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).
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.
I’ve read many trivial complaints on social media about the Coronaviruslockdown.
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.
As a non-ambulatory wheelchair-user for the past two decades, I’ve experienced many frustrating encounters with lifts/elevators.
~ Being unable to fit inside because they’re occupied by physically fit (lazy, ignorant) able-bodied people
~ Getting stuck in them (once on a very old ferry!)
~ Getting stuck out of them (broken/out of service)
~ Waiting, waiting, waiting…
As a teenager, I went shopping to my local TJ Hughes store (super cool!), which was on three floors. It was a crappy old lift but nevertheless I travelled to the top floor because, well, I wanted to!
When I came to use the lift again, it wouldn’t work – it was completely unresponsive.
Unable to walk at all, I was stranded on the third floor in my manual wheelchair.
More than a little irritated, I started hammering the call button on this lift, “you WILL bloody work!!”
At this point, I was left with no other option than to be manually carried down two flights of stairs by a member of staff. Talk about awkward!
Well, it was either that or, frankly, I’d probably still be stuck there now.
Thankfully, I’m teeny tiny, my wheelchair was lightweight and foldable, and the guy who carried me was young and smelt amazing! I was tempted to ask what he was wearing but thought better of it. I’m not that weird…
It was fortunate that I wasn’t in my current powered wheelchair. If I had been, I honestly don’t know what would have happened…forever stranded in TJ Hughes!
It’s a memory that’s imprinted on my mind. It shouldn’t have happened, it was annoying, undignified, embarrassing and yes, at the time, I was thoroughly pissed off!
Although, on reflection, it is pretty funny. Got to laugh, right!
Of course, it made me wary of using lifts in the future. But I really don’t have a choice! I’m not going to avoid them and miss out just in case something bad happens.
It’s inconvenient at the time but always resolvable.
IF I do ever get stuck again, well, then I’ll worry about it…IF.
Side note ~ If you are fit and able, and have two fully-functioning legs, please use them! Kindly take the stairs and let those in need access the lifts/elevators. Ta muchly!
I cannot fault their customer service or the assessor who bought a number of demo chairs to my home to try prior to purchase. He was very knowledgeable, patient and not at all pushy (as some sales rep’s can be).
However, I find the quality of the armrest pads to be extremely poor.
As you will see from the image below, to replace them will cost an additional £83.40 – a rather hefty sum to replace an item on a relatively new powered wheelchair!
I am reluctant to pay the £83.40 to replace the armrest pads, particularly as they are likely to disintegrate again within a few months. In the meantime, I am left with an unsightly product that is literally falling to pieces.