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.
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.
Muscular Dystrophy is an umbrella term for a group of muscle diseases.
There are nine forms (see image above), which then divide into many more sub-types.
The various forms of MD differ significantly in which areas of the body are affected, severity, rate of progression, and the age of onset.
Some are born with the condition, while others do not display symptoms until adulthood.
2. What causes it?
A faulty or mutated gene. It is therefore, a genetically inherited condition.
If one or both parents have the mutated gene that causes MD, it can be passed on to their children. However, this doesn’t necessarily mean the children will have the condition. But they may be carriers.
I have a rare form of congenital (from birth) MD, which is an autosomal recessive disorder, meaning you inherit two mutated genes, one from each parent – as shown in the image below.
I am the only known member of my family to be affected by muscular dystrophy. My unaffected parents (both carriers) had never heard of the condition, and so, it was a huge shock to receive my diagnosis at the age of 4.
3. What form do you have and how does it differ from other types of muscular dystrophy?
I have a rare form of congenital (from birth) MD, called Ullrich.
I have severe contractures in all of my joints (knees, hips, elbows, wrists), and a severe scoliosis (curved spine). As a result, my balance is very poor.
UCMD affects my respiratory function. 7 years ago it became necessary for me to use a BiPAP machine (non-invasive ventilation) nocturnally.
For me, a common cold can very quickly develop into a serious respiratory illness, such as pneumonia (which I’ve had numerous times).
I experience chronic fatigue due to the progressive muscle-wasting and my squashed torso, which prevents expanditure of my lungs.
I try to live as “normal” a life as possible, having attended university and learnt to drive (though this is no longer possible as my condition has deteriorated).
8. Pros and Cons of living with UCMD?
The cons of my condition are mostly listed in the previous answer. The most bothersome of these are the respiratory decline and chronic fatigue.
You might think being unable to walk would be the most frustrating thing. And while I do wish I could walk, jump and run, this has never really bothered me all that much. It is what it is, and you learn to adapt.
The pros I would say, include the network of people I have in my life, people I wouldn’t know if it weren’t for my condition.
I have made some amazing friends through blogging and living with muscular dystrophy. For this, I feel incredibly fortunate and thankful.
Other pros include my Motability WAV (wheelchair accessible vehicle), blue badge for free parking, and being able to skip to the front of the queue at tourist attractions!
9. Has it changed/got worse over time?
Yes, my condition is progressive and life-limiting. My symptoms have got worse over time.
The term life-limiting can, understandably, be scary for many to hear. While I don’t expect to live to be old and wrinkly, I have no plans to pop-off anytime soon!
After all, if you’re a smoker you are limiting your life expectancy!
As a child, I could walk short distances wearing custom-made leg splints.
Joint contractures and the severity of my scoliosis has increased.
My lung function is significantly worse as an adult.
10. What are some of the common misconceptions?
There are many! Here are just a few assumptions…
I have family members with the same condition (I don’t).
I can’t have children.
I can’t have sex or a loving relationship (some even assume I wouldn’t want to).
Many assume I can walk, even when I try to explain I am completely non-ambulant.
People think I take lots of pills and potions – if only there was a miracle cure! I’d take it in a heartbeat.
For more examples, check out this blog post I wrote all about societal preconceptions related to being a wheelchair-user.
Though we all must now adapt and change our way of life somewhat, it’s important to remember this is only temporary. Things will improve.
I’ve heard people complain about the restrictions; mostly young, fit, able-bodied people. Yes, it’s a pain in the fat ass! But it isn’t forever.
Also, please be aware that many disabled and chronically ill people are repeatedly forced into prolonged periods of self-isolation throughout their lives. Plans are often cancelled last minute due to poor health. This isn’t new to them.
So, before you complain because you can’t go out partying with your mates, or to the pub, please consider those for whom limitation and isolation is a way of life.
Show your thanks and appreciation for the NHS and those working in health and social care.
Be mindful of the most vulnerable in society, and help out if you’re able to.
Please don’t panic buy or stock pile. This isn’t the apocalypse, people!
As a non-ambulatory wheelchair-user for the past two decades, I’ve experienced many frustrating encounters with lifts/elevators.
~ Being unable to fit inside because they’re occupied by physically fit (lazy, ignorant) able-bodied people
~ Getting stuck in them (once on a very old ferry!)
~ Getting stuck out of them (broken/out of service)
~ Waiting, waiting, waiting…
As a teenager, I went shopping to my local TJ Hughes store (super cool!), which was on three floors. It was a crappy old lift but nevertheless I travelled to the top floor because, well, I wanted to!
When I came to use the lift again, it wouldn’t work – it was completely unresponsive.
Unable to walk at all, I was stranded on the third floor in my manual wheelchair.
More than a little irritated, I started hammering the call button on this lift, “you WILL bloody work!!”
At this point, I was left with no other option than to be manually carried down two flights of stairs by a member of staff. Talk about awkward!
Well, it was either that or, frankly, I’d probably still be stuck there now.
Thankfully, I’m teeny tiny, my wheelchair was lightweight and foldable, and the guy who carried me was young and smelt amazing! I was tempted to ask what he was wearing but thought better of it. I’m not that weird…
It was fortunate that I wasn’t in my current powered wheelchair. If I had been, I honestly don’t know what would have happened…forever stranded in TJ Hughes!
It’s a memory that’s imprinted on my mind. It shouldn’t have happened, it was annoying, undignified, embarrassing and yes, at the time, I was thoroughly pissed off!
Although, on reflection, it is pretty funny. Got to laugh, right!
Of course, it made me wary of using lifts in the future. But I really don’t have a choice! I’m not going to avoid them and miss out just in case something bad happens.
It’s inconvenient at the time but always resolvable.
IF I do ever get stuck again, well, then I’ll worry about it…IF.
Side note ~ If you are fit and able, and have two fully-functioning legs, please use them! Kindly take the stairs and let those in need access the lifts/elevators. Ta muchly!
I cannot fault their customer service or the assessor who bought a number of demo chairs to my home to try prior to purchase. He was very knowledgeable, patient and not at all pushy (as some sales rep’s can be).
However, I find the quality of the armrest pads to be extremely poor.
As you will see from the image below, to replace them will cost an additional £83.40 – a rather hefty sum to replace an item on a relatively new powered wheelchair!
I am reluctant to pay the £83.40 to replace the armrest pads, particularly as they are likely to disintegrate again within a few months. In the meantime, I am left with an unsightly product that is literally falling to pieces.
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.
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.
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!
People who know me well often describe me as incredibly private and somewhat closed-off. They’re not wrong. But I have my reasons. That said, I’ve been trying to open up a little more and share a closer insight into my everyday life in recent blog posts.
For me, 2019 really has been a year of major highs and lows.
The summer was genuinely the happiest time of my life. Everyone noticed.
Now, I’m the type to roll their eyes at the mention of people “glowing with happiness”, sceptical old bint that I am, but apparently it is a thing.
I was kinda hoping it would last longer than it did. But hey, that’s life.
Soon after my birthday came a swift punch in the gut (not literally, fear not!) and that marked the beginning of one of the unhappiest periods of my life. These things come to try us!
I’m not going to lie, this past month has been pretty crap.
Yeah, Christmas is a time to celebrate, have fun and be with those you love most. But it can also emphasise and remind you of what you’ve lost. And who you’ve lost.
I have some amazing people around me – family and friends. Thanks to those of you who patiently put up with me being a miserable fecker!
Some have offered wise words and advice, some have made me laugh when I really needed to, and others have simply been there to listen. You lot are what life is about (Ooh, deep!).
Let’s get this year out of the way and I promise, in 2020, I’ll pick myself up and get back to “the old Carol” ~ generally pratting about, laughing at inappropriate things and maybe even smiling occasionally 😱
A final word for anyone struggling for whatever reason…
I don’t want to get too serious. After all, it is Christmas – oh, joy!
Life ain’t all shits and giggles. I really wish it was. But it just isn’t.
Sometimes life gives you lemons (bastard lemons!) So what you gonna do? Throw ‘em back even harder, I say.
I may be pixie-sized but I’m pretty damn defiant. I’ve faced a fair few battles over the years. Truth is, the battle never really ends. But you gotta trudge through. What’s the alternative?
When I was 8 or 9, I fell off a horse. The horse decided she’d had enough of this trotting bullshit, and wanted to play silly buggars. She bolted downhill then stopped abruptly, throwing me forward.
I landed with my arse in a muddy puddle and lost my bloody boot. Yeah, I was a bit shook up. But I could either sit in that puddle and sulk (well, I couldn’t get up and walk off!) or get back in the saddle. So, I got back on psycho Sally!
Point is, life can be a bitch, but you gotta carry on and you gotta help yourself. Find what makes you happy and go for it!
I have a few things lined up for the new year, including some truly thrilling blog posts (I can sense the excitement already!).
Merry Christmas, folks. Take care! See you in the new year.
I was born with a rare form of muscular dystrophy, affecting my body and physicality. I have a severe scoliosis (curvature of the spine) which, for various reasons, is not surgically corrected. This causes asymmetry and a shortened torso. Joint contractures mean I am unable to stretch out my arms or legs. Furthermore, the muscle wasting nature of my condition results in extremely thin limbs.
Now 31, I look very different from other women my age. My pixie-sized stature is emphasised by the scoliosis. In place of womanly curves, are unwanted and abnormally crooked humps and bumps. This visible contrast negatively impacts my sense of self and makes me feel odd, weird, and self-conscious.
I love fashion but fashion doesn’t love me
Over the years, I have desperately sought to hide my body with shapeless, baggy clothes. Anything resembling a potato sack is a winner. I live in leggings because jeans are a no-go and frankly, they are the next best thing to pyjamas!
Clothing manufacturers don’t cater for my body since it doesn’t meet standard criteria. Shopping is not an enjoyable experience. It is a frustrating and disappointing struggle to find anything at all to fit, let alone look flattering. Most of the clothes I buy have to be returned which makes me wonder why I bother at all – well, simply because I can’t roll about naked!
Accepting my unique body
Do I love, embrace and celebrate my unique body shape? Hell, no! BUT – I have slowly and gradually learnt to accept it. After all, there’s absolutely nothing I can do to change it. So why stress myself out over something I cannot control.
Exercise isn’t an option for me. I can’t go to the gym and buff-up. And why should I resort to cosmetic surgery? Why put myself through pain, trauma and financial strain simply to conform to societies high and unrealistic standards of beauty? Okay, it might make me feel more confident to look a little more like the average woman. Then again, it might not…
Societal standards of body beautiful
Our perception of body image and beauty is arguably increasingly influenced by social media, particularly Instagram. Heavily airbrushed, edited and filtered selfies are everywhere to be seen. With a smartphone, we can all look like a celeb from a magazine spread!
But this is misleading, unrealistic and unattainable. I can’t relate to the pouty, posers of Instagram. Honestly, can anyone?!
Diverse bodies are sadly under-represented in the media. This is starting to improve but there is still a long way to go before the presence of disabled bodies on our screens becomes mainstream.