it is not wrong. Make the most of taking on new hobbies and learning new things. Just keep fighting and be thankful that you are still here. Make the most of the second chance that you were given.
Spend time with your loved ones, they will just be grateful because you are still with them even if you can't run a marathon, or work 60 hours, or do everything you did before.
I'm learning that this is me and I'm not the "SameYou" but a different one and I need to learn that. I always tell my patients about what happened to me and give them the strength to keep fighting. They see me happy and full of energy and they also believe in themselves. They know that there are good and bad days, but we just need to keep fighting and moving forward. We’ve got given another chance so let's make the most of it.
Determination and Optimism are the best medicine for brain injury recovery. Just be you as you are.