Interview | Janine Shepherd

Here is my latest interview, with Janine Shepherd, for Disability Horizons.


Janine Shepherd: a broken body is not a broken person

Former elite athlete and celebrated author, Janine Shepherd shares her inspirational story in the best-selling memoir, Defiant: A Broken Body is not a Broken Person. It chronicles her journey following a tragic accident that cut short her bid to compete in the 1988 Calgary Winter Olympics. Partially paralysed and suffering life-changing injuries, Janine made the courageous decision to let go of her former life and face adversity head-on, creating a new dream for herself.

Here I speak to Janine about her journey, the challenges she has faced and how she’s reinvented herself and her outlook.

Hit by a truck in 1986 during a bicycle ride in Australia’s Blue Mountains, Janine was not expected to survive. Told by doctors that she would never walk again, nor have children, she spent the next few years rehabilitating her permanent disabilities and defying all the odds.

A mother of three, best-selling author, public speaker, aerobatics pilot and the first female director of the Civil Aviation Safety Authority, Janine speaks candidly and with humility about how and why she reinvented herself and changed her self-perspective.


Janine, please tell Disability Horizons readers about your disability and how it continues to affect you.

The accident gave me severe spinal cord injury – I broke my neck and back in six places. After extensive surgery and rehabilitation, there was just about enough nerve connectivity to be able to learn to walk again, albeit with a significant limp.

Now, in addition to significantly wasted lower leg muscles, I have limited feeling from the waist down and chronic bladder and bowel dysfunction. I also have to self-catheter a lot, which results in regular urinary tract infections. Your readers might agree that these issues are possibly the worst part of living with spinal cord injury.

‘Janine the machine’ is how you referred to your old self – the elite cross-country ski racer. Do you feel this remains a true representation of your character? If not, how would you now define yourself?

Even though I felt that my body was ‘broken’ after my accident, I realised that my spiritual essence and mental toughness remained unchanged. I soon learned that being ‘Janine the machine’ had less to do with athletic prowess than unshakeable determination and persistence. Recognising that gave me the strength to reinvent my life in a most remarkable way.

Following the accident and being unable to walk, you focused on learning to fly. In your book, you state: “I had to find something to replace what I had lost in my accident”. Why was it so important to set yourself such an ambitious goal?

We often define ourselves by things outside of us – our jobs, our relationships, the roles we play in life. When we lose those things, who we are and everything we believed in is challenged. When we experience such immense loss in life, whatever form it may take, it is very easy to slip into despair, which is what happened when I got home from the hospital. Flying filled me with so much joy and gave me the inspiration and hope that I really could rebuild my life in an unlikely and extraordinary way.

The feeling of despair was almost inevitable. You state that you suffered depression on returning home after a six-month stay in hospital. How did overcome this?

I overcame the despair by throwing myself into flying as well as my physical therapy. At first, this was more discipline than it was a spiritual or emotional triumph. I simply interrupted the pattern of depression by charting progress on all fronts, no matter how incremental it may have been from one day to the next. This helped to refocus my life and channel my depression elsewhere. Hope and application proved to be powerful antidotes to depression.

You discuss your choice to keep fighting versus letting go and accepting not only your body but also the circumstances. This led you to stop asking “why me?” but rather, “why not me?” Why was it so essential to change your perspective?

Before my accident, I had led a very narrow life in that all of my friends were athletes of some sort. In hospital, I met so many other people, whom I would normally not have met. This opened my eyes to the fact that I wasn’t alone on this journey.

Even though we came from very different walks of life, we experienced similar struggles with acceptance and recalibrating how to live life post-recovery. Equally important, we had in common the typical hopes and dreams of anyone for a ‘normal’ life once we left the spinal ward.

You have faced great adversity on a number of occasions. Having rebuilt your life following your accident, you then later experienced the upheaval of divorce and financial ruin. What gave you the strength to once again thrive and persevere despite these challenges?

I developed a philosophy very early on in my days as an athlete called ‘loving the hills.’ One of my racing advantages was that I took on the climbs my competitors dreaded with a passion. That not only made me physically stronger but mentally tougher as well.

This proved to be more than just a training philosophy; it became my choice as a way seeing and living life. Ski races and life experiences are both full of hills; loving them not only gave me a competitive edge but also developed my resilience. So when faced with a life challenge that, metaphorically, looks insurmountable, I take that on as just another ‘hill’. Loving it, not fighting it, teaches me the lessons I need in order to grow into a wiser and more compassionate person.

One of the themes of your book is the concept of disability. You emphasise the importance of believing in the power of potential and adopting a defiant mindset, so that one may not be defined by their physical limitations. Can you share your outlook on disability?

I went from being a gifted, multi-sport athlete to having to relearn how to walk. So, it took me years to finally and fully accept that I am a woman with a disability. At first I felt embarrassed by many aspects of my spinal cord injury, bladder and bowel dysfunction.

However, as I look back and see how much I have achieved, despite my challenges, and how much I have overcome, I feel like the aspect of loss in my life is no longer something to try to hide. Instead, I’m proud of being able to acknowledge my disability and put my energy into making the best use of my gifts.

Despite your many life-altering setbacks, you write with great humour, humility and encouragement. How have you managed to maintain such a positive and empathetic attitude? And do you feel that humour is important in maintaining a healthy outlook?

I absolutely feel that being able to laugh at life is an essential part of the healing process. I tell others not to take life too seriously or you’ll cloud the experience. There are so many documented mental and physical health benefits of laughter. Humour helps me to deal with chronic pain, something that remains a part of my life on a day-to-day basis.

You state that the loss of your athletic career and your physical limitations ultimately allowed you the freedom to embrace life’s potential and infinite possibilities. This is a remarkably refreshing and open-minded viewpoint. How have you ensured that you are defined by your accomplishments rather than your broken body?

I believe that life is about loosening our grip on the things that we feel entitled to. Many of the ancient teachings state that this only leads to suffering. When we let go of the life that we feel we should have, we gain the freedom to see the world through new eyes, and create a more ideal life we can only then envision. This is the gift that comes from realising that life is not about having it all, but loving it all, even the painful parts.

Finally, what do you hope readers will take away from your memoir?

I believe that each of us serves both as companion and as mirror to those we meet along the way. When we accept that we are not alone on our journey, and just how precious and short it is, we become open to seeing the world from a perspective of love and hope.

We then understand that, despite the inevitable life challenges, we always have the choice to reinvent our lives and embrace the new with a sense of wonder and joy. My sincere wish is that my story helps each reader better connect with his or her defiant human spirit. And, that doing so serves to foster the pursuit of the uniquely rich, extraordinary life that awaits every one of us.


I would like to sincerely thank the wonderful Janine Shepherd for speaking with me.

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Life Update ~ Carers, Hoists and OT’s

Hi folks, I hope you are all healthy and happy.

I feel like it’s been a while since I blogged about the goings-on of my day-to-day life. Not a particularly exciting post, granted. But I thought it might be useful to share these ‘goings-on’ with you, as I’m sure there are some of you facing similar struggles.

I have for the past few months been occupied with life crap – specifically, disability-related life crap – which has meant that blogging has unfortunately had to take a backseat.

Righty right, I’ll try and keep it brief…

Care

As some of you may know, I live with my parents who are my primary source of support. I do have a part-time carer who I employ, but otherwise my Mom (yes, I say Mom vs Mum) is my main caregiver. Sadly she herself suffers with progressive osteoarthritis, and following exploratory surgery in October, it was decided that she needed a full knee replacement.

This in fact took place on Sunday 20th August, although it wasn’t until a couple of months ago that Mom was given a date for surgery. However, prior to this I had to put in place provision for my care needs. This involved recruiting a second carer and ensuring I have all the equipment I would need.

For the past 4 months I have searched for a second carer. I advertised everywhere and anywhere – newspapers, news agents, local shops and the post office, job sites, Facebook and so on. The response has really surprised and frustrated me – so many no-shows, let downs and people failing to read or understand the basic job specification.

I ask very little of applicants. I don’t request references, qualifications, experience or even a CRB/DBS (criminal records check). I interview informally in my own home, and with employees I am flexible, easy going and more than fair, taking into consideration their individual circumstances.

However, despite the fact I am completely non-ambulatory, I have never used a hoist. Thus far, family and carers have always preferred to lift me manually as it’s much quicker and frankly less faff! I’m only tiny – approximately 5 feet tall and 5.5 stone in weight. So until very recently, it has always suited to go without a hoist.

Understandably this is off-putting to potential applicants. But, every carer I’ve ever employed has openly admitted that working for me is a breeze compared to any other job they’ve had, and that for them the lifting is a non-issue. Nevertheless, I appreciate that most would prefer not to lift – that’s fair enough.

Hoists

With this in mind, I instigated the process of applying for a ceiling track hoist to be installed in my ground-floor bedroom/ensuite bathroom. I will need a H-frame in the bathroom and a short track from my bed to the bathroom.

Not a huge ask really, particularly as I have never received any support in the way of equipment. Everything I have – wheelchairs, bed, bath lift etc. has been self-funded. The post-code lottery is a very real and unjust thing, people! But that’s a topic for another day…

Dealing with Community Occupational Therapists

I contacted the community Occupational Therapists, explained the situation and requested a needs assessment. I was initially fobbed off with the excuse that they’re vastly understaffed and that I would need to be terminally ill in order to qualify. When I asked how they suggest I manage after Mom’s operation, the OT replied that I should “camp out” and be dressed, bathed and toileted on my bed!

Disgusted at her casual disregard, I asked how she would feel having all her personal care needs carried out on the bed she sleeps in. “Oh well, this is the situation we’re in. It can’t be helped”, was her insensitive response.

I then contacted my neuromuscular consultant who wrote a letter of support. On receipt of this letter, the OT’s suddenly found time to carry out a needs assessment in my home – shocker! (It’s not what you know, but who you know, right!?)

Following this, two reps – one from TPG, the other from Prism Medical – came and measured up in order to provide quotes for the ceiling hoist. I have since learned that the second quote is unusable, which frankly is no surprise, as he clearly had no clue what he was doing; at one point asking to see the gas meter. Even the OT who accompanied him questioned his experience.

In the meantime I have been issued with a portable hoist, though it has taken many weeks to receive a usable sling. Rather than measuring me, then visiting me in my home with a variety of slings to try, the OT’s insisted on sending one at a time. After much harassment from me, a community OT finally conceded and actually attended to properly assess me for a sling.

Honestly, they complain that they have a backlog of work and no time, and yet they waste so much. The sling issue could have been carried out in one appointment. Simple, done, move on. But instead, they chose to drag it out for weeks simply because they wouldn’t visit or listen to the patient.

And now…

Today is Sunday 10th September, and no further progress has been made with the ceiling hoist. Yet again I will have to chase the OT’s, otherwise nothing will ever happen. Sad but true.

I had taken on a second carer who began shadowing at the beginning of August. She was very enthusiastic, supportive and accommodating – said all the right things. Then whilst on my way to visit mom in the hospital, two days after her surgery, I received a message from the new carer, who was due to work that evening. She issued a stream of excuses as to why she couldn’t (translate: wouldn’t) do the job.

Until then, my current carer had always been present. Essentially it turns out she was happy to come and get paid to watch someone else do the job. She just didn’t want to have to do any work herself. Now I know why she’s had so many jobs!

So, as it stands I am managing as best I can with my one part-time PCA, though she is planning to leave in late October to train as a paramedic; thus posing yet another obstacle.

Having realised how long this post is, I think I will leave it there for today, though there is much more to tell. Suffice to say, the saga continues…

Interview | Matt “Hambo” Hampson

Parallel London 2017

Here is my interview with Matt Hampson for Disability Horizons


With less than a month to go before the return of Parallel London (an all inclusive fun run and festival), I spoke to ambassador Matt Hampson about his involvement, and why the event is so important to him.

Matt “Hambo” Hampson is a former England Rugby Union prop who, at the age of 20, was paralysed in a near-fatal routine scrum session. Despite having severed his spinal cord in the accident (which took place twelve years ago in Northampton) Matt is now busier than ever and living life to the full as a C4/5 tetraplegic.

In 2011, Matt decided to establish a charitable foundation in his name, to inspire and support others who have suffered similar catastrophic sports injuries.

A mentor, fund-raiser, columnist, award-winning author, rugby coach, patron and ambassador; Matt truly epitomises the foundation’s ethos – ‘Get Busy Living’.

Sport, Injury & Disability

1. Hi Matt, would you please tell Disability Horizons readers a little about your sporting background and your subsequent disability?

I had my accident back in 2005 playing for the England Under 21s. I suffered a dislocated neck in a scrummaging accident, and had to be resuscitated on the pitch by the referee (and former paramedic) that day Tony Spreadbury.

My life obviously changed forever. One minute I was a young, fit sportsman and the next I was paralysed from the neck down. It was pretty tough to deal with. But it’s made me the person I am today and I think it happened for a reason. And that was to set up the Matt Hampson Foundation, which aims to inspire and support young people seriously injured through sport.

2. How did you adapt to no longer being able to participate in sport as you had previously?

It was quite difficult but I think I tried to channel my energy into something productive, which was to try and focus on something that I could do rather than what I can’t. So now I do my motivational speeches, I see beneficiaries and I try to use my profile to influence and help other people in similar situations to the one I found myself in twelve years ago.

Charity

3. Can you tell us about the Matt Hampson Foundation – how and why did you set it up?

I set the foundation up because when I was in hospital I felt there wasn’t enough support out there for people in the same situation as myself. I felt quite isolated. I think the Matt Hampson Foundation aims to get individuals and families together and show them that there is life after serious injury through sport. It also tries to motivate them to ultimately ‘get busy living’ (an ethos inspired by Matt’s favourite film, The Shawshank Redemption).

4. ‘Get busy living’ is the ethos of the Matt Hampson Foundation, which aims to inspire and support young people seriously injured through sport. How do you achieve this?

We try to show people there is a life beyond their injury and that you can live a great and fulfilled life even with a catastrophic injury. Everyone has X amount of time on this planet, so why not enjoy it.

So yeah, we try and use ‘Get busy living’ as the sort of ethos around the foundation.

Disabled People & Sport

5. What are your thoughts on involving disabled people in sport?

I think after the Paralympics in 2012, it changed the world of disabled sport forever. I think people started looking at disabled sports people as proper sports men and women rather than feeling sorry for them, and almost letting them participate as a sort of afterthought and a token gesture. I think the Paralympics in London really showed that and put them on a level playing field with able-bodied athletes.

Parallel London Ambassador

6. How and why did you become an ambassador for Parallel London?

It’s to put people on a level playing field, whatever their disability – whether you’re able-bodied, in a wheelchair, young or old – anyone can participate in Parallel London.

I think it’s so, so important to know that you can do things and be alongside disabled people, able-bodied people and all be on a level playing field.

7. What does Parallel London mean to you personally, and how does it promote disability and diversity within sport?

Parallel London to me means inclusivity. So basically, trying to get everybody involved whatever their background, ethnicity or disability – all can be involved with, and contribute to Parallel London. It just shows that everybody is equal, and for a day it makes people realise that.


You can find out more about Matt’s involvement with Parallel London and the Matt Hampson Foundation. ‘Engage: The Fall and Rise of Matt Hampson’, by Paul Kimmage, is available to purchase online.

Many thanks to Matt Hampson

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Changing Places Awareness

Imagine being denied the basic human need to go to the loo; being unable to access a toilet whenever you need to. Imagine having to hold it in all day, every day. Having no choice but to strictly limit your fluid intake to the point where you cannot risk drinking from morning until evening.  

My experience

This was my life until 2011, when I underwent medically unnecessary surgery to insert a suprapubic catheter. Of course I didn’t want an operation or an indwelling catheter. By no means was this an easy fix, believe me! But I just couldn’t do it anymore; I was making myself ill and relied on assistance from others in order to carry out the seemingly simple task of toileting. No longer could I inflict undue stress on my body and mind.

So, I resigned myself to the only option available to me, that being the suprapubic catheter. I no longer depend on other people, nor do I have to struggle and suffer the indignity of using small and frankly ill-adapted disabled loos. But, 250,000 disabled people in the UK still do.

The truth about disabled toilets

Often there is not enough room to fit a wheelchair in disabled toilets, let alone space to transfer, adjust clothing and accommodate a carer too. Baby changing facilities get in the way, grab rails are too few and carelessly installed, the toilets themselves are too low, and hoists… what hoists?!

Changing Places

The 19th July 2017 marked the second Changing Places Awareness Day and eleven years since the campaign began. I’ll admit it’s only relatively recently, through social media groups, that I first heard of Changing Places toilets. Though there are now 1000 registered Changing Places toilets across the UK, I have yet to see one.

What is a Changing Places toilet?

Each registered Changes Places toilet includes:

  • a height adjustable adult-sized changing bench
  • a tracking hoist system, or mobile hoist where not possible
  • adequate space for the disabled person and up to two carers
  • a centrally placed toilet with room either side
  • a screen or curtain for privacy
  • wide tear off paper roll to cover the bench
  • a large waste bin for disposable pads
  • a non-slip floor

To support and raise awareness of the need for Changing Places toilets, Muscular Dystrophy UK established the #FitToBurst campaign (Keep up to date on Twitter!)

As a Trailblazer myself, I offered my thoughts in response to the question (posed on Facebook): What does it mean to you to have more Changing Places toilets?

 

Here is my full response:

To be honest I’ve never seen or used one. I don’t know if it’s because I live semi-rurally (are they located predominantly in cities/larger towns?)

If so, I think it’s important that there are Changing Places loos in smaller towns, villages and more rurally as there are people in need in these locations too.

The lack of such a facility locally makes me feel restricted, excluded from society and considered less important. I don’t know if I’m correct in assuming that Changing Places toilets are mostly in cities, but if so, it makes me wonder why. Is it a funding issue? Is it ignorance, i.e. the belief that disabled people don’t live rurally?

The majority of disabled toilets I have used throughout the years have been vastly inadequate, filthy, often neglected or used for storage!

As I say I’ve never seen or used a Changing Places loo – unfortunately. But I can think of so many people locally, young and old, who would greatly benefit from having access to one.


To read what other Trailblazers have to say click here.

Find out much more about Changing Places by visiting their website.

Interview | Samantha Renke

Actress, TV Presenter & Disability Campaigner

Here I interview actress, presenter and disability campaigner Samantha Renke. She reveals all about growing up with a disability and her dreams of becoming an actress despite brittle bone disease. She also discusses her involvement with Parallel London 2017.

Here is the link to the interview, originally posted by Disability Horizons.


Parallel London

The 3rd September sees the return of Parallel London, a mass-participation race for people of all abilities. Feature writer Carrie Aimes speaks to disabled actress Sam Renke, ambassador for Parallel London, about why the event is so important and why you should get involved.

Despite her disability, 31 year-old Samantha Renke moved to London five years ago to pursue her long-held dream of becoming an actress. Now a familiar face to many, she has since starred in an award-winning film, music videos, webisodes as well as the popular Maltesers television advert. The former teacher is also a columnist, disability campaigner and charity worker.

As if all this is not enough to keep her busy, Samantha was recently appointed ambassador for Parallel London. Here, we learn more about the rising star and her involvement with Parallel London, the world’s first fully-inclusive, fully accessible mass-participation event.

Life & Disability

1. Would you please tell us a little about yourself, your disability and how it affects you?

I was born in Germany to a German mother and British father. We moved to the UK when I was a baby. I studied French, German, Sociology and European Studies at the University of Lancaster before completing my PGCE in Secondary Education at the University of Cumbria.

Following this, I worked as a high school teacher for a number of years. I was also a trustee for the Brittle Bone Society for 6 years, supporting people with my condition, Osteogenesis Imperfecta (brittle bones).

I am a full time wheelchair user and my bones break very easily. I’ve had around 200 fractures starting in my mother’s womb! I get fatigue and have some breathing difficulties. I do have a PA to help me with day-to-day tasks, which is my saving grace and allows me to live my life to the fullest.

After moving to London in 2012, my debut role was playing Alice Gardiner, a mischievous disabled girl who absconds to London in the film Little Devil. I won best actress and the film won Best Film in the Diversity of Arts category at the LA Diversity Film Festival. From there, I got an agent at Visable People and have appeared in a number of projects since.

I still love my charity work and I am patron of Head2Head, a multi-sensory theatre group. I am also affiliated with some other well-known charities, such as SCOPE. I love writing and have a regular column in Posability magazine and write regular blogs for the Huffington Post.

Maltesers TV Advert

2. People may know you best from the popular Maltesers TV adverts, which aired during the Paralympics. Why did you want to be part of that, and what response did you receive?

I think it’s any actor’s dream to be part of a national commercial as it’s certainly great exposure. More than that, I knew the concept was revolutionary and I felt so excited about the positive impact the advert would have.

Apart from some online trolling, the response has been phenomenal. Every day, without fail, when I leave my flat in East London I am recognised. People want my autograph and selfies. The lovely thing is that my disability is not the reason people stare at me now.

Celebrity Status

3. You’re a celebrity who happens to have a disability. What does this mean to you, and what challenges have you faced?

I always loved drama at school and attended a number of after-school drama clubs. However, one of my teachers took me to one side and told me not to get my hopes up of being cast in an acting role. I suppose at that time, 15 years ago, she had a point – the representation of disability within the media was non-existent. Nevertheless, this was heart-breaking to hear and I dropped all of my classes.

But after being a teacher for a couple of years, I knew I wanted to pursue my passion again. I hope my story encourages more people who have disabilities to get involved in TV, film and presenting. I’d like to think that when I have my own family, my children will follow their dreams, no matter what anyone else says.

Parallel London Ambassador

4. You were recently made an Ambassador for Parallel London. How did you come to be involved with this event?

My amazing friend Daniel White and his daughter Emily, who run the awesome blog the Department of Ability, introduced me to the Parallel team and the rest is history. It is a total love affair!

5. Can you tell us more about what Parallel London is and what it means for disabled people?

Parallel London is a fully-inclusive and accessible fun run and free family festival held at the iconic Queen Elizabeth Olympic Park. Open to all ages and abilities, there are no cut-off times and no barriers to involvement.

Parallel’s inaugural event took place on 4 September 2016. We hosted over 3,000 participants, of which, 41% declared themselves as having a disability. 5,500 people attended our family festival showcasing all different types of inclusive and accessible attractions. This year it is being held on the 3rd September.

6. Why is it so important to you to be involved with such an event?

Being part of a team and having people around you who love and support you for you is so important. As a child I did not get involved in anything as much as I would have liked, and this left me feeling isolated a lot. Parallel is all-inclusive, no matter what your ability. I think this is just amazing.

7. Is there any insider information you, as ambassador, can exclusively reveal to Disability Horizons readers?

Expect some surprises! I’m going to be getting my burlesque on with the amazing Folly Mixtures and their all-inclusive Burlexercise master class. So get your feather bowers ready.

My good friend Stephen Dixon from Sky News will also be at the event presenting for Sky and hosting with yours truly. He has told me that, regardless of the weather, he will be wearing his short shorts!

8. How can we all get involved with Parallel London?

Parallel London is taking place at Queen Elizabeth Olympic Park on the 3rd September. There’s a 10km, 5km, 1km, 100m and the Super Sensory 1km walk, cycle, push or run – whatever you want to do. It’s for all ages and abilities and everybody can be running side-by-side. You can get sponsorship for any charity or cause that matters to you – so why not give it a go?!


For more information on Parallel London visit www.parallellondon.com. You can also find out all the latest information about the event by following Parallel London on Twitter.

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Suprapubic Catheters (SPC)

Have you ever looked at a disabled person and wondered how they go to the loo?

I am physically disabled (Ullrich congenital muscular dystrophy) and have, in fact, asked this question myself many times over the years. As a wheelchair-user unable to weight-bear, toileting was always my biggest obstacle. Believe me, I’ve tried every method, technique and contraption available. But if you can’t stand or transfer, HOW do you do it?

Most wheelchair-users require the assistance of at least one other person to hoist, transfer or manually lift them. From experience, I can tell you this is time consuming and challenging enough when in your own, fully adapted, accessible home. When out and about, going to the loo can be an absolute nightmare!

Public facilities for disabled people are vastly inadequate. Bathrooms are barely big enough to accommodate a manual wheelchair, let alone a powered wheelchair plus carers and the necessary room to maneuver. They are often used as storage cupboards, occupied by cumbersome baby-changing equipment and the litter covered floors are filthy. This lack of consideration and basic adaptions in disabled toilets means that many are forced to lay on these dirty floors in order to be dressed and undressed. It is degrading and wholly undignified.


In October 2011, after careful consideration, I elected to undergo medically unnecessary surgery (on the NHS) to insert a suprapubic catheter (SPC).

I have always had full sensation and an otherwise healthy, fully-functioning bladder. Despite a lifetime spent severely restricting fluid intake and holding the need to urinate, I thankfully never suffered from urinary tract infections. I was not physically incontinent, rather socially or environmentally incontinent, since public toilets fail to meet my practical needs.


Following many requests for information and advice, I have written about my personal experience with a suprapubic catheter. Please refer to the document below, which you are welcome to download and print as required.

*Disclaimer* This is my experience only, and in no way represents that of any other person(s). 

Suprapubic Catheters – My Experience

Please feel free to ask questions and leave comments! 

The winter edit: Part 1

5 tips to keep warm this winter

Winter is well and truly here and so too is the frosty weather. British winters can be long, dark and unforgiving.

To help you make the most of the season ahead, I bring you part 1 of my winter edit – advice, tips and tricks to ward off the chill.


1. Chilblains:

Because I am unable to weight bear, I suffer from poor circulation making my feet permanently cold. I have what can only be described as corpse feet – purple and puffy! I have tried all sorts of remedies over the years to treat recurrent chilblains but I’ve found the best to be Gehwol Fusskraft Red cream (available on Amazon). I slather it on generously before putting on a pair of thick woolly socks, and find my feet are subtly but noticeably warmed and chilblains are kept at bay.

  • A good alternative to the Gehwol Fusskraft Red cream is the Pink Peppermint foot lotion by Lush, which works similarly to stimulate circulation. If going out on a cold day I’ll sometimes rub this into my hands to fend off frosty fingers.
  • In terms of footwear, you can’t beat (in my humble opinion) a pair of shearling lined boots *ahem, Ugg dupes* They may not be the height of sophistication, but they do the job and they’re ridiculously comfortable. I can imagine all the guys out there are thinking this is one for the ladies, but there is a good selection of shearling lined winter boots out there for men too.

2. Layering:

We all know it’s best to layer clothing when cold. However, this is not so easy to do when you’re a wheelchair user. Getting dressed at all is a daily battle for me so having to struggle with more than one top fills me with dread. So my advice put simply; if you can layer, do. If like me you can’t, keep reading…

I live in leggings as they’re stretchy and comfortable. You can buy leggings everywhere and anywhere these days but I favour Marks and Spencer heatgen thermals. There are socks, tights, vests, long sleeved tops and of course the leggings I love. Again if you’re able to, I recommend wearing these items under your usual attire for added insulation. But they’re ideal to wear alone too. M&S also feature a men’s thermal underwear range.

A great alternative to M&S is the Uniqlo Heattech range for men, women and children. This extensive selection is it is competitively priced, practical and fashionable. Definitely check this one out!

uniqlo

  • I swear by scarves. They’re so easy to throw around to protect against the winter chill. They come in so many fabrics, sizes, colours and styles. Invest in a thick woollen scarf big enough to wrap around your body like a poncho or use as a blanket over your legs. I sometimes do this if I’m home alone as I can’t manage sleeves myself.
  • Wear a woollen hat when going out in cold weather as heat escapes from our heads.
  • Gloves aren’t just for outdoors. If you suffer from cold hands, try wearing a fingerless pair when indoors which allow you the freedom to continue with your daily tasks. If it’s a particularly frosty day and I need to go out, I will layer woolly gloves over a fingerless pair. You could also purchase some USB heated gloves online.

  • Throughout the coldest months, ensure you use several bed sheets as this traps heat in far better than having one thick blanket. It’s also much easier to turn and reposition yourself with a few thinner cotton sheets over you than one heavy blanket. *I’ve mentioned it before but for those of you who struggle with turning in bed, I highly recommend investing in a satin fitted sheet.

3. Fabric:

When trying to keep warm it’s worth considering where you are and what you’re doing as this will determine which fabrics to opt for.

  • Natural fibres such as wool, cotton and silk are more insulating since they trap heat. So lightweight silky pyjamas will not only keep you snug at night, they will also help you manoeuvre more easily. Cotton is hypoallergenic, breathable and good for layering but not advisable in wet weather as it is also highly absorbent. Wool too absorbs moisture though due to its structure, water cannot enter the interior fibre. Therefore, even when soaking wet the air pockets inside the woollen fibres prevent you from losing heat. 100% wool is best as blends are less insulating.
  • The synthetic fabric polyester is good when out on a windy day. It’s durable, lightweight and can be made to any thickness. A polyester coat or jacket is a must. And why not snuggle up in bed with a polyester fleece mattress topper, available from Amazon.

4. Food:

  • Swap your morning cereal for warming porridge oats. Add a little cinnamon as it stimulates circulation thereby raising body temperature. Cinnamon spice is also full of antioxidants and anti-inflammatory properties which will protect you from winter viruses.

  • Opt for soup over sandwiches. Include iron rich foods, garlic, onions, spices and orange vegetables such as carrots, sweet potato and squash.
  • Whole grains, nuts and nut butters are great insulating snacks.
  • The dark days and cold weather can make us lethargic. Many of us lack the energy to cook after a busy day. So to prepare for the week ahead, make yourself plenty of warming hearty meals like stews, broths, casserole and chilli, then freeze. When you then come home in the evening, all you need do is reheat and enjoy. You’ll be warmed through in no time.
  • Hot drinks are a winter essential. I drink a lot of herbal teas, especially lemon and ginger as these ingredients are great for flushing out the system and warding off coughs and colds. When on a long journey take a flask of hot coffee or tea with you to stay warm and hydrated.

5. Home heating:

It’s important to maintain a warm and consistent temperature in your home throughout the winter. Exposing yourself to extreme and varied temperatures can leave you vulnerable to ill health and infection. Government guidelines advise heating our living rooms to 21C (70F).

Most of us now have central heating which can even be controlled from our mobile phones. My family home is primarily heated by a wood burner which warms the whole house. However, I cannot prepare and light the fire myself due to my disability. I therefore store a fan heater in my bedroom which is simply operated by the flick of a switch. There are many different electric heaters now on the market. Here’s a budget option and a higher end option for you.

You could also pre-heat your bed with an electric blanket or a hot water bottle so that it’s nice and toasty for you to get into at night.

Honourable mentions:

  • Invest in a high tog duvet for frost nights.
  • For a quick fix, blast yourself with the hairdryer for instant heat
  • Heating pads and microwaveable heat pack
  • Reusable hand gel warmers (I have these)
  • Microwaveable slippers/USB foot warmer
  • Check out the complete care shop for a variety of warming aids
  • Enjoy a cosy night in front of the fire with a milky hot chocolate – my favourite is Galaxy or Aero – and a big bowl of homemade cinnamon popcorn!

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.

Guest Posts | All Articles

Since creating this blog in October 2016, I have been incredibly fortunate to write for various websites and organisations.

I am a Feature Writer for Disability Horizons, Co-Researcher with Living Life to the Fullest, and a long-time campaigner for Muscular Dystrophy Trailblazers.

Here is my entire catalogue of articles:


The first article I wrote for Disability Horizons lists my choice of ‘The Top Ten Apps for Disabled People’.

No matter what your disability, there’s an app out there that can assist you in some way. With the help of such technology, we the disabled community can make our lives that little bit easier.

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.


 

  • For all my Muscular Dystrophy Trailblazers articles: click here

2009: My first involvement with Muscular Dystrophy Trailblazers.

 

  • For all my Disability Horizons articles: click here

  • For all my Disability Talk articles: click here

 

 

 

 

My interview with Disabled Living.

 


My interview with actor James Moore, for the March/April 2019 issue of Able Mag

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