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!

Muscular Dystrophy Q&A

1. What is it?

Muscular Dystrophy is an umbrella term for a group of muscle diseases.

There are nine forms (see image above), which then divide into many more sub-types.

The various forms of MD differ significantly in which areas of the body are affected, severity, rate of progression, and the age of onset.

Some are born with the condition, while others do not display symptoms until adulthood.

2. What causes it?

A faulty or mutated gene. It is therefore, a genetically inherited condition.

If one or both parents have the mutated gene that causes MD, it can be passed on to their children. However, this doesn’t necessarily mean the children will have the condition. But they may be carriers.

I have a rare form of congenital (from birth) MD, which is an autosomal recessive disorder, meaning you inherit two mutated genes, one from each parent – as shown in the image below.

Congenital Muscular Dystrophy ~ Autosomal recessive inheritance
Congenital Muscular Dystrophy ~ Autosomal recessive inheritance

I am the only known member of my family to be affected by muscular dystrophy. My unaffected parents (both carriers) had never heard of the condition, and so, it was a huge shock to receive my diagnosis at the age of 4.

3. What form do you have and how does it differ from other types of muscular dystrophy?

I have a rare form of congenital (from birth) MD, called Ullrich.

I wrote a whole post about my life with Ullrich congenital muscular dystrophy.

But in summary, it is slowly progressive, causes joint contractures, and does not affect the heart or intelligence.

4. Can people with MD have babies?

The simple answer is YES! MD doesn’t affect fertility in any way.

My good friend Fi Anderson has a rare form of MD, and is a mother to two daughters, neither of whom have MD. Check out Fi’s blog here!

5. Can a baby be tested for it in the womb or only after birth?

Prenatal diagnosis is possible for some forms of muscular dystrophy, but not all. Non-invasive testing can be carried out from 7 weeks into a pregnancy.

If one or both parents are carriers of a particular muscle-wasting condition, there is a risk the child will be affected.

It is advisable to contact a geneticist for further information and guidance.

6. What do you wish people unfamiliar with MD knew about it?

I wish there was much more awareness of the condition, and the fact that there are many varying forms.

Sadly, many people haven’t even heard of it.

Furthermore, those who have tend to associate it with Duchenne (the most common form).

Almost every medical professional I’ve encountered throughout my life has assumed I have Duchenne, which goes to show the lack of familiarity and education.

There is a lot of information, research and charitable funding for Duchenne MD, which is fantastic. But, there is very little for other forms, which is, I have to admit, rather frustrating.

This means that people living with lesser-known forms, that are just as debilitating as Duchenne, do not receive the same support.

7. How has your life been impacted?

UCMD impacts every part of my life.

I became completely non-ambulant at age 10, and I now use a powered wheelchair.

I have severe contractures in all of my joints (knees, hips, elbows, wrists), and a severe scoliosis (curved spine). As a result, my balance is very poor.

UCMD affects my respiratory function. 7 years ago it became necessary for me to use a BiPAP machine (non-invasive ventilation) nocturnally.

For me, a common cold can very quickly develop into a serious respiratory illness, such as pneumonia (which I’ve had numerous times).

I experience chronic fatigue due to the progressive muscle-wasting and my squashed torso, which prevents expanditure of my lungs.

Illustration by Jessica from The Disabled Life ~ http://thedisabledlife.ca/
Illustration by Jessica from The Disabled Life ~ http://thedisabledlife.ca/

I try to live as “normal” a life as possible, having attended university and learnt to drive (though this is no longer possible as my condition has deteriorated).

8. Pros and Cons of living with UCMD?

The cons of my condition are mostly listed in the previous answer. The most bothersome of these are the respiratory decline and chronic fatigue.

You might think being unable to walk would be the most frustrating thing. And while I do wish I could walk, jump and run, this has never really bothered me all that much. It is what it is, and you learn to adapt.

The pros I would say, include the network of people I have in my life, people I wouldn’t know if it weren’t for my condition.

I have made some amazing friends through blogging and living with muscular dystrophy. For this, I feel incredibly fortunate and thankful.

Other pros include my Motability WAV (wheelchair accessible vehicle), blue badge for free parking, and being able to skip to the front of the queue at tourist attractions!

My Motability WAV
My Motability WAV
9. Has it changed/got worse over time?

Yes, my condition is progressive and life-limiting. My symptoms have got worse over time.

The term life-limiting can, understandably, be scary for many to hear. While I don’t expect to live to be old and wrinkly, I have no plans to pop-off anytime soon!

After all, if you’re a smoker you are limiting your life expectancy!

As a child, I could walk short distances wearing custom-made leg splints.

Joint contractures and the severity of my scoliosis has increased.

My lung function is significantly worse as an adult.

10. What are some of the common misconceptions?

There are many! Here are just a few assumptions…

I have family members with the same condition (I don’t).

I can’t have children.

I can’t have sex or a loving relationship (some even assume I wouldn’t want to).

Many assume I can walk, even when I try to explain I am completely non-ambulant.

People think I take lots of pills and potions – if only there was a miracle cure! I’d take it in a heartbeat.

For more examples, check out this blog post I wrote all about societal preconceptions related to being a wheelchair-user.


Related Blog Posts:

Muscular Dystrophy | A Guide For Parents

My Life with Ullrich Congenital Muscular Dystrophy

Scoliosis | Why I chose not to have a spinal fusion

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

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

Related Blog Posts:

Product Review | Bellavita Bath Lift from Manage At Home

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!

New Year, More Me!

We’re now in the midst of January, and many are following a “new year, new me” health and fitness regime.

Most of us over-indulge at Christmas. Too much rich food and too much booze.

Everywhere you look, it seems people are trying to lose weight and tone-up. Fair play to them! Do what makes you feel good.

But just to break the trend, here I am trying to put on weight!

Okay, so…I’m teeny tiny. Pixie sized! My weight has always been fairly consistent and never really fluctuated.

Of course, my condition influences this. Muscle weighs vastly more than fat, right? Well, I have very little muscle mass. And so my BMI is always going to be much lower than the average.

I won’t lie, I’ve always consciously monitored my weight and my calorie intake. Not due to vanity, but practicality.

I am non-ambulant and therefore cannot transfer independently. I get thrown around a lot! From chair to chair, chair to bed etc. If I were significantly heavier, life would be much more difficult!

People who struggle to lose weight often ask me how I stay so tiny, considering I’m unable to exercise. Well…

~ Growing up with older brothers helps! I’ve always scraped food off my plate onto theirs. And they were always happy to finish off any food I left.

~ Study food labels and count calories.

~ Self limitation. I’ve almost trained myself to say no when someone offers me chocolate or a biscuit. Bad, I know.

~ It might sound silly but, over time your stomach does shrink and your body adapts. You learn to function on fewer calories.

*Now, to make it absolutely clear, I am in no way dictating, advising or advocating such bad habits! I am very much aware that this is unhealthy behaviour.*

So, why do I now want to put on weight?

When I’m ill, I eat less. When I’m really stressed, I stop eating. In these instances, I am NOT consciously monitoring my weight.

Over the past 2 months, I have unintentionally lost weight. This will no doubt affect my overall health and wellbeing, reducing energy levels and leaving me vulnerable to infection and illness.

Believe it or not, increasing calorie intake is far more challenging (for me) than you might imagine. It’s difficult to break the habit of a lifetime!

Before, I would go literally all day without eating a thing. No breakfast, no lunch. I would then pick at my dinner and that would be it.

I am now constantly reminding and forcing myself to consume food and drink, little and often, throughout the day.

If I can put on half a stone, I’ll be happy. I’ll still be skinny, but I’ll be healthier. That can only be a good thing!

Wheelchair Review & Complaint

Sunrise You-Q Luca ~ Poor Quality Armrests

In October 2018, I was able to privately purchase a new powered wheelchair, replacing my worn-out 8 year-old Quantum 600 mid-wheel drive.

My old Quantum 600 MWD wheelchair

I opted for a Sunrise You-Q Luca, mainly due to it’s compact and manoeuvrable design.

My Sunrise You-Q Luca RWD wheelchair

I chose a rear-wheel drive (having found my mid-wheel drive Quantum to be less capable over rough terrain).

I received a voucher from NHS Wheelchair Services to the value of £1750, and a £2,500 grant from the Joseph Patrick Trust.

The total cost of the chair was just over £7,000. A huge expense, but compared to most other powered wheelchairs on the market, the You-Q Luca is definitely one of the cheapest options!

I really wanted flip-up armrests on my new wheelchair to make transferring easier. However, over the past year, the soft foam pads on the armrests have slowly disintegrated.

Bearing in mind how expensive this equipment is, and how long it took to raise the necessary funds, I take good care of my wheelchair!

I have repeatedly attempted to patch-up the armrest pads with super glue. But they are now in a state of non-repair.

Considering the price and the fact that the wheelchair is only 15 months old, I am really shocked and disappointed with the product.

The wheelchair itself is great. The armrest pads are total crap!

I bought the wheelchair from a company called Better Mobility.

I cannot fault their customer service or the assessor who bought a number of demo chairs to my home to try prior to purchase. He was very knowledgeable, patient and not at all pushy (as some sales rep’s can be).

However, I find the quality of the armrest pads to be extremely poor.

As you will see from the image below, to replace them will cost an additional £83.40 – a rather hefty sum to replace an item on a relatively new powered wheelchair!

I am reluctant to pay the £83.40 to replace the armrest pads, particularly as they are likely to disintegrate again within a few months. In the meantime, I am left with an unsightly product that is literally falling to pieces.

Please share!

Physical Health & Mental Health

Physical disabilities/impairments and mental health issues are not mutually exclusive!

Many people, like me, living with disabilities and chronic illnesses are affected by stress, anxiety or depression at some point in their lives.

This is not to say that the disability/impairment, whether temporary or permanent, is the primary cause of the mental health issue. It could be a contributing factor, or they may be completely unrelated. You might just be super lucky and have been blessed with both – Double whammy!

Equally, those struggling with their mental health will often (if not always) experience physical side effects, such as headaches, fatigue, insomnia, restlessness, nausea and chest pains.

Essentially, what I’m saying is, the mind affects the body and so the body affects the mind.


My Disability & Point of View

I was born with a rare form of muscular dystrophy – a physical disability – that has progressed over time. I am now a non-ambulatory wheelchair-user, having lost the ability to walk at age 10.

My condition has a considerable effect on my body and physical capabilities. With the best will in the world, there are many things I cannot do.

For example, my older brother is very fit and able-bodied. He has travelled the world and often goes trekking through the countryside and climbing mountains.

Last year, he and some mates completed the Three Peaks Challenge in aid of Muscular Dystrophy UK. Gruelling and possibly a little bit crazy, considering the 3 lads did all the driving themselves – but wow!

I often wish I could be out there with him. It might not be everyone’s cuppa, but it would be nice, just once, to experience that sort of thrill and adrenaline rush. A real physical accomplishment whilst being in the midst of nature.

But, I can’t. And I never will. Of course, this gets me down and impacts on my mood. Yes, I wish I could walk, run, dance, be completely independent and spontaneous. But I can’t. I am limited and reliant on support from others to live my life. This is something I have no choice but to accept.

There is no treatment, no cure, and no pill I can pop to help the situation. For lack of a better phrase, it is very much a case of, deal with it!

I cannot control my disability or how it affects my body. Therefore, it is important to focus on the things I CAN do and control.

I can’t dance, so I like to watch the dancing (yes, I’m a sad, old Strictly fan. Don’t care!)

I can’t drive, so I have a passenger WAV (wheelchair accessible vehicle), which allows me to get out and about.

My Motability passenger WAV (Wheelchair Accessible Vehicle)

I can’t walk or run, so I roll (with style)!

Admittedly, I’m pretty crap at sorting my own problems out. So I tend to focus on other people’s 😂 Not necessarily a good thing, but there ya go!


Living with a physical disability is a way of life. It is inflicted on us – we have not chosen this path. Similarly, living with a mental health illness is a way of life. So what you gonna do? ADAPT or Die!

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.