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Brain Injuries

Reflections on my recovery from post-concussion syndrome, seven years post injury

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These are my reflections on my concussion recovery so far, approximately 7 years on from the car crash I was injured in when I was driving home one November evening in 2016. I'm very grateful for the improvements that I've made, especially as I never thought I'd recover as much as I have done. A neurologist I saw two years post-injury told me that I’d pretty much plateaued in my recovery and wouldn't make much more significant progress. For some things he was correct, and it's true that I'm currently not 100% better, but in other areas, I've made significant improvements since then and I continue to do so. Every day, I hope, pray and work to make further gains.

Although I appreciate the progress I've made, at the same time I also get frustrated because I'm not quite where I want to be yet. To counteract those feelings of frustration, I make a daily effort to practice gratitude, inwardly expressing thanks for all the good things in my life. Being positive helps me to challenge myself to achieve my next goal rather than feeling helpless. If I do find myself in a negative spiral, then being thankful makes it easier to get out of it.

Having said that, I don't believe in maintaining false positivity. That's counterproductive because if I'm dealing with difficult emotions and I'm genuinely feeling angry or sad about my situation, then I've found that not expressing them makes things worse. When I feel those emotions, I try to remember to be honest with myself and acknowledge that I'm finding things tough. I then try to carve out some time, usually in the morning when it's quiet or at the weekend, to sit with some of those feelings, explore them and maybe journal about them. Bringing those feelings to the surface and expressing them in some way really does help me to feel lighter.

One thing I've been particularly surprised at about my recovery is how much physical pain I'm still in down the right-hand side of my body, from the top of my head to the base of my spine. The pain varies in intensity but I'm aware of it every single day. The chronic pain specialist who assessed my injuries told me there would be a possibility of this as a brain injury can change the way a person's brain modulates pain, and, certainly in my case, that has been the reality. The pain persists although I'm thankful that it's generally way less than it was and I no longer have to take strong painkillers or walk with a stick like I did in the early days.

I do tend to have pain flare-ups the more I have on my plate and the more stresses I experience in specific circumstances in my life. So, something that previously wouldn't have particularly stressed me out now does a lot more. For example, my son's taking his GCSEs this year and it's causing a bit of tension at home as we get closer to the exam dates. Before my injury, I'd have been able to handle that a lot better but now I find it stresses me out more. This then creates a cycle of physical pain because physical pain and emotional issues can be connected. Fortunately, I've found some natural ways of managing and mitigating the pain which include meditation and mindfulness to calm myself, eating a balanced and healthy diet, taking certain natural supplements, exercising regularly and getting enough rest and sleep.

Fatigue is also still an issue for me although it’s much improved from the early days of recovery. Still, if I don't get enough sleep, have some late nights or if I've pushed myself hard in the day then I'm going to pay for it the next day or over the next few days. I find that because I get tired, sometimes I just need to rest and sleep, and I almost always feel much better after doing so. I try to make sure I'm in bed by 10.30 pm at the latest.

Fatigue still impacts my speech and, when I'm tired, I tend to speak slower than normal or forget my words. Other times I go into overdrive and can garble my words or speak very fast. I can’t always find the word I’m looking for but to counteract that I’ve got quite good at finding alternative words without making my struggle to do so too obvious. I sometimes lose the thread of a conversation, especially it involves several people. These are all things that I've felt embarrassed about in the past and I still feel self-conscious about, but I work hard on improving them and I've seen results. I’m still getting used to some aspects of my post-concussion self with all my quirks and I'm still building up my confidence which took a big knock.

One of the good things that has come out of my experience of recovering from a concussion is that I've become a lot more aware of looking after myself and trying to lead a better lifestyle for a healthier body and mind. I find that doing exercise energises me and lifts my mood, even just doing 10 or 15 minutes of very simple exercise at home or swimming a few lengths at the local pool. I generally make better food choices than I used to.

Something else I find uplifting is spending time outside, whether that's pottering about in my garden or going for a walk in the countryside as I love all the different sights and sounds. I also enjoy spending time with animals, whether that's looking after our pet tortoise, watching my daughter in her horse-riding lessons or spending time with a friend who has a dog or a cat. I find animals very therapeutic and I've discovered that being around them helps me to feel calmer if I’m anxious.

I'm constantly looking for ways to improve and recover further. I'm always on the lookout for information about mental and physical wellness. I read books, listen to podcasts and watch YouTube videos about motivation, overcoming hardship and self-development. I've found positive psychology helpful as it has taught me how to look at life from a positive perspective. If I find myself in a negative frame of mind then I can usually reframe things: I don't have to succumb to the worst-case scenario; I don't have to despair; I can turn things around and feel hopeful. I try to look for the good in the situation which helps me to feel better about my ongoing challenges.

One of those challenges is that I've found it harder than I thought to do paid work again. Before my injury, I'd worked as a freelance book editor amongst other things. I'd had some time off to look after my children when they were younger, but I'd been planning to pick that up again or sell books online around the time of the collision. After the collision and once the initial acute phase of the injury (when there was no way I could work) had passed, I was keen to work again to contribute financially to my family and do something outside of motherhood that I found fulfilling and that would give me purpose and motivation. I knew that for me that would be an important part of my healing. I wanted to challenge myself intellectually and prove to myself that I could do the things I used to do. I reflected on all my previous training and skills, including editing, blogging, counselling, marketing and sales, and I wondered what I could do.

Then, in 2020, CFG asked me if I'd like to write some blog posts for their website on different aspects of recovering from post-concussion syndrome and I jumped at the chance. Here was an opportunity to do something that I loved (writing), had previous experience of doing (blogging) and that would help others.

 

After a few months of writing blog posts, which helped me to improve my writing and editing skills, I decided I wanted to share more about my recovery experience on social media. I started posting content, creating some short YouTube videos and doing interviews both with others who'd had a brain injury and various health experts. I enjoyed doing this and it gave me a big confidence boost.

I went on to complete some life coaching training and I shifted my focus to sharing tips with mums (like me) working from home, about managing stress and leading a more balanced lifestyle. Very slowly I'm starting to build my coaching business which is something a few years ago I wouldn't have thought possible.

It hasn't been easy to do this with residual post-concussion symptoms. I'm surprised at how much my intellectual abilities have been affected since the injury. Some of my executive functioning abilities have been affected so my thinking is slower, my ability to remember and recall things as well as my ability to process and assimilate information have all been affected. Many tasks, including reading and writing, are slower and harder to do and I get distracted and tired more quickly. I've had to dig deep into my inner resources to not let this get me down.

I also use several tools to help me to do my work, such as Otter for speech-to-text, Evernote for note-taking, Google docs and spreadsheets for organising my thoughts, Trello for organising my life and more recently I've been exploring how AI can help me to plan, research, and structure certain aspects of my work.

As I've learned new skills, practiced them and repeated certain tasks over and over again, I've wired new neural pathways into my brain which has helped me to speed up and make improvements. I've pushed myself hard and have made progress but some things still take me longer to do than they would've done before my injury. It may not be obvious to others, as I'm quite good at hiding things and I've learned ways to compensate for some of my shortcomings, but I'm aware of the ongoing challenges.

I wrongly thought that as my children got older, life would get easier. The reality is that being a mum to teenagers is just as demanding as having toddlers only in other ways. It does help, though, that they've become quite independent and can do a lot more for themselves and help around the house too. As with everything else, I do find tasks such as cooking, ironing, washing and cleaning take me longer and I easily get distracted or tired after a while, so I appreciate their assistance. Sometimes, I have to rest or put off doing a particular chore until another time when I'm feeling more energetic or less in pain. I know that for everyone, life's a juggling act but it's a bit more challenging with a brain injury. If I have a good day then I congratulate myself for that and if it's not such a good one then I tell myself that I did the best I could and tomorrow's a new day and I'll try again.

The reality is, I have to keep going, not just for myself but I also have a husband and three children who need me. My children were 3, 6 and 8 at the time of my accident and they are now 10, 14, and 15 and have so much going on in their lives. So I need to stay as positive for them as possible to be the mum I want to be and to help them do all the things they want to do. I need to be there to support them and I want to make the most of my time with them. They have exciting futures ahead of them.

I have so much to live for. I have so much to get up in the morning for. I want to enjoy life to the fullest. I want to make the most of my lovely home and garden and my time with my husband, family and friends. That's what keeps me going through the pain and difficult days. I'm grateful for my recovery so far and the improvements I continue to make and I'm determined to make the most of every day.

If you’re reading this and you’ve got post-concussion syndrome, then I hope you know that you’re not alone. There are others, like you and me, out there, and we’re all trying to do the best we can. It’s not easy but our efforts do bear results and it’s important to stay determined and to keep going; the rewards are worth it. Be kind to yourself, be self-compassionate when you mess up and remember to congratulate yourself on your wins.

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