About Me – Page 7 – Disability & Lifestyle Blog

Get To Know Me | Interviewed by Wheelescapades

I recently collaborated with fellow disability and lifestyle blogger Gemma Orton, aka Wheelescapades, on a ‘20 Questions‘ blog post.

We initially got chatting on social media and found we had a few things in common ~ We’re both arty/crafty types, we have a mutual love for all things Disney, and we are both wheelchair users. Gemma has Spinal Muscular Atrophy Type 2 (SMA2), while I have Ullrich congenital muscular dystrophy.

To get to know each other even better, we gave each other free rein to ask 20 personal questions!

Here you can find my previous post, in which I interview Gemma.

And below are my answers to Gemma’s 20 questions…

1. What made you decide to write a blog?

I had been thinking about it for a long time, though it took me several months to begin. I wanted to do something productive and worthwhile but didn’t think anyone would care or be interested in what I have to say.
They say you should write what you know. I have been disabled since birth and so consider this my expert subject. However, disability isn’t a particularly popular or fashionable topic to blog about. I knew it would be a challenge and it has been. I do feel like I’m constantly playing catch-up and at times I wonder if it’s worth the time and effort. But when I receive positive responses from complete strangers, I am reminded why I’m doing it.

2. What do you want your blog to achieve?

I want to raise awareness of muscular dystrophy, particularly Ullrich congenital muscular dystrophy which is the rare and little-known form that I have. I want to share my thoughts and experiences, having lived my whole life as a physically disabled individual, in the hope that it may in some way help others.

3. What is the most difficult thing for you about having a disability?

Blimey, I could write a list! There are many challenges and frustrations. My condition is progressive and so the difficulties become greater with age. I think perhaps, for me, the most difficult thing about living with Ullrich congenital muscular dystrophy, is the limitations it inflicts. I am limited physically – I cannot run, dance, walk or even weight-bear. Just to be able to stand and support my own weight would make a world of difference! I am life-limited! Yes, UCMD is a life-limiting condition. I will not grow old or see my new baby nephew become an adult. Furthermore, my quality of life is limited. To put it briefly, when I am ill I’m REALLY ill. I have spent much time in hospital with respiratory related issues including repeated bouts of pneumonia, pleurisy, and a collapsed lung. I have literally lost months of my life to UCMD – housebound, unable to eat and reliant on non-invasive ventilation.

4. What is the biggest positive about having a disability?

The positives are much more light-hearted! Concessions, being able to skip to the front of the queue and designated parking (although disabled bays are often occupied by sports cars lacking a blue badge!)

5. If you could only eat one food for the rest of your life what would it be?

Hmm, tricky! I do like variety. I guess I’d have to choose… mash potato?! That way I could always mix it up by adding herbs from the garden (or is that cheating??)

6. An apocalypse is imminent, you have 30 minutes to prepare, what 3 items do you pack?

Well, I guess if the apocalypse is coming then it doesn’t really matter as we’re all doomed anyway?! But, I think I would still pack a bottle of Lucozade (I live on it! Purely for the energy boost), my dog and my family!

7. When making tea would you pour the milk or water in first?

Water!

8. What is your favourite way to relax?

I like to shut myself away, snuggle up in bed or on the sofa, and listen to music or watch a good film.

9. If you could interview any human, dead or alive, who would it be and what would you ask?

Wow, I really don’t know. God! (who I don’t believe in – what a cop-out) He has a lot to answer for.

10. What would be your dream job?

I’m one of those people who never knew what they wanted to do. I’ve never been career focused or academically ambitious. All I ever wanted was to have kids! But, if I could be absolutely anything, I think I’d be a dancer. I’ve always loved everything about dance. And yes, I’m a huge Strictly fan!

11. You’ve just won 10 million pounds (congratulations!), what 3 things would you do with the money?

Sort my family out – erase any debts and buy them homes, cars and whatever else they might need or want. Make sure my closest friends are comfortable! Buy a holiday home(s). And finally, a home for myself, FULLY adapted!

12. Where in the world would you most like to visit and why?

Australia. For as long as I can remember I have always wanted to visit Australia. The snakes are a little off-putting but still, that’s where I’d head to first. Closely followed by America. I’d absolutely love to do a road trip – Route 66!

13. What one thing would you change about yourself?

Only one?! Again, I could write a list. Buy I’d have to say my body. It doesn’t work too well and I’m flipping uncomfortable in it!

14. If you could play any part in a film, past or future, real or fiction, who would you be?

Men get all the really great roles! So, if I were male I think I’d play the Joker in The Dark Knight. How much fun would that be! Since I’m not a man, I’d play… I don’t know!! Maybe one of the sisters in A League of Their Own (1992) or Uma Thurman’s roles in either Pulp Fiction or Kill Bill.

15. If there was a pill that would freeze you at your current age and you could live forever as you are now, would you take it? And why?

Nope, definitely not. I wouldn’t want to live forever. It would get pretty boring after a while! Plus outliving all my family and friends would be hell.

16. If you could trade lives with one person for an entire day who would it be and why?

My brother. He has the life I’ve always wanted. He is physically fit, handsome, funny, charming, popular, successful and he has a lovely wife, baby and home. Of course I don’t resent him for it and I want nothing more than for him to be healthy, happy and fulfilled. But to experience his life for just one day would be bliss. I’d never ask for anything else.

17. If you could time travel, where would you go?

Good question. There are so many periods throughout history that I’d like to visit. But it would be great to go back around 50 years, when my parents were kids and my grandparents were young. I never knew my maternal granddad who died when I was a baby. So I’d especially love to meet him.

18. If you were made Queen and allowed to pass one new law, what would it be, and why?

Argh, the pressure! I have no good answer to this. So I think I’ll just say longer sentences and harsher punishments for serious crimes. There really is no deterrent in this country.

19. What personal trait has gotten you in the most trouble?

Voicing my opinion and failing to filter! Over the years I have become more outspoken and more impassioned about certain issues. I tend to over-analyse and question everything. Oh and I am rather stubborn. If I believe something in something, I won’t budge.

20. As a child, what did you wish to become when you grew up?

Just happy I guess. As I said before, I never had a particular job or career in mind. I’ve considered various options and ideas over the years. But all I ever really wanted was a home and a family of my own. That’s it. Not much to ask, eh?

I don’t think it is.

I really hope you enjoyed this collaboration with Wheelescapades. Let me know in the comments.

I’d also love to hear from you and find out how you would answer these questions!

To keep up to date with Gemma, go and check out her blog and connect with her on social media.

https://wheelescapades.com/

https://twitter.com/gemmaorton

https://www.instagram.com/wheelescapades/

https://www.facebook.com/wheelescapades/

A Welcome New Arrival 🍼

Hi folks! How is your September so far? Mine has been pretty amazing for one very important reason.

At the end of August, my big bro and his wife welcomed their first child – a bosting baby boy! This makes me an incredibly proud and immensely excited auntie.

Here I shall refer to him aptly as Mr Squidge. But don’t worry guys, the new parents have gone with a nice traditional name that’ll see him through school unscathed.

Mr Squidge is, thankfully, a healthy, happy and content little bundle. He is a super cool character – by far the most chilled out baby I have ever known.

When he’s not closely examining ceiling lights (which are hugely fascinating!) or contemplating life’s many mysteries, Mr Squidge enjoys milky time, sleepy time and lots of poopy time!

A particular highlight was when he casually peed on his granddad’s lap! Well, when you’ve got to go…

Squidge is now three weeks old and it’s amazing to see how much he has developed already. His baby blues are wide open and ever inquisitive, and he is determinedly trying to hold his own head up.

Today, my mom and I spent all afternoon with him at our house. His Mama was here too of course. He’s not quite advanced enough to drive himself over. Not yet anyway.

While I was holding him, he spent quite some time studying, and trying to grab my face, no doubt giving me the once over. Can’t blame the kid really. I’d be suspicious of me, too.

We’re a small family, fortunate to live in close proximity. Being only a 10 minute drive away from my new baby nephew means that I can see him often and be a hands-on auntie (or as hands-on as my disability will allow).

I can’t wait to watch him grow, to comfort him, read to him, get messy at meal times, to blow bubbles, paint, draw and play with Play-Doh! Come on, who doesn’t love Play-Doh?!

But equally I’m reluctant to wish away the time and fast-forward his life. Every day is so precious and so cherished. …Too gushy??

Anyone who knows me personally will tell you how much I love kids. Give me a gaggle of kids over a room full of adults any day. The play, the silliness, the cuddles; the unpredictability and informality – what’s not to love?

So, suffice to say I am on cloud nine right now. If you read my recent life update, you will know that things have been somewhat stressful of late. But, the squidgey new addition to our family has truly mitigated all other worries.

Life Update ~ Carers, Hoists and OT’s

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

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

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

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

Care

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

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

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

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

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

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

Hoists

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

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

Dealing with Community Occupational Therapists

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

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

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

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

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

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

And now…

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

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

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

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

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

The Kindness of Strangers | Wheelchair Life ♿

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

As 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 any toes; we are also bum height! 😣

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

With that in mind, those few kind words from one generous old lady truly made my day. 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 (disabled people) cannot manage by ourselves. However, I personally cannot construe it as anything other than sincere concern and consideration 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 show some gratitude and have the courtesy to decline their offer politely.

#respecttotheoldies ✌💗

#MuscularDystrophy

#WheelchairLife ♿

Follow me on Twitter

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.

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.
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.
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…
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.
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.
Tissues – you can guarantee the one day I don’t put a tissue in my bag is when I’ll desperately need one.
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!
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.
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!
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.
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.
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?
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.
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.
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!

Walking vs Wheelchair: Accepting the Need for a Wheelchair

I was recently invited to write a guest post for the lovely SimplyEmma.

You can view my post for Emma here.

I’ve noticed a lot of discussion, within Facebook groups, 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 of no use to me whatsoever.

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.

Not that I have a choice.

Learn more about me…

Since I’m fairly new to the blogging scene, I thought it would be beneficial for all if you knew a little more about me and my everyday life.

As someone with a disability, the inevitable question arises now and again: how does it (in my case muscular dystrophy) affect you?

There’s no easy answer to this question, particularly since it’s a progressive condition, meaning that symptoms worsen over time. Furthermore, there are many different types of muscular dystrophy, all of which vary considerably. As in life, no two people are ever the same.

To give you some insight I have decided to offer regular snippets of my experience with Ullrich congenital muscular dystrophy.

I had considered writing a detailed piece about the everyday challenges I face and how I have adapted over the years. But in the end I felt that might be a little, well, boring for you guys. Plus, this open diary (if you will), can be ongoing, allowing those who are interested to see how my condition continues to develop.

Perhaps this will help others, particularly those younger than I as well as parents of children with muscular dystrophy. Perhaps…

For the first week I will upload daily to give you an idea of where I’m going with this! Thereafter, I’ll upload once a week.

So, here is the first entry…

I miss… snuggling up in bed without having to wear a mask to breathe. As anyone out there who relies on NIV will know, it’s an incredibly difficult thing to adapt to. The mask is (for me anyway) extremely uncomfortable and needs regular adjusting throughout the night to avoid sores and the escape of air. I have always struggled to get to sleep without the addition of a mask tightly strapped to my face. It is of course something I wish I didn’t have to endure but, it serves its purpose. Quite literally – adapt or die!

I’m thankful… I can still breathe well enough to manage without daytime NIV (non invasive ventilation). I sincerely hope I never come to rely on my BiPAP machine for daytime support as well as nocturnal ventilation. However, I’m realistic and so am aware this could happen in the future. Therefore, I try my best to make the most of my days as they are – mask free. As cliché as it sounds, your life really can change in a day. So make every day count!

The [Un]dateables

In February 2017, I wrote a piece for Muscular Dystrophy UK about the Channel4 TV dating show, The Undateables.

Last week, Channel4 aired the final episode of its reality series The Undateables, a dating show for disabled people.

For those who are unfamiliar, individuals with any disability are invited to appear on the show, now in its sixth season.

With the help of dating agencies and personal introduction services, they take part in blind dates, speed dating and match-making in the hope of finding love.

Now, I’ve seen almost every episode since it premiered in 2012, and I have to say I am a fan and supporter.

I appreciate and understand the controversy surrounding the show, particularly within the disabled community, although I personally disagree with much of the negative criticism. For this reason, as someone with a physical disability myself, I would like to offer my point of view.

Firstly, I’d like to point out that all participants have applied of their own free will. Following their appearances, all have reported a positive experience, even those who did not find love as a direct result of the show.

Tammy from series 5 says, “I put myself forward for The Undateables. At no point during filming did I feel like I was being used for entertainment. It’s an entertaining show [but] we all just want to find someone who loves us for us.”

The program has been invaluable and life changing for many, leading to long term relationships, marriage and babies. Furthermore, despite the claims of some, disabled individuals have not been coupled exclusively with other disabled people.

For example, Brent, a young man with tourettes married his able-bodied date Challis.

Steve with Crouzon syndrome married able-bodied Vicky whom he met on Twitter after the show gave him much needed confidence – he remains friends with his able-bodied date from the show.

Then there’s Carolyne from the first series, whose childhood sweetheart left her when she became paralysed following a spinal cord lesion. She later met Dean who is able-bodied. The couple had their first child together in 2014.

These are just a few of the many success stories resulting from the show.

Some critics have called into question the editing, which it can be argued is an issue with any reality TV show. However, taking into consideration the accounts offered by the participants themselves, it would seem to me that great care has been taken to ensure fair and accurate representation.

Again, I personally have no issue with the tone or editing, and have never found it to be exploitative, patronising, sensationalist or insincere. Quite the opposite in fact, I feel The Undateables realistically and positively depicts a range of disabilities, thereby raising awareness and breaking down social barriers and stigma.

James, who has Asperger’s, took part in the show last year. He told ITV’s This Morning, “It [the show] provides a lot of education on a wide range of things, not just conditions… The fact that people will tune in knowing they will learn a bit more, maybe take away the stigma, is a very positive thing. It paints a very positive picture of British audiences.”

The format itself is understandably a contentious issue: why is it not the norm for disabled people to participate in mainstream dating shows such as First Dates, (also a product of Channel4), and ITV’s Take Me Out?

Why must the disabled community be confined to a show exclusively for them? There is no definitive answer, though I would argue that it comes down to choice and demand.

As previously stated, those who partake make the choice to do so. Many have learning disabilities and are supported by family, friends and caregivers, as viewers will know. Therefore, to suggest they are being taken advantage of by producers, which some critics have, I feel implies that these people are not able to form rational decisions and make up their own minds. This is inaccurate and unjustified.

Secondly, the show is now in its sixth year (as of Feb 2017), which proves there is continuing demand from both the viewing public and applicants eager to find love, friendship and companionship.

I have found that questions and accusations such as the aforementioned are often posed, more often than not by those with disabilities. This indicates to me that, in fact, it is not predominantly the able-bodied community who have issues with the show. Yes, you may hear the occasional, ‘bless them’, ‘aw, how sweet’ and ‘good for them’ from able-bodied viewers – how very dare they indeed!

But to conclude that this is a form of ‘inspiration porn’ is in my opinion, vastly overstretching the mark. I take issue with the term ‘inspiration porn’, particularly in relation to The Undateables.

Frankly, even if viewers are in some way inspired by the determination and go-getting attitude of those they see on the show, why is that so awful?

Paralympians are equally as inspiring as Olympians. Yet there are some, particularly in the disabled community, who deem this to be ‘inspiration porn’. That is to say, people draw inspiration from disabled athletes solely due to their disability rather than their sporting achievement, as well as to feel better about their own lives. Personally, I think this is nonsense and insulting to both the able-bodied and disabled.

I cannot speak for the entire viewing public, obviously, but I have watched the show with friends and family over the years, and the feedback has always been one of support and genuine happiness for the love-seekers. Not one person I have spoken to has ever indulged in this so called ‘inspiration porn’ to, as critics say, feel better about themselves. This is the one accusation that frustrates me the most.

Okay, the title… Are Channel4 saying that we, the disabled, are undateable? Put simply, NO!

Producers have themselves stated that the title is to challenge this common misconception within society. Furthermore, as viewers will know, during the opening sequence of each episode, the prefix clearly falls from the word ‘dateables’, thus indicating the contrary.

The show itself is proof that no one is undateable – an eye opener to many viewers who may have previously thought otherwise, or have just never considered the fact that like them, we (the disabled) also need, want and desire love and intimacy.

For one reason or another, there remains a section of society that has never encountered anyone with a disability. Through no fault of their own, they consequently may be ignorant to the needs, desires and feelings of disabled people. I think The Undateables is a great way to introduce this concept to such individuals.

As James with Asperger’s says, the show is successfully removing stigma and raising awareness.

I have an older brother with complex learning disabilities, and so I’m able to draw from his perspective in addition to my own. He has expressed a keen interest to appear on The Undateables, and my family and I would be more than happy for him to do so. Neither of us feel alienated, uncomfortable, ridiculed or patronised by the show. Again, I do appreciate the criticism but for those who bother to watch it with an open mind, I believe you will find it to be well-meaning, sincere and sympathetic.

Those involved have benefitted, it has given others in similar circumstances the confidence to look for love, and it has made society realise that we all have basic human needs and desires, and the right to pursue them.

It’s easy for viewers to criticise on social media, having watched only one episode, or even one at all. But I implore you, ask the participants. Their response says it all, for me anyway. It seems to me the majority of negative critics haven’t actually seen the show and are therefore judging it superficially. It is certainly not a freak show and is not treated as such.

The dating agencies, often run by the parents or relatives of those with disabilities, aim to match clients based on common interests. Disabled people are not matched with others with similar disabilities. To assume so says more about those who think this than anyone involved with The Undateables.

So finally, I urge the harsher critics out there to actually WATCH (preferably more than once!) before judging so narrow-mindedly.

Who knows if Channel4 will commission another series of the popular show. Based on viewing figures, I’m guessing it’s more than likely they will. If so, I’ll certainly be tuning in.