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!

Getting back on the Horse

As a kid, I rode horses until the age of 10, when I lost the ability to walk.

One day, the horse I was riding decided to bolt and suddenly swerved to a halt, throwing me on the floor with an almighty bump.

Slightly shaken and slumped in a muddy puddle, with a bruised arse and a missing boot, I had two choices.

Unable to get up and walk away, I could either sit there and wallow, or clamber back on the horse.

As tempted as I was to avoid the risk and mope in the mud, I opted to get back on the frisky mare.

There’s a lesson there, somewhere…

Life can knock you down, again and again.

Sometimes you find yourself asking, “why me? What have I done to deserve this crap?”

There is often no rhyme or reason and, at times, it may feel like you just can’t catch a break. But, shit happens.

The point is, it’s up to you whether or not you try to pull yourself out of the muddy puddle.

Find the thing, the person, the people that motivates you to overcome and battle on.

I never did find my riding boot, though. Maybe the horse stole it. Bitch!

Dating Disasters

Following my last post, I was encouraged to write more on the subject of dating with a disability. Not that I’m much of a dater. I don’t do the apps (other than a brief stint on Hinge) or actively chat up blokes. If it happens, it happens.

A mate told me to share some dating disaster stories. I’m not sure there have been any disasters, as such. Rather, a few funny anecdotes.

One took place on a freezing cold day in January – not ideal. He wrapped his coat around me, which was quite sweet. He wouldn’t let me keep it (less sweet, methinks) but I did steal his hat!

Another date (if you can call it that) was with a 34 year-old guy from dating app, Hinge. Though stereotypically attractive – clean cut with washboard abs – he really wasn’t my type at all.

Still, I was encouraged to go for it, mainly because he’s older and, in theory, more mature. So, on a whim, after months of chatting on/off, I agreed to meetup.

This lead to possibly the most awkward and stale encounter I’ve ever experienced. I’m not sure if he was going for the brooding, ‘treat them mean, keep them keen’ thing, but it translated as pure arrogance. Plus, he had zero sense of humour and was somewhat full of shit.

He claimed to have dated Ellie Goulding and that one of her songs was written about him. Google disagrees!

The only thing he seemed interested in was his car (which, I may have inadvertently insulted. I amused myself, anyway), and getting a hotel room there and then.

Now, each to their own, but I’ve never been into meaningless one night stands. Plus, let’s be real for a second, I’m a girl. A “vulnerable” girl. So if a guy can’t appreciate why I don’t want to hook-up within 10 minutes of meeting, well, sod off mate!

Having said that, if Chris Pratt rocked up, I might make an exception.

So, in the end I told him I was off home for my tea (yes, I really said that).

I took the long route and nagged a mate on the phone on my way. As I rolled along the riverside in my chair, a little kid waved enthusiastically at me. That made me smile and was most definitely the highlight of my evening. Kids are so much easier than men!

Prior to this, I met up with a lad I went to school with. He’s a bit quirky with long, dark, wavy hair and piercing blue eyes – ding, ding, ding!!

Somehow, we got chatting after some 15 years, and I went to his place. There was no plan or agenda on my part. Yes, I fancied him but I’m terrible at the whole flirty, dating thing. So, although I hoped, I expected nothing.

Now, I’m completely non-ambulant and haven’t been up a flight of stairs in many years. So, despite worrying that I’d be dropped on the floor in a heap, I trusted him to carry me up to his room where he plonked me on his bed.

After a fair amount of kissing and rolling around, the boy got a bit excited and, well, released his manly juices over my lovely top! Mmm, crusty!

You may be surprised to learn this beautiful union developed no further. Shame, I did like him…

Dating with a Disability

Honestly, I hate dating. It’s generally pretty nerve-wracking. But, add a disability into the mix and the whole thing becomes even more challenging.

Disability aside, I am an acquired taste. I have a very dry, dark, and somewhat sarcastic sense of humour. I’m not a natural people person, and I can’t do small-talk to save my life. Yes, I’m a bit of a weirdo.

And then there’s the chair

Many seem to assume disabled people only date those with a similar disability. I never understood that.

Personally, I’ve only ever dated able-bodied guys. This isn’t necessarily a conscious decision, though in all honesty, it does make life easier!

Dating with a physical disability like mine can be awkward, embarrassing and frustrating. There are certain things I cannot do that I REALLY wish I could. So, you need to be willing to answer questions, explain your limitations and ask for help.

I don’t think I’ve dated anyone who hasn’t asked the following:

– Can you move?
– Can you feel?
– Do you hurt?

If and when you’re hit with the 20 questions, my advice would be to try and keep it light-hearted and good-humoured. Remember that many people have no knowledge or familiarity with your disability. They are simply curious and showing an interest in YOU.

You may be reluctant to date because of your disability. Maybe you lack confidence or think that no one would want you. Trust me, that’s bullshit!

Yes, you might make an arse of yourself and roll home feeling like a bag of shit. I know I have. But hey, if a date goes badly, you never have to see them again!

Bad experiences will knock your confidence. But you’ve just got to dust yourself off and try again.

One guy once told me that I’m no one’s type (referring to my disability). What a lovely chappy! Well, he kissed like some kinda mutant slug! So, no great loss there. Cheerio, bye-bye…

Dating Apps

This seems to be the go-to method these days. It works for many, but I’m not a dating app type at all. I can tell you now, you’ll never see my face on Tinder or PoF. And if you do, it ain’t me!

The only app I ever used – reluctantly – is Hinge (dubbed “Cringe”), recommended by a good friend.

Much to my surprise, it made quite an impact on me and effectively changed my whole perspective on love…

For a long while, I was referred to, by some, as “the ice queen”. I had my guard up and always kept people at arms length, due to low self-esteem and a fear of judgement and rejection.

I was totally cynical about love and never showed any interest in marriage – I wasn’t the little girl who fantasised about a big white wedding.

Despite a few dates, I wasn’t taking Hinge seriously and never thought I’d meet anyone or fall in love. That just wasn’t me. Then, most unexpectedly, I did.

Quite early on, my mum said she could see me falling for this guy. She told me if it didn’t work out, it would break my heart.

“Nah, we’re just keeping it casual and having fun. Nothing and no one will break my heart”.

Or so I thought. But damn it, mama was right. I really did fall for him. I fell hard and fast (not on the floor, although that has happened)! And my heart really did break when it ended.

But that’s life. Shit happens. You live and learn.

The point is, you have to be willing to take risks, open up, allow yourself to trust, and yes, to get hurt.

It sounds cliché, but it’s essential you realise your worth. Never allow anyone or anything to make you feel you are not good enough or undeserving of love and affection!

And, if anyone does make you doubt your worth, well, fuck ’em! (Not literally).

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.

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

World Book Day

Thursday 5th March 2020

My good friend and fellow wheelie wench, Lucy Hudson, is a published author!

Lucy, who also has a form of muscular dystrophy, is genuinely one of the most kind, caring and clever people I have ever known.

As today is World Book Day, I thought I would encourage you all to check out the two poetry anthologies she co-wrote with writer, Justin Brown.

Front cover of 'Wheels of Motion', a poetry anthology by Justin Brown and Lucy Hudson
Front cover of ‘Wheels of Motion’, a poetry anthology by Justin Brown and Lucy Hudson

Back cover of 'Wheels of Motion', a poetry anthology by Justin Brown and Lucy Hudson
Back cover of ‘Wheels of Motion’, a poetry anthology by Justin Brown and Lucy Hudson

Click here to buy!

Front cover of 'On The Road To Somewhere', a collection of poems by Justin Brown and Lucy Hudson
Front cover of ‘On The Road To Somewhere’, a collection of poems by Justin Brown and Lucy Hudson

Back cover of 'On The Road To Somewhere', a collection of poems by Justin Brown and Lucy Hudson
Back cover of ‘On The Road To Somewhere’, a collection of poems by Justin Brown and Lucy Hudson

Click here to buy!

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Wench Wars | Disney Villains

Book Review | Paraplegic, Sports Woman & Novelist

Book Review | ZENKA

The Girl on the Train: British Book vs. American Adaptation

Theatre Review | Birmingham Hippodrome

Product Review | Independent Living

I was recently sent a few products to try, by the lovely folk at Manage At Home and PETA [UK] LTD.

The Easi-Grip kitchen items are designed to help older people, and those like me with a disability, prepare and cook food independently.

Easi-Grip Food Preparation Board

Easi-Grip Food Preparation Board
Easi-Grip Food Preparation Board

This stylish food preparation board, made from sustainable Rubberwood, is a multi-purpose, top quality kitchen aid.

I was so impressed with this piece! It is really attractive and doesn’t look at all like a standard disability aid.

Easi-Grip Food Preparation Board
Easi-Grip Food Preparation Board

It is designed for those with weak hand function, including impaired grip, poor hand control and tremors.

Slicing a sweet potato using the multi-purpose Easi-Grip food prep board
Slicing a sweet potato using the multi-purpose Easi-Grip food prep board

Using only one hand, the Easi-Grip board allows you to grate and slice food effortlessly. The spiked area ensures food is kept in place for peeling and cutting.

Easi-Grip Food Preparation Board
Easi-Grip Food Preparation Board

Several essential items all-in-one: Stainless steel fine/coarse graters, slicers, collecting bowl, spiked area, and long-lasting wooden board.

I have muscular dystrophy ~ contractures, poor grip, and very little strength. Despite this, I found the Easi-Grip food prep board really easy to work with, and a huge asset. I no longer need to ask for any help, which is a big deal for me!

My mum, who has osteoarthritis, loves this equally as much as me! Suffering with joint pain and stiffness, she found it significantly easier to use than regular kitchen tools.

Easi-Grip Knives

Easi-Grip Knives 1. Bread knife 2. Carving knife 3. All purpose knife
Easi-Grip Knives 1. Bread knife 2. Carving knife 3. All purpose knife

This popular trio of knives has undergone a recent design revamp – the ergonomic handles are now thicker, making them easier and more comfortable to use.

The bright lime green areas indicate the “soft-feel” non-slip areas, as well as making them a bit more modern and aesthetically appealing compared to standard kitchen knives!

Demonstration of the Easi-Grip knife being used to cut a vegetable on the Easi-Grip food prep board
Demonstration of the Easi-Grip knife being used to cut a vegetable on the Easi-Grip food prep board

I would highly recommend all of these products to anyone, regardless of (dis)ability. They are top quality items and I am so thankful to Manage At Home and PETA [UK] LTD for sending them to me. I love to cook, and these kitchen aids have made life a little easier for me.

*Disclaimer*

This post is in collaboration with Manage At Home and PETA [UK] LTD. The products were gifted to me in exchange for an honest review. Opinions expressed are entirely my own.


Many thanks to Manage At Home and PETA [UK] LTD

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