For me, being stuck at home for prolonged periods of time, due to chronic illness, is the norm. Hospital admissions, operations, cancelling plans and missing out on events and opportunities is a way of life.
Over the years, many birthdays, holidays and celebratory occasions have been lost to my condition. Whole months have been wiped out to repeated bouts of pneumonia, pleurisy and pneumothorax.
~ This is the case for thousands of disabled and chronically ill people throughout the UK! ~
I know what it is to struggle, to feel trapped, isolated and helpless. Such an existence really puts life into perspective and opens your eyes to what is truly important.
Attitudes to Lockdown Restrictions
Since lockdown began, I’ve seen and heard many petty complaints from ignorant individuals, which I find incredibly frustrating.
People whining about being unable to go out partying or bar hopping to get pissed.
To those self-absorbed cretins ~ GET OVER YOURSELVES!
Despite warnings, many continue to flout the rules, refuse to wear face masks and generally take life for granted, with little regard for the wellbeing of others. Some naively appear to think they’re invincible.
Trust me, it’s a hell of a lot easier to breathe through a protective face covering than a ventilator!
So please, have a little care and consideration. Protect yourself and others.
During lockdown, I can honestly say I did not miss going to pubs, restaurants, cinemas, shops or salons. To me, these are life’s luxuries.
Yes, we all need that escapism and we all enjoy going out and socialising, myself included.
But, when the time comes to look back on my life, I’m pretty certain I won’t be thinking, “damn, I wish I’d done more pubbing and clubbing”.
The one thing I REALLY missed during lockdown was quality time and physical contact with my family and closest friends. Being able to sit with them, touch them, hug them and talk face-to-face.
~ It really isn’t what you do, it’s who you do it with. ~
This week, the UK government issued new measures to suppress the spread of Covid-19. From Monday 14th September, social gatherings will be limited to 6 people.
In all honesty, I can’t say I’m surprised at these restrictions. From my perspective, as a physically disabled shielder, it seemed inevitable.
Our government has actively encouraged people to return to work, to school, the High Street, the salon, the gym, to pubs and restaurants.
Of course, we all want a return to some sort of normality. And while it is essential we sustain our economy through supporting businesses and minimising unemployment, it would appear BoJo favours wealth over health.
Those at greater risk have been largely neglected; the elderly, disabled and those with underlying health issues.
Many, like myself, have been shielding since March. We have been isolated in our homes, watching the world go by from behind closed windows.
Some have endured months without medical support. Personal carers, though essential, pose a risk to the most vulnerable. And others are forced to leave work, since there is little to no support for disabled employees.
I am very fortunate to have been able to continue accessing my routine hospital appointments throughout lockdown.
Despite initial anxiety and fears from friends, I felt safe and protected during every one of my 6 hospital visits and 2 GP appointments since March – all thanks to our invaluable NHS.
However, after waiting almost a year for a much-needed respiratory referral, I fear my upcoming appointment may now be cancelled, due to the latest guidelines.
My discussions with various medical professionals over the past few months reveal concerns for a second lockdown around October.
With Flu season approaching, this warning poses an even greater strain and impact on the elderly, disabled and NHS.
Part two is a little more light-hearted, giving an insight into some amusing dating disasters!
In this third and final offering, I answer ALL of your burning questions…
Q: What tips do you have for disabled people who don’t understand why someone would want to date them?
A: I think it’s natural to lack confidence and feel insecure, regardless of (dis)ability. I’m sure we have all felt this way to some extent. This comes down to how we perceive ourselves and self-worth. I do think we need to find happiness and contentment within ourselves before entering into a potential relationship. Believe me, I know how difficult this is! Also, there comes a point where you just have to take a leap of faith and trust that what this person says is sincere. If they tell you they like you and enjoy your company, trust them! Don’t question it – you will drive yourself mad and eventually irritate them too. Yes, it might go nowhere, but at least you will have allowed yourself that opportunity. Dating is all about confidence, self belief, taking risks and having fun. I hope this helps!
Q: What is the biggest challenge you have faced?
A: Again, for me, it’s all about realising my worth. I am very self-critical and have, at times, convinced myself that no one could ever want me. I thought I was too much to take on; an unnecessary burden. Why would anyone date me when they could go out with an able-bodied girl? But I have been proven wrong. Initially, I was very sceptical and found it hard to believe guys when they told me they liked me. But I soon realised I was doing myself no favours; this was self-destructive behaviour.
Q: What are your biggest insecurities?
A: My body and physical limitations. I am non-ambulant, incredibly petite and have a significant scoliosis (curvature of the spine). I don’t look “normal” and I don’t have a curvy, womanly physique. I would try desperately to disguise this with baggy clothes, and felt embarrassed by my child-sized stature. However, I now make a point of celebrating my tiny, “pixie” frame. After all, being small has it’s advantages! I’m easy to carry and throw around! I am what I am. There’s nothing I can do to change my body. If people don’t like it, that’s absolutely fine – it’s their problem, not mine!
Q: How and when do you reveal your disability and limitations when dating?
A: This can be difficult! For me, it isn’t as simple as, “I can’t walk”. My disability comes with many challenges and health implications. It’s hard trying to explain this to someone who has no knowledge or familiarity with my condition, without overwhelming them with information. I think it’s important that you are willing to answer questions, however silly they might seem. Personally, I don’t take offence when guys ask if I can feel and if I’m able to have sex. It’s natural curiosity! It doesn’t mean that’s all they’re interested in.
Following my last post, I was encouraged to write more on the subject of dating with a disability. Not that I’m much of a dater. I don’t do the apps (other than a brief stint on Hinge) or actively chat up blokes. If it happens, it happens.
A mate told me to share some dating disaster stories. I’m not sure there have been any disasters, as such. Rather, a few funny anecdotes.
One took place on a freezing cold day in January – not ideal. He wrapped his coat around me, which was quite sweet. He wouldn’t let me keep it (less sweet, methinks) but I did steal his hat!
Another date (if you can call it that) was with a 34 year-old guy from dating app, Hinge. Though stereotypically attractive – clean cut with washboard abs – he really wasn’t my type at all.
Still, I was encouraged to go for it, mainly because he’s older and, in theory, more mature. So, on a whim, after months of chatting on/off, I agreed to meetup.
This lead to possibly the most awkward and stale encounter I’ve ever experienced. I’m not sure if he was going for the brooding, ‘treat them mean, keep them keen’ thing, but it translated as pure arrogance. Plus, he had zero sense of humour and was somewhat full of shit.
He claimed to have dated Ellie Goulding and that one of her songs was written about him. Google disagrees!
The only thing he seemed interested in was his car (which, I may have inadvertently insulted. I amused myself, anyway), and getting a hotel room there and then.
Now, each to their own, but I’ve never been into meaningless one night stands. Plus, let’s be real for a second, I’m a girl. A “vulnerable” girl. So if a guy can’t appreciate why I don’t want to hook-up within 10 minutes of meeting, well, sod off mate!
Having said that, if Chris Pratt rocked up, I might make an exception.
So, in the end I told him I was off home for my tea (yes, I really said that).
I took the long route and nagged a mate on the phone on my way. As I rolled along the riverside in my chair, a little kid waved enthusiastically at me. That made me smile and was most definitely the highlight of my evening. Kids are so much easier than men!
Prior to this, I met up with a lad I went to school with. He’s a bit quirky with long, dark, wavy hair and piercing blue eyes – ding, ding, ding!!
Somehow, we got chatting after some 15 years, and I went to his place. There was no plan or agenda on my part. Yes, I fancied him but I’m terrible at the whole flirty, dating thing. So, although I hoped, I expected nothing.
Now, I’m completely non-ambulant and haven’t been up a flight of stairs in many years. So, despite worrying that I’d be dropped on the floor in a heap, I trusted him to carry me up to his room where he plonked me on his bed.
After a fair amount of kissing and rolling around, the boy got a bit excited and, well, released his manly juices over my lovely top! Mmm, crusty!
You may be surprised to learn this beautiful union developed no further. Shame, I did like him…
Honestly, I hate dating. It’s generally pretty nerve-wracking. But, add a disability into the mix and the whole thing becomes even more challenging.
Disability aside, I am an acquired taste. I have a very dry, dark, and somewhat sarcastic sense of humour. I’m not a natural people person, and I can’t do small-talk to save my life. Yes, I’m a bit of a weirdo.
Many seem to assume disabled people only date those with a similar disability. I never understood that.
Personally, I’ve only ever dated able-bodied guys. This isn’t necessarily a conscious decision, though in all honesty, it does make life easier!
Dating with a physical disability like mine can be awkward, embarrassing and frustrating. There are certain things I cannot do that I REALLY wish I could. So, you need to be willing to answer questions, explain your limitations and ask for help.
I don’t think I’ve dated anyone who hasn’t asked the following:
– Can you move? – Can you feel? – Do you hurt?
If and when you’re hit with the 20 questions, my advice would be to try and keep it light-hearted and good-humoured. Remember that many people have no knowledge or familiarity with your disability. They are simply curious and showing an interest in YOU.
You may be reluctant to date because of your disability. Maybe you lack confidence or think that no one would want you. Trust me, that’s bullshit!
Yes, you might make an arse of yourself and roll home feeling like a bag of shit. I know I have. But hey, if a date goes badly, you never have to see them again!
Bad experiences will knock your confidence. But you’ve just got to dust yourself off and try again.
One guy once told me that I’m no one’s type (referring to my disability). What a lovely chappy! Well, he kissed like some kinda mutant slug! So, no great loss there. Cheerio, bye-bye…
This seems to be the go-to method these days. It works for many, but I’m not a dating app type at all. I can tell you now, you’ll never see my face on Tinder or PoF. And if you do, it ain’t me!
The only app I ever used – reluctantly – is Hinge (dubbed “Cringe”), recommended by a good friend.
Much to my surprise, it made quite an impact on me and effectively changed my whole perspective on love…
For a long while, I was referred to, by some, as “the ice queen”. I had my guard up and always kept people at arms length, due to low self-esteem and a fear of judgement and rejection.
I was totally cynical about love and never showed any interest in marriage – I wasn’t the little girl who fantasised about a big white wedding.
Despite a few dates, I wasn’t taking Hinge seriously and never thought I’d meet anyone or fall in love. That just wasn’t me. Then, most unexpectedly, I did.
Quite early on, my mum said she could see me falling for this guy. She told me if it didn’t work out, it would break my heart.
“Nah, we’re just keeping it casual and having fun. Nothing and no one will break my heart”.
Or so I thought. But damn it, mama was right. I really did fall for him. I fell hard and fast (not on the floor, although that has happened)! And my heart really did break when it ended.
But that’s life. Shit happens. You live and learn.
The point is, you have to be willing to take risks, open up, allow yourself to trust, and yes, to get hurt.
It sounds cliché, but it’s essential you realise your worth. Never allow anyone or anything to make you feel you are not good enough or undeserving of love and affection!
And, if anyone does make you doubt your worth, well, fuck ’em! (Not literally).
Since we’re all still stuck at home, twiddling our thumbs, I thought I’d suggest some reading material for you.
The six books I have chosen focus on the themes of disability, mentalhealth, positivethinking, overcomingadversity, trauma, and recovery.
A few years ago, I had the privilege of interviewing this former Olympic hopeful who beat the odds and transformed her life after suffering a horrific accident.
Janine Shepherd radiates energy, enthusiasm and an endearing wit. Her memoir is a must-read!
Some of you may know that Lucy is a good friend of mine. Like me, she is a non-ambulatory wheelchair-user with a form of muscular dystrophy.
‘Wheels of Motion’ is a poetry anthology unlike any other. If you live with a disability yourself, I highly recommend you check this out! (Available on Amazon).
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.