Hey there folks, hope you’re all well. Just a quick check-in today to apologise for my recent absence. I had intended to upload a number of blog posts over the past fortnight, but as often happens, life has taken over of late.
But fear not readers (of which there are thousands, I’m sure). I have a list of topics ready to enthrall you with over the coming months. I can sense your overwhelming excitement already!
On the off there is someone out there reading this, dare I ask if there’s anything inparticular you’d like me to discuss here on my blog? I’m open to all suggestions.
9/11/2016 ~ US Election Result: Trump triumphs over Clinton. A day many would rather forget!
11/11/1918 ~ A day we must never forget.
Today is 11th November 2016 ~ Armistice Day
It has now been 98 years since the brave soldiers of The Great War lay down their arms for the last time along the western front. Almost a century past, but now and always we will remember and give thanks for their selflessness, heroism and sacrifice.
On the 11th November 1918 the guns fell silent, and finally, four long years of fighting came to an end. The Armistice of Compiègne led to six more months of negotiations which resulted in the Treaty of Versailles, effectively concluding the First World War.
Sadly, conflict continues to rage on around the globe, with many lives lost every day to war.
Today, we should all take time to commemorate servicemen and women, past and present. It is our moral duty to show appreciation for all who have fought for our protection, for peace, stability and liberty.
9/11/2016 ~ Trump Triumphs
This week we enter a period of unprecedented political turmoil; a time of uncertainty, instability and division.
Of course, I’m (begrudgingly) referring to the newly elected President of the USA – Donald Trump. I have debated whether or not to acknowledge his recent victory on my blog, since it is such a divisive issue.
However, being a woman with a physical disability, I feel compelled to comment on his offensive attitude towards minority groups throughout his controversial campaign. On a personal note, I find it shocking and unnerving that a bigoted, misogynistic, ableist, racist, xenophobic, ignorant narcissist can acquire such popularity and power!
Although it’s true that Hillary Clinton won the popular vote, Trump is headed to the Whitehouse in January 2017, due to the arguably flawed Electoral College system.
The fact is, Trump achieved marginal wins in several large states, meaning that, like it or not, he will be the 45th President of the United States of America. We must now accept and respect the result and unite in an organised and peaceful manner, in order to move forward with positive intentions.
Violence and disorder has already broken out in America following the news of Trump’s success. People are wreaking havoc, causing damage and fighting each other in angry desperation. The widespread fear and distress is understandable, but nothing positive can be achieved from hostility.
1914 ~ Christmas Eve Ceasefire
Even in times of war, humanity will prevail and divisions can be broken down. The Christmas truce of 1914 demonstrates how opposing forces put aside their differences, if only temporarily.
On Christmas Eve, a ceasefire along the western front saw British and German troops greet each other in no-man’s land to exchange pleasantries, take photos, play football and bury their dead before returning to their trenches.
So, on this, Armistice Day, please look to and learn from the past, and move forward with love, positivity, unity and the best intentions.
A decision has been made, like it or not; Trump will be the President of the United States. We can’t and shouldn’t fight this decision. We need to offer support, goodwill and compassion to all. One day at a time.
All my life I’ve required care, whether it be from family members, friends or paid employees. For over a decade now I have been hiring assistants to help me with an array of tasks, including personal care. I have always chosen to recruit my own staff rather than use agency workers. This has given me much more flexibility in terms of when, how and for the duration of time I use my PAs. It also means that I know exactly who will be providing my care, which is not always the case when going down the agency route. However, with this comes the added responsibility of being an employer, which in itself can be rather daunting and stressful.
I’m in the fortunate position of having been gifted the best family I could ever hope for. I do appreciate though, that not everyone has the invaluable support of relatives to rely on. For these individuals their only option is to pay others, often strangers, to assist with their needs. Like me, they might advertise, interview and hire independently, paying for their care with council funded Direct Payments (available in England, Scotland and Wales). Alternatively they may decide to use an agency.
For others though, in times of desperation, they have no choice but to leave their residence and spend time in respite care. I know of cases where young people in their 20s have been placed in nursing homes for the elderly, where staff have no knowledge or experience of their condition and specialist needs. Personally I can’t imagine such an experience and count myself lucky that I’ve never had to resort to this.
Over the years I’ve had several carers (or personal assistants) – whichever label you prefer. For the most part, I have found them through friends, associates or word of mouth.
Several months back my longest serving employee had to leave for personal reasons. It came as quite a shock but couldn’t be helped. She worked for me for eight years and had seen me at my worst and most vulnerable. She is a good friend close to my age, whom I trusted and relied on, and so the news of her resignation was somewhat distressing. Thankfully she was good enough to stay until her position had been filled, which she was under no obligation to do. Nevertheless, I was abruptly faced with the immediate and unavoidable task of advertising for her replacement.
I was under no illusion that finding someone who could and would meet my needs was going to be a simple endeavour. It certainly was not. I’ve been casually told social workers, who carry out my annual Needs Assessment, to simply advertise and hire, as and when needed. As if I’ll be flooded by pools of applicants to choose from. Then again, I guess these social workers have never had to find people willing to drag them from their pit every morning and get them ready for the day ahead. Trust me it’s no easy undertaking when job seekers are sadly too often put off to discover that personal care does in fact mean personal care!
I placed ad’s everywhere I could think of; online and locally. After several weeks of limited interest, I arranged interviews with each candidate in the hope that at least one would be suitable. Most were let downs, failing to turn up without notice or changing their mind after showing initial enthusiasm. My expectations were raised only to be shattered.
I was surprised by the casual disregard and lack of consideration from some of the applicants. I spent whole days at home waiting for interviewees to arrive, as if I have nothing better to do. Is it really that difficult to send a text message or make a quick call to say you cannot attend for whatever reason?
Time was ongoing and I was increasingly aware that I would have to find someone – anyone – as soon as possible. I live rurally in a town populated by less than 10,000 and so inevitably I wasn’t getting as much interest as I might if I lived in a city. This was an incredibly tense and stressful time for me.
Although my carer had said she would remain with me until a replacement could be found, I knew it was too much to expect her to stay as long as it was taking. I couldn’t be without the care I needed to live my life – to simply exist. Yet at the same time I couldn’t find anyone to provide this care. I was facing an almost impossible challenge.
In the end it was once again through friends of friends and frankly sheer luck that I found someone to take on the essential role. I won’t lie, it’s been a difficult transition and my daily routine has had to adapt. But, several months on, things seem to be coming together and all the initial doubts and struggles have been ironed out. I do still worry about the future prospect of having to go through the whole hiring process once again. It’s an unenviable task but one that is an essential and unavoidable part of life for those of us with a disability.
I realise it’s difficult for those applying for positions as PAs to empathise with our unusual and complex situation. If you’ve never needed care yourself it’s understandably difficult to grasp the necessity and importance of the role of caregiver.
For this reason, I have written an open letter to carers and prospective PCAs (personal care assistants). It has been published on the Muscular Dystrophy Trailblazers website. If you’re interested to read the edited version of my letter, click here.
Open letter to carers
On behalf of all of us who require personal or social care, I invite anyone considering taking on the role of personal assistant to think carefully about what it really means before you do apply.
Firstly, this is not a choice for us. We’re not, for example, hiring a cleaner because we’re too busy or too lazy to clean our own homes. When we advertise for carers, it’s because we NEED them and not necessarily because we want them.
As physically disabled individuals, many of us cannot independently carry out essential everyday tasks such as washing, dressing and toileting. To have no option but to entrust such intimate activities to another person – a stranger – is unnatural and unnerving. We are in effect placing our lives in your hands when you take on the vital role of personal carer.
Recruiting carers can be a lengthy and extremely stressful process for us. There’s the initial worry over whether there will be any applicants at all, followed by the dreaded interview process.
We often find ourselves waiting around for interviewees to attend, only for them to carelessly fail to show without any notification. Please do bear in mind that just because we are disabled, like you we have lives too, so don’t waste our time. We appreciate there are valid reasons for failing to attend job interviews, but it’s no hardship making a quick phone call or sending a text message to let us know in advance. As you would with any potential employer, be professional and courteous.
If and when we are able to successfully recruit, it can be incredibly frustrating and disheartening when that person flippantly decides to resign days later. You may wonder how and why this can happen but the sad fact is that for many disabled people it is a reality. We are not afforded the luxury of being able to manage until a replacement is found. No, we can’t simply wait for the right person to show up.
Some of us even have to resort to respite and residential homes in the meantime, thereby taking us away from our own homes and everything we hold dear. Try to imagine if you will, how demoralising and distressing such a situation would be if it happened to you. I therefore reiterate how important it is to think before applying for a role as a personal carer.
Are you trustworthy, reliable, willing and able? Ask yourself: are you entering this area of work for the right reasons? Your role will involve a range of tasks and you will be responsible for the safety and wellbeing of your potentially vulnerable employer. So, if your attitude to care work is casual and indifferent, then this is most definitely not the job for you!
Well, it’s upon us again; Flu season is here. Every year my family and I get the Influenza vaccination, which is free of charge here in the UK, courtesy of the NHS.
For as long as I can remember, I’ve had the Flu jab to protect myself through the harsh winter months. It’s important that not only I am vaccinated, but that those closest to me are too. My immune system is much weaker than average, and my condition makes it considerably more difficult to overcome respiratory infections. For me, a common cold can quickly develop into something much more serious. It’s therefore very important that I am not unnecessarily exposed to the Flu virus.
As I have aged, my declining respiratory function has become the most concerning symptom of my disability. Ullrich congenital muscular dystrophy causes muscle degeneration and scoliosis. Not only are my lungs squashed and unable to expand as they should, the muscles that make them force air in and out are slowly wasting away.
Over the years, I have fought recurrent chest infections, several bouts of pneumonia, pleurisy and an acute pneumothorax (collapsed lung), requiring a chest drain. Many long, drawn-out days have been spent in hospital trying to overcome serious complications resulting from respiratory viruses.
For this reason, I implore and encourage you all to go and get the Flu shot. It takes no time at all and I promise you, it’s completely painless. There are fables floating around that will attempt to make you believe the Flu jab can give you the Flu. This is not the case at all. Yes, the vaccine does contain a small dose of the inactive virus. This triggers antibodies, which within two weeks will protect you, if and when you’re exposed to seasonal Flu.
Like all viruses, there are various strains of Influenza which change annually. For this reason, it is essential to ensure you are vaccinated every year.
I visited my local pharmacy, without appointment, a few weeks ago to get my free vaccination. If you haven’t already, please don’t delay. Go and get yours NOW!
For more information on the Influenza vaccine visit the NHS web page here.
Just a quick post today. As promised here are this years pumpkins. Unlikely to win any awards, granted, but not too shabby I reckon. They’ll do for me anyway.
Not one to put anything to waste, I thought I’d try my hand at making spiced pumpkin soup for the second time. The first and last attempt was a few years back, and so I decided it was about time to give it another go.
All you need to do is dice the pumpkin flesh into small pieces, chuck in a saucepan with a drizzle of oil and reduce down on a medium heat. Once softened, add onion, tomato purée, spices of your choice (no more than half a teaspoon) and a little double cream. Heat through, season to taste and blend for a smooth texture.
Do excuse the ice cream pot folks. This is going home with my brother so that he can warm it up for his supper. What a wonderful sister I am!
As suggested in my previous post, I chose to simply roast the pumpkin seeds for 20 minutes. Served in a snack bowl for a light bite on Halloween night, you can’t go wrong with this easy treat.
Admittedly I’m not looking forward to the dark days and frosty nights that winter will surely bring. The invigorating colours of autumn will be greatly missed, as will the mild temperatures we’ve experienced of late. Nevertheless, embrace it and face it I say, after all it’s headed our way.
Will you be sad to wave goodbye to October, or are you counting down the days to Christmas now that Halloween is almost over for another year?
I love Halloween, always have always will. I can’t explain exactly why I love it so much, after all nothing particularly exciting happens. I guess it just appeals to my inner child. Either that or it’s my curious fascination with the macabre! I’ve never attended a themed party nor have I been trick or treating as a kid. My parents are quite conservative and so wouldn’t allow myself or my brothers to go “bothering people for treats”.
As an adult I’m more of a ‘cosy night in’ type anyway, so my ideal Hallows’ eve involves cosying up in front of a wood burning fire with a hot chocolate, a scary film and the lights out. Wild eh!
Black dog in place of a black cat?
I must admit I really don’t scare easily. I find most horror films predictable and silly rather than spooky. I can honestly say I’ve never watched a film that has genuinely frightened me. However, when channel flicking one night, by chance I caught one that made a memorable impression…
Saw (2004) Dir. James Wan
This is the first film by Aussie duo James Wan and writer/actor Leigh Whannell. On a minimal budget they made this really clever and creative film that has spawned a whole franchise.
The basic plot sees Oncologist Lawrence (Cary Elwes) and photographer Adam (Whannell) wake up in a filthy, dilapidated bathroom, both chained to pipes at opposite sides of the room. Between them lies the corpse of a man who holds in his hands a revolver and a cassette player. The two men soon realise that they’re only way of escape is to play along with the game set by the sadistic ‘Jigsaw’ killer.
Personally I wouldn’t bother with any of the sequels; as you would imagine they’re rather unimaginative and repetitive. However, the original Saw has a simple but great premise and a shocking concluding twist that will leave you gripped to your seat.
*Tip* if you have the patience to sit through a whole movie commentary, I thoroughly recommend you check this one out. An informative and animated discussion including impressions and plenty of laughs; you will see this psychological horror film from a whole new perspective.
Hocus Pocus (1993) Dir. Kenny Ortega
If you’re looking for a fun family film, you can’t beat this classic starring Bette Midler. Although it’s been over 20 years since it was made, it hasn’t dated and is still just as enjoyable as it was on its initial release. Midler, Kathy Najimy (Sister Act) and Sex and the City’s Sarah Jessica Parker, as the three witches are the standout attraction. Jam-packed with music, magic, adventure and plenty of laughs; both young and old will revel in the delights of this Disney experience.
If nothing else, you’ve got to carve a pumpkin for Halloween! It’s something simple you can do, especially with children, to partake in the seasonal celebrations. It’s fun, messy, creative and cost effective. To me it’s the first thing I associate with Halloween and as such my family and I carve one every year. We always intend put the removed flesh to good use, though we rarely do. My brother and I did make pumpkin soup a couple of years back which seemed to go down well!
Other pumpkin recipes you might want to consider include, of course, traditional pumpkin pie, as well as muffins, smoothies and even ice cream. A member of the squash family, you can also dice it into chunks and roast or bake it. You could use it in curry, casserole and risotto or carve out smaller pumpkins and stuff them with whatever you fancy; a slight variation on stuffed bell peppers.
And don’t forget the seeds! Pumpkin seeds are highly nutritious, containing iron, heart healthy magnesium, copper, manganese, protein, antioxidants and zinc for immune support. Naturally high in fibre and omega-3 oils, they’re hugely beneficial and easy to incorporate into your diet. Roast for 20 minutes for a quick and easy snack on the go, sprinkle over salads, porridge and muesli. You could add a few to your cakes, flapjacks and stews for extra crunch, make some pumpkin seed loaf, or you could simply blend until smooth for your very own pumpkin seed butter.
So when you’re eagerly carving away, please don’t cast aside the gift that’s inside. Proven to help the heart, liver and the immune system, these little seeds also act as an anti-inflammatory, a sedative for a good night’s sleep, and an insulin regulator. Essential for men and women, they have been found to promote prostate health and suppress menopausal symptoms. See, Halloween can actually be good for you!
I’ve not yet bought this years pumpkin so once it’s carved and ready for display, I’ll post some pictures for you. Every year I attempt a different design but for the moment I’m undecided which way to go. I warn you in advance though, limit your expectations (I can sense the excitement already). As previously mentioned, I have a muscle wasting condition and so must work within my means. I’ll not be producing anything too adventurous.
I’d love to hear all about your Halloween plans. Do you enjoy it as much as me or are you the type to shut the curtains and ignore the trick or treaters tapping at your door?
I’ve always been a bit of a movie buff. Though I enjoy a good book every now and then, I’m not a big reader.
Every year, I try to encourage myself to read more. But sometimes, after a long day, it’s so much easier to watch the film adaptation.
When I caught the trailer for the recently released film, The Girl on the Train, I decided to read the best-seller before allowing myself to see the much anticipated film.
Warning: This review contains spoilers!
Hawkins’ psychological thriller is narrated by three women: the eponymous Girl, 32 year-old Rachel Watson; Megan and Anna.
Rachel is a reckless alcoholic who divorced Tom following his affair with the beautiful Anna, whom he later married and fathered a daughter with. The Watsons now live in the house he once shared with Rachel, while she is forced to rent a room in the home of her friend Cathy.
Every day, Rachel takes the train from Ashbury to London, claiming she’s commuting for work when, unbeknownst to Cathy, she lost her job due to her excessive drinking.
Her days, like her commute, represent the typical monotony of life as an alcoholic. A dependence on gin and tonic in particular leads to blackouts, aggression, injury and memory loss.
Rachel’s daily journey passes Blenheim road in Witney where she lived with Tom, offering her a passengers’ insight into his new life. Seemingly obsessed with her former husband, she continually harasses him and Anna to the extreme; calling and even visiting their residence unannounced.
A few houses down from the Watsons, live Megan and Scott Hipwell, an attractive young couple on whom Rachel becomes fixated. She watches them from the train and invents for herself an idealised version of their life, investing in them, in their love for each other and in their perfect marriage.
So, when Rachel sees Megan kissing a man other than her husband, her illusion is shattered. Angry and disappointed, she spends the night binging, then wakes in a bloody and bruised state with no memory of the night before.
It soon transpires that Megan Hipwell is missing, and having seen Rachel drunkenly stumbling around the area on the night in question, Anna reports her to the police. Rachel denies any knowledge of Megan yet feels instinctively that she is somehow involved, and so she conducts a self-led investigation.
She later decides to report having witnessed Megan with the unidentified man, suggesting they were having an affair and that he must therefore be involved in her disappearance. She meddles further, contacting and lying to Scott about having known Megan, and learning that the man in question is Kamal Abdic, Megan’s therapist.
Disturbed by her blackout and intent on piecing together the series of events surrounding what evolves to be a murder; Rachel finds a much needed purpose.
It emerges that Megan was pregnant at the time of her death, though neither Scott nor Kamal are the father.
Anna, despondent at the persistence of Rachel’s presence and harassment, begins to question Tom’s reluctance to report his ex-wife to the police. She uncovers a spare mobile phone belonging to Megan and realises that her husband, like Kamal, had also been having an affair with her.
Increasingly able to certify her own memories, Rachel not only unveils facts about the night of Megan’s disappearance, but also about her former life with Tom. A skilled manipulator, he had blindsided Rachel for years, causing her to believe his accusations and blame herself.
When unable to conceive, he betrayed her by sleeping with Anna, and then proceeded to cheat on Anna with Megan who became pregnant with his child.
Rachel seeks to warn Anna at the family home, but Tom returns and a violent confrontation ensues, the result of which sees both Rachel and Anna participate in Tom’s death.
We learn that what Rachel had seen that night in her drunken stupor was Megan getting into Tom’s car. Thinking initially that it was Anna and not Megan, due to their uncanny resemblance, Rachel called after her and incurred her injuries when Tom approached and attacked her. Following this, the car drove away to obscure woodland where Megan informed Tom of her pregnancy. Unable to pressure her into pursuing an abortion, Tom murdered and hurriedly buried her in a shallow grave.
A first-person narrative told from the point of view of three interwoven women, I personally found the novel a fairly easy read.
Each chapter is voiced by Rachel, Anna or Megan, and as such, the perspective changes considerably, along with the dates; posing the only minor challenge for the reader.
At times, the pace was a little slow and drawn out, mainly throughout Rachel’s chapters, though this serves to represent the drudgery of her purposeless existence. She’s a divorced, unemployed, alcoholic and like her pointless daily commute into London, her life is headed nowhere.
However, the pace and tension picked up substantially in the final third of the book. A dark and dramatic conclusion rooted in the realms of reality will maintain your attention and keep you enthralled to the last.
A heavily character driven plot, every individual we meet is flawed and hard to really care about. I sympathized with Rachel’s downfall; her life having disintegrated following a failed IVF attempt and her husband’s affair.
After Tom marries the much more beautiful Anna, with whom he has a daughter, Rachel completely lets herself go. Reason enough to reach for the bottle, or in this case a can of gin and tonic!
But as her obsession with Megan’s case unfolds, her increasingly extreme actions stem from pure desperation and loneliness.
Her erratic behaviour and confused recollections cause both she and the reader to suspect that she could be the killer. Nonetheless, I have to admit that by just over half way through, I correctly judged that Tom was the guilty party. It seemed to me that any of the other characters would have been too obvious.
Inevitable comparisons have been made with its recent predecessor, American author Gillian Flynn’s Gone Girl.
Though understandable, The Girl on the Train, or more accurately, the woman on the train, is a much less sensationalised psychological thriller.
Furthermore, it is a thoroughly British psychological thriller touching on themes such as voyeurism, addiction, the psyche and even Feminism.
Directed by American, Tate Taylor, the film, starring British actress Emily Blunt, is set in New York as opposed to London.
Blunt, as Rachel, travels the Hudson line to Manhattan, and leafy Westchester takes the place of the Victorian town of Witney.
We see our anti-heroine drinking in Grand Centrals iconic Oyster Bar rather than raiding an off license for pre-mixed cans of gin and tonic, as in the novel. Even Central Park is featured, specifically the Untermeyer Fountain and its sculpture of three dancing maidens; a physical representation of the three female voices.
Consequently, the stop-start nature of London’s rail works and the sense of hustle and bustle is lost in the film’s glossy New York scenery.
Whereas I had envisaged a grittier, greyer world more reminiscent of ITV’s Broadchurch; Tate Taylor’s reimagining presents a moodier, more sexualised James Patterson vibe.
The characters in the film are underdeveloped and their traits and actions are never fully explored. There’s far too much ‘Hollywood’ posing and, as a result, they lack dimension, humanity and are less sympathetic than Hawkins’ inventions.
I think, had I not read the book first, I would have struggled to follow the events as depicted on the screen, since so much detail has been casually brushed over.
For example, Megan’s dead brother Ben, whom she loved dearly and made future plans with, is briefly mentioned only once.
As much as I love Emily Blunt, she is a far cry from Hawkins’ creation. She certainly doesn’t have the physicality to portray an overweight, bloated, lacklustre binge drinker. As Hawkins herself says, she is far too beautiful.
Blunt retains her English accent, presumably to hark back to the story’s original setting. Then again, perhaps it was just easier than adopting the Manhattan drawl?
That aside, Blunt gives her all and offers a convincing portrayal of a woman on the edge. Hers is by far the standout performance. For the most part, all characters are well cast, though some such as Edgar Ramirez who plays Kamal Abdic are somewhat underused.
Overall, I’d recommend saving your money on a cinema ticket. While it’s worth a watch, I feel this was a missed opportunity.
Had the filmmakers followed Hawkins lead more closely in terms of tone, setting and character focus, it could have received the same applause as David Fincher’s Gone Girl.
By all means indulge in the novel, you won’t be disappointed! If, like Rachel, you are a daily commuter, maybe even consider reading it on the train for added effect.
I have so many ideas buzzing around my head for future blog posts, but as yet no specific aim or objective. This blog, at present, lacks a specific purpose and serves no function other than to allow me the space to vent. However, in time I hope that I may also be able to advise others in a similar position. By this I mean I endeavour to help, support and share information with others living with muscular dystrophy. I’m not in any way professionally qualified to counsel on this topic. All I have to offer is my own personal experience, that being almost thirty years with me, myself and Ullrich congenital muscular dystrophy. I will get to the ins and outs of how this condition affects me at a later date, but first I feel I should explain my reasoning behind the naming of my blog.
So, why ‘Life on the slow lane’? Well first of all, I don’t walk. At all. I roll. Let me clarify, I’m not a skateboarder, a rollerblader, a cyclist or a car enthusiast. I’m a wheelchair user. My chair of choice is the Quantum 600 powerchair by Pride Mobility. It allows me to go wherever a 16+ stone wheelchair can go. But it can only move at a maximum velocity of 5mph. This limited, ambling pace can be considered a metaphor for my life.
I regard myself to be living life on the slow lane as everything I do takes at least twice as long as it would an able bodied person. Being non ambulant does not lend itself to speed or spontaneity. Every task, however insubstantial, requires careful consideration, support and time. From washing and dressing, to eating and travelling, every activity depletes both time and my meagre energy reserves.
I would love to be one of those carefree, go with the flow types. You know the kind; those people who are seemingly fazed by nothing, never forward plan and simply take life as it comes. But I can’t. I see them cruising along, living life in the fast lane, taking risks and seeking adventures unknown. I see them fly by me as I trundle along in my slow lane.
My body is weak and fragile, and consequently I can’t afford to be daring or gamble with my health. For instance, catching a cold for your average Joe is an annoyance yes, but it passes after a few days and it isn’t a cause for concern. If I catch a cold the consequences are severe and potentially life-threatening. Sounds dramatic doesn’t it! But because my condition affects my respiratory function, a simple viral infection can and has on multiple occasions led to complications including pneumonia, pleurisy and pneumothorax (collapsed lung). Many days and nights have been spent on hospital wards and in ICU; time seeming to slow with every tick of the clock. You know how they say time flies when you’re having fun? Well it drags like Hell when your sole focus in life is to just keep breathing.
My disability has effectively prevented me from flooring the accelerator pedal and pursuing my wildest childhood dreams. I’ll never be able to book a flight on the spur of the moment, jump on a plane and jet off to some mysterious destination with only myself for company. I’ll never experience the thrill of running to the edge of an exotic waterfall, to then dive into its frothy waters without a care in the world. I’ll never have children and since UCMD is progressive, I won’t reach old age. On the contrary, my life is slow, monotonous, routine and unexciting.
Don’t get me wrong, by no means am I saying that being confined to a wheelchair is not synonymous with leading a happy, fulfilling lifestyle. I can only speak from personal experience and how my condition has impacted on me. There are so many things I desire to do but cannot. Sometimes I get frustrated and wish I could get up & go for a country walk to let off steam. It would be such a relief to grab a quick shower whenever I want and not at a regimented time. I will lie awake until 3 o’clock in the morning, wishing I could drag myself out of bed to make a midnight snack. But I can’t because I’m stuck on that slow lane.
This is the card I’ve been dealt and that’s ok; I’ve adapted and learned to live within my means. I do what I can and I enjoy what I do. I have the wackiest and most wonderful family anyone could hope for, and an eclectic band of friends! I appreciate that this is more fortune than a great deal of others ever experience, and for this I’m thankful. My loved ones more than make up for missing out on living life in the fast lane.
My first article for Disability Horizons lists the ‘The Top Ten Apps for Disabled People’.
New apps are being developed everyday. But for the time being, here are my recommendations.
For the past decade, I have been involved with Muscular Dystrophy Trailblazers. I wrote a piece about my life with Ullrich congenital muscular dystrophy, which you can read here.
The Channel 4 show The Undateables has proved highly controversial and divisive, particularly within the disabled community. Read my take on the debate here, which also features on the MD Trailblazers website.