“Why Would Anyone Want Me?” | Life With Disability & Chronic Illness

A photo of me, a young white female with long brown hair and blue eyes. I am seen from the shoulders up and I am looking straight ahead. I am not smiling
Me, aged 33

“I can’t see why anyone would want me”

As a disabled blogger, this is by far the most common message I receive from readers and followers – particularly those in their twenties, living with disabilities and chronic illness.

For anyone out there who has ever felt this way, I get it. I hear you!

Born in 1988 with a rare progressive condition (Ullrich congenital muscular dystrophy), I’ve personally struggled with various insecurities and a lack of self-worth my whole life.

For me, the belief that “no one would ever want me” was fuelled by cruel comments, ignorance and exclusion.

Growing up, I felt invisible, unseen, overlooked, and yet, painfully inescapably obvious to all. I wanted to hide away, and, at the same time, longed for someone to notice me. To see me, the person beyond the disability.

A photo of me, aged 15, with blonde hair and sad, sallow eyes. I'm looking straight at the camera. I have my hand to my mouth.
Me, aged 15

I was one of only two disabled students at a mainstream high school, surrounded by 700 able-bodied kids. I stuck out like a sore thumb! I was the anomaly. And, I was ever-aware of it.

Seated in my manual wheelchair, unable to transfer, weight-bear or self-propel, completely reliant on others for mobility, I felt helpless, useless, a burden.

At 13, during the month of May, I was admitted to hospital with pneumonia. One of many bouts throughout my life. I didn’t tell anyone at school. No one noticed my absence. No one asked. It seemed, no one cared.

Experiences such as this further exacerbated my introversion, isolation, my mistrust in others and the overwhelming thought that I was better off alone. You can only really rely on yourself, right?

My health has always been, for lack of a better word, crap! Deteriorating with the progression of time. It is an incredibly limiting factor. So too is relying on carers. I can’t get myself in or out of bed, I can’t dress or undress myself, I can’t drive, or work. What do I bring to the table?

Me, aged approx 30, sat in a hospital waiting room wearing a face mask
Me, aged approx 30, sat in a hospital waiting room wearing a face mask

Spontaneity, what’s that? Everywhere I go, everything I do must be pre-planned. And often, those plans fall through when my chronic fatigue forbids me from leaving my bed for the entire day.

It’s no fun! It’s beyond frustrating and bloody miserable at times.

Why would anyone choose this life? Why would anyone choose to be with me? What can I offer?

I’ll be honest with you, these questions continue to plague my thoughts every now and then. Like a lingering grey cloud that will never pass by entirely.

A selfie of me, looking in the mirror, seated in my powered wheelchair. I have long, mid-brown hair and I'm wearing a grey cardigan and white leggings. In this photo, I am aged 33
Me, in my Sunrise You-Q Luca powered wheelchair. Aged 33

Yes, I’ve had romantic relationships. Some good, some not so good. I’ve dated both able-bodied and disabled guys.

My brief stint on dating app Hinge was an experience! Guys can be shamelessly brutal, often telling me I’m no one’s type and they wouldn’t consider dating a disabled girl. Though tough to hear, I was never surprised, nor do I bear any resentment.  Everyone has freedom of choice and can date whoever they want. I never felt any desire or inclination to convince anyone of my worth.

I won’t lie, my health issues and physical disability did present challenges, cause tension and resentment within relationships. Things were said that are forever imprinted in my memory.

The saying goes, “love is all you need”. I don’t believe this to be true. I think trust, loyalty and the ability to care for someone even in the darkest of times is arguably more important.

Love was very much present in one of my previous relationships, but deep down, I knew it wouldn’t last because I couldn’t rely on him. He was all in on the good days. But on the bad days – my bad days – it became increasingly clear that he wasn’t invested. He couldn’t cope. Love alone wasn’t enough.

A photo of me taken from behind - my face cannot be seen. I am at Whitby, looking out to the sea. I am seated in my powered wheelchair. My hair is tied up in a messy bun. In this photo, I am aged approximately 27
Me, in my Quantum powered wheelchair, aged approx 27

I don’t want to feed you empty clichés or try to convince you it will all work out in the end; that there’s someone for everyone. Because relationships are hard, even without the added complexities of a disability or chronic illness!

What I will say, what I want to emphasise to anyone reading this, is to focus on your relationship with yourself. Be kind to yourself, prioritise your health, your wants and needs. Stop worrying about what others may or may not think of you. Does it really matter?

A black and white graphic image of a male wheelchair-user kissing the hand of a female wheelchair-user

When you do meet someone who is worthy of you, (yes, we’re ALL worthy of love, affection and intimacy), don’t try to hide your struggles and insecurities. Be open, honest and real with them. Let them see you at your very worst.

Some will cut and run. You will face rejection. We all do. This is part of life. Don’t waste your tears over these people. Trust me, it’s not worth it!

It’s easy to find friends and lovers when you’re young, fit, able and care-free.

But, this is where those of us living with debilitating conditions hold the advantage (lucky us!). Because our lives are far from easy and care-free. We can trust that the people who choose to be with us, no matter what, truly do care.

Darker Days & Silver Linings

Happy Halloween, folks!

As much as I love the spooky season, I’ll be glad to see the end of October this year.

I fell ill on the first Saturday of the month, and I’m still not fully recovered.

It’s now over 4 weeks since I left the house, or saw anyone other than immediate family and carers.

For me, this isn’t unusual. Prolonged periods of chronic illness and isolation are, unfortunately, all too familiar.

A simple cold can very quickly progress into pneumonia – a frequent occurrence over the years, resulting in lengthy hospital admissions.

The vast majority of people don’t understand how I can be so ill for so long. Why would they? It’s hard to comprehend something you’ve no knowledge or experience of.

Muscular Dystrophy

This is why my primary aim is to inform and raise awareness of the rare condition, Ullrich congenital muscular dystrophy.

Most so-called medical professionals are totally clueless. It’s therefore no surprise that I’m met with blank faces when telling people about my disability.

Muscular Dystrophy? What’s that?

Explaining the ins and outs of my condition and how it affects me, can be exhausting. But it’s also important.

I’m almost 34, and, for me, the most debilitating and frustrating part of my disability is the daily fatigue and impact on my respiratory health.

As the saying goes, ‘health is wealth’.

Living with Chronic Illness

It can be incredibly difficult to remain optimistic when living with a progressive condition and chronic illness.

This past month has been tough!

Following three decades of cancelled plans, missed opportunities, and life on pause, here are a few things I’ve learnt:

1. Never make decisions when at your lowest.

2. Try not to withdraw or push people away. Knowing I’m unable to commit to plans, it can be easier to distance myself from people to avoid letting them down.

3. Reach out to loved ones.

4. Find joy in simple things.

5. Don’t waste valuable time, energy and effort on that which doesn’t serve you.

6. Set goals and make plans!

7. Focus on what and who matters most to you.

Guest Post | How Mobility Aids Improve Independence

    AX2 Powerchairs
More than 20% of working age adults in the UK live with some form of disability, including almost half of over 65s. That’s about 14 million people. Human beings are resilient creatures, and many surprise themselves with their adaptability.
For many, the bigger challenge is a psychological one. Whether aged 20 or 90, it can be frustrating to rely on others to carry out the daily activities you once took for granted.
Mobility aids have existed for centuries, but, in recent years, technological innovations have made it possible for those living with any degree of immobility to enjoy freedom and independence on their own terms. Such aids also take some of the pressure off family members, who can rest assured that their loved ones are able to live as they wish without worrying that they are putting themselves in danger or struggling to cope.
Bespoke Powerchairs
Incredibly, the first wheelchairs are believed to have been invented in around 600BC. Stone carvings originating in both China and Greece clearly show people conveyed on wheeled devices.
Wheelchairs have evolved with the times, but the biggest breakthrough in terms of boosting independence was the introduction of powered chairs in the late 20th century.
Powered wheelchairs evolved rapidly over the past couple of years. AXUS powerchairs provide a great example of the advanced mobility technology that is now available in 2022. These are a far cry from the chairs that were available even a decade ago in terms of comfort, practicality and performance.
AXUS has developed five models of powerchair, all of which use the latest battery technology and power-efficient motors to offer a range of more than 20 miles on a single charge.
AX3 Compact Powerchair
There is something to suit everyone. For example, the ultra-compact AX3 is just 50cm wide with a mid-wheel configuration that allows it to turn on the spot! It means effortless mobility even in a small house or flat where space is at a premium.
AX5 Powerchair
The AX5, on the other hand, has a high-power motor and specially designed suspension that can handle uneven terrain. Ideal for outdoor adventurers who want to spend time in nature without the need for a friend or carer in attendance.
Each model can be further customised in various ways, such as colour, seat width and extra features. AXUS offer home consultations as standard to help customers make the right choice.

Traditional Manual Mobility Aids

Powerchairs are highly versatile, helping users remain independent around the house, at work, whilst shopping and enjoying leisure pursuits. However, powerchairs represent just one of a range of mobility aids that can give you the confidence you need to remain independent.
For those who can walk unaided but are a little less steady on their feet, fear of falling can be debilitating. In this case, manual aids from traditional sticks and canes to rollators provide that extra bit of support to boost confidence, as well as making walking easier and reducing the risk of falls.

Mobility Scooters

At the other end of the spectrum, mobility scooters literally go the extra mile. They are predominantly for use outdoors or in accessible indoor environments like supermarkets. Sime offer incredible performance and features, especially those designed for both road and pavement use. With a maximum speed of 8mph and a range of more than 30 miles, the world really can be your oyster.
Other mobility scooters, known as travel scooters, have more modest performance credentials but can be easily separated in into four or five lightweight parts without the need for tools. They are designed for easy transportation by car, train or even plane.
Limited Mobility Doesn’t Mean Limited Freedom
Reduced mobility, whether through injury, illness or disability can add extra complications and frustrations to everyday life. However, one positive aspect is that modern technology has brought us a range of mobility aids we couldn’t have even imagined a generation ago.
Make no mistake, everyone needs a helping hand sometimes, whether disabled or not. It is wonderful to have family, friends and carers to lend support. But, it is equally important to have the freedom and independence to live life on our own terms.

Mobility aids like powerchairs, rollators and scooters make this possible for millions of people, eliminating the need to rely on the support and assistance of others.

AX4 Powerchair from AXUS

This is a paid post from AXUS

www.axus.co.uk

The Last 6 Weeks | Disability Battles & Small Wins

May was a funny old month, with slightly schizophrenic weather (is it summer yet?!), and some much needed time to myself.

Since I last blogged in April, I’ve been mostly occupied with life admin and catching up with friends.

The former doesn’t sound very exciting, and it isn’t, but as anyone with a disability or chronic illness knows, there are many ongoing battles to be fought.

I met with various doctors, occupational therapists, and mobility equipment reps. I even managed to recruit a new carer, not easy in the current climate, to drive me from place to place in my Motability WAV (wheelchair accessible vehicle).

My powered wheelchair, partly held together with gaffer tape, continues to fall to pieces, and is now in need of new batteries.

Why do they suddenly decide to fail, without warning??

This is all the more challenging since it isn’t a NHS chair, and so I am responsible for sourcing and funding repairs.

Despite actively bidding online and pursuing a move for over a decade, I still live with my parents in their home – far from ideal for any 33 year-old!

Finally, after a consistent bombardment of calls and emails, community housing managers agreed to meet with me in person.

Though empathetic, they openly admitted it is very much a postcode lottery issue, (I couldn’t tell you how many times I’ve heard that excuse). Consequently, it could take years to rehouse me!

I will persevere and hope for the best, while maintaining realistic expectations.

On a happier note, May provided some space for myself, as my folks took a little staycation.

People often misunderstand my need for solitude. Then again, these people have their own homes and the freedom to do as they please, when they please. It’s about freedom of choice and being able to live life on my terms.

As tiresome and frustrating as it is, this is the reason I battle with medical professionals, OT’s, community housing, social services, and so on – for a better quality of life!

“Though she be but little, she is fierce”

~ William Shakespeare

What I’ve Been Up to Lately | Muscular Dystrophy

Following a decent run of health, things took a dive in October, with one thing after another.

Covid hit me hard and put me out of action for a good 6 weeks, which meant another November birthday spent ill and alone.

I won’t lie, it wasn’t the best of times. But I do have the best parents who, despite being in their 60s, support and care for me, no questions asked. I don’t know where I’d be without them.

My dad – a man of few words, and the best man I ever did meet – wrote a really touching message in my birthday card, which had me in tears (it was a teary few months!).

As the new year approached, I tried my best to pick myself up and get back to some kind of normal – whatever that means.

Gotta keep on keeping on, right!

2022

Firstly, I dyed my hair from the usual blonde to brunette (wild, I know).

22nd Feb: The first face-to-face appointment with my muscular dystrophy consultant since 2019.

The highlight was buying a shit load of fruit and veg from the market stall on the way out – I know how to live!

9th March: Beauty and the Beast at Birmingham Hippodrome.

The show was magical and this theatre is, by far, the best and most accessible I’ve visited.

It’s been a while since I roamed around Birmingham at 11pm – Such a rebel!

Things I’ve been enjoying

It’s a Sin – Set in London during the 80s AIDs epidemic, this 5-part miniseries has a great cast, a brilliant soundtrack (in my opinion), and the final episode is heartbreaking.

This is Going to Hurt – Having read the book by dry-witted former doctor Adam Kay, I was keen to check out this TV adaptation, and I wasn’t disappointed. It is funny, brutal, tragic and eye-opening. I highly recommend this one!

Lord of the Rings – Now 20 years old, I decided to indulge in a solo movie marathon and revisit this epic trilogy.

Samwise has always been my favourite character. And why? His loyalty is unwavering and unconditional. We all need a Samwise in our lives!

Plus, the actor, Sean Astin, starred in The Goonies (1985), and remember, “Goonies never say die”!

~ BIG 80s fan here!!

Duolingo – At the grand old age of 33, I’m attempting to learn French, (super cool), after dropping the subject in year 9, in favour of German. And this time, I’m sticking with it.

Looking forward…

Spring is now well on the way, and with that comes warmer, sunnier, happier days ahead.

Though I’m no longer able to drive, which is incredibly limiting and frustrating, I will endeavour to get out and about as much as physically possible.

June – I’m off to Cornwall to spend some time with a good friend, and, of course, to see the sea – a rarity for this landlocked Midlander.

August – I’m excited to return to the Birmingham Hippodrome to see Les Misérables (for the second time).

I love the theatre, having seen many shows over the years. It’s one of my favourite things to do.

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

Muscular Dystrophy | Life with Carers

Living with a physical disability, as I do, often means dealing with carers. Believe me, this is not a lifestyle choice! It is a necessity.

I’m a very private person who enjoys their own company, hates relying on others, and I cannot do small talk to save my life!

The last thing I want is to do each morning is slap on a happy face and engage in polite conversation with carers, as I’m still half asleep and reluctant to leave my comfy bed.

Some days, it takes everything I have to not call out, “would you kindly buggar off and let me be!”.

Not that I’m ungrateful for the support they provide (no, really). Without them, I would quite literally be stuck – unable to get in or out of bed. They enable me to live my life.

Of course, this isn’t without issue.

I employ my own part-time carers, funded by Direct Payments. Consequently, I am responsible for hiring, firing, training, insuring, managing and paying my employees. This can, at times, be somewhat testing.

I never wanted to be an employer, in any capacity. But as previously stated, this isn’t a lifestyle choice. I NEED carers. Agencies are, well, far from ideal. And so, this is my only option.

As with most things in life, carers come and go. Some leave after a few months, while others stick around for years. Either way, the process of finding new employees, who are both capable and reliable, is always stressful.

Imagine, if you will, routinely inviting strangers into your home, to observe you in your most vulnerable state – first thing in the morning; naked, dribbly, grouchy, with whiffy armpits, stubbly legs and a head of hair like Tina Turner’s!

A black and white image of Tina Turner, with big hair
Tina Turner

Sadly, I don’t look quite as graceful as Cinderella on waking!

Disney's Cinderella waking up

You then have to instruct, explain and demonstrate your personal care routine, entrusting your safety to this stranger.

Sounds fun, huh!?

It’s not. At all. And I loathe it. But this is an essential part of my life with a physical disability.

It is, therefore, all the more reassuring when someone comes along who instantly puts you at ease, makes you laugh, talks (but doesn’t babble), and actually wants to work. This isn’t easy to find!

It’s early days with my latest newbie, but after a somewhat turbulent couple of months (care-wise), it is a huge relief.

Always nice to close on a positive note, eh folks.

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”