Honesty Is The Best Policy

Life Gives You Lemons was designed to give a firsthand account of life after my stroke. So, this blog is about the realities of life after a brain injury. Every survivor has their own story, but there are some similarities.

"Recovery is ongoing" is a phrase you can hear a lot! It is lifelong; it may be slower after a while, but there are still possibilities for improvement. Any outcome is unknown as every case is different, and you may not regain your previous abilities. Trying to come to terms with working hard in rehab without knowing what will happen is far from easy, and even though I'm incredibly determined and worked like hell in rehab, it's something I struggle with as I'm not good when it comes to the unknown. It's understandably hard to get used to, but it can get easier over time.

Invisible injuries are probably one of the hardest after-effects of a brain injury to deal with. A lot of people can be left with more visible ones. In my case, it's my impaired vision, mobility, facial palsy and my left-side weakness. I'm fortunate not to have had any cognitive effects, but I am psychologically different. I hate the word "new". As I've said, you aren't new; it's a different way of life. The difficulties of adjustment are so unique to each person that it's hard to comprehend the struggles you can go through. Emotional and mental health challenges are common for brain injury. Cognitive things like memory, attention span, and decision-making can be affected. These can lead to feelings of frustration and like conferences. You have been through a life-changing event and may find that your personality has changed. I have a different outlook on life! Lack of motivation can be huge due to the evident emotional impact and because certain brain areas can be damaged, influencing mood. Mood swings can happen even without a clear reason. Emotional outbursts can occur and lead to anger or tears. I have had days where all I can do is not explode at the unfairness of everything or scream in pure frustration. Depression and anxiety are two of my struggles. Sometimes, I can't be bothered to try and want to "accept my fate". I can manage this better than I used to. Anxiety can be huge in so many ways. It's been three years, and I still feel panic beginning to rise any time I get a headache. Admittedly, I can control this a lot better than I used to.

A brain injury does change you as a person. You can change relationships. Family and friends can be a massive source of support that can also be affected by changes. I don't remember my time in the ICU, but my family does. Having a good support network is valuable. In rehab, I was focused on being normal, something which I realise now isn't necessarily going to happen. You're the same person but have been through a life-changing event; life is different. Having support while

 you come to terms with what has happened is so important. I have found that other brain injury survivors can provide a valuable part when it comes to support. There are various charities that help with this. You may also be able to find something in your local area or via any therapists you work with. There are no local in-person groups in my area, so social media and the ability to connect with people who have firsthand experience of brain injury or living with a disability has meant. I've recently found a charity with regional monthly meet-up groups for brain injury survivors and weekly Zoom activities.

I was surprised by how much I struggled with simple things. I didn't expect to relearn how to do a zip ( I partially can of three years), and I still struggle with shoelaces. I can do up certain types of buttons. The biggest surprise was when my OT suggested I get some swimming lessons. I had swum since I was little, so I wasn't convinced this was necessary, but I went ahead with the idea anyway. When I got in the water and could barely stand, it was another reality check as to how much a brain injury can change things. Not only can simple things be difficult, and you have to relearn how to do them, but there are also situations where you need to develop adapted ways and make things easier. I have left-side weakness, so I struggle to hold veg when cooking. I have a shopping board with spikes that keep things in place, making them safer. I have recently been buying frozen vegetables, it's easier! With regard to simple tasks being difficult, try to find ways to make them as easy as you can.

It's been three years, and whilst I've noticed the fatigue part of a brain injury, it only struck me recently quite how much it can affect you. I've never been good at resting, and during four months in rehab, I can't begin to count how many times I was told to take it slowly or have a break. It's probably why I'm useless at meditating; my mind won't switch off! As I said, it's been three years and managing it is something I'm still figuring it out myself, but rest is essential. The days when you feel burnt out are no fun!

Take the small wins; they matter and can lead to bigger things. I remember when I could finally wash my hair by myself; it was terrific! I never expected to be able to get my left arm into a coat, and with a little bit of assistance, I now can. There's a quote from Ted Lasso: "The thing about small victories is that they are easier to carry with you. I am calling myself the champion of popping every single kernel of popcorn in the microwave last night." So, if you manage something that seems small, like brushing your hair or making a cup of tea, be proud of yourself. Not to sound like a fortune cookie, but enjoy the small victories; they can lead to achieving bigger goals.

When I first got to rehab, I had ICU amnesia, so I didn't realise how sick I had been and the impact it was going to have on my life. I couldn't understand why people didn't realise I would still be me and my life would be normal within two or three weeks. With brain injury, you adapt your life to suit your differences. I'm still struggling with this, as it's not a "new" me, as I'm still the same person! I get annoyed when I can't do something, and losing most of my independence has been crushing. Accepting brain injuries is probably the most challenging part, but adjusting your life in different ways doesn't mean you can't enjoy yourself. I'm going on holiday in May, which takes off some of my bucket list. There will probably be bits where I have to do things differently, but that ddoesn'tmean II'mnot looking forward.

Life changes dramatically, but try not to get bogged down and still find ways to have fun.