Tag: Muscular Dystrophy

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/

Getting to know… Wheelescapades | 20 Questions

One thing I love about being a disability blogger is the fact that I am able to interact with other like-minded bloggers.

I recently got chatting with the lovely Gemma over at Wheelescapades. We quickly realised we have a fair bit in common: we’ve both studied art, we have a mutual love for all things Disney, and we both have muscular dystrophy, albeit different forms.

So, we thought it would be fun to collaborate on a blog post. To learn even more about each other, we decided to ask 20 juicy questions. You can find my answers to Gemma’s questions over at her blog!

Here are her answers to my 20 questions…

1. What is your biggest ambition in life?

I wouldn’t say I’m the ambitious type. There’s lots of things I’d like to see and do as you’ll find out throughout my answers. But when it comes down to it I’d just like to be content and happy. For my friends and family to be too. It’s the simple things that make life.

2. What is your dream job?

I love anything arty and creative. I’m too indecisive to give you one dream job title, but I’d like to be in an atmosphere where I am surrounded by creativity. I enjoy making things, drawing, textiles and I’m going to say I would like to work in theatre design, costumes and props.

3. What do you most regret?

I don’t think I have any major regrets. That’s no way to live.

I do often regret not ordering dessert when I’m out with friends and theirs arrives leaving me sugar craved.

4. If you could live anywhere in the world, where would it be and why?

Although there are so many places I’d love to visit, I think I’m perfectly happy living where I am. I love England, it’s history, its heritage, the traditions, and yes the weather! I know it’s something everyone moans about, I’m guilty of that too. I know it can be unpredictable and awfully grey at times, but I like the differing atmospheres. We are lucky enough to get sun, snow and thunderstorms, but nothing too extreme or scary.

On a smaller scale I like the area I live in, Norfolk. I’m in a small town, not far from the city, the sea and the countryside. Norwich is a diverse city of art, architecture and music. I can also easily get to London.

5. Dream dinner party guests: if you could invite any 5 people, alive or dead, who would you choose and why?

Alexander McQueen, Tim Burton, Andy Warhol, Stephen Hawkins, and Banksy. All creative, passionate and intelligent minds that know what they are/were and do their thing with conviction. Need I say more.

6. If you could visit any time period throughout history, when would it be and why?

Well I don’t think wheelchair access is going to be very reliable however far I travel back. As a mega Downton Abbey fan I’d love to dress 20’s style and attend one of Lady Mary’s Luncheons.

I’d also love to go back and spy on myself as a child, my Mum as a child or my grandparents.

7. If a genie were to grant you any 3 wishes, what would you wish for?

This is the one I’ve been struggling with (I take these questions seriously!). Do I go for the big things: world peace, a cure for SMA, an end to poverty?? Or the smaller stuff like a fully accessible luxurious house, enough money to help friends and family, to have a talent that can make me a living?? Basically it depends how good this genie is and what the rules are. There are always rules and consequences to these things! Maybe I shouldn’t rub the lamp…

8. What is your ideal holiday?

My dream is to visit Florence, Italy. The complications, discomfort and fear of losing or breaking my wheelchair has meant that I haven’t flown since I was a child.

I’m not a ‘by the pool girl’, although I do love a spa! My ideal holiday would involve seeing the sights, being around the locals, visiting little cafes, museums and galleries, plus a wheel along a river and cocktails on a roof – With warm but not sweltering weather. Don’t ask me where this destination is, although I’m open to suggestions.

9. If you were Prime Minister for one day, what would you do?

Cancel Brexit. Can I say that? Shouldn’t we have learned by 2017 a united world is a better world.

I think I might need longer than a day!

10. Who or what inspires you most in life?

I can be inspired by the simplest things. I wouldn’t say that one event or person has inspired me to be something. It can be a book I’ve read, a chat with a friend or a film I’ve seen. All these things can inspire thoughts, make me want to be a certain way or do a certain thing. In fact, I am often inspired just people watching. Seeing how people react can trigger a thought or idea.

11. Could you please share 3 interesting facts about yourself?

  • I won first prize in a national textile design competition. My prize was to visit Première Vision in Paris.
  • I eat almost everything with a fork, including Wotsits.
  • I haven’t seen my natural hair colour since I was 16. I’ve had almost every colour, including blue and red at the same time. I’m now 32.

12. How would you describe yourself in 3 words?

Persistent, sarcastic, tea-drinker.

13. If you could spend one day in someone else’s shoes, who would it be and why?

Can I say my cat even though they don’t wear shoes?

I’d lay around on the windowsill, worry free, watching the day go by. Maybe take a little nap and have some chewy treats. Get “cooed” and massaged on the head if I’m good.

14. What is your biggest fear?

Spiders! I really do hate them. And unfortunately most of my PA’s do too. I didn’t think of that question when I interviewed did I?! – Job title ‘spider catcher’!

Umm on a more serious note… everyone’s fear: losing family and friends.

Disability-wise: losing strength, the independence I have and communication.

15. What annoys you most?

Although you haven’t read question 18 yet, you can refer to it here.

I think moaners annoy me the most (yes I know I moan too, we all do). You know those people that make a big deal of nothing. I know everybody is different, we all have our issues and our weaknesses. But people, stop sweating the small stuff and appreciate what you’ve got. Enjoy the washing up! Appreciate the walk to the shop for milk to make yourself a brew. Yes you’ll get colds, and they are irritating, but the likelihood is you’ll be over it in a few days.

16. What makes you happy?

Being around friends and family, my cats, a day in the sunshine and drinking tea. Netflix days, ache-free days, a facial at the spa, a good book, Seeing the end result of my craft project, festivals and the outdoors too!

17. If your life was a novel, what would the title be?

‘Wheelescapades’ – the title of my blog, as that took me long enough to think up. I’m no good at these things.

18. What is your disability, and what frustrates you most about it?

I have SMA 2 (Spinal Muscular Atrophy Type 2).

I think it’s probably the small things that frustrate me the most. The little day-to-day things that most people take for granted. Yes I’d love to travel the world problem free and have an amazing job without limitations. But it’s not just me, and my disability that doesn’t get that.

What I’d like is to be home alone (with at least 7 cats), make myself a brew, switch on the TV, do all the crafting I want and get up for a wee when required! I’d love to fall into bed exhausted (without connecting my feed and breathing machine), sleep comfortably and uninterrupted and meet a friend for breakfast at the drop of a hat. I’d even be up for doing the washing up!

Also I’d quite like to just have a cold without wondering if/when it will put me in hospital.

19. In theory, if a magical cure were available, would you want it or not?

Okay, I know I’m probably supposed to say no here, as someone who is trying to change people’s perception of disability, blah blah… But yes, I would take that cure. I wouldn’t change my past life for anything. If I could keep the knowledge I have, the friends and family I’ve got and the experiences I’ve been through, then yes, give me that cure!

20. Why did you become a blogger?

I get into some awkward, funny and difficult situations mainly due to my disability. I also get different experiences and treatment with/from people because I am a wheelchair user. My friends and I would always joke about this; the good and the bad, as a way of coping I guess. Sometimes you have to laugh or you’ll go crazy. Often saying “if only people could hear us” or “I should write a book of all this drama”. Well I guess blogging is my book of tales.

I also wanted a serious side to the blog. Not many websites give you the gritty details of a venue’s (in)accessibility. Yes, they are starting to declare themselves ‘wheelchair accessible’ or claim to have an ‘accessible toilet’. Bbut accessible can mean so many different things. Just getting through the entrance doesn’t make a venue accessible. I wanted to chart good and bad access and to get people to look at it more.

I’d like to thank Gemma aka Wheelescapades for taking the time to answer my questions, and for being so candid!

I’d also love to hear from you! How would you answer my 20 questions?? Please leave a comment.

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/

 

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

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.

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.

Lost time

I’m back- finally! As you may know I was struck down with a particularly bad lower respiratory infection during the New Year period, and was consequently ill for over a month. Until a few days ago I was unable to leave my home throughout that time. So unfortunately, 2017 has not begun how I had hoped or expected.

Anyone with muscular dystrophy will know a cold is never just a cold for us. I dread the British winters and the circulation of unavoidable viruses it brings. For me, sneezing and a sore throat inevitably and rapidly develops into a full-blown chest infection. Bring on the 24/7 NIV (non-invasive ventilator), regular nebulisation, antibiotics and inhalers.

At times I’ve had no choice but to admit defeat and blue-light it to hospital. But stubborn as I am, if I think I can cope with the resources I have within my home, that is where I choose to remain.

I have noticed over the past few years the duration of my illnesses have become increasingly prolonged. I missed the entire summer of 2015 to a chest infection which lead to pleurisy. From the end of May to the end of July, I was stuck in my living-room, sat in the armchair night and day with my trusty vent keeping me going. Several GPs and physiotherapists attended but despite their best efforts, none could offer any productive help or advice – nothing I wasn’t doing or didn’t already know.

I was exhausted mentally and physically, but despite my ongoing struggle I couldn’t help but feel guilty for putting my parents, whom I live with, through the experience. They have no choice but to watch helplessly and with desperation as their youngest child battles with her failing body. “What can I do?”, they ask. But there’s nothing they can do. I always tell them I’ll be fine, it’s just a matter of time.

Having thoroughly depressed you with that cheery and fairly pointless update, I’ll bring this particular post to a close. Now finally on the mend, I intend to resume where I left off with the blogging. ‘Oh goodie!’, I sense you cry with enthusiasm. I realise I’m more than likely rambling away to myself here but writing serves to make me feel purposeful, perhaps even contributory in some way.

January has for me been lost forever and I can’t get that time back. It’s so frustrating being unable to do… anything! Even just going out for a ride in the car is a major highlight for me right now. When all you see day after day is the same four walls from the same seat in the corner of the room, cabin fever soon sets in.

Today, seeing the first daffodils of spring starting to emerge filled me with much needed optimism. There will doubtless be future episodes of ill health to contend with. But for now I plan to recharge, re-energise and refuel. Bring it on!

The Winter Edit: Part 1

5 Tips to Keep Warm this Winter

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

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

1. Chilblains:

Because I am unable to weight-bear, I suffer from poor circulation, making my feet permanently cold. I have what can only be described as corpse feet – purple and puffy!

I have tried all sorts of remedies over the years to treat recurrent chilblains, but I’ve found the best to be Gehwol Fusskraft Red cream (available on Amazon).

I slather it on generously before putting on a pair of thick woolly socks, and find my feet are subtly but noticeably warmed and chilblains are kept at bay.

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

2. Layering:

We all know it’s best to layer clothing when cold. However, this is not so easy to do when you’re a wheelchair-user.

Getting dressed is a daily struggle for me, so having to battle with more than one top fills me with dread.

So, my advice put simply; if you can layer, do. If like me you can’t, keep reading…

I live in leggings as they’re stretchy and comfortable. You can buy leggings everywhere and anywhere these days but I favour Marks and Spencer heatgen thermals.

There are socks, tights, vests, long sleeved tops and of course the leggings I love. Again if you’re able to, I recommend wearing these items under your usual attire for added insulation. But they’re ideal to wear alone too. M&S also feature a men’s thermal underwear range.

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

uniqlo

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

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

3. Fabric:

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

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

4. Food:

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

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

5. Home Heating:

It’s important to maintain a warm and consistent temperature in your home throughout the winter.

Exposing yourself to extreme and varied temperatures can leave you vulnerable to ill health and infection. Government guidelines advise heating our living rooms to 21C (70F).

Most of us now have central heating which can even be controlled from our mobile phones.

My family home is primarily heated by a wood burner which warms the whole house.

However, I cannot prepare and light the fire myself due to my disability. I therefore store a fan heater in my bedroom which is simply operated by the flick of a switch. There are many different electric heaters now on the market. Here’s a budget option and a higher end option for you.

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

Honourable Mentions:

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

I hope this was helpful! If so, please SHARE 

Winter Edit: Part 2 ~ Tips to Stay Well through Winter

My Life with Ullrich Congenital Muscular Dystrophy

Allow me to introduce myself.

I’m Carrie, born in 1988 with the rare, genetically-inherited condition Ullrich congenital muscular dystrophy.

“What’s that?”, you ask. Let me explain…

The congenital part means that it is present from birth. Ullrich is just one subtype of congenital muscular dystrophy. It is also progressive and life-limiting, meaning that symptoms become gradually worse over time.

There are, according to the muscular dystrophy UK website, over 60 forms of muscular dystrophy. The severity is wide-ranging.

In recent years, I’ve learnt that the number of people, worldwide, living with muscular dystrophy, is far greater than I previously thought. Social media has introduced me to many – some of whom I’m fortunate to call friends.

Through discussions with fellow MD‘ers, I’ve realised that our symptoms and experiences differ significantly.

Despite what some medical professionals believe, there is no definitive check list! For example: ‘everyone with UCMD will be affected by X, Y, Z at this age, and they will not live beyond 40 years old‘. This is simply not the case.

A Brief Introduction to Muscular Dystrophy:

  • 70,000 people with MD in the UK
  • Affects 1-1000 people
  • Genetically inherited muscle wasting condition
  • Progressive
  • There is currently no cure for MD
  • There are many forms of MD – over 60
  • The most commonly recognised is Duchenne MD
  • UCMD is a type of congenital MD. It affects c.50% of the 400-500 people with CMD
  • UCMD is caused by the lack of a vital protein needed to support muscle cells.

 My Experience:

  • Born with dislocated hips and ‘floppiness’. At 2 weeks of age I was put in plaster for 12 weeks to realign my hips. 20161130_211543
  • I didn’t crawl, climb or walk at the normal rate. From around 7 months old, I ‘bum/belly shuffled’. I started to walk at 19 months old. My parents were very much aware that something wasn’t right, and so they pushed for a specialist referral. My mother was told by her GP that she was an “over-reactive mother”!
  • 4 years old – muscle biopsy performed by Dr Helen Roper at Birmingham Heartlands Hospital. I was diagnosed with congenital muscular dystrophy. 20161130_213022
  • My parents were told VERY little – only that I would experience overall muscle weakness but mental ability would not be impaired. Doctors didn’t know if or how my condition would progress, nor if it would stabilise following puberty. They didn’t know if I would ever need to use wheelchair.
  • I wore specially made leg splints as a child, enabling me to walk short distances around the house and school.
  • For longer distances, I used a ‘buggy’ or manual wheelchair.
  • I have never been able to walk up or down steps or stairs.

  • At age 7, I had my tendons released in both feet and ankles as they were turned inwards. Following the operation, my feet were held in position in plaster casts for 6 weeks.
  • I stopped walking quite abruptly at age 10. At the time, this was unexpected and incredibly distressing for both me and my family.
  • I became non-ambulant and started to use a powered wheelchair. We raised the money for my Jazzy Pride electric wheelchair through sponsored events, charitable donations, fundraisers and public appeals; my story was put in newspapers and school newsletters (this was pre-social media, folks!).
  • I then stopped wearing the leg splints as I was no longer walking. I could finally wear nice shoes!
  • From around 11 years of age, I began to wake every morning with debilitating headaches and nausea. Many years later, we learnt that this was due to a nocturnal build up of carbon dioxide in my body, having failed to effectively expire the waste gas during sleep.
  • From the age of 4, I had 30-60 minutes of physiotherapy once a week at school. This mostly involved stretches to maintain what flexibility I had, but physiotherapy came to an end when I turned 14. Literally, one week my physiotherapist was there, and without a word of warning, the next week she wasn’t. I was then told that if I wanted to continue with my physio, it would have to be carried out by parents or a carer.
  • Following a second muscle biopsy at around the age of 18, my diagnosis was narrowed down to Ullrich congenital muscular dystrophy. At the time, this really didn’t mean anything to me. I didn’t learn anything new and nothing changed. It wasn’t a case of; we’ve defined it as UCMD which means we can give you this treatment. There is no cure for muscular dystrophy. And so, I just carried on with my life as I had been.20161130_212939
  • I attended mainstream school before moving on to a Sixth Form College where I completed A-Levels in Fine Art, English Language and History. I then attended a local university, commuting everyday via taxi. After three years I achieved a BA (Hons) degree in Art and English Literature.
  • I have a significant ‘S’ shaped scoliosis (curvature of the spine). This became much more severe following the growth of puberty.
  • At around the age of 9, my parents and I were told I would need a spinal fusion to correct the scoliosis and prevent any further curvature. Again we were given very little information, no case study to refer to, and little time to make a decision. I do remember vividly how the seriousness of the operation was emphasised. In particular, “you could die!” stuck in my infant mind. In the end, we decided not to go ahead with the spinal fusion.
  • Scoliosis affects posture, balance, respiratory function and causes pain, discomfort, pressure sores and asymmetry of the torso.
  • It is very difficult to find clothes that fit because of my lumbar deformity.
  • Because of the scoliosis, my torso is squashed, and so too are my organs. This means that I become full, bloated and breathless after small quantities of food.
  • I have contractures of the joints & tightening of the tendons in my ankles, knees, hips, elbows and wrists.
  • Due to the weakness in my neck, I’m unable to lift my head from a pillow when lying flat.
  • I cannot sit myself up from a lying down position or support my own weight at all.
  • I’m unable to transfer independently, and at only 5.5 stone (77lbs) I’m usually lifted manually or otherwise hoisted.
  • I can’t turn or adjust my position in bed.
  • Because my movement is limited and I cannot exercise, I have poor circulation and very cold hands and feet. Corpse feet as I refer to them!
  • It is difficult for me to regulate my body temperature.
  • October 2011 – I opted to have a suprapubic catheter for practical reasons. I have no functional continence issues. Purely due to the severity of my contractures, muscle weakness and inability to transfer, there’s no other way for me to independently go to the loo. My SPC (suprapubic catheter) means that I no longer need the assistance of anyone else to carry out this personal task. Boys, don’t get me started – you don’t know how lucky you are!
  • I currently live with my parents in their house. I have a ground-floor bedroom and ensuite bathroom extension, built when I was 12 years old. My parents received a grant towards the cost but were means-assessed, and so they had to extend their mortgage in order to fund the excess! Prior to that, I had a bedroom upstairs which I accessed via a stairlift. Having lost the ability to walk at age 10, struggling up and down stairs and on and off the stairlift became impractical, hence the need for a ground-floor extension.
  • My parents remain my primary carers, although I also employ several part-time carers/PAs to assist with personal care throughout the week. This is council funded via Direct Payments.
  • As I have aged, my declining respiratory function has become the main cause for concern. Chest infections have become worse and more serious as a result.
  • A frequent hospital inpatient, I’ve had pneumonia more than five times, pleurisy twice and a spontaneous pneumothorax (collapsed lung) which required a chest drain.
  • Following a particularly bad bout of pneumonia in March 2012, I commenced nocturnal non-invasive ventilation. I use a Resmed Stellar 150 biPAP machine with the Resmed Swift FX Nano nasal mask.
  • NIV (non-invasive ventilation) ensures that oxygen and carbon dioxide levels are regulated. I no longer suffer from CO2 induced headaches or nausea.
  • Medication and treatments: BiPAP machine (NIV), Salbutamol inhaler, antibiotics on repeat prescription to treat chest infections, and I have a Nebuliser with saline and Salbutamol nebules to use when ill.
  • I now experience constant physical exhaustion and extreme fatigue.
  • Although my condition is progressive and life-limiting, there’s no way to determine exactly when my time is up. No doctor could predict what age I can expect to live to. As such, I prefer to put this to the back of my mind and try to live as ‘normal’ a life as possible. Whatever “normal” is!carrie-aimes-recent_with-permission

Doctors, though essential, cannot tell you how it feels to live with UCMD, or what day-to-day life is like. This is why I really appreciate the MD Facebook groups and the MDUK forum. People are free to talk openly with others who understand exactly what they’re going through.

If, as a child, I had known others living with the same condition as me, perhaps my life could have been enhanced with the benefit of shared knowledge.