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.
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?
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.
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.
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?
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.
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.
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.
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.
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.
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.
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.
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!
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 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!
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.
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!
Still, I got back on the horse – (well, I was lifted) – knowing I had no other option, since I couldn’t raise myself from that muddy puddle and walk away.
In 1998, aged 10, I became completely non-ambulant and dependent on my manual wheelchair.
Though it was some relief to no longer struggle desperately to stay on my feet, I then found myself thrown from my wheelchair on numerous occasions – whether due to misjudged terrain, being pushed too fast around the school grounds, the absence of belt straps and anti-tippers (I know, I know), or simple recklessness.
Oh well, you live and learn!
Now, I’m teeny tiny in stature and so, I’ve always been manually lifted and quite literally chucked around. This, inevitably, lead to further falls – or rather, being dropped on the floor and bashed against furniture.
Most of the time, I managed to laugh it off – shit happens! Other times, it was pretty damn painful.
Some years ago, a routine chest X-ray revealed a fractured lower rib.
The radiographer approached me to ask if I knew about the fracture. I told him I did, (how could I forget?). He then asked if I attended A&E following the accident – “No, what’s the point? Nothing can be done for a fractured rib”.
Though visibly surprised, he shrugged and agreed.
There are many more incidents I could recall, such as ramming my powered wheelchair – and my knees – into the bathroom sink, (unintentionally, of course!).
My point is, in life, we fall, we get hurt, we break. We can either wallow in self pity, or take the knocks on the chin, (sometimes literally), and choose to get over it.
Saying that, I could do without anymore ouch moments!
“Falling down is how we grow. Staying down is how we die.” ~ Brian Vaszily
Let’s be honest, when we’re young, we’re all enticed by a pretty face or a good body. Attraction is primarily physical, and to put it bluntly, at 18, most of us would shag anything with a pulse – opportunity is everything.
I cringe when looking back at some of the guys I fancied and gave my attention to! What the bloody hell was I thinking?!
Much later, I reluctantly signed up to dating app Hinge, which lasted a total of two months.
I tried modern dating (eurgh!), which, in my limited experience, seemed to consist of shallow idiots and the phrases “you’re no one’s type”, “get in the car!” and, “let’s book a hotel room”.
Responding with a firm no, I was told to “fuck off then”.
There are some lovely people out there!
On reflection, it probably wasn’t the best idea to tell one bloke that his car was shit, but it made me laugh as I rolled home alone in my powered wheelchair.
Growing up, a friend of mine repeatedly told me, “you need a big strong guy to pick you up and throw you around”.
I can see where she was coming from, but even as a young teen, I always thought, why? Don’t I just want someone to care?
Eventually, I did date that guy – the gym guy. And yes, for the first few months it was great. It was fun, liberating, and as another friend once said, “he gave you a sense of independence and adventure”. She was totally right.
In terms of practicality, it made life a hell of a lot easier for me, as a non-ambulatory wheelchair-user. For a fleeting moment, I thought that was what I wanted.
But, ultimately, I couldn’t rely on him and I felt very much like an option, a burden, and too much to take on due to my disability. He was physically incredibly strong, but mentally and emotionally very weak.
I didn’t realise it at the time, but at that stage, I was willing to accept the bare minimum – stupid girl!
I invested my time and energy in the wrong place, the wrong person.
The experience changed my outlook and, as cliché as it sounds, made me realise my worth.
You live, you learn, you move on.
As we get older, our perspective, values and priorities change.
These days, I can’t think of anything worse than attempting to flirt (awkwardly) with some Tinder clone. Quite frankly, I’d rather cuddle up at home, alone, with a nice cuppa tea!
At 33, my life certainly isn’t as I imagined or hoped for as a kid. Then again, with age comes the realisation that life rarely turns out as planned.
I’m no longer impressed by aesthetics. Trust me, a pretty face will only get you so far in life.
Above all, what I want is someone to care, unconditionally. Simple as that.
Don’t we all??
Don’t get me wrong, I cherish my alone time and independence, and I’m more than capable of caring for and supporting myself (mentally, anyway).
I’ve endured a fair amount of crap and spent over 90% of my life single. I’m certainly not the type to need a man.
I’m not interested in grand gestures, a lavish lifestyle, fancy house, or gym-bods!
But, for someone to choose you, want you, and stand by you, even when the shit hits the fan – especially when the shit hits the fan! That, to me, means the world.
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.
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.