Muscular Dystrophy – Page 2 – Disability & Lifestyle Blog

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.

Muscular Dystrophy & Mental Health

Sunday 10th October 2021 ~ World Mental Health Day

It’s now officially autumn in the UK, and so the days are becoming shorter, cooler and darker.

For many of us, the cold weather and lack of sunlight negatively affects our mood (Seasonal Affective Disorder).

This impacts some people much more than others, and of course, it is only one factor that contributes to the state of our mental health.

I believe we all experience some level and form of depression throughout our lives, and for very different reasons.

We’re advised to explore the outdoors, take walks in nature, and get regular physical exercise to improve cognitive function and release endorphins . But for those of us with physical disabilities, this isn’t always possible.

As a powered wheelchair-user with congenital muscular dystrophy, I can’t go running, walking, swimming, cycling or to the gym.

Though essential, my physiotherapy sessions came to an abrupt stop, many years ago, at the age of 14. Accessing services as a physically disabled adult is beyond challenging!

Furthermore, some with disabilities, impaired immunity and chronic illnesses are continuing to shield, and therefore cannot safely access the outdoors.

Some are completely isolated, don’t have a garden and cannot drive. Others are suffocated by the constant presence of carers and those they live with, unable to escape the confines of home.

It’s surprising how lonely you can feel in a crowded room.

So, what do WE do? How can WE support and improve our mental health?

There is no straightforward answer, (sorry about that!), as we’re all different, and facing our own battles.

I, personally, get very frustrated with life, my limitations, the lack of assistance, understanding and empathy. It does often feel like physically disabled people are disregarded from society and forgotten about.

But we feel, we need, we want, we deserve, we matter.

What Would You Do If You Could Walk?

I lost the ability to walk 22 years ago, at the age of 1o. For me, becoming completely non-ambulant happened quite unexpectedly, over the space of a couple of weeks.

Back then, there was little to no guidance or support. I didn’t have a full diagnosis and my rather nonchalant paediatric consultant wasn’t the best!

We didn’t have the Internet or social media to research and connect with others living with muscular dystrophy. And, until I reached adulthood, I didn’t know of anyone else with the same condition.

It was difficult enough leaving behind my group of primary school friends and moving on to a different middle school. I felt very lonely and was struggling to integrate, when came the added pressure of immobility.

Attending mainstream school, I was the only one with a disability amongst hundreds of physically fit, healthy, happy kids. My family and I were very much in the dark and going it alone.

Prior to this, I could only ever walk short distances – around school and home, but never steps or stairs. Then, at age 10, I suddenly found myself unable to stay on my feet, constantly covered in cuts and bruises from falling, and I didn’t know why.

Me, aged 5, in my primary school uniform

I was referred to a counsellor, but met with them no more than 3 times, as I found it utterly pointless. How was talking with a complete stranger holding a clipboard going to help me? I couldn’t walk anymore and that was that. Get on with it, Carrie.

Yes, I was stubborn and sceptical even as a child!

People often ask me if I miss it – walking. In all honesty, I tend to fob them off with a half-hearted response; “nah, not really. Moving on…”

But the truth is, my life could and would be so very different if I could walk.

I recently asked my fellow wheelies, on Instagram, what they would do if they were able to walk…

Some of these answers really made me laugh, while others are more thought-provoking.

What would I do? Run! You wouldn’t see me for dust, mate!

Muscular Dystrophy | Life with Carers

Living with a physical disability, as I do, often means dealing with carers. Believe me, this is not a lifestyle choice! It is a necessity.

I’m a very private person who enjoys their own company, hates relying on others, and I cannot do small talk to save my life!

The last thing I want is to do each morning is slap on a happy face and engage in polite conversation with carers, as I’m still half asleep and reluctant to leave my comfy bed.

Some days, it takes everything I have to not call out, “would you kindly buggar off and let me be!”.

Not that I’m ungrateful for the support they provide (no, really). Without them, I would quite literally be stuck – unable to get in or out of bed. They enable me to live my life.

Of course, this isn’t without issue.

I employ my own part-time carers, funded by Direct Payments. Consequently, I am responsible for hiring, firing, training, insuring, managing and paying my employees. This can, at times, be somewhat testing.

I never wanted to be an employer, in any capacity. But as previously stated, this isn’t a lifestyle choice. I NEED carers. Agencies are, well, far from ideal. And so, this is my only option.

As with most things in life, carers come and go. Some leave after a few months, while others stick around for years. Either way, the process of finding new employees, who are both capable and reliable, is always stressful.

Imagine, if you will, routinely inviting strangers into your home, to observe you in your most vulnerable state – first thing in the morning; naked, dribbly, grouchy, with whiffy armpits, stubbly legs and a head of hair like Tina Turner’s!

A black and white image of Tina Turner, with big hair — Tina Turner

Sadly, I don’t look quite as graceful as Cinderella on waking!

Disney's Cinderella waking up

You then have to instruct, explain and demonstrate your personal care routine, entrusting your safety to this stranger.

Sounds fun, huh!?

It’s not. At all. And I loathe it. But this is an essential part of my life with a physical disability.

It is, therefore, all the more reassuring when someone comes along who instantly puts you at ease, makes you laugh, talks (but doesn’t babble), and actually wants to work. This isn’t easy to find!

It’s early days with my latest newbie, but after a somewhat turbulent couple of months (care-wise), it is a huge relief.

Always nice to close on a positive note, eh folks.

A Year Offline | Sept 2020 – 21

My last post was the first after a year’s absence!

So, what have I been doing in that time?

Well, I dyed my hair – wild, I know

From blonde (above) to brunette-ish (below)

Went even wilder and got filler + botox…

Making a dick of myself with a filtered selfie

…No, not really!! 😂

Embraced fluffy socks to hide my corpse feet (even when leaving the house!)

Me, sat in my powered wheelchair, wearing comfy fluffy socks

Accidently drove my wheelchair into the bathroom sink, bashing my knee – ouch!

Redecorated my bedroom and deliberated for too long over duvet covers
Failed at knitting so took up crochet
Started learning French through Duolingo. In my opinion, so much easier than lessons at school! Although, to be fair, I did spend most of my time staring out of the window
Learned to play pool…online…sorta…
Went to my first ever supercar fest – Shelsley Walsh Hill Climb. I’ll be honest, I haven’t a clue about cars but it was a fun day and something different

Shelsley Walsh Hill Climb – Supercar Fest

Me, sitting in my powered wheelchair (held together by tape!), watching the hill climb at Supercar Fest

A particular highlight was our accessible canal boat ride through the prehistoric Dudley tunnels, mined during the Industrial Revolution. We got soaked (from the rain; we didn’t fall in the canal), and I ended up looking like Alice Cooper with mascara running down my face. But it was memorable!

Despite restrictions, I’ve managed to get out and about a fair bit – Roaming around aimlessly in the car, wandering along accessible forest trails, casually entering a local arboretum without paying, and even attempting the Malvern Hills!

Taking on the great outdoors is definitely challenging in a powered wheelchair, and it’s been met with limited success. But, for me, it’s not what you do but who you do it with.

Grabbing a Tesco meal deal with someone you love ♥ is (to me) far more precious than partying with a room full of semi-drunk acquaintances.

(Photo credits: All media copyright CarrieA & JV)

Riding the Wave | Lockdown Perspective

Disability Lifestyle & Lockdown

I was born with a rare, progressive form of muscular dystrophy. Besides being a non-ambulatory wheelchair-user, my condition comes with many other complications.

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.

Abide!

My Perspective

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. ~

Making Memories | Happy Days

Parks, Play, Pee and a Powered Chair

One of my most cherished days of the last six months was spent with my brother and little nephew.

The bro and I walked/wheeled to the local nursery to collect the kid, who had apparently been chilling with real lions and tigers – “ROAR”

I’m not convinced.

We all walked home via the park, where we fussed some friendly doggies, played hide and seek, oh, and the kid peed up a tree!

As the boys ran ahead, my powered wheelchair stopped abruptly in the middle of the park, and wouldn’t budge. Crap!

With no obvious reason for the breakdown, bro did the sensible thing and gave my chair a damn good shake and a whack!

While all this was going on, little man, totally unfazed, called out, “Cazzy, I got a stick!”

I appreciate this isn’t everyone’s idea of a good time. But for me, laughing, talking and having fun in the sun with those I love is what I value most in life. The simple pleasures.

By the way, I’m no longer stranded in the middle of the park. We managed to kick-start my rebellious chair and make it home, where many more giggles and games took place.

Thank frig I was with my boys!

Getting Back on the Horse

As a kid, I rode horses until the age of 10, when I lost the ability to walk (due to a rare, progressive form of congenital muscular dystrophy).

One day, the horse I was riding decided to bolt and suddenly swerved to a halt, throwing me on the floor with an almighty bump.

Slightly shaken and slumped in a muddy puddle, with a bruised arse and a missing boot, I had two choices.

Unable to get up and walk away, I could either sit there and wallow, or clamber back on the horse.

As tempted as I was to avoid the risk and mope in the mud, I opted to get back on the frisky mare.

There’s a lesson there, somewhere…

Life can knock you down, again and again.

Sometimes you find yourself asking, “why me? What have I done to deserve this crap?”

There is often no rhyme or reason and, at times, it may feel like you just can’t catch a break. But, shit happens.

The point is, it’s up to you whether or not you try to pull yourself out of the muddy puddle.

Find the thing, the person, the people that motivates you to overcome and battle on.

I never did find my riding boot, though. Maybe the horse stole it. Bitch!

Dating with a Disability | Q&A

In part one, I shared my personal experiences with dating as a non-ambulatory wheelchair-user, as well as some motivational advice.

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…

Instagram Q&A

(Above): Thanks to my mate, Ross Lannon for this delightful contribution!

Twitter/Facebook 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.

Dating Disasters

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!

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!!

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 – a little – but I’m terrible at the whole flirty thing.

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.

Tag: Muscular Dystrophy