Tag: About Me

Moving forward | Goodbye 2016, Hello 2017

Hey folks, I hope you’ve all had an amazing Christmas and New Year. If not merry, I hope it was at least peaceful.

I thought I’d start 2017 on a positive note by reflecting on the past year and all the things I’m thankful for. Now I’ll be honest, I’m not a naturally optimistic person. I can be a right grumpy bint at times. But I’m trying to, as they say; look on the bright side of life. After all, negativity only leads to bitterness and however wronged you may feel at times, believe me life is far too short for bitterness.

2016 has been a fairly uneventful year for me. There have been ups and downs but for the most part it’s been significantly better than previous years. It’s the little, seemingly insignificant things that I’m most grateful for.

To put it bluntly, my twisted body is a bit of a bastard and does not allow me the support I need to function fully. However, it’s dainty and lightweight, making me easy to chuck around, which I am regularly. For this I am fortunate as my petite stature allows greater and easier mobility. Had I followed my 6’4” older brother for height, life would undoubtedly have been far more difficult practically speaking.

Apart from a cold in June just before my week-long holiday to Spain, I haven’t been worryingly ill since summer 2015. During that period I spent over 8 weeks sat in an armchair in the living room, unable to go to bed or lie down due to a severe chest infection and subsequent pleurisy. I was a mess! From the beginning of May to the end of July I didn’t leave the house once, except for a trip to the hospital for tests. But let’s not dwell on that upsetting and difficult time…

The trip to Salou in Spain, was a much needed retreat from the monotony of everyday life. I holidayed with my parents, which obviously isn’t the dream, but fortunately we have a great relationship and so we muddled along nicely. It’s rare that I travel since I find it so difficult with the severity of my disability; therefore the sun, sea and sand was all the more appreciated.

Although we have our inevitable squabbles, my family are the best I could wish for. However, through talking with others in a similar position, I’m increasingly aware of those with disabilities who do not have the support of relatives. Consequently, they may feel lonely, isolated and unloved. Without family members to rely on, they are dependent on paid assistants to provide their personal care. Though I do employ two PAs myself, my parents remain for now at least my primary caregivers. A small, tight-knit family, we laugh a lot and perhaps most importantly we are comfortable in each other’s company. It’s only when I consider how different life could have been had I been born to different parents, that I realise just how lucky I am.

In spring 2016 I hired a new PA after my carer of eight years had to leave for personal reasons. As many of you will empathise, the recruitment process can be a stressful one. Adapting to yet another stranger providing your personal care is uncomfortable and unnatural but thankfully for me this particular transition was relatively trouble free. I won’t lie, it took a while to adjust and establish a new routine that worked for us both, but we get on well and she fits into our household effortlessly.

On the topic of family, ours would not be complete without our aging black Labrador, Millie. I have never known life without a pet. At one point we had four dogs and two cats living with us. Yes it was a little chaotic at times but always the best kind of chaos. I wouldn’t have changed it for the world.

Millie turned thirteen on Friday 30th December and is now depicting all the signs of senescence. Currently our only pet, she has been with us from birth since her mother, a golden Labrador, also lived with us. A great comfort especially in times of distress and frustration, I will be distraught when we do lose her. I’m therefore extremely thankful that she is still with us, as she is an invaluable source of company and happiness.

Finally, I’d like to acknowledge my blog. It’s a relatively new venture, having only begun in October. But to my surprise and delight, I’m already reaping so many rewards. I have been introduced to people from all over the world who empathise with my thoughts, feelings and experiences regarding life with muscular dystrophy. I have also received positive feedback from complete strangers which has thoroughly boosted my confidence and determination.

I’ll admit I was at first somewhat reluctant to attempt blogging and spent several months debating whether I should. It was only the persistent encouragement from friends that convinced me to finally give it a go. And so it is to all my friends, both old and new, that I owe my final thanks of the year. I hope these alliances will continue to strengthen throughout 2017 and that I may meet more likeminded individuals. Here’s to the New Year…

Life Update & Thanks

Hey folks, hope you’re all happy & well. Sorry to begin on a negative note. I won’t sugar coat – the past couple of weeks for me have been pretty shitty. In that time I’ve seen a urology nurse specialist, a continence nurse specialist, and a urology consultant. I’ve chased GPs on the telephone, attended a pre-operative assessment, and on Friday I had surgery under general anaesthetic. So, todays message will be brief as I’m not feeling entirely human right now. No photos either I’m afraid, as I currently look like the Crypt Keeper, and trust me no one wants to see that!

It has also been a sad time due to a family bereavement; two days before my birthday, a relative, aged just 15, died from neurofibromatosis type 1. This is a very rare and little-known condition. My knowledge of it is limited, and so I refer you to this website if you wish to learn more.

Furthermore, two days after my birthday is the anniversary of my Nans death. So, all things considered, sadly I have not yet felt inclined to enter into the festive spirit. But I will now make the effort to try. Mum has already decorated our home both inside and out with lights and wreaths. Yesterday she and Dad put the tree up – a real one as always. You can’t beat a real tree (IMO)!

To end more positively, I’d like to say thank you for the overwhelming response to my last post: My life with Ullrich congenital muscular dystrophy. I hoped, but honestly never expected anyone to read it, let alone relate and respond to it. The feedback I have received, particularly on Facebook, has been so kind and supportive. Your response has given me the much needed confidence to continue blogging. So, I thank you all, sincerely.

My Life with Ullrich Congenital Muscular Dystrophy

Allow me to introduce myself.

I’m Carrie, born in 1988 with the rare, genetically-inherited condition Ullrich congenital muscular dystrophy.

“What’s that?”, you ask. Let me explain…

The congenital part means that it is present from birth. Ullrich is just one subtype of congenital muscular dystrophy. It is also progressive and life-limiting, meaning that symptoms become gradually worse over time.

There are, according to the muscular dystrophy UK website, over 60 forms of muscular dystrophy. The severity is wide-ranging.

In recent years, I’ve learnt that the number of people, worldwide, living with muscular dystrophy, is far greater than I previously thought. Social media has introduced me to many – some of whom I’m fortunate to call friends.

Through discussions with fellow MD‘ers, I’ve realised that our symptoms and experiences differ significantly.

Despite what some medical professionals believe, there is no definitive check list! For example: ‘everyone with UCMD will be affected by X, Y, Z at this age, and they will not live beyond 40 years old‘. This is simply not the case.

A Brief Introduction to Muscular Dystrophy:

  • 70,000 people with MD in the UK
  • Affects 1-1000 people
  • Genetically inherited muscle wasting condition
  • Progressive
  • There is currently no cure for MD
  • There are many forms of MD – over 60
  • The most commonly recognised is Duchenne MD
  • UCMD is a type of congenital MD. It affects c.50% of the 400-500 people with CMD
  • UCMD is caused by the lack of a vital protein needed to support muscle cells.

 My Experience:

  • Born with dislocated hips and ‘floppiness’. At 2 weeks of age I was put in plaster for 12 weeks to realign my hips. 20161130_211543
  • I didn’t crawl, climb or walk at the normal rate. From around 7 months old, I ‘bum/belly shuffled’. I started to walk at 19 months old. My parents were very much aware that something wasn’t right, and so they pushed for a specialist referral. My mother was told by her GP that she was an “over-reactive mother”!
  • 4 years old – muscle biopsy performed by Dr Helen Roper at Birmingham Heartlands Hospital. I was diagnosed with congenital muscular dystrophy. 20161130_213022
  • My parents were told VERY little – only that I would experience overall muscle weakness but mental ability would not be impaired. Doctors didn’t know if or how my condition would progress, nor if it would stabilise following puberty. They didn’t know if I would ever need to use wheelchair.
  • I wore specially made leg splints as a child, enabling me to walk short distances around the house and school.
  • For longer distances, I used a ‘buggy’ or manual wheelchair.
  • I have never been able to walk up or down steps or stairs.

  • At age 7, I had my tendons released in both feet and ankles as they were turned inwards. Following the operation, my feet were held in position in plaster casts for 6 weeks.
  • I stopped walking quite abruptly at age 10. At the time, this was unexpected and incredibly distressing for both me and my family.
  • I became non-ambulant and started to use a powered wheelchair. We raised the money for my Jazzy Pride electric wheelchair through sponsored events, charitable donations, fundraisers and public appeals; my story was put in newspapers and school newsletters (this was pre-social media, folks!).
  • I then stopped wearing the leg splints as I was no longer walking. I could finally wear nice shoes!
  • From around 11 years of age, I began to wake every morning with debilitating headaches and nausea. Many years later, we learnt that this was due to a nocturnal build up of carbon dioxide in my body, having failed to effectively expire the waste gas during sleep.
  • From the age of 4, I had 30-60 minutes of physiotherapy once a week at school. This mostly involved stretches to maintain what flexibility I had, but physiotherapy came to an end when I turned 14. Literally, one week my physiotherapist was there, and without a word of warning, the next week she wasn’t. I was then told that if I wanted to continue with my physio, it would have to be carried out by parents or a carer.
  • Following a second muscle biopsy at around the age of 18, my diagnosis was narrowed down to Ullrich congenital muscular dystrophy. At the time, this really didn’t mean anything to me. I didn’t learn anything new and nothing changed. It wasn’t a case of; we’ve defined it as UCMD which means we can give you this treatment. There is no cure for muscular dystrophy. And so, I just carried on with my life as I had been.20161130_212939
  • I attended mainstream school before moving on to a Sixth Form College where I completed A-Levels in Fine Art, English Language and History. I then attended a local university, commuting everyday via taxi. After three years I achieved a BA (Hons) degree in Art and English Literature.
  • I have a significant ‘S’ shaped scoliosis (curvature of the spine). This became much more severe following the growth of puberty.
  • At around the age of 9, my parents and I were told I would need a spinal fusion to correct the scoliosis and prevent any further curvature. Again we were given very little information, no case study to refer to, and little time to make a decision. I do remember vividly how the seriousness of the operation was emphasised. In particular, “you could die!” stuck in my infant mind. In the end, we decided not to go ahead with the spinal fusion.
  • Scoliosis affects posture, balance, respiratory function and causes pain, discomfort, pressure sores and asymmetry of the torso.
  • It is very difficult to find clothes that fit because of my lumbar deformity.
  • Because of the scoliosis, my torso is squashed, and so too are my organs. This means that I become full, bloated and breathless after small quantities of food.
  • I have contractures of the joints & tightening of the tendons in my ankles, knees, hips, elbows and wrists.
  • Due to the weakness in my neck, I’m unable to lift my head from a pillow when lying flat.
  • I cannot sit myself up from a lying down position or support my own weight at all.
  • I’m unable to transfer independently, and at only 5.5 stone (77lbs) I’m usually lifted manually or otherwise hoisted.
  • I can’t turn or adjust my position in bed.
  • Because my movement is limited and I cannot exercise, I have poor circulation and very cold hands and feet. Corpse feet as I refer to them!
  • It is difficult for me to regulate my body temperature.
  • October 2011 – I opted to have a suprapubic catheter for practical reasons. I have no functional continence issues. Purely due to the severity of my contractures, muscle weakness and inability to transfer, there’s no other way for me to independently go to the loo. My SPC (suprapubic catheter) means that I no longer need the assistance of anyone else to carry out this personal task. Boys, don’t get me started – you don’t know how lucky you are!
  • I currently live with my parents in their house. I have a ground-floor bedroom and ensuite bathroom extension, built when I was 12 years old. My parents received a grant towards the cost but were means-assessed, and so they had to extend their mortgage in order to fund the excess! Prior to that, I had a bedroom upstairs which I accessed via a stairlift. Having lost the ability to walk at age 10, struggling up and down stairs and on and off the stairlift became impractical, hence the need for a ground-floor extension.
  • My parents remain my primary carers, although I also employ several part-time carers/PAs to assist with personal care throughout the week. This is council funded via Direct Payments.
  • As I have aged, my declining respiratory function has become the main cause for concern. Chest infections have become worse and more serious as a result.
  • A frequent hospital inpatient, I’ve had pneumonia more than five times, pleurisy twice and a spontaneous pneumothorax (collapsed lung) which required a chest drain.
  • Following a particularly bad bout of pneumonia in March 2012, I commenced nocturnal non-invasive ventilation. I use a Resmed Stellar 150 biPAP machine with the Resmed Swift FX Nano nasal mask.
  • NIV (non-invasive ventilation) ensures that oxygen and carbon dioxide levels are regulated. I no longer suffer from CO2 induced headaches or nausea.
  • Medication and treatments: BiPAP machine (NIV), Salbutamol inhaler, antibiotics on repeat prescription to treat chest infections, and I have a Nebuliser with saline and Salbutamol nebules to use when ill.
  • I now experience constant physical exhaustion and extreme fatigue.
  • Although my condition is progressive and life-limiting, there’s no way to determine exactly when my time is up. No doctor could predict what age I can expect to live to. As such, I prefer to put this to the back of my mind and try to live as ‘normal’ a life as possible. Whatever “normal” is!carrie-aimes-recent_with-permission

Doctors, though essential, cannot tell you how it feels to live with UCMD, or what day-to-day life is like. This is why I really appreciate the MD Facebook groups and the MDUK forum. People are free to talk openly with others who understand exactly what they’re going through.

If, as a child, I had known others living with the same condition as me, perhaps my life could have been enhanced with the benefit of shared knowledge.

The Girl on the Train: British Book vs. American Adaptation

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!


Plot:

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.

My Thoughts:

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.

Movie Adaptation:

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.

Why ‘Life on the slow lane’?

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.

Guest Posts | All Articles

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.

2009: My first involvement with Muscular Dystrophy Trailblazers.
My interview with actor James Moore, for the March/April 2019 issue of Able Magazine

Please follow me on Twitter and Facebook