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. ~
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.
This stylish food preparation board, made from sustainable Rubberwood, is a multi-purpose, top quality kitchen aid.
I was so impressed with this piece! It is really attractive and doesn’t look at all like a standard disability aid.
It is designed for those with weak hand function, including impaired grip, poor hand control and tremors.
Using only one hand, the Easi-Grip board allows you to grate and slice food effortlessly. The spiked area ensures food is kept in place for peeling and cutting.
Several essential items all-in-one: Stainless steelfine/coarse graters, slicers, collecting bowl, spiked area, and long-lasting wooden board.
I have muscular dystrophy ~ contractures, poor grip, and very little strength. Despite this, I found the Easi-Grip food prep board really easy to work with, and a huge asset. I no longer need to ask for any help, which is a big deal for me!
My mum, who has osteoarthritis, loves this equally as much as me! Suffering with joint pain and stiffness, she found it significantly easier to use than regular kitchen tools.
This popular trio of knives has undergone a recent design revamp – the ergonomic handles are now thicker, making them easier and more comfortable to use.
The bright lime green areas indicate the “soft-feel” non-slip areas, as well as making them a bit more modern and aesthetically appealing compared to standard kitchen knives!
I would highly recommend all of these products to anyone, regardless of (dis)ability. They are top quality items and I am so thankful to Manage At Home and PETA [UK] LTD for sending them to me. I love to cook, and these kitchen aids have made life a little easier for me.
This post is in collaboration with Manage At Home and PETA [UK] LTD. The products were gifted to me in exchange for an honest review. Opinions expressed are entirely my own.
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.
This is not to say that the disability/impairment, whether temporary or permanent, is the primary cause of the mental health issue. It could be a contributing factor, or they may be completely unrelated. You might just be super lucky and have been blessed with both – Double whammy!
Equally, those struggling with their mental health will often (if not always) experience physical side effects, such as headaches, fatigue, insomnia, restlessness, nausea and chest pains.
Essentially, what I’m saying is, the mind affects the body and so the body affects the mind.
My Disability & Point of View
I was born with a rare form of muscular dystrophy – a physical disability – that has progressed over time. I am now a non-ambulatory wheelchair-user, having lost the ability to walk at age 10.
My condition has a considerable effect on my body and physical capabilities. With the best will in the world, there are many things I cannot do.
For example, my older brother is very fit and able-bodied. He has travelled the world and often goes trekking through the countryside and climbing mountains.
I often wish I could be out there with him. It might not be everyone’s cuppa, but it would be nice, just once, to experience that sort of thrill and adrenaline rush. A real physical accomplishment whilst being in the midst of nature.
But, I can’t. And I never will. Of course, this gets me down and impacts on my mood. Yes, I wish I could walk, run, dance, be completely independent and spontaneous. But I can’t. I am limited and reliant on support from others to live my life. This is something I have no choice but to accept.
There is no treatment, no cure, and no pill I can pop to help the situation. For lack of a better phrase, it is very much a case of, deal with it!
I cannot control my disability or how it affects my body. Therefore, it is important to focus on the things I CAN do and control.
I can’t dance, so I like to watch the dancing (yes, I’m a sad, old Strictly fan. Don’t care!)
I can’t drive, so I have a passenger WAV (wheelchair accessible vehicle), which allows me to get out and about.
I can’t walk or run, so I roll (with style)!
Admittedly, I’m pretty crap at sorting my own problems out. So I tend to focus on other people’s 😂 Not necessarily a good thing, but there ya go!
Living with a physical disability is a way of life. It is inflicted on us – we have not chosen this path. Similarly, living with a mental health illness is a way of life. So what you gonna do? ADAPT or Die!