What I’ve Been Up to Lately | Muscular Dystrophy

Following a decent run of health, things took a dive in October, with one thing after another.

Covid hit me hard and put me out of action for a good 6 weeks, which meant another November birthday spent ill and alone.

I won’t lie, it wasn’t the best of times. But I do have the best parents who, despite being in their 60s, support and care for me, no questions asked. I don’t know where I’d be without them.

My dad – a man of few words, and the best man I ever did meet – wrote a really touching message in my birthday card, which had me in tears (it was a teary few months!).

As the new year approached, I tried my best to pick myself up and get back to some kind of normal – whatever that means.

Gotta keep on keeping on, right!

2022

Firstly, I dyed my hair from the usual blonde to brunette (wild, I know).

22nd Feb: The first face-to-face appointment with my muscular dystrophy consultant since 2019.

The highlight was buying a shit load of fruit and veg from the market stall on the way out – I know how to live!

9th March: Beauty and the Beast at Birmingham Hippodrome.

The show was magical and this theatre is, by far, the best and most accessible I’ve visited.

It’s been a while since I roamed around Birmingham at 11pm – Such a rebel!

Things I’ve been enjoying

It’s a Sin – Set in London during the 80s AIDs epidemic, this 5-part miniseries has a great cast, a brilliant soundtrack (in my opinion), and the final episode is heartbreaking.

This is Going to Hurt – Having read the book by dry-witted former doctor Adam Kay, I was keen to check out this TV adaptation, and I wasn’t disappointed. It is funny, brutal, tragic and eye-opening. I highly recommend this one!

Lord of the Rings – Now 20 years old, I decided to indulge in a solo movie marathon and revisit this epic trilogy.

Samwise has always been my favourite character. And why? His loyalty is unwavering and unconditional. We all need a Samwise in our lives!

Plus, the actor, Sean Astin, starred in The Goonies (1985), and remember, “Goonies never say die”!

~ BIG 80s fan here!!

Duolingo – At the grand old age of 33, I’m attempting to learn French, (super cool), after dropping the subject in year 9, in favour of German. And this time, I’m sticking with it.

Looking forward…

Spring is now well on the way, and with that comes warmer, sunnier, happier days ahead.

Though I’m no longer able to drive, which is incredibly limiting and frustrating, I will endeavour to get out and about as much as physically possible.

June – I’m off to Cornwall to spend some time with a good friend, and, of course, to see the sea – a rarity for this landlocked Midlander.

August – I’m excited to return to the Birmingham Hippodrome to see Les Misérables (for the second time).

I love the theatre, having seen many shows over the years. It’s one of my favourite things to do.

My Disabled Body | Muscular Dystrophy

Anyone who knows me will tell you I’m incredibly self-conscious of my disabled body.

I’m much more of a behind-the-scenes presence, and I hate being photographed!

My insecurities have deepened over the years, as my condition (Ullrich congenital muscular dystrophy) has progressed.

My spine is curved significantly in a ‘S’ shape, shortening my torso and causing asymmetry. I am underweight with muscle degeneration, and contractures in all of my joints.

Oh, and I am a ghostly shade of pale!

Being so very slight of stature and a non-ambulatory powered wheelchair-user, clothes are ill-fitting, often uncomfortable and don’t drape well.

Most of the time I feel like a bag of crap!

As a kid, though aware of the physical differences between myself and my peers, I really didn’t care. I was generally happy with a good group of friends.

Me, wearing school uniform, aged 4
Me (right) with a primary school friend (left)
Aged 8, sat in my manual wheelchair at school
Me (second from left), aged 9, with primary school friends
Me, aged 9, with primary school friends
On holiday, in my manual wheelchair. Aged approx 12

But, of course, kids (and adults) can be blunt, and, sometimes cruel with their words and observations. As time went on, I was subjected more and more to stares, pointing, judgement and exclusion.

I became a full-time wheelchair-user at the age of 10.

Back then, it was very much a case of ‘suck it up and get on with it, these are the cards you’ve been dealt’.

Looking back, I guess it affected me more than I realised.

My teens were hard. I became increasingly withdrawn, conscious of what I consider my flaws, and constantly compared myself to other girls, wishing I looked like them.

Me, aged approx 15
Me, aged approx 17, trying to avoid the camera

Then came the dating years…

Comments such as, “you’re no one’s type” and “no one’s going to want you” massively impacted my self-perception and relationships.

Somewhere along the way, I lost myself and my sense of identity.

Now aged 33, I appear more child-like than womanly. I can honestly say, I’ve never felt sexy, or even attractive, in my entire life!

I’m not body-confident, and I don’t think I ever will be. I still compare myself to others and shy away from people, places and opportunities.

But, I am really trying to accept the fact that there is nothing I can do about my body. It is what it is – unique. I need to make the best of what I do have.

If others don’t like it, that’s absolutely fine, but they can kindly fuck off!

In an attempt to push myself out of hermit mode, I recently ‘dressed up’, took some sour-faced selfies, and posted them on Instagram…

…Excuse the Listerine in the background, haha!

The response was positive, complimentary and sincere. It gave me the confidence to write this post and ‘put myself out there’.

Why? Because I am what I am. I’m not “normal”. But what is “normal”, anyway?

33 | Getting “Old” With Muscular Dystrophy

According to Generation Z, once you hit 30, you’re OLD!!

Photo of an old woman, wearing sunglasses and holding up both middle fingers

I recently turned 33 (positively primeval!) which, I guess, means I should be stocking up on Pond’s wrinkle cream, Werther’s Original, and tea – lots of tea!

Considering I still look 12 – a blessing and a curse – I might save my pennies and give the wrinkle cream a miss. I do love a cuppa, though.

A fairly recent selfie of me, in my powered wheelchair, wearing ‘old lady’ fluffy socks and no makeup

33

This year’s birthday was a tough one…

In October, I caught Covid (bit of a buggar!), which hit me hard.

“Normal” life came to an abrupt halt and, 5 weeks later, I’m still struggling with breathlessness, pain and exacerbated chronic fatigue.

For those of you who don’t know, I was born with a rare form of Muscular Dystrophy – a progressive condition. Consequently, my lung function is total crap, immunity impaired, and a significant scoliosis causes my internal organs to fight for space.

Illustration provided courtesy of ‘The Disabled Life

~ Find out more about my life with Congenital Muscular Dystrophy ~

I’m a seasoned pro when it comes to extended periods of enforced isolation and inactivity, resulting from a lifetime of ill health. Fortunately, I’m more than comfortable with my own company!

In all seriousness, spending your days sat in the same chair, in the same room, attached to a ventilator 24/7, unable to make it as far as the kitchen, let alone leave the house – it’s…really not good!

This latest period of downtime allowed me to reflect on my 33 years – what I’ve learned, and what I want to focus on going forward.

My Life Lessons

  • Stop caring what others think of me

    (because, actually, they’re probably not thinking anything)

I can trace this back to a comment made by a fellow pupil at primary school who told me, you look normal when you sit down but really weird when you walk”.

A photo of me, aged 4 or 5, wearing primary school uniform and visible leg splints

I remember it vividly and, ever since, I’ve been painfully self-conscious, particularly about my appearance. But, now I’m ‘old’, I’m trying not to care about the opinions of others, especially total strangers.

Take me as I am or not at all.

  • Be my true, authentic self

I once had a (sort of) date which ended up in the guy’s completely bare bedroom. In this room was only a bed, some strewn clothes and a copy of, Alice in Wonderland. Rather than attempt to flirt and seduce (yeah, I’m cool), I turned my attention to the book and asked what it meant to him.

His answer made an impression on me:

“I like it because it’s about being open-minded, being yourself, holding onto your identity, and being comfortable with who you are. I’m weird, you’re weird, everyone’s weird! And that’s a good thing, in my view.”

Man, he was…DEEP!

  • Don’t waste my time, effort or tears on those who don’t care

I think, for most of us, our social circle becomes smaller as we age. And this isn’t a bad thing! On the contrary, you learn who you can be your unfiltered self with, who is willing to tell it as it is, who has your back, and who you can count on when times are hard – the ‘no matter what’ friends and family.

I am guilty of investing too much energy into the wrong people. But, from here on, I will realise my worth and focus only on those who bring joy to my life.


Well, I must now bring this lengthy blog post to a close and get back to my milky tea and digestive biscuits.

~ The content old fart that I am!

Image of an old lady happily drinking a cup of tea

I Caught Covid

For the past three weeks, I’ve been battling Covid, having tested positive on 27th October. I was, in fact, due to receive my booster jab the following day. Bloody typical! Despite being double vaccinated, the virus hit me hard, really hard.

A selfie, taken on 24th October – the day I caught Covid-19

Physically disabled from birth, I’m one of the many considered ‘clinically extremely vulnerable’.

My condition, Ullrich congenital muscular dystrophy, is rare, progressive and affects lung function. This is made worse by a spine that’s as crooked as a question mark and a squashed torso.

I’ve always been a “sickly kid”, susceptible to respiratory viruses, which become more and more difficult to overcome, the older I get.

Throughout my 32 years, a considerable amount of time has been spent in hospital. I’ve endured several bouts of pneumonia, pleurisy and a collapsed lung. Furthermore, my immune system is very much suppressed and affected by at least 15 surgeries under general anaesthetic – I stopped counting after a while.

It’s fair to say, my fragile, little body has taken a battering. And I am tired.

These days, it takes at least a month before I even begin to improve. Life quite literally comes to a stop. Once symptomatic, I become dependent on my BiPap ventilator 24/7. I go from bed, to chair, to bathroom. And that is how I exist. Time becomes meaningless and the days merge into one.

~ I’m not including photos of myself whilst ill because, well, I don’t want to. I don’t have the energy or interest for selfies, and, I don’t want pity. I don’t allow anyone other than my parents to see me in this state, it’s simply personal choice. ~

Few people really empathise and grasp the seriousness of the situation, which I totally appreciate. It’s difficult to comprehend something you haven’t seen or experienced for yourself. Admittedly, 20 year-old me wouldn’t understand either.

Life back then was very different. I was a night owl, regularly staying up until 4am and feeling fine the next day. I completed a coursework focused university degree, spending some days on campus from 9am – 9pm, followed by a 40 minute drive home. Though never a party girl, I did my fair share of drinking and socialising. Trips away with friends involving going out all day and every night, then clambering back to the hotel in the early hours just didn’t affect me. I had the energy and ability to do the things I wanted to do, and it was fun.

These days, it takes everything I have to get out of bed (assisted by carers) and shower.

It’s not the life I wanted or hoped for. But it’s all I have to work with. And yes, it does affect my mood, attitude, point of view and relationships.

A LOT of my time is spent resting. Of course, I would much rather be out, exploring, experiencing, making memories, living it up, and doing fun, daring, exciting activities. But I simply can’t.

Though I try to hide the severity of my condition, a select few people, whom I trust and am closest to, know how much I struggle.

I only told four people about my Covid diagnosis. Mainly because, well, it isn’t the happiest subject, is it! And right now, all of my resources are focused on recovery.

Inevitably, word gets around, and neighbours as well as family friends are also now aware. And they’ve been absolutely incredible.

Flowers from friends

To the people who expressed genuine concern, care and support – thank you so very much! You know who you are, and I value each and every one of you.

“Thinking of you” flowers

The generous gifts, cards and daily messages have been a huge comfort. I’ve even received medical supplies, vitamins and immune boosting supplements from friends! Real friends who step-up when life is pretty shitty.

Knowing that people care is worth more than anything in life.

My constant companion

To close this rather rambly and inarticulate post, I want to pay the biggest tribute to my parents, particularly my mum, who has patiently cared for me throughout, and not left my side. It’s not only my life that’s been put on hold by Covid, but theirs too.

For those who don’t know, I still live with my parents, in their home. It’s far from ideal and we do butt heads from time to time. But the love and loyalty is unconditional.

My mum is 67, suffers from arthritis, and, four years ago, underwent knee replacement surgery. She’s lead an incredibly challenging life, which I won’t go into. She is an UNPAID carer. She does not receive a single penny to care for me, and yet, she does it without question or complaint.

To whoever is reading this, please acknowledge the country’s thousands of unseen, undervalued, unpaid carers. Let’s raise awareness of the situation and show them some care, support and gratitude!

Those who work regular 9-5 jobs get to come home at the end of the day and relax. For family carers, the work never ends. It is relentless, grueling, and it impacts their lives as well as their mental and physical health.

Something has to change!

Muscular Dystrophy & Mental Health | Personal Strategies

My previous blog post touched on the topic of mental health and physical disability.

In response, a few people asked how I manage my mental health:

What exacerbates it, and what strategies I use to alleviate the symptoms ~

Although I dislike using the term ‘depression’ in reference to myself, it is something I suffer from, as, I believe, we all do to some degree and at some stage in our lives.

My bouts of depression are very much situational ~

I am a 32 year-old woman with a rare, progressive form of congenital muscular dystrophy. I am a non-ambulatory powered wheelchair-user, and I currently live with my parents in their home (not through choice).

How Depression Affects Me:

I withdraw, avoid social interaction, lose interest, lack motivation, procrastinate, overthink, overreact, become defensive, eat less, lose weight, neglect myself, don’t care what I wear or how I look, mood swings, sleep more, insomnia, chronic fatigue.

*DISCLAIMER: The information here is based solely on my personal experiences and circumstances. I am NOT in any way seeking to provide medical advice or instruction.

What I Do Find Helpful:

  • Saying no: As hard as this can be, it is sometimes essential for both my physical and mental health. It’s also important for me to acknowledge that I am not responsible for how others react. If I’m unable to attend an event or social gathering and others take this personally, that’s ultimately their issue, not mine.
  • Being selective about who I spend my time with: Age and life experience has made me review and evaluate the people in my life – who adds value and who doesn’t. Who are the “no matter what” friends? It may sound harsh, but I’ve learned it’s not only okay, but necessary to distance myself from certain people. It’s easy to find friends when you’re young, fit, healthy and carefree. But when times are REALLY tough, that is when you realise who and what matters most.
  • Listening to music (through earphones): A form of escapism, allowing me to block out the rest of the world and any unwanted distractions.
  • Getting out of the house: It can be anywhere, doing anything or nothing. Sometimes I just sit by the river and stare. Other times I like to venture out in the car, though for me, this means relying on someone to drive me around.
  • Express: Sometimes I lock myself away and cry, other times I sit all day in total silence. I would say, do what you need to; scream, shout, talk it through. Whatever works for you.
  • Do what you love: However small or insignificant it may seem, I try to do something, every day, just for me. It could be as simple as listening to my favourite song on repeat, writing, sketching, reading, watching TV or YouTube.
  • Self care: When I’m feeling low and I can’t be arsed with skin care, presentable attire or brushing my hair, I just spray myself, liberally, with my most expensive perfume. Granted, I’ll still feel like crap, but at least I smell great. It’s a small comfort requiring no effort.

What I Don’t Find Helpful:

  • Unsolicited advice: Superficial comments such as, “stay positive”, “get better soon”, “it could be worse”, and, “take some multivitamins” – This is neither helpful nor constructive.
  • Talking when not ready: We are often encouraged to talk and share our troubles. And, while I totally agree that it is ‘good to talk’, and we shouldn’t feel like we have to keep our thoughts, feelings and concerns to ourselves, I also think it should be on our terms. We are all different. Some people find great comfort in talking, while others don’t. I, personally, am the latter.

Muscular Dystrophy & Mental Health

Sunday 10th October 2021 ~ World Mental Health Day

It’s now officially autumn in the UK, and so the days are becoming shorter, cooler and darker.

For many of us, the cold weather and lack of sunlight negatively affects our mood (Seasonal Affective Disorder).

This impacts some people much more than others, and of course, it is only one factor that contributes to the state of our mental health.

I believe we all experience some level and form of depression throughout our lives, and for very different reasons.

We’re advised to explore the outdoors, take walks in nature, and get regular physical exercise to improve cognitive function and release endorphins . But for those of us with physical disabilities, this isn’t always possible.

As a powered wheelchair-user with congenital muscular dystrophy, I can’t go running, walking, swimming, cycling or to the gym.

Me, in my powered wheelchair

Though essential, my physiotherapy sessions came to an abrupt stop, many years ago, at the age of 14. Accessing services as a physically disabled adult is beyond challenging!

Furthermore, some with disabilities, impaired immunity and chronic illnesses are continuing to shield, and therefore cannot safely access the outdoors.

Some are completely isolated, don’t have a garden and cannot drive. Others are suffocated by the constant presence of carers and those they live with, unable to escape the confines of home.

It’s surprising how lonely you can feel in a crowded room.

So, what do WE do? How can WE support and improve our mental health?

There is no straightforward answer, (sorry about that!), as we’re all different, and facing our own battles.

I, personally, get very frustrated with life, my limitations, the lack of assistance, understanding and empathy. It does often feel like physically disabled people are disregarded from society and forgotten about.

But we feel, we need, we want, we deserve, we matter.

Related Blog Posts:

Physical Health & Mental Health

Living with a Rare Condition | Mental Health

What Would You Do If You Could Walk?

I lost the ability to walk 22 years ago, at the age of 1o. For me, becoming completely non-ambulant happened quite unexpectedly, over the space of a couple of weeks.

Back then, there was little to no guidance or support. I didn’t have a full diagnosis and my rather nonchalant paediatric consultant wasn’t the best!

We didn’t have the Internet or social media to research and connect with others living with muscular dystrophy. And, until I reached adulthood, I didn’t know of anyone else with the same condition.

It was difficult enough leaving behind my group of primary school friends and moving on to a different middle school. I felt very lonely and was struggling to integrate, when came the added pressure of immobility.

Attending mainstream school, I was the only one with a disability amongst hundreds of physically fit, healthy, happy kids. My family and I were very much in the dark and going it alone.

Prior to this, I could only ever walk short distances – around school and home, but never steps or stairs. Then, at age 10, I suddenly found myself unable to stay on my feet, constantly covered in cuts and bruises from falling, and I didn’t know why.

Me, aged 5, in my primary school uniform

I was referred to a counsellor, but met with them no more than 3 times, as I found it utterly pointless. How was talking with a complete stranger holding a clipboard going to help me? I couldn’t walk anymore and that was that. Get on with it, Carrie.

Yes, I was stubborn and sceptical even as a child!

Me, aged 15

People often ask me if I miss it – walking. In all honesty, I tend to fob them off with a half-hearted response; “nah, not really. Moving on…”

But the truth is, my life could and would be so very different if I could walk.

I recently asked my fellow wheelies, on Instagram, what they would do if they were able to walk…

Some of these answers really made me laugh, while others are more thought-provoking.

What would I do? Run! You wouldn’t see me for dust, mate!

Me, aged 3

Muscular Dystrophy | Life with Carers

Living with a physical disability, as I do, often means dealing with carers. Believe me, this is not a lifestyle choice! It is a necessity.

I’m a very private person who enjoys their own company, hates relying on others, and I cannot do small talk to save my life!

The last thing I want is to do each morning is slap on a happy face and engage in polite conversation with carers, as I’m still half asleep and reluctant to leave my comfy bed.

Some days, it takes everything I have to not call out, “would you kindly buggar off and let me be!”.

Not that I’m ungrateful for the support they provide (no, really). Without them, I would quite literally be stuck – unable to get in or out of bed. They enable me to live my life.

Of course, this isn’t without issue.

I employ my own part-time carers, funded by Direct Payments. Consequently, I am responsible for hiring, firing, training, insuring, managing and paying my employees. This can, at times, be somewhat testing.

I never wanted to be an employer, in any capacity. But as previously stated, this isn’t a lifestyle choice. I NEED carers. Agencies are, well, far from ideal. And so, this is my only option.

As with most things in life, carers come and go. Some leave after a few months, while others stick around for years. Either way, the process of finding new employees, who are both capable and reliable, is always stressful.

Imagine, if you will, routinely inviting strangers into your home, to observe you in your most vulnerable state – first thing in the morning; naked, dribbly, grouchy, with whiffy armpits, stubbly legs and a head of hair like Tina Turner’s!

A black and white image of Tina Turner, with big hair
Tina Turner

Sadly, I don’t look quite as graceful as Cinderella on waking!

Disney's Cinderella waking up

You then have to instruct, explain and demonstrate your personal care routine, entrusting your safety to this stranger.

Sounds fun, huh!?

It’s not. At all. And I loathe it. But this is an essential part of my life with a physical disability.

It is, therefore, all the more reassuring when someone comes along who instantly puts you at ease, makes you laugh, talks (but doesn’t babble), and actually wants to work. This isn’t easy to find!

It’s early days with my latest newbie, but after a somewhat turbulent couple of months (care-wise), it is a huge relief.

Always nice to close on a positive note, eh folks.

A Year Offline | Sept 2020 – 21

My last post was the first after a year’s absence!

So, what have I been doing in that time?

  • Well, I dyed my hair – wild, I know
From blonde (above) to brunette-ish (below)
  • Went even wilder and got filler + botox…
Making a dick of myself with a filtered selfie

…No, not really!! 😂

  • Embraced fluffy socks to hide my corpse feet (even when leaving the house!)
Me, sat in my powered wheelchair, wearing comfy fluffy socks
  • Accidently drove my wheelchair into the bathroom sink, bashing my knee – ouch!
Me and my bloody knee!
Me and my bloody knee!
  • Redecorated my bedroom and deliberated for too long over duvet covers
  • Failed at knitting so took up crochet
  • Started learning French through Duolingo. In my opinion, so much easier than lessons at school! Although, to be fair, I did spend most of my time staring out of the window
  • Learned to play pool…online…sorta…
  • Went to my first ever supercar festShelsley Walsh Hill Climb. I’ll be honest, I haven’t a clue about cars but it was a fun day and something different
Shelsley Walsh Hill Climb – Supercar Fest
Me, sitting in my powered wheelchair (held together by tape!), watching the hill climb at Supercar Fest
Supercar Fest – August 2021
  • A particular highlight was our accessible canal boat ride through the prehistoric Dudley tunnels, mined during the Industrial Revolution. We got soaked (from the rain; we didn’t fall in the canal), and I ended up looking like Alice Cooper with mascara running down my face. But it was memorable!
The Black Country Living Museum
Our accessible canal boat
Dudley canal and tunnels

Despite restrictions, I’ve managed to get out and about a fair bit – Roaming around aimlessly in the car, wandering along accessible forest trails, casually entering a local arboretum without paying, and even attempting the Malvern Hills!

Our view from Black Hill, Malvern

Taking on the great outdoors is definitely challenging in a powered wheelchair, and it’s been met with limited success. But, for me, it’s not what you do but who you do it with.

Grabbing a Tesco meal deal with someone you love ♥ is (to me) far more precious than partying with a room full of semi-drunk acquaintances.

(Photo credits: All media copyright CarrieA & JV)

Long Time Gone

It’s been a whole year since I last blogged!

Did you miss me? No, I wouldn’t either!

This wasn’t a conscious decision at all. I simply don’t believe in churning out meaningless content purely for the sake of it, so felt it best to wait.

A lot has happened over the past 12 months, both good and bad…

Of course, we’ve endured lockdown and are continuing to feel the effects of Covid, with many disabled and chronically ill people still shielding.

To protect myself and others, I received the Astra Zeneca vaccine back in March – Woop!

While this offers a lot of relief and reassurance, it is important to remain considerate of the many thousands, like me, who are high risk.

Covid isn’t going away, but neither are we! Disabled people are very much a part of society and we should not be ignored or disregarded.

To further protect myself through the harsh winter months, I’ll be getting the Flu jab at the end of September – A thoroughly beneficial prick! I urge you all to do the same, if possible.


On a personal note, we sadly lost my Nan back in January. A tough old bird ‘til the end, she made it to 94, despite smoking forty-a-day, from the age of 12-70!

I will miss her endlessly engaging, witty stories.

My Nan and I, around 30 years ago

We recently gathered as a family to scatter her ashes alongside Stourbridge canal. Despite the occasion, it was actually a really lovely day.

My 4 year-old nephew was an absolute star, “helping to push” me, in my powered wheelchair, the entire way along the bumpy canal path. That kid keeps me going – literally!

My 4 year-old nephew, wearing my sunglasses, during our family gathering

Accompanying us was the newest addition to the family, my gorgeous niece, baby Sophie, born in June. A funky-haired little ray of sunshine.

Me and my niece, baby Sophie, in June 2021

Next month, I’ll be glamming up to attend the wedding of one of my best friends. Having known each other for over 20 years, I’m excited and proud to see her walk down the aisle.

I will attempt to take photos on the big day, but make no promises. I may be distracted by cocktails! Pray there be cocktails…

Beyond that, my plan is to fully embrace the approaching crisp autumn days and cosy nights with hot chocolates, candles and cuddly blankets. Yes, I’m old. Do I care? Naaaaaah!

Oh, this year, I also discovered I really dislike figs! They have the strangest texture. Much like chewing on the sand smothered sandwiches my mum used to make for us to eat on the beach as kids. Mmm, gritty!