Riding the Wave | Lockdown Perspective

Disability Lifestyle & Lockdown

I was born with a rare, progressive form of muscular dystrophy. Besides being a non-ambulatory wheelchair-user, my condition comes with many other complications.

For me, being stuck at home for prolonged periods of time, due to chronic illness, is the norm. Hospital admissions, operations, cancelling plans and missing out on events and opportunities is a way of life.

Over the years, many birthdays, holidays and celebratory occasions have been lost to my condition. Whole months have been wiped out to repeated bouts of pneumonia, pleurisy and pneumothorax.

~ This is the case for thousands of disabled and chronically ill people throughout the UK! ~

I know what it is to struggle, to feel trapped, isolated and helpless. Such an existence really puts life into perspective and opens your eyes to what is truly important.

Attitudes to Lockdown Restrictions

Since lockdown began, I’ve seen and heard many petty complaints from ignorant individuals, which I find incredibly frustrating.

People whining about being unable to go out partying or bar hopping to get pissed.

To those self-absorbed cretins ~ GET OVER YOURSELVES!

Despite warnings, many continue to flout the rules, refuse to wear face masks and generally take life for granted, with little regard for the wellbeing of others. Some naively appear to think they’re invincible.

Trust me, it’s a hell of a lot easier to breathe through a protective face covering than a ventilator!

So please, have a little care and consideration. Protect yourself and others.

Abide!

My Perspective

During lockdown, I can honestly say I did not miss going to pubs, restaurants, cinemas, shops or salons. To me, these are life’s luxuries.

Yes, we all need that escapism and we all enjoy going out and socialising, myself included.

But, when the time comes to look back on my life, I’m pretty certain I won’t be thinking, “damn, I wish I’d done more pubbing and clubbing”.

The one thing I REALLY missed during lockdown was quality time and physical contact with my family and closest friends. Being able to sit with them, touch them, hug them and talk face-to-face.

~ It really isn’t what you do, it’s who you do it with. ~

Making Memories | Happy Days

Parks, Play, Pee and a Powered Chair

One of my most cherished days of the last six months was spent with my brother and little nephew.

The bro and I walked/wheeled to the local nursery to collect the kid, who had apparently been chilling with real lions and tigers – “ROAR”

I’m not convinced.

We all walked home via the park, where we fussed some friendly doggies, played hide and seek, oh, and the kid peed up a tree!

As the boys ran ahead, my powered wheelchair stopped abruptly in the middle of the park, and wouldn’t budge. Crap!

With no obvious reason for the breakdown, bro did the sensible thing and gave my chair a damn good shake and a whack!

While all this was going on, little man, totally unfazed, called out, “Cazzy, I got a stick!”

I appreciate this isn’t everyone’s idea of a good time. But for me, laughing, talking and having fun in the sun with those I love is what I value most in life. The simple pleasures.

By the way, I’m no longer stranded in the middle of the park. We managed to kick-start my rebellious chair and make it home, where many more giggles and games took place.

Thank frig I was with my boys!

Coronavirus UK | Still Shielding

 

This week, the UK government issued new measures to suppress the spread of Covid-19. From Monday 14th September, social gatherings will be limited to 6 people.

In all honesty, I can’t say I’m surprised at these restrictions. From my perspective, as a physically disabled shielder, it seemed inevitable.

Our government has actively encouraged people to return to work, to school, the High Street, the salon, the gym, to pubs and restaurants.

Of course, we all want a return to some sort of normality. And while it is essential we sustain our economy through supporting businesses and minimising unemployment, it would appear BoJo favours wealth over health.

Those at greater risk have been largely neglected; the elderly, disabled and those with underlying health issues.

Many, like myself, have been shielding since March. We have been isolated in our homes, watching the world go by from behind closed windows.

[Image Description: An elderly man in a care home looks out at a female relative from behind a closed window. A carer, wearing a face mask, sits beside the man]
[Image Description: An elderly man in a care home looks out at a female relative from behind a closed window. A carer, wearing a face mask, sits beside the man]
 

Some have endured months without medical support. Personal carers, though essential, pose a risk to the most vulnerable. And others are forced to leave work, since there is little to no support for disabled employees.

I am very fortunate to have been able to continue accessing my routine hospital appointments throughout lockdown.

Despite initial anxiety and fears from friends, I felt safe and protected during every one of my 6 hospital visits and 2 GP appointments since March – all thanks to our invaluable NHS.

[Image Description: Me, sitting in a hospital waiting room, wearing a face mask]
[Image Description: Me, sitting in a hospital waiting room, wearing a face mask]
 

However, after waiting almost a year for a much-needed respiratory referral, I fear my upcoming appointment may now be cancelled, due to the latest guidelines.

My discussions with various medical professionals over the past few months reveal concerns for a second lockdown around October.

With Flu season approaching, this warning poses an even greater strain and impact on the elderly, disabled and NHS.

Wench Wars | Lockdown Playlist

1, 2, 3, 4, I declare a WENCH WAR!!

My good friend and fellow wheelie wench, Lucy Hudson, and I are battling it out once again!

Here is the long-awaited sequel to our first Wench War, in which we presented our top 5 Disney villains.

Top 5 Lockdown Songs

This was a challenge!

There are soooo many songs that in some way represent life in lockdown, it was difficult to limit the list.

1. The Police, Don’t Stand So Close To Me (1980)

When all this Corona craziness hit home, people panicked. Understandably so.

Don’t touch me, don’t cough near me, don’t breathe on me, don’t look at me!! 😱

2. Queen Ft. David Bowie, Under Pressure (1981)

And so lockdown begins. Society starts to feel the pressure. People are unable to go to work, parents are home schooling, families are forced apart and the NHS is put under great strain.

3. Queen, I Want To Break Free (1984)

The days turn to weeks. We get up, we eat, we go to bed. We’ve basically adopted the dog’s lifestyle!

Everyone is bored and frustration is setting in. For those like me who are considered high risk, the four walls of home become more of a prison than a sanctuary.

4. Peter Gabriel, Don’t Give Up (1986)

Weeks turn to months. We’ve lost track of what day it is. We’re lethargic, lonely, lacking in motivation, low in mood and missing our loved ones.

When will this come to an end…?

5. Fleetwood Mac, Don’t Stop (1977)

There is finally some light at the end of the tunnel! It seems we’ve hit the peak and restrictions are slowly being lifted. We are far from the finish line but we’re holding on to hope.

“Don’t stop thinking about tomorrow
Don’t stop, it’ll soon be here
It’ll be, better than before,
Yesterday’s gone, yesterday’s gone”


Lucy’s Top 5 Lockdown Songs

Recommended Reads

Since we’re all still stuck at home, twiddling our thumbs, I thought I’d suggest some reading material for you. The six books I have chosen focus on the themes of disabilitymental health, positive thinking, overcoming adversity, trauma, and recovery.
(Left - Right) 'Defiant' by Janine Shepherd, 'Wheels of Motion' by Justin Brown and Lucy Hudson, and 'True Grit and Grace' by Amberly Lago
(Left – Right) ‘Defiant’ by Janine Shepherd, ‘Wheels of Motion’ by Justin Brown and Lucy Hudson, and ‘True Grit and Grace’ by Amberly Lago

‘Defiant’ by Janine Shepherd

A few years ago, I had the privilege of interviewing this former Olympic hopeful who beat the odds and transformed her life after suffering a horrific accident. Janine Shepherd radiates energy, enthusiasm and an endearing wit. Her memoir is a must-read!

‘Wheels of Motion’ by Justin Brown & Lucy Hudson

Some of you may know that Lucy is a good friend of mine. Like me, she is a non-ambulatory wheelchair-user with a form of muscular dystrophy. ‘Wheels of Motion’ is a poetry anthology unlike any other. If you live with a disability yourself, I highly recommend you check this out! (Available on Amazon).

‘True Grit and Grace’ by Amberly Lago

Amberly Lago is another remarkable, kind and generous woman I was able to interview following the release of her memoir, ‘True Grit and Grace: Turning Tragedy into Triumph’. Fitness fanatic, Amberly’s life was turned upside down following a debilitating motorcycle accident in 2010, leaving her with significant nerve damage and lifelong chronic pain. She now devotes her life to helping others.
(Top Left - Right) 'Things Get Better', and 'Beautiful'. (Bottom) 'Start Your Day with Katie'. All by author, Katie Piper.
(Top Left – Right) ‘Things Get Better’, and ‘Beautiful’. (Bottom) ‘Start Your Day with Katie’. All by author, Katie Piper.
Acid attack victim, Katie Piper, is now a well-known media personality, activist, documentary maker, charity founder and mother. She has achieved so much since her brutal assault in 2008, which left her partially blind and with full thickness burns. Katie has endured over 200 operations and invasive treatment to ensure her recovery. She really is a true inspiration! I read Katie’s first book, ‘Beautiful’, around eight years ago. It’s a real eye opener! Yes, it is shocking and distressing, but also incredibly motivational. I highly recommend this book to anyone and everyone.

Showing Gratitude

In my previous post, I suggested writing a list of all the positive things in your life.

We’re currently experiencing tough times, but there’s still much to be thankful for.

With that in mind, here’s my list of gratitude…

1. Video calls with my brother and nineteen month-old nephew. “My no go nursery, Cazzy!” He’s quite happy going on “doggy walks” with Daddy.

2. People are realising the value of the NHS and care workers.

3. Receiving messages, calls, letters and cards from friends.

4. Blue skies, sunshine and warm weather to lift spirits.

5. Nature and Spring time. Venturing outside and exploring nature is great for improving our mood and mental health.

6. Community spirit – everyone is playing their part by volunteering, working and offering practical and emotional support.

7. My wimpy Labrador is much happier now that we’re not receiving visitors. No people – Yay!!

8. This lockdown period provides time to rest, sleep, think, plan and do the things I have been putting off, like decluttering my bedroom.

9. Environmental pollution is reducing, air quality is improving in cities, and the planet is slowly starting to recover.

10. I am fortunate to have a safe, comfortable home and a caring, loving family.

11. Finally, quarantine means there’s no pressure or expectation to shave or wax my hairy lady bits! Girls, you know what I’m talking about!

What’s on your list…?

Lockdown | Positive Thinking

I’ve read many trivial complaints on social media about the Coronavirus lockdown.

From park, pub and salon closures, postponed gigs and concerts, to cancelled botox, filler and wax appointments. Some are even moaning because they can’t race around and show off in their flashy cars. What a shame!

I appreciate we all have our own interests, outlets, coping mechanisms and methods of self-care. We all want to look and feel our best, and we all need somewhere to escape to.

But please, let’s try and keep things in perspective.

The current situation isn’t permanent. Of course, it’s tedious, stressful and frustrating, and will impact some considerably more than others. But it will pass and “normal” life will resume.

People on the frontline are literally risking their lives to help others – complete strangers. They are physically and mentally exhausted, yet keep going.

Carers continue to support the most vulnerable in society, despite the risk.

Key workers carry on working to ensure society functions and people are provided for.

On the upside, lockdown provides an opportunity for families to unite, spend quality time together and talk more.

But for others – men, women and children – being stuck in close proximity, unable to escape, can be a living hell.

The National Domestic Abuse helpline has seen a 25% increase in calls and online requests for help since lockdown began!

We all have problems and we are all entitled to feel and express what we need to in order to get through these trying times. Your experiences and frustrations are valid.

But please, keep in mind the medics, carers, key workers, the elderly, disabled, those living with domestic abusers and those separated from their loved ones.

Try to appreciate what you do have – for example, your health, home, and hope for the future.

When you’re feeling low, maybe write a list of all the positive things in your life and focus on that rather than the things you are currently missing out on.

Quote from Bob Dylan, "keep on keeping on"
Quote from Bob Dylan, “keep on keeping on”

Decisions & Difficult Discussions

As a powerchair-user with congenital muscular dystrophy, I am at high-risk of developing serious complications should I contract Coronavirus.

So, I’m kinda hoping I don’t!

As much as I love them and couldn’t be without them, my folks have adopted a rather casual attitude towards the whole situation, disregarding it as, “just one of those things”.

I won’t sugar-coat, there have been arguments and tears of frustration. It’s pretty tense and stressful in our house at the moment, as I’m sure it is for many.

My big bro called the ‘rents a few times to enforce the importance of social distancing. It is comforting to have some back-up, especially coming from my great defender!

Sometimes, I do feel like I’m banging my head against a brick wall.

It was only on Saturday night that my Mom announced, “I’ve never known anything like this in my lifetime”.

It really was a light-bulb moment! The seriousness of the current situation seemed to finally hit home.

My brother is a teacher, his wife a business woman, and my two year-old nephew, who I see every week, attends nursery. They are therefore in contact with many different people on a daily basis.

Naturally, this lead to discussions about what we do going forward. He basically told me, “it’s your call!”.

Now, I’m not remotely materialistic and am somewhat an introvert. Missing out on holidays, going to the cinema, to restaurants, pubs and shops doesn’t particularly bother me. It isn’t forever.

All that really matters to me is the people I love – soppy cow! To be without them really is a killer!

It’s a case of weighing up the risks, being safe and sensible but also not denying ourselves life itself.

So, this week, instead of having my gorgeous nephew at home with us, we’re going for a woodland walk. We will be enjoying each other’s company, while keeping a “safe” physical distance.

My nephew on a woodland walk
My nephew on a woodland walk

My nephew on a woodland walk
My nephew on a woodland walk

My black Labrador walking down a country lane
My black Labrador walking down a country lane

It will, no doubt, be a challenge with an affectionate little boy who doesn’t understand what’s going on (and, thank feck he doesn’t!).

But, at the end of the day, it is what it is. We’ve all got to make do and get on with it, in the best way possible.

A motivational quote from Frida Kahlo
A motivational quote from Frida Kahlo

Coronavirus | Thoughts from a Disabled Pixie

Needless to say, we are in the midst of uncertain and unprecedented times.

Photo of a card reading, 'keep hanging on in there' (left) and a medical face mask (right).
Photo of a card reading, ‘keep hanging on in there’ (left) and a medical face mask (right).

Everywhere we look, we are bombarded with the latest news regarding Covid-19; on the TV, radio, newspapers and the Internet.

While most is factual information from reliable sources, there is also plenty of unhelpful rumour and speculation, particularly on social media.

Personally, I don’t find it beneficial to watch the News three times a day, unlike my folks!

We all know by now what we should and shouldn’t be doing to limit the spread and keep ourselves and each other safe.

Guidelines on social distancing during the Coronavirus pandemic.
Guidelines on social distancing during the Coronavirus pandemic.

Why add to the stress and anxiety? I’d rather focus on other things; happier things!

Of course, the situation affects everyone in some way; domestically, financially, their work, education, physical and mental health.

This is an incredibly frightening time for many, myself included. I am considered high-risk, since I have a progressive muscle-wasting condition that affects my breathing.

A Friendly Reminder from a Delicate Little Pixie

Though we all must now adapt and change our way of life somewhat, it’s important to remember this is only temporary. Things will improve.

I’ve heard people complain about the restrictions; mostly young, fit, able-bodied people. Yes, it’s a pain in the fat ass! But it isn’t forever.

Funny meme about the Coronavirus featuring the character Jay from The Inbetweeners.
Funny meme about the Coronavirus featuring the character Jay from The Inbetweeners.


Also, please be aware that many disabled and chronically ill people are repeatedly forced into prolonged periods of self-isolation throughout their lives. Plans are often cancelled last minute due to poor health. This isn’t new to them.

So, before you complain because you can’t go out partying with your mates, or to the pub, please consider those for whom limitation and isolation is a way of life.

Final Thoughts

Show your thanks and appreciation for the NHS and those working in health and social care.

Illustration of NHS healthcare workers being saluted by Superman.
Illustration of NHS healthcare workers being saluted by Superman.

Be mindful of the most vulnerable in society, and help out if you’re able to.

Print-out for those wanting to help anyone self-isolating due to Covid-19.
Print-out for those wanting to help anyone self-isolating due to Covid-19.

Please don’t panic buy or stock pile. This isn’t the apocalypse, people!

Where possible, please support local businesses.

Be sensible, be safe, be rational.

This too shall pass…