“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

Accessing Cornwall | Summer Holiday

Godrevy, Cornwall. Photo taken by Carrie Aimes

My summer kicked off back in June with a holiday to sunny Cornwall, and I’m still longing for those soothing sea views.

Living in the landlocked midlands, as I do, situates us far from the coast. So, for me, a trip to the seaside is a real treat.

I stayed in the biggest accessible room I’ve ever seen at a Premier Inn, located in Camborne.

There was enough space to have a party, and the disabled facilities were well-considered. I would highly recommend this particular hotel for wheelchair-users who require multiple carers and mobility equipment, due to the expansive floor area.

Whilst in Cornwall, I spent my days being chauffeured around by a good friend who lives locally. What a lovely obliging boy he is!

In all seriousness, it was great to get away and spend time with one of the few people I can completely relax and be myself with.

The first three days were gloriously hot and sunny, which allowed us to explore Godrevy, Polly Joke poppy fields, Lands End and Penzance.

Godrevy
Polly Joke poppy fields
Polly Joke poppy fields
At Land’s End

On the Friday night, we had a mate date in Falmouth where a lively sea shanty festival was taking place. I chucked pizza at myself (unintentionally) and stained my lovely lovely dress. Standard.

We briefly met up with a group of people, one of whom instantly recognised my midlands dialect, which amused me somewhat since I didn’t think I had an identifiable accent. Apparently I do!

She and I talked about how different the Cornish lifestyle is. And it’s true. People seem friendlier, happier and more patient. The pace of life is slower and calmer, and the area itself couldn’t be more of a contrast to what I’m familiar with. It’s a place you move to, not from. Idyllic!

Looking out to sea, Penzance – Following our visit to Land’s End
Posing in Penzance, Cornwall

On the weekend, the weather took a turn for the worse, along with my health. For no obvious reason, my chest played up on the Saturday, and so we chilled at Ross’s place all day – the most immaculate abode I ever did see. Ralphus (the dog) tried to cheer me up by licking my entire face rather enthusiastically. I have to say, it was the best snog I’ve had in a while!

By Sunday, I was feeling much better, so we drove to Newquay with the intention of visiting the aquarium. However, once parked up, we encountered a rather unfortunate wheelchair malfunction. After laughing inappropriately, I grabbed a somewhat confused passer-by for assistance, before making our way home, without saying hello to the aquarium fishies.

Next time, fishies. Next time!

Though sad to leave, it was a much-needed positive start to the summer after a tricky few months.

Cornwall, thanks for the memories. I’ll be seeing ya! ♥

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

Storytime | Life Lessons ♿

Years ago, during a university art class, a fellow student sat idly, pissing and moaning about how awful and unfair his life was. (He wasn’t literally pissing, by the way. That would be odd!).

There, in my powered wheelchair, with teeth clenched, I chose to remain quiet while he complained about his superficial, so-called ‘problems’.

As I recall, he’d depleted the bank of mum and dad on nights out and booze, meaning he couldn’t afford to go clubbing again that week.

Oh dear, what an awful shame!

A lad opposite, who I didn’t know well, kept looking at me with a shared expression of annoyance – I remember it vividly. He finally interrupted,you know what mate, we’ve all got problems! Maybe look around sometime.

I couldn’t help but smile and offer a nod of respect.

I was 20 at the time. Now 33, my tolerance for ignorance and entitlement has dissipated with age.

Truth is, everyone, at some point in life, will encounter problems, challenges and setbacks. Indeed, we all feel stressed and depressed from time to time – these feelings are completely valid.

Of course, feeling depressed is NOT the same as suffering from depression itself. (That’s a whole other topic, which I won’t go into here).

I’m sure we’ve all been told, others have it worse off. While I find this phrase unhelpful and somewhat dismissive, I must concede, it is often true (sorry, not sorry!).

Not to undermine anyone’s struggles or experiences, I do think it’s fair to say that the problems of some people are far greater than those of others – to gain a little perspective, all you need to do is switch on the news!

Admittedly, over the years, I’ve allowed myself to indulge in moments of self-pity (not an attractive trait). The dark pit of despair is easy to fall into, and difficult to climb out of.

That said, I’ve never sulked or felt sorry for myself over what I consider petty complaints, such as missing out on a social gathering or event. Honestly, I’ve no time or patience for that sort of nonsense. Again, it’s about perspective.

For context, I live with a very rare, progressive, muscle-wasting condition (Ullrich congenital muscular dystrophy). Unable to weight-bear, I use a powered wheelchair and rely on carers to assist with physical activities. In addition, associated health issues affect everyday life.

On my darkest days, I would ask – Why me? What have I done to deserve this crap?

Funnily enough, no higher power ever answered. Which later lead me to ask – Why not me? What makes me so special?

Shit happens! And yes, some of us face more than our fair share of it. But like it or not, we must learn to accept, adapt and deal with it – limitation, loss, grief, disability, pain, trauma, illness…

What’s the alternative? Hide under the duvet covers and wallow? Trust me, that sort of self-destructive behaviour can only create further problems.

If I’ve learnt anything, it’s that life isn’t fair.

I continue to battle with frustration due to my health, physical limitations and circumstances over which I have no control. So, I now try my best to practice gratitude and remind myself of all the good things I am blessed with. I don’t always succeed, but I try.

I also find it hugely beneficial to avoid self-indulgent doombrains like the aforementioned art student!

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.

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 | Personal Strategies

My previous blog post touched on the topic of mental health and physical disability.

In response, a few people asked how I manage my mental health:

What exacerbates it, and what strategies I use to alleviate the symptoms ~

Although I dislike using the term ‘depression’ in reference to myself, it is something I suffer from, as, I believe, we all do to some degree and at some stage in our lives.

My bouts of depression are very much situational ~

I am a 32 year-old woman with a rare, progressive form of congenital muscular dystrophy. I am a non-ambulatory powered wheelchair-user, and I currently live with my parents in their home (not through choice).

How Depression Affects Me:

I withdraw, avoid social interaction, lose interest, lack motivation, procrastinate, overthink, overreact, become defensive, eat less, lose weight, neglect myself, don’t care what I wear or how I look, mood swings, sleep more, insomnia, chronic fatigue.

*DISCLAIMER: The information here is based solely on my personal experiences and circumstances. I am NOT in any way seeking to provide medical advice or instruction.

What I Do Find Helpful:

  • Saying no: As hard as this can be, it is sometimes essential for both my physical and mental health. It’s also important for me to acknowledge that I am not responsible for how others react. If I’m unable to attend an event or social gathering and others take this personally, that’s ultimately their issue, not mine.
  • Being selective about who I spend my time with: Age and life experience has made me review and evaluate the people in my life – who adds value and who doesn’t. Who are the “no matter what” friends? It may sound harsh, but I’ve learned it’s not only okay, but necessary to distance myself from certain people. It’s easy to find friends when you’re young, fit, healthy and carefree. But when times are REALLY tough, that is when you realise who and what matters most.
  • Listening to music (through earphones): A form of escapism, allowing me to block out the rest of the world and any unwanted distractions.
  • Getting out of the house: It can be anywhere, doing anything or nothing. Sometimes I just sit by the river and stare. Other times I like to venture out in the car, though for me, this means relying on someone to drive me around.
  • Express: Sometimes I lock myself away and cry, other times I sit all day in total silence. I would say, do what you need to; scream, shout, talk it through. Whatever works for you.
  • Do what you love: However small or insignificant it may seem, I try to do something, every day, just for me. It could be as simple as listening to my favourite song on repeat, writing, sketching, reading, watching TV or YouTube.
  • Self care: When I’m feeling low and I can’t be arsed with skin care, presentable attire or brushing my hair, I just spray myself, liberally, with my most expensive perfume. Granted, I’ll still feel like crap, but at least I smell great. It’s a small comfort requiring no effort.

What I Don’t Find Helpful:

  • Unsolicited advice: Superficial comments such as, “stay positive”, “get better soon”, “it could be worse”, and, “take some multivitamins” – This is neither helpful nor constructive.
  • Talking when not ready: We are often encouraged to talk and share our troubles. And, while I totally agree that it is ‘good to talk’, and we shouldn’t feel like we have to keep our thoughts, feelings and concerns to ourselves, I also think it should be on our terms. We are all different. Some people find great comfort in talking, while others don’t. I, personally, am the latter.