My summer kicked off back in June with a holiday to sunny Cornwall, and I’m still longing for those soothing sea views.
Living in the landlocked midlands, as I do, situates us far from the coast. So, for me, a trip to the seaside is a real treat.
I stayed in the biggest accessible room I’ve ever seen at a Premier Inn, located in Camborne.
There was enough space to have a party, and the disabled facilities were well-considered. I would highly recommend this particular hotel for wheelchair-users who require multiple carers and mobility equipment, due to the expansive floor area.
Whilst in Cornwall, I spent my days being chauffeured around by a good friend who lives locally. What a lovely obliging boy he is!
In all seriousness, it was great to get away and spend time with one of the few people I can completely relax and be myself with.
The first three days were gloriously hot and sunny, which allowed us to explore Godrevy, Polly Joke poppy fields, Lands End and Penzance.
GodrevyPolly Joke poppy fieldsPolly Joke poppy fieldsAt Land’s End
On the Friday night, we had a mate date in Falmouth where a lively sea shanty festival was taking place. I chucked pizza at myself (unintentionally) and stained my lovely lovely dress. Standard.
We briefly met up with a group of people, one of whom instantly recognised my midlands dialect, which amused me somewhat since I didn’t think I had an identifiable accent. Apparently I do!
She and I talked about how different the Cornish lifestyle is. And it’s true. People seem friendlier, happier and more patient. The pace of life is slower and calmer, and the area itself couldn’t be more of a contrast to what I’m familiar with. It’s a place you move to, not from. Idyllic!
Looking out to sea, Penzance – Following our visit to Land’s EndPosing in Penzance, Cornwall
On the weekend, the weather took a turn for the worse, along with my health. For no obvious reason, my chest played up on the Saturday, and so we chilled at Ross’s place all day – the most immaculate abode I ever did see. Ralphus (the dog) tried to cheer me up by licking my entire face rather enthusiastically. I have to say, it was the best snog I’ve had in a while!
By Sunday, I was feeling much better, so we drove to Newquay with the intention of visiting the aquarium. However, once parked up, we encountered a rather unfortunate wheelchair malfunction. After laughing inappropriately, I grabbed a somewhat confused passer-by for assistance, before making our way home, without saying hello to the aquarium fishies.
Next time, fishies. Next time!
Though sad to leave, it was a much-needed positive start to the summer after a tricky few months.
Cornwall, thanks for the memories. I’ll be seeing ya! ♥
The former doesn’t sound very exciting, and it isn’t, but as anyone with a disability or chronic illness knows, there are many ongoing battles to be fought.
I met with various doctors, occupational therapists, and mobility equipment reps. I even managed to recruit a new carer, not easy in the current climate, to drive me from place to place in my Motability WAV (wheelchair accessible vehicle).
My powered wheelchair, partly held together with gaffer tape, continues to fall to pieces, and is now in need of new batteries.
Why do they suddenly decide to fail, without warning??
This is all the more challenging since it isn’t a NHS chair, and so I am responsible for sourcing and funding repairs.
Despite actively bidding online and pursuing a move for over a decade, I still live with my parents in their home – far from ideal for any 33 year-old!
Finally, after a consistent bombardment of calls and emails, community housing managers agreed to meet with me in person.
Though empathetic, they openly admitted it is very much a postcode lottery issue, (I couldn’t tell you how many times I’ve heard that excuse). Consequently, it could take years to rehouse me!
I will persevere and hope for the best, while maintaining realistic expectations.
On a happier note, May provided some space for myself, as my folks took a little staycation.
People often misunderstand my need for solitude. Then again, these people have their own homes and the freedom to do as they please, when they please. It’s about freedom of choice and being able to live life on my terms.
As tiresome and frustrating as it is, this is the reason I battle with medical professionals, OT’s, community housing, social services, and so on – for a better quality of life!
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.
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.
My Nan and I, around 30 years ago
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!
My 4 year-old nephew, wearing my sunglasses, during our family gathering
Accompanying us was the newest addition to the family, my gorgeous niece, baby Sophie, born in June. A funky-haired little ray of sunshine.
Me and my niece, baby Sophie, in June 2021
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.
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.
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.
My Motability passenger WAV (Wheelchair Accessible Vehicle)
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!
Shortly after, I received a phone call from the CHC (Continuing Healthcare) department who claimed to have made a personal care payment back in the summer. They didn’t.
I won’t go into details (it’s a long story!) But my battle with Continuing Healthcare has been a lengthy and stressful one, with absolutely no benefit.
Okay, putting things into perspective, this isn’t the end of the world! I’m now sat watching cartoons with my beaut of a nephew. So it aint all bad!
