Belinda’s story: Isolation after brain injury

After Belinda Medlock sustained a brain injury in 2015, she found that the majority of her time was spent indoors, trying to get to grips with the effects of her injury and isolating herself from the world outside.

Chronic fatigue and sensory overload meant that she had to limit the time she spent socialising in busy and noisy environments.

Despite the challenges this has presented along the way, Belinda feels as though her brain injury and its effects have prepared her as we enter into a period of self-isolation to help limit the spread of the coronavirus.

In this special article, Belinda sheds some light on her experiences of isolation after a brain injury, as well as her top tips for coping, as the rest of the world tries to come to terms with what it means to self-isolate and the new challenges that may present.

She said:

As most of the world is getting used to isolation and social distancing, it doesn’t feel daunting to me. I’ve had to do it a lot over the last five years, limiting social activities and avoiding noisy, busy places to try to manage the effects of my injury.

In 2015, Belinda experienced a stroke. She was left with slurred speech, weakness in her arm, chronic fatigue and sensory overload.

She said: “I didn’t understand the impact of the invisible cognitive effects and it took me a long time to come to terms with this and manage it. It felt bizarre to me that a conversation or a short walk could leave me unable to function.”

Belinda was able to get support through the Headway Helpline and her local Headway group in Wakefield, and also applied for a Brain Injury Identity Card.

She said: “I remember phoning the Headway Helpline and asking about the feelings of my body shutting down and the pressure I get in my head with fatigue. I just felt someone understood what I was talking about, I felt like she had heard of this before and I knew that I wasn’t the only one.

“I also carry a Headway Brain Injury Identity Card which explains some of the main difficulties I have. It’s given me a feeling of security in case I need to make people aware when I’m unable to communicate well.”

Despite the progress she’s made when it comes to coping with the effects of her injury, chronic fatigue still has a huge effect on Belinda’s life and can completely incapacitate her, leaving her stuck in the house for days as she tries to recharge and reenergise her brain.

“Life is very different now,” she said. “I have to try to manage neuro fatigue and sensory overload every day. To do that I have to limit the things around me such as noise and activity.

It took a long time to come to terms with the isolation I was experiencing. I learnt the hard way. As frustrating as it is, I know I can’t change it, so I’ve learned to accept that life is different now.

But her experiences of self-isolating have helped her to prepare for the consequences of the coronavirus pandemic.

She said: “I know it can feel scary, frustrating and lonely to self-isolate and shut yourself off from the rest of the world. I found that focusing on the positives really helped. For me, it changed my perspective on things and made me revaluate how I think about certain things.

“I’ve kind of become an expert on self-isolation over the past five years, so I can tell you it does get easier.”

Belinda’s top tips for coping with self-isolation

When you can’t change something.... go with the flow.

Do the little things you might not normally have time for.

Keep in touch with people on social media or over the phone - whichever way works for you. Honestly, just a “hey, how are you today?” from someone makes a massive difference.

Make a list of goals and things to do when this is all over... it helps to look forward to something. Small goals, big goals, it doesn’t matter, just whatever will make you happy.

I keep my spirits high by remembering song lyrics and movie quotes that warm my heart. Music and movies can transport us back to a moment in time instantly. Find those moments that have brought you happiness over the years.

Watch the clouds.... It’s calming and so relaxing, sort of like meditation I think. It takes me to another place and it clears my head.

Colouring has the same kind of effect. It doesn’t take too much concentration, so I can lose myself in it.

Keep smiling, find things to laugh about. Even in the times we’re in, it’s so important to keep smiling. Tell silly jokes, watch your favourite comedy programme or film, have daft conversations....by text if needed.

It’s about finding what works for you. It’s about adapting and making the most of whatever situation we’re in, looking for the positives every day and knowing that we will get through this.