Covid-19, brain injury and me: diary of an ABI survivor - Part 7

Covid-19 notes from a small English island

How do you cope through Covid-19 when you’re  alone on a small English island, living life with a brain  injury?  

It is uncertain times for brain injury survivor, Anne Ricketts  as  each  new  day  dawns  in the coronavirus pandemic. 

But the  Krysalis  team  are  in close contact with her – and her loveable Labrador, Summer – as she reports on her progress from her island home via her new ‘live’ blog series, here.

The first part of this insightful series is available here.

Part 7 – Thriving

No one escapes from brain injury lightly. The symptoms can be debilitating for many years and invariably increase and decrease depending on what else life is throwing at us.

My executive function is up and down like a yo-yo at the moment, and I know it is because the pandemic is causing me to think outside my standard box.

Two days ago, I was buzzing through my incoming messages, call and emails, and relishing in the fact that I was thriving well enough to be on the ball.

   I am forever happy to spend whatever time I need with my fellow survivors and their families because I have always wholly believed that our experiences happen so they can be shared.   

There was a rapid increase in the messages in my various inboxes during the last few weeks, but a massive decrease in the number of shares and comments on my posts.

People are frightened; they are withdrawing and less willing to share their views publicly. I applaud this as it guards their privacy and vulnerability.

A lot of people at present are asking me how to help a loved one understand the changes needed to stay safe - and many brain injury survivors are asking for help with the same.

   Thanks to the incredible Public Resources information produced by the team at Krysalis, I have been able to help people very quickly and easily.   

Everyone has been incredibly appreciative of this clear guidance and thrilled at how well it helped. I have no idea how I would have managed without it.

Not all messages are this simple, however.

The right to thrive

I thought about the fact that I had relished being able to thrive – and my 'mood escalator' dropped ten floors.

I was helping so many people struggling desperately to adapt to changes in so many different ways, but to say that made me ‘happy’ felt wrong.

In that instance, thriving felt wrong too.

   Unusually for me, enlightenment came quickly: we need the strong among us. In a roundabout way, I had shown myself how well I was managing my own fears and isolation.   

Last week, I read a comment somewhere that we find our passion not through looking for purpose but by sharing, reaching out and helping others.

I know this was instrumental in how quickly I was able to respond to myself.

Over the last ten years, I have come to know a cluster of amazing people who have expertise through their experiences in various common issues that arise for people.

Some are parents, some are doctors who have suffered a brain injury, and others are neurological experts I know I can call on for back-up when it is needed.

   We are teams of people working hard together to do our best to make sure no one reaching out falls through the net.   

Sometimes, I refer people to their nearest brain injury support group, especially when specific information about local facilities is needed.

More often, I also introduce them to an online group where I know very many people will jump in to help, encourage and go the extra mile to let others know they are not alone.

Ten years ago, there were very few online sites helping people without medical support and diagnosing medical teams would rarely refer them to brain injury organisations.

And yet, even today, I had a call from someone saying they had received no help or advice since a fall resulting in a small brain bleed.

When I asked if they knew about Headway – the brain injury association, I was told no one had mentioned them.

   We all have a role to play and when we collaborate, we create more significant waves of change.   

When one of us feels as though we are thriving and managing perspective, we not only help and influence others but inspire them.

Thrive, don’t drive!

Although I am still busily helping others, I found myself today rounding up my personal reserves trying to overcome my own fears and worries.

There has barely been a car in our village since the lockdown, and yet, just before the Easter weekend, it was traffic as usual.

Do we have a new influx of second-home owners and holidaymakers? Whatever is going on 'out there'?

   I am now frightened to take Summer for a walk and haven't been able to get a home delivery slot from any local supermarkets all week.   

I am out of milk and fresh fruit, veg, meat and salad, but I certainly won't be going out!

I know my friend Jim, who is 79 and dying of cancer, had a grocery top-up on Tuesday. I’m grateful I don't need to worry about him, knowing he is safe and has everything he needs.

Thankfully, I managed to get in some reserves of canned and frozen goods just before the Covid-19 ‘stay-at-home' order - but in no way did I think I would have to start using them this early on!

Proper nutrition is key to my ability to manage my health and stay functional.

Self-isolating because of underlying health conditions is no fun for anyone and I know only too well how tough it is for vulnerable people across the world right now.

Please watch out for vulnerable people by staying at home and staying safe!