As I write this, it’s approximately 11 weeks since lockdown began in the UK due to the COVID-19 pandemic. Gradually, lockdown here is lifting though the future is uncertain and we are still far from being out of the woods and experiencing life as we knew it pre-coronavirus.
If, like me, you’re living with a mild brain injury or other chronic health condition, then you may have found that some of your symptoms have been exacerbated over the last few months. I’ve found myself struggling more than usual with feelings of anxiety and overwhelm. On reflection, though, I think my experiences of living with a mild brain injury for the past few years have given me some improved coping skills as I’ve tried to navigate the recent challenges. I’ve already experienced, amongst other things, having my world turned upside down in an instant; fear and anxiety, trauma, isolation, slowing down, having to learn to do things differently, financial hardship and living a ‘new normal’ with a chronic health condition. Below I share some of the things I’ve learned and that you can do that may help to improve your quality of life during this difficult time.
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Obviously, it’s important to keep following NHS advice on protecting ourselves from the coronavirus, such as frequent hand washing and keeping at least 2 metres apart from others not from our own household. It’s good to remind ourselves that by following the health guidelines, we significantly protect ourselves and others and decrease the risk of catching the virus. The NHS is doing an amazing job dealing with the virus, and thankfully the numbers of those affected are currently decreasing every day. We need to carry on with daily life as best we can, taking the necessary precautions and trying not to ruminate too much or overly worry as this won’t help either the wider situation or our recovery process. The NHS has a website with advice and resources for looking after your mind and body at nhs.uk/oneyou/every-mind-matters/
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It’s a good idea to limit the time spent reading and watching the news. Human beings have a negativity bias which means we have a natural tendency to focus on the negative. In evolutionary terms, this helped to protect us from imminent danger, such as being chased by a sabre-toothed tiger. This doesn’t really always help us much in our modern-day lives, so just be aware of the fact that our brains tend to do this and limit your exposure to too much bad news.
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Everyone is spending more time online at the moment. The internet and social media can be great for staying in contact with friends or researching recovery information and connecting with those dealing with mild brain injury in online forums and groups. However, you may find that being online too much triggers some of your symptoms. So, it’s a good idea to limit the time spent on devices, taking frequent breaks and setting a timer if necessary. Staring at a screen can be tiring and may trigger dizziness and fatigue. I used to wear glasses with coloured lenses which really helped with this and even now I have to limit my time on screens when I feel I’m getting tired or I choose certain times of the day when I’m more able to focus. Using an app with a red-light filter on your device can also help with screen glare from blue light, especially in the evenings. I try not to use my devices first thing in the morning or last thing at night.
It’s good to develop self-awareness about how you feel if you’re on social media. Ask yourself questions such as, ‘Does this make me feel better or worse about myself?’, ‘Is this uplifting or does it drag me down?’, ‘Is this helpful, and what can I learn from it?’. Also, don’t play the comparison game, especially when it comes to what people are doing, how they are managing and where they are on their recovery journey.
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If you’re struggling emotionally, don’t hesitate to speak up and ask for help. Don’t worry about making a fuss or being a burden to others. We all need to help each other as everyone is finding things hard, and over the last few weeks, it’s been encouraging to see the general growing sense of community spirit and support. So, it could just mean being open with family or friends about how you feel which will give them a better understanding of how things are for you. For example, you may need more rest or more help with certain household tasks or grocery shopping, so do say if that’s the case. I’ve asked my husband and children for more help with keeping the house tidy, cooking and admin tasks. If you’re in a financial position to do so then getting some external help in the house or garden, even for just an hour or two a week or to help with a backlog, can help take the pressure off and keep your environment tidy and your mind clearer.
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If you’re feeling down and need someone to talk to outside your immediate circle about your brain injury and its impact, then there are helplines, such as the national Headway helpline, 0808 800 2244. Most regions also have a local Headway group who may be able to help in a number of ways. If you’re feeling truly overwhelmed and don’t know where else to turn then call the Samaritans on 116 123 and they will always lend a non-judgemental, sympathetic ear even if you’re not feeling suicidal. There’s also Shout, the UK’s text crisis line, which you can text on 85258.
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The isolation, whether during the time after my accident or now, has been the thing I’ve found the hardest to deal with and I’ve tried to find ways around it. We’re social beings, and we’re wired for connection with others. So, staying connected with family and friends via phone, text, and Zoom, etc. is important. Having a mild brain injury may present us with a few challenges when using technology, such as how to work it, reading people and visual cues and getting tired. So, know your limits and recognise when you’re starting to struggle. Take a break if necessary, limit the length of your interactions online and perhaps choose a time of day when you feel most alert. Don’t feel you have to talk to someone if you’re not feeling up to it. There may also be people you feel you should talk to, but for some reason, you don’t want to, and if that’s the case then it’s OK to have boundaries and not contact them or limit your time in contact with them as it may make you feel worse.
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Do reach out to others and help them too, in practical ways or just by listening, whether this is people in your immediate circle or others in your community or online. Everyone is struggling with the current situation, no matter what their circumstances are. Don’t feel helpless and powerless and that you have nothing to offer because of your injury and symptoms. We all have something to give no matter what our circumstances are. Even just sending a reassuring text to a friend makes a difference. Kindness also creates chemical reactions in our brains and certain emotions that can actually help us to stay healthy and heal.
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Use this time to focus on your healing and health. As well as continuing with any therapies or treatments you may be undergoing, it’s really important to focus on the basics – don’t underestimate how effective these can be in helping your recovery. These include staying sufficiently hydrated, eating nutritious food, getting enough sleep, exercising regularly and spending time outdoors in nature and sunlight to get fresh air and Vitamin D.
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It’s a good idea to try to do some form of exercise every day, at a level that doesn’t exacerbate your symptoms too much. You may be in the early stages of your recovery and only able to do a little or just specific exercises from a healthcare professional. Or you may be able to do more so that could mean watering the flowers in the garden or going for a 20- to 30-minute walk or doing some stretches or a gentle exercise routine at home from a DVD or YouTube video. If you can, then going for a run or a cycle is good. In the last couple of months, I’ve done quite a bit of cycling which I’m finding is really helping me to have more energy throughout the day, but I wasn’t able to do this earlier on in my recovery. Start where you are and build up gradually; the main thing is to keep moving every day. Exercise will help increase blood flow in your brain and decrease general stiffness in your body, which will help to make you less symptomatic and able to function better.
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There are many tools which can help manage and calm anxiety. One of them is mindfulness which means being aware of the present and how we’re feeling and being fully engaged with what we’re doing. It helps to create a feeling of safety which will help calm your mind. Briefly, to do this, start by sitting quietly somewhere and focusing on what is around you. This will bring you into the here and now. Look at your environment, notice what you see and hear and take everything in, for example, an item of furniture, pictures on the walls or if you’re outside then the view, a tree or bird song. You can practise this throughout the day too by paying close attention to what you’re doing and noticing what’s around you. So, if you’re chopping vegetables then notice the colours, if eating a piece of fruit savour every mouthful, take in the smell of flowers or the breeze rustling the leaves on the trees. As you spend more time living in the present, you will find that you worry less about the past and the future.
Learn to become aware of how you are feeling at any given time. Ask yourself questions such as, ‘Why do I think I’m feeling like this?’, ‘What could be causing this?’, ‘What just happened that might have contributed?’ The more aware you become of how you’re feeling, the better you’ll be able to notice when you’re getting into ‘the danger zone’ and the more quickly you’ll be able to practise a technique to calm yourself down. It’s OK and normal to feel anxious at times like this, and everyone is feeling it to a greater or lesser extent at some point or another. The anxious feelings will pass. And it’s OK to lie down and rest if you need to as that can be a good way to reset yourself.
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Focusing on breathing is another simple but surprisingly effective tool for calming yourself. There are lots of different methods, but the simplest way is just to sit quietly somewhere for at least 2 to 5 minutes and focus on every breath. If your breathing is fast, then try to take longer breaths in and out, or a breath in then a longer one out. During the day, whenever I catch myself feeling worried, no matter what I’m doing, I focus on my breathing and this helps to calm me down.
Another helpful method is to breathe around an imaginary rectangle, something my counsellor at Headway taught me. Imagine a rectangle in front of you, any size. Take a breath in as you visualise one of the shorter lines of the shape. Then breathe out as you imagine one of the longer lines. Breathe in again as you picture the next shorter line and then breathe out again as you picture the next long line.
Other ways you can calm yourself down are just gently to put your hand on your chest or your stomach, or you could hug yourself. Doing these simple things, and perhaps saying to yourself internally or out loud, ‘I’m OK, I’m safe’ will tell your brain that things are fine and will help to calm you down.
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It’s very easy to get on a downward spiral of negative thinking. We think thousands of thoughts a day, so focusing on the positive will help. It’s not to say don’t be realistic about the difficulties you may be facing, but it will help to lift your outlook on life. I’ve found it helpful, amid the many disappointments and challenges relating to the changes this time has brought, to remind myself of how life for me is now easier – for example, I don’t really miss driving around so much, I find that the slower pace of life suits me. I like having my husband around as he’s now working from home. Try to focus on the good things that are happening during this time, for example, a decrease in pollution and more wildlife sightings, happy stories such as Sir Captain Tom’s heroic fundraising efforts or similar local efforts and the amazingly creative things that people are doing – group Zoom songs, home baking creations and the rainbow pictures everywhere. I’ve found it uplifting to watch various YouTube talks from inspirational people who have survived living in difficult conditions such as astronaut Tim Peake and survival expert Bear Grylls.
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You may or may not find it helpful to write a journal about the experiences and emotions you’re going through, which can help you to process those things. Either way, it’s a good idea to make a note of the good things that happen to you. Being thankful for the good things in life can help our mindset to become more positive. Some people write down three things they are grateful for at the beginning or end of the day, and others make a mental note throughout the day of things they’re thankful for. If you have a spiritual life then now might be a good time to spend time on that, perhaps dipping into books or reading some motivational quotes that inspire and lift you.
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Establish routines as far as you can in the morning, evening and throughout the day but don’t worry if you don’t stick to them. I don’t have a strict routine, but I do find it helpful to have a framework for my day. I have a morning routine where I get up, drink a big glass of water, read something inspirational, do a bit of journaling or writing for my blog before breakfast. I plan out a few activities for my children during the day and I try to keep the atmosphere and life at home really simple and as relaxed as possible. We tend to do a few lessons in the morning and have a more relaxed afternoon. A few weeks ago, we started having a family movie night on Fridays and every day as a family we try to do some form of exercise together, whether that’s going for a walk or a bike ride. It helps to intentionally set a time to do these things; otherwise, we sometimes don’t get round to doing them.
I also find it helpful to break down and ‘chunk’ tasks and to do certain tasks such as the laundry, shopping and admin, at particular times of the day or on specific days, chopping and changing activities so I don’t get tired. I try to alternate boring jobs with more fun things. I’m trying to keep the house reasonably tidy and I’m catching up, slowly and bit by bit, with chores and tasks around the house that I’ve fallen behind with. I take plenty of rests when I need to, and I don’t worry if I don’t achieve everything I set out to do in the day or if it pans out differently from how I expected. At night I generally go to bed quite early, so I try to wind down with low lighting in my bedroom and I usually do a bit of reading.
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Last but not least, now is a time to be kind to yourself. Show yourself some love by spending time on doing things you enjoy as that will help your healing. I love taking photographs and that was something I couldn’t do much of earlier on in my recovery. With the extra time at home, I’ve been enjoying taking photos of my family and nature and seeing that my skills are improving is a real confidence boost. I also enjoy colouring in with my daughters. When we do creative things or new things, we challenge our brains and help to make new connections which will help us to get better. So, start small and build up and do more of whatever it is you love doing. You might enjoy art or music but not have felt up to doing much or perhaps there’s something you’ve always wanted to do and now may be the time to start.
Other ways to look after yourself are to wind down with a relaxing bath at the end of the day, maybe with some essential oils or Epsom salts. Or take some time out to listen to an audiobook, podcast or your favourite music. I’ve also enjoyed looking over old photographs and recalling happy times. And don’t forget to laugh. With all that is going on in the world right now and with the hardship all around us, it’s easy to lose our sense of humour. It’s said that laughter is the best medicine, and even when things are tough, it can be a real tonic to laugh sometimes and see the funny side of life.
I hope there will be ideas and suggestions above that resonate with you and that you can put into practice to help navigate your way through these uncertain times no matter what situation you are in. There is always a way forwards, no matter what we are facing.
Anna Leggett
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