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.

2019: A Year in Review…Sorta!

My little blog consists mostly of disability reviews, guest blogs and interviews with notable disabled people, such as NTA award-winning Emmerdale actor James Moore (check it out, folks!).

In order to raise awareness, I have discussed my own disability (Ullrich congenital muscular dystrophy) and how it affects me, though I’ve always made the conscious decision to avoid talking about anything personal.

People who know me well often describe me as incredibly private and somewhat closed-off. They’re not wrong. But I have my reasons. That said, I’ve been trying to open up a little more and share a closer insight into my everyday life in recent blog posts.


For me, 2019 really has been a year of major highs and lows.
The summer was genuinely the happiest time of my life. Everyone noticed.

Now, I’m the type to roll their eyes at the mention of people “glowing with happiness”, sceptical old bint that I am, but apparently it is a thing.

I was kinda hoping it would last longer than it did. But hey, that’s life.

Soon after my birthday came a swift punch in the gut (not literally, fear not!) and that marked the beginning of one of the unhappiest periods of my life. These things come to try us!

I’m not going to lie, this past month has been pretty crap.

Yeah, Christmas is a time to celebrate, have fun and be with those you love most. But it can also emphasise and remind you of what you’ve lost. And who you’ve lost.

I have some amazing people around me – family and friends. Thanks to those of you who patiently put up with me being a miserable fecker!

Some have offered wise words and advice, some have made me laugh when I really needed to, and others have simply been there to listen. You lot are what life is about (Ooh, deep!).


Let’s get this year out of the way and I promise, in 2020, I’ll pick myself up and get back to “the old Carol” ~ generally pratting about, laughing at inappropriate things and maybe even smiling occasionally 😱


A final word for anyone struggling for whatever reason…

I don’t want to get too serious. After all, it is Christmas – oh, joy!

Life ain’t all shits and giggles. I really wish it was. But it just isn’t.

Sometimes life gives you lemons (bastard lemons!) So what you gonna do? Throw ‘em back even harder, I say.

I may be pixie-sized but I’m pretty damn defiant. I’ve faced a fair few battles over the years. Truth is, the battle never really ends. But you gotta trudge through. What’s the alternative?


When I was 8 or 9, I fell off a horse. The horse decided she’d had enough of this trotting bullshit, and wanted to play silly buggars. She bolted downhill then stopped abruptly, throwing me forward.

I landed with my arse in a muddy puddle and lost my bloody boot. Yeah, I was a bit shook up. But I could either sit in that puddle and sulk (well, I couldn’t get up and walk off!) or get back in the saddle. So, I got back on psycho Sally!

Point is, life can be a bitch, but you gotta carry on and you gotta help yourself. Find what makes you happy and go for it!


I have a few things lined up for the new year, including some truly thrilling blog posts (I can sense the excitement already!).

Merry Christmas, folks. Take care! See you in the new year.

This is my brother’s tree, not mine. His is better! Don’t wanna ruin the aesthetic, y’know.

Disabled Life | Daily Frustrations

As some of you may know, I have the rare condition Ullrich congenital muscular dystrophy, and consequently, I am a full-time wheelchair-user.

I have just turned 31 (sooo old!) and, in order to live my life, I require support from personal carers.

Today, I (well, actually my mother) received the following letter…

Now, don’t you just love it when so-called “professionals” invite themselves to your home to drink your tea and eat your biscuits at a time and date to suit them?

How about…NO!

It seems the assumption is that disabled folk just sit at home all day, idly twiddling their thumbs ~ Nah, mate.

Not only that, they failed to inform me and instead wrote to my mother! WTF?!

I know I’m child-sized but I am in fact a fully-functioning adult who manages all aspects of her own care needs.

~ My disability!
~ My carers!
~ My business!
~ My life!!

I wouldn’t mind so much, only I’ve spent months jumping through hoops (not literally, obviously) and answering the most inane questions in order to qualify for NHS CHC (a continuing healthcare package – to pay personal care assistants).

*FYI ~ I am currently in receipt of Direct Payments, enabling me to employ and pay my own carers* 

As yet, I haven’t received a penny via CHC, though I did get a call to say an initial payment was made during the summer. Nope, sorry, no it has not!

(Little tip for you ~ when it comes to NHS/council funded care, QUESTION EVERYTHING!)

Rant over 😊

Have a lovely, lovely day 👍🏻

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

International Women’s Day 2018

Just a quick post today, to (belatedly) celebrate International Women’s Day 2018.

It is held on 8th March, every year. Here are a few quotes that resonate with me…

What does International Women’s Day mean to you?


This post comes to you a little late, since I spent Thursday 8th March in hospital having an operation – fun, fun!

I’m now on the mend and planning future blog posts.

What topics would you like me to cover?

If you have any ideas or suggestions, I would be grateful if you would leave a comment.


Please follow me on Twitter and Facebook

Walking vs Wheelchair: Accepting the Need for a Wheelchair

I was recently invited to write a guest post for the lovely SimplyEmma.

You can view my post for Emma here.


I’ve noticed a lot of discussion, within Facebook groups, around the topic of walking versus the use of a wheelchair.

Many disabled people gradually lose the ability to walk over a period of time. Often it occurs in stages: from independent mobility, to the need for walking sticks, then a frame and finally a wheelchair.

I appreciate that for the individuals affected, it is an incredibly difficult decision to make. Do I continue to walk for as long as possible, despite the struggle and restraints? Or, do I resign myself to the confines of a wheelchair?

I have noticed, from comments on social media, that this is how some view wheelchairs: objects of confinement and restriction.

On the contrary, I see my wheelchair as an essential mobility aid, removing the limitations I faced when walking for only short durations. The powered chair I now use offers me freedom and independence.

Obviously, your condition and individual circumstances determine whether or not you have the option to continue walking.

Personally, I never had a choice. I have Ullrich congenital muscular dystrophy and lost the ability to walk quite abruptly at the age of 10. Not that I could walk very well or very far up to that point.

Nevertheless, the choice was taken from me. I had reached a stage where I literally couldn’t support my own weight. Grit and determination played no part. And so, I went from walking minimal distances whilst wearing leg splints, to using a manual wheelchair that I couldn’t self propel due to a lack of strength and joint contractures. Sticks and frames were of no use to me whatsoever.

It was a difficult transition, of course. But not totally unexpected. As a child, I was offered little assurance of how my condition would progress. Doctors simply didn’t know. They couldn’t tell me if I would maintain my ability to walk or not. It was a case of, wait and see; roll with the punches. So that’s what I did.

To be honest, I was to a large extent relieved to be using a wheelchair, despite the fact I was dependant on others to manoeuvre me around. Even just a few small steps was a huge feat and physically laborious. That in itself was disabling me.

Committing to a wheelchair full time meant that I was free to roam with my peers. Kids at school used to squabble over whose turn it was to push me around. I was no longer exhausted, battling to stay on my feet or falling over and injuring myself. Being non-ambulant, I no longer had to wear those unsightly leg splints, which pleased me no end!

I had recently started middle school and, within a matter of a few weeks, I found myself completely unable to weight-bear.

However, less than twelve-months later, I was fortunate enough to benefit from my first powered wheelchair. I can’t emphasise enough how much of a difference this made to my life.

I could zip around at break times with friends, I could take myself wherever I wanted to go without the need for assistance, and I could venture into the local countryside. I was no longer confined!

It’s been eighteen years since I took my last footstep. And, I can honestly say I don’t miss walking. Naturally, I wish I could stand, walk and run ‘normally’. But I would never trade my wheelchair for my old leg splints, the bumps and bruises from falling so often, and the constant exertion to achieve a few small steps.

Not that I have a choice.