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

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. ~

Cough & Cold Season

A Life Update | Muscular Dystrophy & Chest Infections

Once again, I’m out of action with a chest infection. Although unpleasant, this isn’t generally a concern for the average person. But for those like me who live with a neuromuscular condition (in my case, UCMD, a rare muscle-wasting disease) a chest infection is not to be taken lightly. It can develop scarily quickly and lead to more serious complications such as life-threatening pneumonia.

I have always struggled with chest infections. Every time I catch a common cold, it heads straight to my chest. As a child this necessitated a course of banana medicine (Amoxicillin), chest physio and a week off school (okay, so it wasn’t all bad).

As I have aged and my condition has deteriorated, I now find chest infections much more difficult to cope with. It can take me a month, sometimes longer to get back to any sort or normal. In the meantime, life comes to a complete standstill.

Due to the severity of my impaired lung function, I struggle to cough effectively and clear secretions, making the seemingly simple act of breathing incredibly difficult. As a result, I become totally reliant on my BiPAP machine, and find removing it for a mere 10 minutes a major challenge.

When I feel myself getting ill, I throw everything at it:

• Antibiotics
• Steroids
• Expectorants
• Nebuliser
• Respiratory physio
• Rest
• Stay hydrated and eat as much as possible for energy and sustenance
• BiPAP to support breathing

But in the end, for me, it really is a case of waiting it out and remaining as positive and defiant as possible.

Obviously, this is just my personal experience. There are many forms of muscular dystrophy, and each individual reacts and responds differently to respiratory illness. But one thing is true for all of us –

chest infections are no laughing matter!

You may often see members of the NMD community banging on about infection control and the importance of the Flu jab, and with good reason! For us, this really is a matter of life or death.

Tag: Noninvasive ventilation