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

on Thursday, 16 April 2020. Posted in Blog

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

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.

 Have you missed the start of this fascinating, insightful and honest series? if so head here: Covid 19 Brain injury and me - part one

 

Part 5 – the catch with the crash

The world has fallen so silent, I can hear the birds sing. But it was the sound of a horse trotting up the hill that woke me from my ‘deathly slumber’ this morning.

The last few days have been filled with signs that I need to slow down.

There’s the needling pain from fibromyalgia, the sudden rise of vomit in my throat, and the deep sleep from which these symptoms wake me.

I know they are partially caused by my inability, due to Covid-19 changes, to stick to the diet needed to help with my particular health conditions - my usual mix of organic fruit, meat and vegetables.

But, like many people, I’ve been extremely busy preparing for staying at home.

 

   It was inevitable that the energy crash would come. Yet, ironically, if I hadn’t needed to expend so much energy preparing, I wouldn’t have been so washed out.   

 

I’ve had my food delivered for the past three years as I don’t have a driveway and carrying shopping into the house can quickly wear me out.

But suddenly, it was impossible to secure a delivery slot and I was having to go out and search for necessities on rapidly emptying shop shelves.

I’d batch cooked some home-made, ready meals, meaning I could quickly organise something nourishing while using little energy.

Managing the Covid-19 changes is a catch-22 for us all, but it is especially so when your general and cognitive health is poor.

The more worn out we all become, the more challenging it is to make sound decisions and to prioritise.

But we are all in the same boat now.

 

   I don’t think any of us would previously have considered that it would take a pandemic to help people understand what it is like to live with hidden disabilities.   

 

We have this chance now to think about what it’s like to be part of the invisible community of people who permanently live with exhaustion, in isolation, struggling to keep up with the rapidly moving outside world.

We can consider what it is like to live for months and years with the confusion, fear, worry, and problems that arise from this state of existence.

For me, the last two weeks are a blur.

I am no longer sure of the order in which things have happened and have significant blank spaces where my recent history should be.

I know it will take me a while to catch up with the diet, exercise and rest routine that usually helps me maintain reasonable health, a ‘clear-feeling’ brain and energy levels.

 

   Neurological fatigue is extraordinarily debilitating; it’s certainly unlike any tiredness I ever experienced before my brain injury.   

 

Fatigue is one of the most common and enduring problems people have after a brain injury and, because of it, many of us need to be mindful of limiting what we do.

Neurological fatigue doesn’t resolve after a good night’s rest and can become worse the more that there is going on.

Preventing mental overload, therefore, must become as much a part of daily life as preparing and eating a meal.

 

   Even before this Covid-19 explosion of change, a ten-minute chat with a friend could leave many people living with brain injury feeling drained.   

 

I used to find myself so confused that I would automatically withdraw to reduce the neurological effort it was taking to try to process and understand my own bewilderment.

Overload such as this can add to the reasons why many people living with a disability, ill-health or age-related frailty lose contact with members of their social circle, resulting in the isolation and loneliness we are all now experiencing.

Paradoxically, those of us with brain injury need opportunities to interact to practise and develop our communication skills.

I have worked so hard for so long to improve my health that I know I need to refocus on my routine now.

Like millions of others with brain injury, I have developed coping mechanisms for living in isolation and have all this experience to fall back on.

 

   In some ways now, those of us well practised in isolation may well find ourselves at an advantage over those who normally live lives we can only dream of or preserve in vague and distant memories.   

 

Read Part six of this fascinating series here: Covid-19 Brain injury and me - Part 6

Related articles

Hidden disability, hidden ability

Vitamin D deficiency and chronic fatigue

Fatigue and brain injury

 

Read earlier instalments in Anne’s Covid-19 notes from a small English island here:

Diary of an ABI survivor - Part 1

Diary of an ABI survivor - Part 2

Diary of an ABI survivor - Part 3

Diary of an ABI survivor - Part 4

Read another series from Anne here:

Reclaiming life after brain injury

How neurological occupational therapy transformed me four years after brain injury

Nutrition and diet following brain injury

Anne Ricketts is the founder of Global Brain Injury Awareness (GBIA); a not-for-profit community interest company she launched after sustaining a traumatic brain injury in July 2000.  GBIA aims to inform and support people in need after brain injury. More here: https://www.globalbia.org/

Opinions and endorsements published by others on Krysalis Consultancy Ltd blogs or publications do not necessarily reflect the views of Krysallis Consultancy Ltd.

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