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

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

February | Love & Kindness

This month, we’ve embraced/endured Valentine’s Day, and celebrated Random Acts of Kindness Day.

Screenshot from @MDBloggersCrew Twitter feed, from Random Acts of Kindness Day.

All of this has made me think about relationships and what they really mean.

Valentine’s Day Selfies

Funny Valentine's meme

We’ve all seen couples posting impossibly idealistic, airbrushed selfies on social media, making us believe their lives together are perfect and they couldn’t want for any more in a partner.

Ha! Who are you trying to kid? (Call me cynical).

But the truth is, when you live with someone, whether it be family, friends or a partner, you will inevitably, at times, rub each other up the wrong way and fall out. To think otherwise is, frankly, naive.

They may be senseless, petty disagreements or more serious conflicts. The important thing to consider is how you react and resolve such issues.

As the saying goes, never sleep on an argument. It may seem daft, but it’s true. An unresolved argument will just fester away.

It’s Good to Talk

Some people, somewhat understandably, choose to avoid any sort of conflict and refuse to acknowledge tension within their relationships; sweeping it under the carpet. This isn’t a healthy approach.

If you have a grievance, talk about it calmly and reasonably. Share your worries and concerns with friends, family and loved ones. Don’t bottle things up. Again, it will just fester away resulting in bitterness and resentment.

It’s Really Okay to Disagree!

We can’t all be the same. If we were, life would be very boring. You don’t have to like all the same things or agree with everything those around you think and feel in order to love them. I repeat; to think otherwise is, frankly, naive.

#BeKind

Kindness isn’t agreeing when you don’t, or avoiding potentially difficult conversations just to keep the peace. Kindness isn’t pretending to enjoy things you don’t simply to please others. Kindness isn’t inflating another person’s ego to make them feel good.

Kindness within relationships is about respecting each other’s views, differences, individuality and needs. It’s accepting that we are all flawed and forgiving sincere mistakes. Kindness is about caring enough to keep each other safe, supported and grounded.

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!

The Kindness of Strangers | Wheelchair Life ♿

I was out shopping yesterday in my Quantum 600 powered wheelchair. While the many other shoppers bustled past without a second thought, one considerate old lady stopped to ask if I needed her help to reach anything.

As fellow wheelchair-users will know, shopping can be frustrating for various reasons. Not only are we grappling with the general public (the pushing, shoving and impatience), and trying to navigate narrow aisles without running over any toes; we are also bum height! 😣

Not only that – reaching anything above or below torso level is a challenge, particularly with elbow contractures and poor grip (as in my case).

With that in mind, those few kind words from one generous old lady truly made my day. It really is the little things in life – the small gestures – that make a big difference. If only everyone was so thoughtful!

I am aware that some disabled individuals may take offence at such an offer, presumably seeing it as a sign of pity – the implication being we (disabled people) cannot manage by ourselves. However, I personally cannot construe it as anything other than sincere concern and consideration for a fellow human being.

We all need help and support every once in a while, regardless of ability or circumstance. Even if you don’t require assistance from others, at least show some gratitude and have the courtesy to decline their offer politely.


#respecttotheoldies ✌💗

#MuscularDystrophy

#WheelchairLife ♿


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