What I took on holiday to Whitby | Wheelchair Life

I recently spent a week in historic Whitby, staying in an impressively accessible cottage (read all about it here!)

But before setting off, I had to prepare and plan, even more so than the usual holiday-maker, as I have Ullrich congenital muscular dystrophy and am wheelchair-bound.

There are many things us wheelie folk need to take with us when travelling, besides clothes and a bucket and spade!

Here is my definitive guide…

1. Both my manual and powered wheelchairs: This year we ventured up north to Whitby where the terrain is rugged. I therefore thought it wise to take my manual wheelchair as a backup, should my power chair struggle. The luxury of travelling within the UK is that there is no luggage limit. I have a Citroen Berlingo wheelchair accessible vehicle (WAV) in which there’s plenty of room for all the added extras I need to take with me. I personally would never take my powered chair on an airplane, having heard so many horror stories of loss and irreparable damage. But travelling by car means that I can easily take both my wheelchairs.

2. Wheelchair charger: No brainer! I wouldn’t get far without it.

3. Bipap machine and a spare mask: It’s always best to take at least one spare of everything you NEED when travelling.

4. Extension lead: you can’t be certain of where plug sockets will be located in your holiday accommodation. I need at least one situated next to my bed to power my NIV (Bipap) machine throughout the night. This isn’t always the case and so an extension lead can be extremely useful if you have a lot of equipment to charge.

5. Lightweight thermal blanket: I struggle to adjust my position in bed and I often find the duvets in holiday accommodation too heavy for me to turn. So, I prefer to take my own blanket, which can be rolled up and compacted. This means that I don’t have to worry about those heavy, immovable duvets when travelling.

6. Medication:

  • Antibiotics, should I become ill whilst on holiday (best to cover yourself!)
  • Antihistamines (Boots Hayfever Relief Instant-melts are pricey but good if you can’t swallow pills)
  • Spare inhalers (I use Salbutamol – marketed as Ventolin)
  • Painkillers (Nurofen Meltlets Lemon are good for those who can’t swallow pills)

7. Lists: As someone with a disability, it’s good practice to do a little research before travelling, even if only for a day trip. I like to make a list of accessible places to dine, attractions, transport and even the places to avoid.

Time spent pre-planning will allow you more time to enjoy your holiday.


If you have a disability, what extra items and equipment do you take with you when travelling?

Let me know in the comments, I’d love to hear from you!

My Wheelchair Accessible Holiday to Whitby

Once again, the lovely SimplyEmma invited me to guest-post on her blog (go check it out!) and so I chose to write about my recent holiday to Whitby, North Yorkshire.
To read my second blog post for Emma, click here.

I recently returned from my annual, week-long family holiday. This year, my parents and I chose to stay in the UK after all the hassle we had last year with flying (find my review of our trip to Salou, Spain here).

So, back in February we booked a self-catering accessible cottage through Disabled Holidays.

We’ve always loved Yorkshire; the history, countryside, charm and culture. But we also wanted to be near the coast and so we opted for the seaside town of Whitby, situated in the Borough of Scarborough.

Accommodation

A wheelchair accessible holiday cottage in Sneaton Thorpe:

  • A large ground-floor property, all rooms are generously sized. More than enough room to manoeuvre with hoists, wheelchairs and any other equipment required.
  • 2 bedrooms, sleeps 4. Large living/dining area and sizeable separate kitchen.
  • Huge wet room with both bath and shower! There is a wall-mounted shower seat, though these are rarely any use to me as my balance is poor. I therefore pre-requested a static shower chair with armrests (as you can see from the photo, there are no armrests on the chair!) However, there are sturdy, wall-mounted grab rails either side and so this suited fine.
  • The door ridges could be problematic for some wheelchair users. I use a Quantum 600 powered chair which managed the front door but struggled with the patio door. Alternatively, I went around the side of the property and through the gate in order to access the garden.
  • Stunning views of Whitby coastline, the surrounding countryside and the Abbey in the distance.
  • Ideal location: quiet and peaceful yet only a 10 minute drive to Whitby town centre.
  • Overall very impressive and well thought-out accommodation. My only complaint is the beds, which were VERY firm and uncomfortable. I use an electric adjustable bed at home with a regular mattress but I’ve always slept on normal beds when away, without issue. There was however, plenty of room underneath to use a manual hoist should you need to.
  • I would thoroughly recommend this property to anyone with a disability, particularly wheelchair users. My only suggestion would be to take some form of mattress topper and maybe a blanket as only heavy, winter duvets were provided.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Places I visited

Robin hoods bay

  • Historic fishing village, scenic views. 10-15 minute drive, south of Whitby.
  • Pavements are fairly wide and smooth. A reasonable amount of dropped kerbs.
  • Sufficient disabled parking (not exempt from payment).
  • Most pubs and restaurants are wheelchair accessible.
  • Very steep towards the bay itself. I chose not to venture down as the gradient was too steep for my wheelchair.

Whitby town

  • Could do with more dropped kerbs although generally flat in the west side of the town. Pier is mostly accessible (steps to reach the very end but you’re not missing out).
  • The beach is accessible via slope and the sands are firm (powered wheelchairs and scooters may struggle!)
  • You can hire mobility equipment including scooters, manual and powered wheelchairs, beach wheelchairs and even an all-terrain wheelchair from Whitby Tourist Information. I would advise you do this in advance! Call: 01947 821001 or click here for more information.
  • West side of town is much more commercialised than the east side.
  • Plenty of disabled parking (not exempt from payment) and accessible toilets (take your Radar key). I recommend the new Marina car park toilets, located near the Tourist Information Centre, as they’re the best equipped and the most pleasant.
  • East side far less accessible depending on your tolerance for cobbled streets. Manual wheelchairs would struggle unless pulled backwards which is obviously not ideal or particularly appealing. I ventured through the cobbled streets and Whitby Market Place in my Quantum 600 and didn’t get stuck – so it is doable.
  • There are some interesting shops showcasing local arts, crafts and Whitby jet jewellery.

Scarborough North Bay

  • Flat, wide, smooth, even pavements.
  • Dropped kerbs, free disabled parking, ramp access to beach which is accessible depending on the wheelchair or scooter you use.
  • My heavy Quantum 600 power chair got stuck in the sand, and I had to call on the assistance of some friendly locals to haul me back onto the pavement. However, manual wheelchairs shouldn’t encounter any problems as the sands are flat and firm.

East pier and Scarborough town centre

  • Impressively accessible: flat, even, wide pavements and plenty of dropped kerbs.
  • Free disabled parking.
  • Much more commercialised and populated than the North Bay, so if you prefer the peace and quiet, stick to the north.
  • Lots of amusement arcades, fast food and tourist/gift shops.
  • Beach again is very flat and accessible although powered chairs may struggle.
  • Accessible buses and sight-seeing tour buses.
  • The main disabled toilet in town (Radar key required) is small and unpleasant! I would use one of the accessible toilets within the pubs or restaurants.

Whitby Abbey

  • The Abbey is surprisingly accessible for all. I really enjoyed my visit as it was so easy to get around and there was nothing I missed out on.
  • Smooth, even paths and slopes where necessary. Even the grass isn’t bumpy.
  • 4 disabled parking bays, 2 large lifts and disabled toilets at the main entrance and in the tea rooms.
  • All staff were extremely helpful and advised us of the most accessible routes. Even the gift shop was a decent size, allowing wheelchair users to browse without bumping into other visitors.
  • I highly recommend visiting the Abbey!
  • Obviously, the famous 199 steps are in no way disabled-friendly. But you can park at the top and take in the view.

Final Thoughts

While North Yorkshire is admittedly very hilly, rugged and rural, it is for the most part accessible to those with disabilities, as I discovered. It’s not always easy or comfortable to get around in a wheelchair, but it’s worth a bloody good try as the North Yorkshire Moors has so much to offer.

There are many narrow, winding, steep roads and country lanes to navigate. For this reason I think it’s important for anyone with a disability to have access to a car in order to explore Whitby and the surrounding area.

* All photos taken by me


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We can and we do: Highlighting the Ability in DisAbility

Hi folks, hope you’re all healthy and happy!

Here is my latest piece for Muscular Dystrophy Trailblazers. I really hope you like it!


I’m presently in the process of recruiting new carers. Many applicants have expressed their disbelief at how much I do for myself. One even congratulated me; “well done you!”, to which my current carer responded with a subtle mocking applause.

Why are people so surprised at my level of ability? Do they see me in a wheelchair and assume that all wheelchair users are similarly afflicted and completely dependent on others? Is the concept of disability really that black and white to the general public?

This made me think about how disabled people are perceived by society. Not for what we are able to do, but rather for all the things they assume we cannot.

Each of us is an individual and we therefore experience different limitations and variable degrees of severity.

I have Ullrich congenital muscular dystrophy and as a consequence there are certain things I am physically unable to do. However, not everyone with the same condition will be affected in exactly the same way. A persons disability is arguably as unique as their personality.

Raising awareness of the fact that there is also ability within disability is, I feel, essential in addressing the societal misjudgement that ‘disability’ equals ‘cannot’.  Disability is diverse. Yes it restricts us. But disability is not just about what we can’t do, it’s also about what we CAN do.

We can and we do…

1. Have sex – Yes, believe it or not sex is not exclusive to the young and beautiful. Guess what, old people do it too – shock horror!

2. Have romantic relationships, get married and have children.

3. Leave the house! Sometimes unaccompanied – While independently wheeling around town, I often encounter puzzled onlookers questioning, “where is your helper?”. Sometimes I tell them I’m trying to escape or that my “helper” fell in the river. Sometimes!

4. Drink alcohol – Having managed to leave the house and evade the confused locals (well done me!) I may join some friends for a drink. Yes, an alcoholic drink. Now of course not all disabled people can or do drink. Then again, not all able-bodied people drink, do they. So the next time you see someone with a disability enjoying a pint, don’t be so surprised.

5. Travel – Although many of us require support from friends, family or a carer in order to get out and about; travel, both nationally and internationally is becoming increasingly accessible to all.

6. Drive a car – You’d be amazed how vehicles can be adapted to accommodate disabled drivers. We too want to get out and explore the open road. And for those of us who are unable to drive, travelling as a passenger is another option.

7. Attend university, get a job and have a career – It still baffles me why people are so astounded by the idea of disabled people who are both intelligent and able to work. Two words: Stephen Hawking!

8. Have our own homes – It would appear the general consensus amongst society is that this is something disabled people cannot ever achieve. Of course, many of us do reside with family members, myself included. But there are also those who can and do, rent or buy their own property. Some are able to live independently, while others require assistance from carers.


This is just a brief overview of the ways in which society misjudges the potential and capabilities of those of us with disabilities.

I’d love to hear more examples from you – comment below.

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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.