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!
Me and my bloody knee!Me and my bloody knee!
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 FestMe, sitting in my powered wheelchair (held together by tape!), watching the hill climb at Supercar FestSupercar Fest – August 2021
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!
The Black Country Living MuseumOur accessible canal boatDudley canal and tunnels
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!
Our view from Black Hill, Malvern
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.
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.
There are soooo many songs that in some way represent life in lockdown, it was difficult to limit the list.
1. The Police, Don’t Stand So Close To Me (1980)
When all this Corona craziness hit home, people panicked. Understandably so.
Don’t touch me, don’t cough near me, don’t breathe on me, don’t look at me!! 😱
2. Queen Ft. David Bowie, Under Pressure (1981)
And so lockdown begins. Society starts to feel the pressure. People are unable to go to work, parents are home schooling, families are forced apart and the NHS is put under great strain.
3. Queen, I Want To Break Free (1984)
The days turn to weeks. We get up, we eat, we go to bed. We’ve basically adopted the dog’s lifestyle!
Everyone is bored and frustration is setting in. For those like me who are considered high risk, the four walls of home become more of a prison than a sanctuary.
4. Peter Gabriel, Don’t Give Up (1986)
Weeks turn to months. We’ve lost track of what day it is. We’re lethargic, lonely, lacking in motivation, low in mood and missing our loved ones.
When will this come to an end…?
5. Fleetwood Mac, Don’t Stop (1977)
There is finally some light at the end of the tunnel! It seems we’ve hit the peak and restrictions are slowly being lifted. We are far from the finish line but we’re holding on to hope.
“Don’t stop thinking about tomorrow Don’t stop, it’ll soon be here It’ll be, better than before, Yesterday’s gone, yesterday’s gone”
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.
But in summary, it is slowly progressive, causes joint contractures, and does not affect the heart or intelligence.
4. Can people with MD have babies?
The simple answer is YES! MD doesn’t affect fertility in any way.
My good friend Fi Anderson has a rare form of MD, and is a mother to two daughters, neither of whom have MD. Check out Fi’s blog here!
5. Can a baby be tested for it in the womb or only after birth?
Prenatal diagnosis is possible for some forms of muscular dystrophy, but not all. Non-invasive testing can be carried out from 7 weeks into a pregnancy.
If one or both parents are carriers of a particular muscle-wasting condition, there is a risk the child will be affected.
It is advisable to contact a geneticist for further information and guidance.
6. What do you wish people unfamiliar with MD knew about it?
I wish there was much more awareness of the condition, and the fact that there are many varying forms.
Sadly, many people haven’t even heard of it.
Furthermore, those who have tend to associate it with Duchenne (the most common form).
Almost every medical professional I’ve encountered throughout my life has assumed I have Duchenne, which goes to show the lack of familiarity and education.
There is a lot of information, research and charitable funding for Duchenne MD, which is fantastic. But, there is very little for other forms, which is, I have to admit, rather frustrating.
This means that people living with lesser-known forms, that are just as debilitating as Duchenne, do not receive the same support.
I became completely non-ambulant at age 10, and I now use a powered wheelchair.
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.
Illustration by Jessica from The Disabled Life ~ http://thedisabledlife.ca/
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!
My Motability WAV
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.
Though we all must now adapt and change our way of life somewhat, it’s important to remember this is only temporary. Things will improve.
I’ve heard people complain about the restrictions; mostly young, fit, able-bodied people. Yes, it’s a pain in the fat ass! But it isn’t forever.
Funny meme about the Coronavirus featuring the character Jay from The Inbetweeners.
Also, please be aware that many disabled and chronically ill people are repeatedly forced into prolonged periods of self-isolation throughout their lives. Plans are often cancelled last minute due to poor health. This isn’t new to them.
So, before you complain because you can’t go out partying with your mates, or to the pub, please consider those for whom limitation and isolation is a way of life.
Final Thoughts
Show your thanks and appreciation for the NHS and those working in health and social care.
Illustration of NHS healthcare workers being saluted by Superman.
Be mindful of the most vulnerable in society, and help out if you’re able to.
Print-out for those wanting to help anyone self-isolating due to Covid-19.
Please don’t panic buy or stock pile. This isn’t the apocalypse, people!
My good friend and fellow wheelie wench, Lucy Hudson, is a published author!
Lucy, who also has a form of muscular dystrophy, is genuinely one of the most kind, caring and clever people I have ever known.
As today is World Book Day, I thought I would encourage you all to check out the two poetry anthologies she co-wrote with writer, Justin Brown.
Front cover of ‘Wheels of Motion’, a poetry anthology by Justin Brown and Lucy HudsonBack cover of ‘Wheels of Motion’, a poetry anthology by Justin Brown and Lucy Hudson
Front cover of ‘On The Road To Somewhere’, a collection of poems by Justin Brown and Lucy HudsonBack cover of ‘On The Road To Somewhere’, a collection of poems by Justin Brown and Lucy Hudson
Though I still look about twelve (woo! 🙄), I’m actually now the grand old age of 31; A true child of the 90s.
A friend and I were recently gabbling away and reminiscing about things from our childhood.
Some were great! And others were…not so great.
Do you remember any of these..?
Babyliss Hair Straighteners/Crimpers
Image Description: Babyliss hair straighteners/crimpers from the late 1990s
Many years before obscenely priced GHDs became the go-to hair straightener of choice, we had this bad boy!
A multi-purpose hair straightener/crimper, this clumpy contraption took about an hour to reach a lukewarm temperature. We then had to clamp each section for…oh, flippin’ ages!
Quite why we wanted to crimp our hair, I don’t know. But at the time, we thought we looked ace! On reflection…not so much.
All of this has made me think about relationships and what they really mean.
Valentine’s Day Selfies
We’ve all seen couples posting impossibly idealistic, airbrushed selfies on social media, making us believe their lives together are perfect and they couldn’t want for any more in a partner.
Ha! Who are you trying to kid? (Call me cynical).
But the truth is, when you live with someone, whether it be family, friends or a partner, you will inevitably, at times, rub each other up the wrong way and fall out. To think otherwise is, frankly, naive.
They may be senseless, petty disagreements or more serious conflicts. The important thing to consider is how you react and resolve such issues.
As the saying goes, never sleep on an argument. It may seem daft, but it’s true. An unresolved argument will just fester away.
It’s Good to Talk
Some people, somewhat understandably, choose to avoid any sort of conflict and refuse to acknowledge tension within their relationships; sweeping it under the carpet. This isn’t a healthy approach.
If you have a grievance, talk about it calmly and reasonably. Share your worries and concerns with friends, family and loved ones. Don’t bottle things up. Again, it will just fester away resulting in bitterness and resentment.
It’s Really Okay to Disagree!
We can’t all be the same. If we were, life would be very boring. You don’t have to like all the same things or agree with everything those around you think and feel in order to love them. I repeat; to think otherwise is, frankly, naive.
#BeKind
Kindness isn’t agreeing when you don’t, or avoiding potentially difficult conversations just to keep the peace. Kindness isn’t pretending to enjoy things you don’t simply to please others. Kindness isn’t inflating another person’s ego to make them feel good.
Kindness within relationships is about respecting each other’s views, differences, individuality and needs. It’s accepting that we are all flawed and forgiving sincere mistakes. Kindness is about caring enough to keep each other safe, supported and grounded.
