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. ~

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…

Memory Lane | Child of the 90s

Though I still look about twelve (woo! 🙄), I’m actually now the grand old age of 31; A true child of the 90s.

A friend and I were recently gabbling away and reminiscing about things from our childhood.

Some were great! And others were…not so great.

Do you remember any of these..?

Babyliss Hair Straighteners/Crimpers

Image Description: Babyliss hair straighteners/crimpers from the late 1990s
Image Description: Babyliss hair straighteners/crimpers from the late 1990s

Many years before obscenely priced GHDs became the go-to hair straightener of choice, we had this bad boy!

A multi-purpose hair straightener/crimper, this clumpy contraption took about an hour to reach a lukewarm temperature. We then had to clamp each section for…oh, flippin’ ages!

Quite why we wanted to crimp our hair, I don’t know. But at the time, we thought we looked ace! On reflection…not so much.

Tammy Girl

Image Description: Tammy Girl shop front
Image Description: Tammy Girl shop front

Image Description: Classic Tammy Girl T-shirt
Image Description: Classic Tammy Girl T-shirt

I kid you not; I owned this very T-shirt and many like it, courtesy of the (not at all) classy pre-teen clothing store, Tammy Girl. Oh yeeaah!

Sadly, Tammy is no longer. I can’t think why.

Despite not wearing cool and funky clothes like this now I’m in my thirties, I remain a ‘babe with attitude’. Well, sorta!

Impulse O2 Body Spray

Image Description: Impulse O2 shower gel (left) and O2 body spray (right)
Image Description: Impulse O2 shower gel (left) and O2 body spray (right)

Bloody loved this stuff!! How I miss the lingering, intense scent of ethanol and limes.

Whyyyy it was discontinued, I’ll never know.

BRING IT BACK, IMPULSE!!

We don’t all want to smell of white musk (eau de old lady)!

Girl Talk Magazine

Image Description: Front cover of an issue of Girl Talk magazine from the 1990s
Image Description: Front cover of an issue of Girl Talk magazine from the 1990s

A highly educational read for pre-teen Carrie!

Every issue of Girl Talk came with freebies, like miniature furry photo frames (we all love those, right?), and posters of goats and donkeys.

I do like to lay in bed at night and gaze at a donkey poster, don’t you?

Animal Ark Books

Image Description: A collection of books from the Animal Ark series by Lucy Daniels
Image Description: A collection of books from the Animal Ark series by Lucy Daniels

Now, I had forgotten about these books (sacrilege!), until my mate asked, “did you read those rubbish animal stories that were all the same?”

Yes. Yes, I did.

No disrespect to author Lucy Daniels, but I don’t think she’s ever gonna take down J. K. Rowling with these riveting tales of piglets and pussies.

Blockbuster Video Store

Image Description: Blockbuster video store shop front. "Closing Down" posters shown in the windows
Image Description: Blockbuster video store shop front. “Closing Down” posters shown in the windows

Who remembers VHS? Anyone..? I genuinely miss video tapes and cassettes. You could chuck them on the floor and they’d still be good to go.

What I miss even more is going to Blockbuster on a Friday, after school, to rent a video for the weekend.

Simple pleasures. Happy days.

Woolworths

Image Description: A woman selecting sweets from a Pic'n'Mix display at Woolworths
Image Description: A woman selecting sweets from a Pic’n’Mix display at Woolworths

Need I say anything for this one?!

RIP Woolworths. What has the world come to?!

Kids today are truly missing out.

Lifts/Elevators | Wheelchair Life

Image Description: A wheelchair-user is seen facing a lift/elevator full of able-bodied people. Caption reads, "to you it's the easy way. To him, it's the only way".
Image Description: A wheelchair-user is seen facing a lift/elevator full of able-bodied people. Caption reads, “to you it’s the easy way. To him, it’s the only way”.

As a non-ambulatory wheelchair-user for the past two decades, I’ve experienced many frustrating encounters with lifts/elevators.

~ Being unable to fit inside because they’re occupied by physically fit (lazy, ignorant) able-bodied people

~ Getting stuck in them (once on a very old ferry!)

~ Getting stuck out of them (broken/out of service)

~ Waiting, waiting, waiting…

Image Description: Closed lift/elevator doors with a sign above displaying the words, "lift not in service"
Image Description: Closed lift/elevator doors with a sign above displaying the words, “lift not in service”


As a teenager, I went shopping to my local TJ Hughes store (super cool!), which was on three floors. It was a crappy old lift but nevertheless I travelled to the top floor because, well, I wanted to!

When I came to use the lift again, it wouldn’t work – it was completely unresponsive.

Unable to walk at all, I was stranded on the third floor in my manual wheelchair.

More than a little irritated, I started hammering the call button on this lift, “you WILL bloody work!!”
It didn’t.

Image Description: 'No Entry' barriers surrounding an out of service lift/elevator. A repair man is trying to fix the lift.
Image Description: ‘No Entry’ barriers surrounding an out of service lift/elevator. A repair man is trying to fix the lift.

At this point, I was left with no other option than to be manually carried down two flights of stairs by a member of staff. Talk about awkward!

Well, it was either that or, frankly, I’d probably still be stuck there now.

Thankfully, I’m teeny tiny, my wheelchair was lightweight and foldable, and the guy who carried me was young and smelt amazing! I was tempted to ask what he was wearing but thought better of it. I’m not that weird…

It was fortunate that I wasn’t in my current powered wheelchair. If I had been, I honestly don’t know what would have happened…forever stranded in TJ Hughes!

It’s a memory that’s imprinted on my mind. It shouldn’t have happened, it was annoying, undignified, embarrassing and yes, at the time, I was thoroughly pissed off!

Although, on reflection, it is pretty funny. Got to laugh, right!

Of course, it made me wary of using lifts in the future. But I really don’t have a choice! I’m not going to avoid them and miss out just in case something bad happens.

It’s inconvenient at the time but always resolvable.

IF I do ever get stuck again, well, then I’ll worry about it…IF.


Side note ~ If you are fit and able, and have two fully-functioning legs, please use them! Kindly take the stairs and let those in need access the lifts/elevators. Ta muchly!

February | Love & Kindness

This month, we’ve embraced/endured Valentine’s Day, and celebrated Random Acts of Kindness Day.

Screenshot from @MDBloggersCrew Twitter feed, from Random Acts of Kindness Day.

All of this has made me think about relationships and what they really mean.

Valentine’s Day Selfies

Funny Valentine's meme

We’ve all seen couples posting impossibly idealistic, airbrushed selfies on social media, making us believe their lives together are perfect and they couldn’t want for any more in a partner.

Ha! Who are you trying to kid? (Call me cynical).

But the truth is, when you live with someone, whether it be family, friends or a partner, you will inevitably, at times, rub each other up the wrong way and fall out. To think otherwise is, frankly, naive.

They may be senseless, petty disagreements or more serious conflicts. The important thing to consider is how you react and resolve such issues.

As the saying goes, never sleep on an argument. It may seem daft, but it’s true. An unresolved argument will just fester away.

It’s Good to Talk

Some people, somewhat understandably, choose to avoid any sort of conflict and refuse to acknowledge tension within their relationships; sweeping it under the carpet. This isn’t a healthy approach.

If you have a grievance, talk about it calmly and reasonably. Share your worries and concerns with friends, family and loved ones. Don’t bottle things up. Again, it will just fester away resulting in bitterness and resentment.

It’s Really Okay to Disagree!

We can’t all be the same. If we were, life would be very boring. You don’t have to like all the same things or agree with everything those around you think and feel in order to love them. I repeat; to think otherwise is, frankly, naive.

#BeKind

Kindness isn’t agreeing when you don’t, or avoiding potentially difficult conversations just to keep the peace. Kindness isn’t pretending to enjoy things you don’t simply to please others. Kindness isn’t inflating another person’s ego to make them feel good.

Kindness within relationships is about respecting each other’s views, differences, individuality and needs. It’s accepting that we are all flawed and forgiving sincere mistakes. Kindness is about caring enough to keep each other safe, supported and grounded.

International Women’s Day

To celebrate #InternationalWomensDay, here are some motivational words of wisdom from just a few of the many inspiring women throughout history.

These women advocate equality, inclusion and disability awareness.

Above: Deaf-blind American author and political activist, Helen Keller (1880 – 1968).

Above: Rosa May Billinghurst (1875 – 1953), was a women’s rights activist known as the “cripple suffragette”. She suffered polio as a child and, as a result, was left unable to walk.


What International Women’s Day Means to Me

Light is often shone on independent career women and high-profile personalities; celebrities, public speakers and so-called ‘world changers’.

Of course, these women deserve our respect and applause. But I’d like to also draw attention to the “ordinary” every-woman.

These are the women we are not aware of. We don’t know their names or their stories. These are the women behind the scenes who just get on with life, however challenging.

The single mum’s.

Those living with debilitating conditions and struggle to get out of bed each morning.

Those caring for multiple family members, who don’t have the option to go on holiday or pursue a career.

Women who are relied upon by disabled children and elderly relatives, and have no support or recognition.

Many suffer and struggle in silence. They simply get on with their lives without any fuss or complaint. These women deserve to be celebrated too!

They play a vital role in society – one that takes endurance, tenacity, strength of character and sheer grit. It takes a special kind of person to achieve this.

So remember, you don’t need to change the world to deserve respect and recognition. Being loved unconditionally, appreciated and making a difference to just one person is EVERYTHING!


Related Blog Posts:

International Women’s Day 2018

Interview | The Trailblazing Women of Muscular Dystrophy UK