Shielding – Disability & Lifestyle Blog

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.

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.

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.

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.

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.

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.

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.

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. ~

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]

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]

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.

Tag: Shielding