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

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

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!

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!

Coronavirus UK | Still Shielding

 

This week, the UK government issued new measures to suppress the spread of Covid-19. From Monday 14th September, social gatherings will be limited to 6 people.

In all honesty, I can’t say I’m surprised at these restrictions. From my perspective, as a physically disabled shielder, it seemed inevitable.

Our government has actively encouraged people to return to work, to school, the High Street, the salon, the gym, to pubs and restaurants.

Of course, we all want a return to some sort of normality. And while it is essential we sustain our economy through supporting businesses and minimising unemployment, it would appear BoJo favours wealth over health.

Those at greater risk have been largely neglected; the elderly, disabled and those with underlying health issues.

Many, like myself, have been shielding since March. We have been isolated in our homes, watching the world go by from behind closed windows.

[Image Description: An elderly man in a care home looks out at a female relative from behind a closed window. A carer, wearing a face mask, sits beside the man]
[Image Description: An elderly man in a care home looks out at a female relative from behind a closed window. A carer, wearing a face mask, sits beside the man]
 

Some have endured months without medical support. Personal carers, though essential, pose a risk to the most vulnerable. And others are forced to leave work, since there is little to no support for disabled employees.

I am very fortunate to have been able to continue accessing my routine hospital appointments throughout lockdown.

Despite initial anxiety and fears from friends, I felt safe and protected during every one of my 6 hospital visits and 2 GP appointments since March – all thanks to our invaluable NHS.

[Image Description: Me, sitting in a hospital waiting room, wearing a face mask]
[Image Description: Me, sitting in a hospital waiting room, wearing a face mask]
 

However, after waiting almost a year for a much-needed respiratory referral, I fear my upcoming appointment may now be cancelled, due to the latest guidelines.

My discussions with various medical professionals over the past few months reveal concerns for a second lockdown around October.

With Flu season approaching, this warning poses an even greater strain and impact on the elderly, disabled and NHS.

Wench Wars | Lockdown Playlist

1, 2, 3, 4, I declare a WENCH WAR!!

My good friend and fellow wheelie wench, Lucy Hudson, and I are battling it out once again!

Here is the long-awaited sequel to our first Wench War, in which we presented our top 5 Disney villains.

Top 5 Lockdown Songs

This was a challenge!

There are soooo many songs that in some way represent life in lockdown, it was difficult to limit the list.

1. The Police, Don’t Stand So Close To Me (1980)

When all this Corona craziness hit home, people panicked. Understandably so.

Don’t touch me, don’t cough near me, don’t breathe on me, don’t look at me!! 😱

2. Queen Ft. David Bowie, Under Pressure (1981)

And so lockdown begins. Society starts to feel the pressure. People are unable to go to work, parents are home schooling, families are forced apart and the NHS is put under great strain.

3. Queen, I Want To Break Free (1984)

The days turn to weeks. We get up, we eat, we go to bed. We’ve basically adopted the dog’s lifestyle!

Everyone is bored and frustration is setting in. For those like me who are considered high risk, the four walls of home become more of a prison than a sanctuary.

4. Peter Gabriel, Don’t Give Up (1986)

Weeks turn to months. We’ve lost track of what day it is. We’re lethargic, lonely, lacking in motivation, low in mood and missing our loved ones.

When will this come to an end…?

5. Fleetwood Mac, Don’t Stop (1977)

There is finally some light at the end of the tunnel! It seems we’ve hit the peak and restrictions are slowly being lifted. We are far from the finish line but we’re holding on to hope.

“Don’t stop thinking about tomorrow
Don’t stop, it’ll soon be here
It’ll be, better than before,
Yesterday’s gone, yesterday’s gone”


Lucy’s Top 5 Lockdown Songs

Recommended Reads

Since we’re all still stuck at home, twiddling our thumbs, I thought I’d suggest some reading material for you. The six books I have chosen focus on the themes of disabilitymental health, positive thinking, overcoming adversity, trauma, and recovery.
(Left - Right) 'Defiant' by Janine Shepherd, 'Wheels of Motion' by Justin Brown and Lucy Hudson, and 'True Grit and Grace' by Amberly Lago
(Left – Right) ‘Defiant’ by Janine Shepherd, ‘Wheels of Motion’ by Justin Brown and Lucy Hudson, and ‘True Grit and Grace’ by Amberly Lago

‘Defiant’ by Janine Shepherd

A few years ago, I had the privilege of interviewing this former Olympic hopeful who beat the odds and transformed her life after suffering a horrific accident. Janine Shepherd radiates energy, enthusiasm and an endearing wit. Her memoir is a must-read!

‘Wheels of Motion’ by Justin Brown & Lucy Hudson

Some of you may know that Lucy is a good friend of mine. Like me, she is a non-ambulatory wheelchair-user with a form of muscular dystrophy. ‘Wheels of Motion’ is a poetry anthology unlike any other. If you live with a disability yourself, I highly recommend you check this out! (Available on Amazon).

‘True Grit and Grace’ by Amberly Lago

Amberly Lago is another remarkable, kind and generous woman I was able to interview following the release of her memoir, ‘True Grit and Grace: Turning Tragedy into Triumph’. Fitness fanatic, Amberly’s life was turned upside down following a debilitating motorcycle accident in 2010, leaving her with significant nerve damage and lifelong chronic pain. She now devotes her life to helping others.
(Top Left - Right) 'Things Get Better', and 'Beautiful'. (Bottom) 'Start Your Day with Katie'. All by author, Katie Piper.
(Top Left – Right) ‘Things Get Better’, and ‘Beautiful’. (Bottom) ‘Start Your Day with Katie’. All by author, Katie Piper.
Acid attack victim, Katie Piper, is now a well-known media personality, activist, documentary maker, charity founder and mother. She has achieved so much since her brutal assault in 2008, which left her partially blind and with full thickness burns. Katie has endured over 200 operations and invasive treatment to ensure her recovery. She really is a true inspiration! I read Katie’s first book, ‘Beautiful’, around eight years ago. It’s a real eye opener! Yes, it is shocking and distressing, but also incredibly motivational. I highly recommend this book to anyone and everyone.

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”