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An introduction…

First and foremost, welcome to my lifestyle and disability blog! Many thanks for stopping by. Here you will find the thoughts, feelings and experiences of a 28 year-old woman who happens to be a wheelchair user. I have a condition called Ullrich Congenital Muscular Dystrophy. It is rare, progressive and sadly widely unrecognised. There is currently no cure for UCMD.

 

Interview with Matt “Hambo” Hampson | Parallel London 2017

Here is my latest interview 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’.

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.

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.

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).

‘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.

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.

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.

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.

 

The kindness of strangers | Wheelchair Life ♿

I was out shopping yesterday in my trusty Quantum 600 powered wheelchair. While the many other shoppers bustled past without a second thought, one considerate old lady stopped and asked if I needed her help to reach anything.

As my fellow wheelchair users will know, shopping can be frustrating for various reasons. Not only are we grappling with the general public (the pushing, shoving and impatience), and trying to navigate narrow aisles without running over anyones toes; we are also bum height! 😣

Not only that – reaching anything both above or below torso level is a challenge, particularly with elbow contractures and poor grip (as in my case).

So, just those few kind words from one generous old lady truly made my day, yesterday. It really is the little things in life – the small gestures – that make a big difference. If only everyone was so thoughtful!

I am aware that some disabled individuals may take offence at such an offer, presumably seeing it as a sign of pity – the implication being we cannot cope by ourselves. However, I personally cannot construe it as anything other than sincere concern for a fellow human being. We all need help and support every once in a while, regardless of ability or circumstance. Even if you don’t require assistance from others, at least have the courtesy to decline their offer politely.


#respecttotheoldies ✌💗

#MuscularDystrophy

#WheelchairLife ♿


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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.

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


If you liked this blog post, please check out my Twitter and Facebook Page

 

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!

Please get in touch and leave a comment to share your experiences.

 

My interview with Samantha Renke for Parallel London

I recently interviewed up-and-coming disabled actress Samantha Renke on behalf of Disability Horizons.

Sam told me about her life growing up, her disability and her dreams of becoming an actress despite her brittle bone condition. She also told me all about her involvement with Parallel London 2017.

Here is the link to the interview on the Disability Horizons website.


The 3rd September sees the return of Parallel London, a mass-participation race for people of all abilities. Regular 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.

Would you please tell Disability Horizons readers 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.

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.

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.

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!

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.

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.

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!

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.

By Carrie Aimes

You can check out Carrie’s blog at www.lifeontheslowlane.co.uk and follow her on Twitter @claimesuk or on Facebook

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
Simply Emma
Leanne’s wheel life

 

Suprapubic catheters

The important issue of independent toileting is often discussed within the disabled community. I regularly see the topic arise on social media.

As a wheelchair user, this is something I have struggled with my whole life. Believe me I have tried every method and contraption available.

In 2011, after careful consideration, I opted for a suprapubic catheter. Following many requests for information and advice, I have written about my experience. As it is a sensitive and personal subject, I have decided to attach the file below rather than to upload as a regular post.

*Disclaimer* This is my experience and in no way represents that of any other. Your individual circumstances will invariably affect the way in which your body responds to a suprapubic catheter.

As a precursor; I have Ullrich congenital muscular dystrophy. I am now 28 years old and unable to weight-bear. I have full sensation and an otherwise healthy, fully-functioning bladder. I have never suffered from urinary tract infections. My reasons for choosing a suprapubic catheter are purely practical.

If you require further information or wish to ask a question, please do contact me.

Suprapubic catheters – My experience