Embraced fluffy socks to hide my corpse feet (even when leaving the house!)
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
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.
This wasn’t a conscious decision at all. I simply don’t believe in churning out meaningless content purely for the sake of it, so felt it best to wait.
A lot has happened over the past 12 months, both good and bad…
Of course, we’ve endured lockdown and are continuing to feel the effects of Covid, with many disabled and chronically ill people still shielding.
To protect myself and others, I received the Astra Zeneca vaccine back in March – Woop!
While this offers a lot of relief and reassurance, it is important to remain considerate of the many thousands, like me, who are high risk.
Covid isn’t going away, but neither are we! Disabled people are very much a part of society and we should not be ignored or disregarded.
To further protect myself through the harsh winter months, I’ll be getting the Flu jab at the end of September – A thoroughly beneficial prick! I urge you all to do the same, if possible.
On a personal note, we sadly lost my Nan back in January. A tough old bird ‘til the end, she made it to 94, despite smoking forty-a-day, from the age of 12-70!
I will miss her endlessly engaging, witty stories.
We recently gathered as a family to scatter her ashes alongside Stourbridge canal. Despite the occasion, it was actually a really lovely day.
My 4 year-old nephew was an absolute star, “helping to push” me, in my powered wheelchair, the entire way along the bumpy canal path. That kid keeps me going – literally!
Accompanying us was the newest addition to the family, my gorgeous niece, baby Sophie, born in June. A funky-haired little ray of sunshine.
Next month, I’ll be glamming up to attend the wedding of one of my best friends. Having known each other for over 20 years, I’m excited and proud to see her walk down the aisle.
I will attempt to take photos on the big day, but make no promises. I may be distracted by cocktails! Pray there be cocktails…
Beyond that, my plan is to fully embrace the approaching crisp autumn days and cosy nights with hot chocolates, candles and cuddly blankets. Yes, I’m old. Do I care? Naaaaaah!
Oh, this year, I also discovered I really dislike figs! They have the strangest texture. Much like chewing on the sand smothered sandwiches my mum used to make for us to eat on the beach as kids. Mmm, gritty!
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 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!
But there are also times when my patience is wearing thin. Some days, I’m just not in the mood!
Today is one of those days.
I attended a routine hospital appointment and parked my Motability WAV in a disabled bay, with my blue badge clearly displayed, as usual.
As I reversed out of the WAV, I heard a woman stood directly behind me shouting, “I’m just having a nosey inside!”
*Cue eye-roll* Oh, feck off, lady!
I then waited in a small room crammed full of virally infested patients for well over an hour, only to be told the nurse I was due to see went home sick hours before. Which begs the question – why not inform me of this on arrival?!
I waited a further half an hour to be seen by another nurse. At least it wasn’t a wasted journey, I guess.
Having returned to my car, I was ever-so-slightly pissed off to find a parking ticket!
As soon as I got home, I logged-on to check out the meaning of this fuckery. As I suspected – no reason for issue, no explanation and no photo evidence.
Needless to say, I wrote a strongly worded appeal. Under no circumstances will I be paying this unjustified “parking charge”. No, just no!