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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What’s in my bag: UCMD edition

The ‘what’s in my bag’ post is a popular one amongst many bloggers. I guess it’s our innate curiosity that makes us so eager to know the personal contents of a complete strangers bag. Nosey beggars we are!

Nevertheless, most people carry around the same few items on a day-to-day basis, right?

– Wallet, phone, keys…

But what does a wheelchair user routinely carry with them?

Here’s an insight into what I, a young woman with muscular dystrophy, take with me in my bag.

  1. Ventolin Salbutamol inhaler with Haleraid – I keep one at home but also ensure I have one of these in my bag at all times. I find these inhalers difficult to use without the Haleraid device, which I highly recommend for those with small or weak hands.
  2. In addition to the usual house and car keys, I have a Radar key which provides access to over 9000 accessible toilets throughout the UK.
  3. Empty bottle – if you read my blog, you may be aware that I have a suprapubic catheter. So, when out and about, I have found it a good idea to keep an empty bottle with me. I’m sure I need not explain why…
  4. If using public toilets, it’s good practice to carry a small bottle of hand sanitiser. I get mine from Primark as they’re super cheap and portable. I’m also susceptible to coughs and colds so this helps me to avoid community acquired viruses.
  5. Wet wipes – I prefer a smaller bag as I’m rather petite. So I usually leave a packet of wet wipes in the car. These things are invaluable and versatile, particularly for us girls!                                                                After indulging in fast food, using public transport and toilets, refuelling the car, for cleaning a dusty wheelchair, or simply freshening up on hot summer days. Wet wipes are a must.
  6. Tissues – you can guarantee the one day I don’t put a tissue in my bag is when I’ll desperately need one.
  7. It’s now June and around this time of year I suffer with hay fever. As you may know if you read this previous post, I’m also allergic to horses. I therefore keep some antihistamines to hand, should I run into a horse. As you do.                                                                                                           You can buy Loratadine tablets for less than a pound in some shops. There’s no point spending more for branded versions, they all do the same job. However, if for any reason you struggle with tablets, I recommend Boots Hayfever Relief Instant-melts. They are quite pricey but as the name suggests, they melt easily on the tongue and leave no nasty aftertaste. And they work!
  8. Chewable multivitamins – I try to stay as healthy as possible by taking a daily multivitamin supplement. I have a big pot of tablets at home but on the go, I prefer to pop a sachet of chewy multivitamins in my bag. They’re much more lightweight than pills and you don’t need a drink to take them.
  9. Drink – usually Lucozade (although they have recently cut the sugar content by half resulting in a distinct change in flavour. Damn them!) I’m not in general a fan of energy drinks, nor do I have a sweet tooth. But this stuff got me through Uni. As I get older, I become weaker and more fatigued due to my muscular dystrophy.                                                     It’s not the healthiest thing in the world I know, but I’m pretty clean living otherwise. Lucozade helps fight exhaustion. Lucozade is my friend!
  10. Straws – I can still lift cups, glasses and bottles to drink from, but a straw just makes life so much easier, especially if you’re en-route and jigging about in the back of a wheelchair accessible vehicle! I often swipe them in bulk from the cinema or good old Maccie D’s.
  11. Ensure compact milkshake – if I’m out all day or travelling for several hours, I’ll take one of these with me for convenience. They’re easy to pop in your bag and one small bottle provides 300 calories. Some people complain about the taste. I’m not going to lie and tell you they’re delicious, but they’re certainly not offensive. And for those of you who struggle to keep your weight up and achieve a nutritionally complete diet, these do the job.
  12. Chewing gum – apart from the obvious purpose of maintaining minty fresh breath, gum really helps to relieve bloating. Like many with scoliosis, I struggle to eat a lot as there’s little room for expanse. But, sometimes my eyes are larger than my belly and I force myself to eat more than my body will allow. I then feel uncomfortable and even tight-chested. Chewing encourages a faster rate of digestion, thereby easing this discomfort.                                                                                            Furthermore, I’m not a particularly anxious person but I have noticed that chewing gum helps somewhat. Is this just me?
  13. Phone – everyone carries a mobile phone with them nowadays, but for me it’s essential. If I’m out in my car and it breaks down or there’s an accident, I can call someone. Similarly, if there’s a fault, malfunction or damage to my wheelchair, I would be stranded without my phone.
  14. Cards and cash – well, obviously. I wouldn’t get far without any money. I always have some cash with me for parking as well as ID since I look about twelve. I was born in the 80s, I swear.
  15. Blue badge – This lives in the car and it really is a huge help for us disabled folk. I’m out, here and there in my car most days and ever in search of accessible parking spaces. I couldn’t be without it.                                    

20 Questions Tag!

We Brits have endured turbulent times of late. So, in an attempt to inject a little light relief into proceedings, I’ve devised my own 20 questions tag.

I’ll kick things off and tag a few fellow bloggers who will then (hopefully) answer the same 20 questions. Not the height of excitement folks, I know. But it’s a brief respite from the continual political talk going on right now.

Ok, here goes…

1. Morning or evening person?
Evening. Always have been, even as a kid. I just don’t function in the morning.

2. Night in or night out?
These days (because I’m so old) I prefer a cosy night in with a good film and good food. The weather here in England is generally crap so I really have to force myself to leave the house when invited out on a cold, rainy evening.

3. Lots of friends or a few close friends?
A few friends. My closest circle of friends are those I have known for almost 20 years. It’s best to keep them sweet, they know too much!

4. Time to yourself or time spent with others?
As sad as it may seem, I actually love my own company, especially as I still live with my parents. It’s not as though I have a home of my own. So, I appreciate time to myself all the more. I’ve always been able to occupy myself. My folks often say I would happily play alone as a tot. Take that as you will…

5. Holiday at home or abroad?
Abroad, definitely. I rarely have the opportunity to travel so when I can, I prefer to go abroad, mainly to escape the British weather.

6. Countryside, seaside or city?
Seaside. I live in central England so I’m several hours drive from the nearest coast. It’s a rarely seen sight for me. I always wanted a house overlooking the sea. I just love everything about it.

7. Hot climate or cold climate?
Hot! I have muscular dystrophy and poor circulation. Thus I really feel the cold. I always feel so much better in every sense when in a warmer climate.

8. Books or films?
I’m a big film buff. Admittedly I watch a lot of films. Box sets seem to be the ‘in thing’ at the moment. I’ve been told I should get stuck into Game of Thrones and Stranger Things, among others. I may do at some point. I did watch Fargo season 2. That was decent. But I just don’t have the patience for TV shows. I like to settle down at night and watch a good film. 2-hours and you’re done.

9. Rice or pasta?
Rice. I like pasta but it’s much stodgier. Due to my MD, scoliosis and respiratory decline, I have limited space for food as it is. Plus I find rice more versatile.

10. Tea or coffee or..?
I like the smell of coffee but hate the taste. I’ll drink tea but I’m not a huge fan. I live on Lucozade. Bad I know. But it literally got me through Uni. Can’t believe they’ve changed the recipe! Bloody sugar tax. It really doesn’t taste the same anymore.

11. Cook, takeaway or eat out?
Ooh, I enjoy all three. Depends how I’m feeling I guess. I rarely have a takeaway so when I do it’s a treat. It’s nice to eat out with family or friends. And I do like to cook because it means I’m involved and can eat whatever I want. I’m a bit of a bish, bash, bosh type. I don’t like to be restricted by a recipe.

12. Formal or casual?
Casual, all the way. I don’t do formal!

13. Dogs or cats?
I love both and have always had cats and dogs. I’ve never known life without a pet. If I had to choose I would probably say I prefer dogs. Generally more loyal I think.

14. Play it safe or be daring?
I wish I could say I’m a spontaneous type, but unfortunately MD doesn’t lend itself to such a lifestyle. I hate routine and monotony. I’m as daring as I can be.

15. Idealist or realist?
Realist. I have to be. My whole existence requires consideration, planning and organisation. It’s nice to dream every now and then but dreaming tends to lead to disappointment.

16. Lead or follow?
I guess I’m a bit of both, depending on the context. I prefer to follow as I don’t like responsibility or being held accountable. I’d rather go with the flow. But I am an employer -reluctantly – since I hire my own PA’s. Therefore, this calls for a degree of leadership.

17. Work or play?
Play. Life’s far too short!

18. Lennon or McCartney?
Lennon. Sorry Paul.

19. Love or money?
Love, no doubt. Cliché maybe. Money helps, of course. I wouldn’t turn it down. But at the end of the day, when the shit hits the fan, all you want is your loved ones around you. All the money in the world won’t cure my MD. But love makes life worth living.

20. Share your problems or keep them to yourself?
I’m often accused of being secretive, guarded and evasive. I do bottle things up. I know “it’s good to talk”, and all that. But I just don’t find talking about my problems helps. I don’t like people to know when I’m unhappy or ill or struggling.
I’ll be honest, I find it difficult sharing so much about myself on my blog. I hold a lot back. I’m not a fan of social media and it took me months and months to finally submit. Months and months of friends pushing me to give it a go. I still require the odd kick up the ass to persist.


I hope you enjoyed this post. Let me know what you think.

I tag:

Uncanny Vivek
SimplyEmma

 

 

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! 

Excuses, excuses: why there’s no good reason to not vote

“I haven’t got time”

“I forgot”

“I didn’t register”

“I was on holiday”

“I didn’t feel well”

“Something came up, so I couldn’t get to the polling station”

“I couldn’t be bothered”

“I’ve got better things to do”

“My vote won’t make any difference”

“who cares?”

“I’m not interested in politics”

“I don’t like any of the leaders so what’s the point?”

“It’s raining! I’m not going out in the rain just to vote!”

“They’re all corrupt anyway”

“The polling station is inaccessible!”

So many excuses I’ve heard over the years. As someone who has never missed an opportunity to vote, I am always frustrated when others fail to. Regardless of your circumstances, there really is NO EXCUSE!

I live semi-rurally and my local polling station – an old building with many steps – is not wheelchair accessible. Now I’m all for inclusivity and accessibility. But, this has never been a cause for concern as it doesn’t prevent me from casting my vote. Years ago I registered online (an easy process) for postal voting. I don’t even need to leave the house to have my say!

Like it or not, politics does affect each and every one of us. Each and every ballot paper counts. Ensure you make your voice heard by marking your choice with an X this Thursday, June 8th!

Failing to vote is failing to care.

Take advantage of your democratic right.

A United Kingdom

Rather than the usual Friday ‘I miss… I’m thankful’ post, I decided this week to reflect on current issues including the General Election and terrorism in the UK. Don’t worry, I’ll try not to get too deep & dreary!

Trying times

It’s fair to say that the past few weeks have been rather tumultuous here in the UK. Election fever has reached its peak as we edge ever closer to the public vote, to be held on June 8th. It’s very much a two-horse race with Labour’s Jeremy Corbyn facing off against Conservative Prime Minister Theresa May.

Now I don’t want to delve into party politics or voice my own predilection. While I do think it’s important that everyone who can vote does so, I don’t feel it necessary to impart my views or those of any other. At the end of the day, we are all individuals with diverse circumstances and priorities. Therefore, I haven’t and won’t be publically advocating any particular party. It is for you to decide who to vote for. All I will say is, please ensure you do make time to cast your vote. After all, people died to allow us the right to have our say. And frankly, if you don’t vote, you really can’t complain.

Manchester

Late last Monday, 22nd May, a terrorist attack occurred at the Manchester Arena. A 22-year-old suicide bomber took the lives of 22 individuals, including children. 116 others were injured, some critically.

This follows the recent incident in London’s Westminster, when on 22nd March, 4 were killed and 50 more injured by a lone assailant.

Such events are sadly becoming more commonplace in the UK, and we are increasingly told to remain vigilant.

It’s a distressing prospect which affects us all, whether directly involved or not. I was in utter disbelief on hearing of the Manchester bombing, particularly because it took place at a Pop concert and targeted children. What goes through the mind of the person who carried out such a horrific and devastating act is just inconceivable.

The future generation

I am soon to be an aunt, and so the impact on me was greater for this reason. I wonder, in what kind of environment will my new niece or nephew grow up? Will they learn to accept terrorism as the norm? Will they one day be targeted?

We see it on the News every day: ISIS-led atrocities in Iraq and Syria, militant barbarism, explosions, executions and so on. We associate this with the Middle East, not with the Western world and definitely not with us. Not you and me.

But the sad truth is, we are involved, we are a target, and we are fighting a war with terrorism. But what I am thankful for and proud of, is the way in which we respond to attacks made against us.

Stand together, united

Any attack against our nation is an attack against us as individuals and against our freedom. It is personal. We all feel it. As a result, we all pull together in trying times.

Reports of the tireless work of emergency service staff, the charity of taxi drivers, help from the homeless and those from afar offering aid on their day off work. These heart-warming stories unite us. People from all walks of life join forces to repair and rebuild. This is something that the terrorists can never take from us. We are strong and defiant and we refuse to live in fear.

I’m thankful

So, in-keeping with my usual Friday themed posts, I’d like to conclude by saying that I am thankful to be living in the UK. I am thankful to be living in a diverse yet united nation. I am thankful that here in England I do not live every day in fear or peril, unlike many unfortunate people in the world. I am thankful for the strength, courage, pride and positivity of Britons. Furthermore, I am thankful for the emergency services and for the NHS. Truly, where would we be without them?!

I miss… I’m thankful #16

I miss… my childhood bedroom, which was on the first floor of our family home. My room, next to my parents’, had the best view of the house, looking over a distant rural scene.

Since I couldn’t climb stairs, I accessed my old bedroom via a fairly cumbersome stairlift. Though it occupied the majority of the staircase and was considered (by some) an eyesore, I miss it somewhat. I would at times amuse myself by transporting the dog or cat up and down on the seat or footplate. Don’t panic, they enjoyed it – honestly!

Having lost the ability to weight-bear at the age of 10, it became increasingly difficult for me to access the upper floor of our home. So, in 2000, my parents made the decision to extend the ground floor and build a level-access bedroom and ensuite bathroom for me.

At the age of twelve, I left the security of my old bedroom for my new, street level room. It took a long time for me to grow accustomed to sleeping so far from the rest of my family. My parents and older brother slept in close proximity, safe upstairs, while I slept (or tried to) all alone on the lower floor.

My new bedroom is extended from the living-room, and consequently people seem to feel it is part of the shared family space. They often stroll in and out at their leisure, visitors included. This continues to be infuriating at times, though in all fairness it’s a small price to pay considering all that my parents have surrendered to accommodate me in their home.

I’m thankful… for the selflessness and sacrifices made by my parents for my benefit. I have previously mentioned the different ways in which my parents support and provide for me. In this case, the sacrifice was primarily financial.

As I was below the age of 18, it was my parents income that was assessed, meaning that they were afforded only a partial grant towards the build. To supplement the cost, they extended their mortgage. They didn’t have to do this. They did it for me. They did it to allow me greater independence and flexibility as my needs changed with the progression of my condition.

I’m now 28 and I still live with my parents in their home. Not ideal, no. We get on each others nerves from time to time. Disagreements are unavoidable. From this, it’s easy to want for more, and to wish I could move out and have my own space. The grass is always greener, perhaps. But it’s important to remind myself of all that I have and not what I don’t have. It’s important to remember all that my parents have done for me throughout my life. After all, not many would put themselves through years of debt in order to extend their home for the sake of their disabled daughter.

Walking vs Wheelchair: Accepting the need for a wheelchair

I was recently invited to guest post for the lovely SimplyEmma. She kindly gave me the opportunity to write about a topic of my choice.

You can view my post for Emma here.

Check out Emma’s website and follow her on social media.                       Twitter: @Simplyemma2           Facebook: @SimplyEmmaBlog
Instagram: simplyemmablog


I’ve noticed a lot of discussion within Facebook groups recently, around the topic of walking versus the use of a wheelchair.

Many disabled people gradually lose the ability to walk over a period of time. Often it occurs in stages: from independent mobility, to the need for walking sticks, then a frame and finally a wheelchair.

I appreciate that for the individuals affected, it is an incredibly difficult decision to make. Do I continue to walk for as long as possible, despite the struggle and restraints? Or, do I resign myself to the confines of a wheelchair?

I have noticed, from comments on social media, that this is how some view wheelchairs: objects of confinement and restriction. On the contrary, I see my wheelchair as an essential mobility aid, removing the limitations I faced when walking for only short durations. The powered chair I now use offers me freedom and independence.

Obviously your condition and individual circumstances determine whether or not you have the option to continue walking. Personally, I never had a choice. I have Ullrich congenital muscular dystrophy and lost the ability to walk quite abruptly at the age of 10. Not that I could walk very well or very far up to that point.

Nevertheless, the choice was taken from me. I had reached a stage where I literally couldn’t support my own weight. Grit and determination played no part. And so, I went from walking minimal distances whilst wearing leg splints, to using a manual wheelchair that I couldn’t self propel due to a lack of strength and joint contractures. Sticks and frames were never of any use to me.

It was a difficult transition, of course. But not totally unexpected. As a child, I was offered little assurance of how my condition would progress. Doctors simply didn’t know. They couldn’t tell me if I would maintain my ability to walk or not. It was a case of, wait and see; roll with the punches. So that’s what I did.

To be honest, I was to a large extent relieved to be using a wheelchair, despite the fact I was dependant on others to manoeuvre me around. Even just a few small steps was a huge feat and physically laborious. That in itself was disabling me.

Committing to a wheelchair full time meant that I was free to roam with my peers. Kids at school used to squabble over whose turn it was to push me around. I was no longer exhausted, battling to stay on my feet or falling over and injuring myself. Being non-ambulant, I no longer had to wear those unsightly leg splints which pleased me no end!

I had recently started middle school and, within a matter of a few weeks I found myself completely unable to weight-bear. However, less than twelve-months later, I was fortunate enough to benefit from my first powered wheelchair. I can’t emphasise enough how much of a difference this made to my life. I could zip around at break times with friends, I could take myself wherever I wanted to go without the need for assistance, and I could venture into the local countryside. I was no longer confined!

It’s been eighteen years since I took my last footstep. And, I can honestly say I don’t miss walking. Naturally I wish I could stand, walk and run ‘normally’. But I would never trade my wheelchair for my old leg splints, the bumps and bruises from falling so often, and the constant exertion to achieve a few small steps.

 

I miss… I’m thankful #15

A little lighter than last Friday’s post (and one for the girls!)…

I miss… being able to quickly, easily and efficiently shave my own legs.

I have Ullrich congenital muscular dystrophy. With that comes muscle degeneration, contractures and scoliosis. Over the years these have all progressed, thereby making everyday tasks increasingly difficult since mobility is restricted.

With regards to shaving, the main obstacle for me is the shortening of the tendons in my arms, resulting in severe contractures. I can now no longer extend my elbows beyond an approximate 80° angle.

So, after (briefly) considering an ‘au naturel’ look, I investigated alternative methods of hair removal.

Of course I could simply seek assistance with shaving. But I try my best to maintain as much independence as possible for as long as possible.
Therefore…

I’m thankful… I discovered the Razor Reach – an extendable addition to any non-electrical shaver. It’s simple to use, even for me, and can reach up to 18 inches.

Aimed primarily at pregnant women, the Razor Reach is not currently available in the UK though it can be purchased online.

If like me, you struggle to keep your legs silky smooth and fuzz free, I definitely recommend investing in a shaver extension device such as the Razor Reach.

I miss… I’m thankful #14

I currently have one part time PA who will soon be leaving to pursue a new career as a paramedic. So, for the past couple of weeks I have been occupied with the necessary task of finding replacement carers. Advertising, interviewing and responding to individuals has taken up most of my time. Therefore blogging was temporarily suspended and the usual Friday post, absent.

I’ve previously touched on the struggles associated with hiring care staff in my open letter to PA’s. As anyone in my position will know, this can be challenging, time consuming, frustrating and stressful. I never wanted the responsibility of being an employer, but unless I use agency care workers, I’m left with no choice.

So, on that note, it seems fitting that this Friday’s post touch on the subject of care:

I miss… the days long past when it was not a necessity for me to employ carers.

Until around ten years ago, my parents were my primary caregivers. Living with them in their home, as I still do, I was reliant on their support. Alas, parents get older and rightfully so, need more time for themselves.

So at the age of 18, I was awarded Direct Payments and officially became an employer to my first PA (an intimidating prospect). At first, she would attend just three mornings a week. Over time, as I got used to this change of routine, and my trust in someone outside our family unit grew, the hours increased to five mornings.

I have since employed several others, and experienced the hiring (thankfully not firing) process a few times over the past decade.

Entrusting my requirements to PA’s is now very much part of my life, yet it’s something I wish I didn’t have to do. I don’t necessarily choose to spend my time with those I employ, it’s simply a case of needs must.

Employing carers is synonymous with scheduling, routine, organisation and discipline. I, as an individual am not synonymous with scheduling, routine, organisation and discipline!

When becoming an employer, as I reluctantly have, you must adapt your lifestyle somewhat (or so I have found). You are responsible for your employees and are obliged to make yourself aware of the legislation involved, since you play a role just as your carers do.

My point here, is that I miss my pre-employer life. I wish I didn’t have to submit timesheets every month, calculate tax and national insurance contributions, ensure I have holiday and sick cover, treat my employees fairly by addressing their needs and concerns – and so on.

I wish I did not have to invite strangers into my home to help with my everyday challenges. I miss being able to stay up at night for as long as I like. I miss not having to plan my days and weeks; What time do I want to get up in the mornings? what time do I want to go to bed?

I’m thankful… that I applied for Direct Payments all those years ago and didn’t delay, since it is much more difficult nowadays.

Direct Payments (UK) is awarded by the local council following an assessment of your needs.

For me the process was fairly straight forward and swift. However, I am aware that for various reasons it is now more strict, time consuming, and arguably more stressful. I have no doubt that had I waited several years to apply, I would not be in the fortunate position I am now with regards to the hours of care I am afforded.

Direct Payments allows me to hire a PA of my choice, whilst also offering my parents a break from their care role.

So, all things considered, though I would rather not have to employ carers, I certainly could not manage without them.