Life, Stress & Coping Strategies

While I’ve been writing and contributing to various other projects, my blog has taken a backseat over the past few months. In all honesty, I’ve recently lacked all motivation and interest to write any blog posts.

I realise many bloggers feel this way from time to time – going through periods of having lots of ideas and enthusiasm, followed by weeks or even months of non-productivity.

I don’t want to go into the reasons for my lack of motivation. Suffice to say, I’ve had other things on my mind. This has resulted in fluctuations in mood, poor focus, zero energy, and insomnia.

For the most part, I’m happy and content with life as it is. Don’t get me wrong, it is far from ideal and there are things I wish were different – things beyond my control. But this is the case for most of us, right?

My point is, sometimes we need to take a break, de-stress and re-evaluate before moving forward. Inevitably, we all experience stress at some point in our lives, and we each have our own methods of dealing with it.


Here are a few of my coping mechanisms:

1. Music therapy ~

Music is a big part of my life and not a day goes by that I don’t listen to some form of music. Most of the time, I can be found wearing earphones. As soon as I have the house to myself, the first thing I do is put music on. I also listen to it every night before bed. If nothing else, it serves as a distraction and helps to prevent overthinking (something I’ll confess, I do a lot).

(Above: YouTube video of the John Lewis TV advert, featuring a little girl dancing carelessly around the house to the song, Tiny Dancer by Elton John. This basically represents me when home alone!)

There are songs appropriate for every mood and occasion. Music has the power to stir emotions, to inspire, to energize, cheer us up, remind us of past events and people. I think I’d go crazy without it!

Here is a recent guest blog post I wrote for Mitch Coles, listing some of my top tunes!

2. Time with loved ones ~

Nothing cheers me up more than babysitting my gorgeous baby nephew, who is almost 15 months old. That kid is truly the love of my life! I may be irritable and in the worst mood, but as soon as I see that little face, everything seems okay.

He’s now at the stage where lots of babbling, climbing (of my wheelchair!) and toddling is taking place. His expressions crack me up, and the way he flashes a beaming smile and puts his arms out for cuddles just melts my heart. On a bad day, there’s nothing better (in my opinion) than taking baby G for a ride on my lap while he beeps the horn again and again and again…

3. Alone time ~

Innately, I am a bit of a loner. I’m not a people person and am quite at ease in my own company. Of course, I enjoy being around those I love and care for. But I also need my own space to just…be! If I’m with lots of people for long periods of time, I reach a point where I need to escape and be on my own for peace of mind.

4. Get out the house ~

Another form of escape. Being stuck at home day after day (as is often the case for many disabled people) sends me stir crazy. Simply getting outdoors can be a huge relief. Sometimes I don’t want or need to go anywhere in particular. It just helps to get in the car and drive around country lanes to get some fresh air and perspective.

5. Avoid social media ~

It’s no secret to those who know me best that I’m no fan. Yes, it serves its purpose and I am fortunate to have met some great friends via social media. For me, this is really the only reason I persevere with it! But again, sometimes I feel the benefit to my state of mind when switching off and abandoning social media, if only for a few days.

This can be difficult as a blogger! But long ago, I promised I would never let myself become the type of person who never looks up from their mobile phone. Even now, I see people tapping away incessantly, unable to tear themselves away from their smartphone, and I wonder what they find to do.

Showing my age now, but I do miss the days before mobile phones were common place; when people actually stopped, looked around, appreciated their surroundings, lived for the moment and spoke to people.


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Turning 30…

Though I’d rather not admit it, I have a pretty big birthday coming up. In just over a week, I turn 30! It might not seem like much of a milestone to most people. But for those of us with muscular dystrophy, 30 is a big deal.

I’ve never really considered or cared much about age. Getting older has never bothered me, and I didn’t think I’d be fazed by reaching the big 3-0. But I’ll be honest, it is getting to me…just a little.

For various reasons, I’m not a fan of my own birthday at all. I’d rather it went unacknowledged and unnoticed. I hate any form of attention and am much happier when the focus is on other people. I’m definitely more of a hide in the corner type!

Back in October, I went on a five-day cruise to Amsterdam and Bruges, to celebrate my birthday. There are no other upcoming plans (at least, none that I’m aware of).

Those closest to me know I don’t like surprises (perhaps I am a bit of a control freak). So, if anything, all that’s left to come is a small family gathering – basically Sunday roast with the folks, the brothers, my sister-in-law and baby nephew. And that suits me just fine!


Muscular Dystrophy ~ A Life-limiting Condition

Accept it or not, the sad fact is, muscular dystrophy is a life-limiting condition. I’m aware of others who were told by medical professionals that they shouldn’t expect to live beyond the age of 20 (if that). In contrast, my parents and I were never given any indication whatsoever of my life expectancy. At no point were we told, ‘Carrie won’t reach adulthood’. Perhaps my consultants were being overly cautious. Perhaps they were just clueless! (I suspect the latter).

In a way, this allowed me to grow up in a state of blissful ignorance. For a long time, I believed I had just as much chance of growing old and wrinkly as the next person. It wasn’t until my late teens that I realised this wasn’t the case.

Now, I don’t want to get all deep and downbeat – just trying to keep it real (on the advice of certain people. You know who you are!).

Essentially, for better or worse, life has taught me to expect nothing. Expectation often leads to disappointment. These days, I try to go with the flow, I don’t make long-term plans or look too far into the future. I prefer to focus on the here and now.

Right now, I’m going to hold on to my youth for as long as possible by continuing to laugh at silly, childish things. I’m all about laughing, playing and having fun – believe me, I’ve had more than my fair share of serious!

And to anyone who doesn’t know otherwise, I’ll soon be 25, not 30 ~ thank’ya muchly!


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The Disabled Blogger Tag

In today’s post, I answer some great questions devised by Elin, over at my blurred world, who created the #DisabledBloggerTag.

There are many blogger tags out there, though this is the only one exclusively for disability bloggers – So, my thanks go out to Elin!

I’d also like to thank my friends, Fi Anderson (Mum, disabled blogger and campaigner), Simply Emma (UK travel and disability blogger) and the lovely Claire from a journey in my wheels, for including me in the Disabled Blogger Tag.

Without further ado, let’s get going…


1. When and why did you start your blog?

‘Life on the Slow Lane’ was founded in October 2016, so I’m still relatively new to the blogging scene. I had contemplated it for many months prior, but put it off as I simply thought no one would be interested in anything I have to say. I also didn’t want to rush into it without some sort of plan and objective. But, after much encouragement from friends who told me to just “get on with it”, I finally set up my website and immersed myself in writing. I do however, regret the name of this blog! On reflection, I really wish I had given it more thought.

2. Did you intend to talk about your disability online from the beginning?

Yes, this really was my primary focus. They say, to write well you should write what you know – and having lived with my condition (Ullrich congenital muscular dystrophy) from birth, I would say this is my expert subject!

3. Have you ever been sceptical about talking about your disability online?

Yes, in all honesty I am still often sceptical. I’m actually an incredibly private person. I prefer to remain anonymous and I don’t generally talk about myself or my condition to anyone. Even my closest friends are oblivious to many aspects of how my physical disability affects me.
Having said that, I am aware of how important it is to share knowledge and experiences. By offering wisdom, advice and information via my online platform, other people living with or affected by a disability could benefit.
Furthermore, my form of muscular dystrophy is particularly rare and unheard of. I therefore feel it is my obligation to raise awareness of Ullrich CMD.

4. What kind of response have you/do you receive in terms of your disability related blog posts?

Firstly, I am surprised to receive any feedback at all! As I said previously, I always assume that no one would be interested in anything I have to say. So to read positive comments from complete strangers really is a much needed confidence boost. Knowing that something I have written has helped or provided comfort to at least one person, makes it all worthwhile.



5. Do you write/talk about other topics apart from your disability?

First and foremost, ‘Life on the Slow Lane’ is a disability blog. Not only do I share personal stories and discuss my own condition, I also cover a variety of disability-related topics and feature interviews with disabled people.
I do occasionally write about topical issues too:

  1. There’s no reason to not vote!
  2. A United Kingdom
  3. Armistice Day: Remember & Reflect

On my blog you will also find a few book and film reviews as well as seasonal posts, such as my Halloween specials.

6. What steps do you take to make your blog accessible to yourself as well as other people?

I do the majority of my blogging from my Android Smart phone. It is so much easier than struggling with a heavy laptop, plus it means I can write and edit anywhere and at any time.

Over time, I have tried to edit the design of my blog, in order to make it more accessible for disabled readers. I like to use large-scale images, clear font, larger titles and subtitles, as well as dividers for visual clarity. I have also chosen two contrasting font colours – red and green. Because of its wavelength, the colour green is generally considered to be the easiest for the human eye to see.

Needless to say, there is much more I need to do, to make my blog as accessible as possible. Until now, I haven’t given this issue a great deal of consideration (so, once again, thanks to Elin for bringing it to my attention). I would therefore be incredibly grateful for any suggestions and recommendations from you guys – please leave a comment!

7. What is your favourite thing about blogging about your disability?

Since becoming a disability blogger, I have been fortunate to get to know many of my peers within the disabled community. Some have even become great friends.
I have received a lot of support and learnt a great deal from other people affected by disability. As a result, my outlook on life has changed somewhat, and so too has my attitude towards my own disability.
I do hope that, in a small way at least, my blog is a beneficial contribution to society. The ability to positively affect and influence other individuals through my writing is incredibly rewarding.

8. What are your top three disability related blog posts that you’ve ever published?

  1. My Life with UCMD
  2. Muscular Dystrophy: A Guide for Parents
  3. My Life: Carers, Hoists & Occupational Therapists

9. Do you think that the disabled blogger/YouTube community is overlooked?

Unfortunately I do think it is very much overlooked. However, I do think things are slowly improving as more disabled bloggers are being recognised and applauded for their great work in raising awareness.

I guess essentially, disability isn’t a ‘cool’, popular or fashionable subject to blog about. A disability blogger is highly unlikely to reach an audience as sizeable as a non-disabled beauty blogger, for example. Disability, though it affects so many people (more than you might think), it is not a universal topic with mass appeal.

10. Do you find it difficult to think of new disability related content to publish?

It can be difficult to think of new ideas and original content, that is both interesting and relevant to my readers. I’ll admit, I do often feel like I’m playing catch-up to other, higher profile disability bloggers (which is ridiculous, I know, and a consequence of my own insecurities). I have to sometimes remind myself of why I’m blogging.

11. Do you think blogging about your disability helps to change people’s perceptions?

I can only hope it does! Changing people’s attitudes and perceptions is a very slow process, and one that requires disability bloggers and campaigners to unite and work together in solidarity. Thankfully, the disabled blogger community is amazing and incredibly supportive – an intimate community that I am proud to be a part of!

12. Who do you tag?

It would be great if EmmaGemmaBloo ‘n’ Stuff, Kerry, Mitch, Aidan, Ross, Lucy, Leah and Gem could join in the #DisabledBloggerTag.

I’d also love to hear from you guys! – please feel free to leave a comment and offer your answers to any of these questions.


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Disability & Identity

I was recently invited to participate in a Quality of Life Study, conducted by students at Sheffield University. The ‘Living Life to the Fullest’ research project is aimed at young people (18-30) with life-limiting or life-threatening impairments.

Although data provided by participants is anonymous, I thought the questions asked, along with my personal perspective, might be of interest to some of you.

Below is an extract from my interview. I’d be really interested to know your views and how you might answer…


Do you think the general public hold an accurate understanding of disability? Why or why not?

No, I don’t. I think people who have never had any particular connection or interaction with disabled people lack the knowledge, experience and empathy required to hold an accurate understanding of disability. Furthermore, I think there’s a lack of awareness of how diverse disability is and how many people it actually affects.

I also think people’s perceptions of disability are heavily influenced by the depictions they see in the media. Depictions of disabled people played by able-bodied actors can be very misleading for various reasons. Quite often these portrayals are ‘airbrushed’ and sentimentalized.

The next topic is about your relationship with yourself. Do you have a strong sense of identity? What factors contribute to your identity?

I’m really not sure to be honest. I guess that implies that I don’t have a strong sense of identity. I’ve never really given this question much thought.

I’m not a fan of labelling or categorizing people. At the end of the day, we are all very different, unique individuals.

I guess, in the simplest terms, I am a daughter, a sister, an auntie and a friend. Despite the fact that I often blog about certain aspects of my life, I am actually a very private person who prefers to remain anonymous (or at least, as anonymous as possible).

I identify as somewhat of an introvert. I am incredibly insecure and self-conscious (painfully so) due to my physical disability and the presence of my powered wheelchair. I do feel like people look at the chair before they see me.

I’m very much aware of how different I look compared to ‘normal’ able-bodied people, and how others view and perceive me because of this. I think, because I am so lacking in confidence, my sense of self and identity is negatively impacted.

I am much better at thinking, talking about and dealing with other people and their problems versus my own!

Do you identify as disabled? Has this changed over time?

Yes, I do identify as disabled, though my disability does not define me as a person. I have no problem with the term, nor being referring to as a disabled person. It is simply a matter of fact. In the same way I would describe myself as a white, British female, I am also physically disabled.

I have Ullrich congenital muscular dystrophy. There is no hiding or escaping from it, therefore I choose to accept and embrace it.

Since I began blogging, I have noticed a lot of discussion, within the disabled community, regarding the topics of terminology and semantics. There are those who take offence at being identified as, or even labelled ‘disabled’. Some may prefer terms such as ‘differently abled’. (Personally, I find this descriptor a little ridiculous and would never refer to myself as ‘differently abled’). Then again, there are those who don’t consider their impairment to be a notable part of their identity at all.

My view on this has remained consistent throughout my life. My condition is congenital, meaning that I have lived with it from birth and have always been aware of it. I am disabled. In all honesty, I really wish I wasn’t! But the fact is, I am. To me, there’s really no point in denying or ignoring this part of my identity.

You’ve mentioned your thoughts around how others perceive you and how you therefore perceive yourself. Does how you think others perceive you (or even how you perceive yourself) change depending upon context (e.g. at work; with family; with friends)?

I think the way others perceive me varies depending on context. If I’m out and about amongst the general public – for example, shopping with friends – I do notice looks and stares from strangers. It can be bothersome. Some people are so indiscreet and don’t think twice about glaring!

Complete strangers have approached me in the street, clearly feeling entitled to pass judgement and make offensive and inappropriate comments regarding my disability. For instance, a man once asked if I believe in God. Put on the spot (and obviously quite shocked) I hastily answered, ‘no’. He then told me that is the reason I am in a wheelchair!

However, for the most part, I don’t take offence at people looking or staring, so long as they are respectful. I appreciate that by nature, people are inquisitive. All of us, myself included, are curious about anything considered different or not the norm. For this reason, I will happily answer disability-related questions from people who are polite and considerate.

I can’t speak on their behalf but in general, I think (or assume) my family don’t even see my disability. I’m just Carrie. The only time it really smacks them in the face (so to speak) is when I get ill.

In terms of how I perceive myself, I think this is fairly consistent regardless of context. I am very self-deprecating and self-critical. Essentially, I have always wanted to fit in, especially during my school years. I want to be able to do all the things able-bodied people can. I want to be independent, to drive, to walk, to run, to be spontaneous and do things without having to plan or rely on others.

This research project is about young people with ‘life-limiting’ or ‘life-threatening’ impairments ( LL/LTIs), the next questions surround living with that.
What does ‘life-limiting’ mean to you?

I consider myself to have a life-limiting condition (Ullrich congenital muscular dystrophy). I have come to terms with the fact that my disability will inevitably impact how long I live. Although people with the same condition are now living longer thanks to various treatments and medical intervention, life expectancy is still much shorter than the average person.

I dread winter and all the viruses circulating throughout the community. Every time I get a cold it leads to a chest infection. For me this is very serious since it often develops into a more complex issue. Many times over the years, I have been admitted to hospital with respiratory complaints including pneumonia, pneumothorax (collapsed lung) and pleurisy.

*I did elaborate further during my interview, though for personal reasons, I have chosen not to include the rest of my answer here.

Does this impact any decisions you make?

YES! All of my decisions. I had a particularly bad bout of pneumonia in 2013. It took many months for me to recover and was incredibly difficult to overcome, both physically and mentally. At that point, my priorities changed.

Up until then I had been pursuing my aims of moving out of my parental home, and finding employment….but after realising how fragile my body actually is, I decided to end the lengthy quest for accommodation – an incredibly stressful quest that I had been struggling with for over two years, without assistance!

My primary focus now is health and happiness. I have to do what is best to protect and care for my body.

*I have chosen to remove parts of my original answer to this question.

Do you feel like it is important to set goals? And does anything stop you from doing this? Are your goals are shaped by what support is assumed to be/not be available or by the support you currently receive?

My mother keeps encouraging me to set goals, like aiming for at least one holiday per year. She wants me to make the most out of the time I have – however long or short – which I understand and agree with.

In August 2017, my first nephew was born. This has been the biggest motivation for me to keep going – to pursue good health, happiness and to embrace life!

I am so much happier since he was born – everyone has noticed. I often say, I hope to live long enough to see him grow up. I want most of all for him to remember me. So this is my biggest goal.

This question is rather pertinent as I currently have only one part-time PCA (personal care assistant). She is very young and hates driving my wheelchair accessible vehicle. As a result, I feel very isolated and excluded from society. I would like to be able to get out, to meet friends and go to events. But right now I am unable to, as I don’t have the support in place.

You have talked about not being able to get out of the house. Would you say you ever feel lonely or that you miss out because of your disability?
Do you miss out more because of your own health problems or accessibility issues?

Yes, definitely. There are times I feel lonely even though I am by nature quite a solitary person. I am more than happy with my own company – it’s a good job, really!

I’m not a fan of social media at all. But like it or not, for me it is a lifeline. Without it, I would feel incredibly isolated. I mostly use Facebook Messenger in order to stay in touch with friends and to meet others in a similar position to myself.

Health problems as well as accessibility issues contribute to missed opportunities. So many times I have made plans, then had to cancel due to ill health – usually chest infections. Because of this, I am now very reluctant to make future plans for fear of disappointment.

For example, I finally managed to book tickets for the Strictly Come Dancing, January 2017 tour. I was so excited and had looked forward to it for months. I then caught a severe chest infection and was unable to go. It may sound dramatic but I was gutted. I had tried to get tickets for years but couldn’t, as the limited accessible seating was always sold out.

What worries you about your future with a complex condition? What would you say is your biggest worry?

I worry most about my health and my ability to fight respiratory illness. As a kid, when I got a chest infection I would need a course of antibiotics and a week off school to recover. However, as I have aged, the duration of these illnesses has gradually increased. They have become much more complex to treat too. These days, it takes everything I have to overcome a chest infection. I worry about how many more times I am able to do it and therefore what I might miss out on in life.

How has your family been impacted (for better or worse) by your disability? For example, has it affected them financially or affected your relationships with them? How do you feel about this?

Wow – there is no end to how much my family has been impacted by my disability!

Yes, very much financially. For one thing, I have a ground-floor bedroom/bathroom extension that was built in 2000. Back then, my parents’ income was assessed. They were entitled to a partial grant, though this was a very small sum. In order to fund the build, they had to take out a second mortgage.

Holidays are MUCH more expensive than they would be for the average family. Medical insurance and the need for accessible accommodation, plus equipment hire makes vacationing rather costly.

Essential mobility equipment such as manual and powered wheelchairs are a huge expense!

Furthermore, my parents are affected physically (owing to many years of lifting and manual handling) and emotionally. Obviously they are aware of the fact that my condition is life-limiting, even though this is not discussed. When I am hospitalised, my whole family experience a great deal of distress.

Relationships are inevitably affected. At the age of 29, I still live with my parents in their home, and we are very much in each others pockets. They remain my primary source of support. I am unable to escape when disputes occur – to go for a walk or a drive in order to ease tension and let off steam. This I find incredibly frustrating.

What makes for a good community in regards to disability?

I’m really not sure how to answer this question. Sadly, I don’t think this can ever be fully achieved, as there will always be prejudice, ignorance and exclusion. I think crucially, there needs to be greater awareness, familiarity and education so that disability becomes part of the norm. We need to work in unity to break down barriers and make disability socially acceptable.

How do you feel about dating with a disability? Do you think it is harder when you’re disabled?

It is definitely harder with a disability – or so I have found. I think one of the biggest obstacles is the initial meet and greet stage.

We (disabled people) face assumptions, social prejudice and environmental limitations e.g. Access to buildings and public transport – thus making dating all the more challenging. Then there are our own physical limitations.

I am completely non-ambulant, I have contractures, a severe scoliosis and overall muscle degeneration. These physical limitations have made me overtly self-conscious, socially awkward and anxious when meeting new people.


Thanks for reading! If you found this interesting, leave a comment and share so that others can join in the discussion.

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Life Update | Hospital Admissions & Disability

Thursday 8th March marked International Women’s Day 2018. For me, it was spent in hospital (Russells Hall, Dudley) undergoing minor surgery. Could be worse, I suppose!

Due to the fact I have Ullrich congenital muscular dystrophy (a muscle-wasting condition), people are often horrified when I tell them how many general anaesthetics I’ve endured throughout my life (at least 10 – honestly, I’ve lost count!).

Although it is obviously best avoided, I’ve personally never encountered any problems or complications as a result of general anaesthesia.

I’m a big believer in knowing your own body and what you, as an individual, are able to withstand. When undergoing any form of surgery, communication is key – particularly when you have a disability.


A Few Tips:

Go prepared: Take all relevant documentation to your pre-operative assessment(s), including names and contacts for all the medical professionals you see regularly.

Meet with your surgeon(s) and anaesthetist: It is not always common practice to see your anaesthetist prior to surgery, but in my case it is essential. Explain your specific requirements and concerns, and don’t be afraid to ask questions.

Ensure everything is in place prior to your admission date: If, for example, you use a Bi-pap or C-pap machine (non-invasive ventilation), tell your medical team – nurses included. Make sure they know your settings and have your NIV machine ready for you to use post-operative.


I usually discharge myself on the day of surgery or, as soon as I know I’m well enough to manage at home (again, I hear you gasp). Anyone with a disability who has spent time as an inpatient will appreciate why I prefer to escape as soon as physically possible.

Don’t get me wrong – I cannot fault the care and conscientiousness of the doctors and nurses. I am a big supporter of the NHS and frankly, I would not be here today without it.

However, the sad fact is, hospitals in the UK are not equipped for those of us with disabilities and complex care needs. Trust me – having been admitted many times, to various hospitals, for various reasons – I am well versed!

On this particular occasion, it was necessary for me to stay in hospital overnight. My Mom was with me all day but went home at around 7pm when it became apparent that I was unfit to leave. This essentially left me alone and stranded in bed (one that didn’t work!), unable to move, reach or sit myself up.

I couldn’t and wouldn’t expect Mom to stay with me all night, in order to assist with my physical care needs. She herself has recently had a full knee replacement and was exhausted.

After a long, uncomfortable night spent clock-watching, I was incredibly relieved when my folks returned at 11am on Friday to take me home. My home is set up for my care needs. Unfortunately, hospitals are not.


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Wheelchair Services ♿

Following on from my last blog post, I’m happy to report that Friday’s appointment with wheelchair services (Wychbold, Droitwich) was surprisingly beneficial.

Admittedly, I had low expectations based on previous experiences. But the occupational therapist (OT) I met with was extremely helpful and conscientious.

I now have a long list of information and various options to consider.


I went prepared with some notes, outlining my needs.

Thus far, I have looked at various wheelchairs online and test drove the Quickie Salsa M2 Mini and the Quickie Jive M (both by Sunrise Medical). Sadly, neither of these chairs met my requirements.

The Salsa M2 Mini is an ideal size but not so great outdoors (compared to my current Quantum 600). The Jive M was just too big for my home.


Me in my current Quantum 600 powered wheelchair

Whilst at the appointment, I was shown the Invacare TDX. Before it was even measured, I could see it is far too big, more so than my current chair, and wouldn’t fit around my home.

So that’s one more crossed off the list!


Voucher vs NHS wheelchair?

The last time I approached wheelchair services was 10+ years ago. That appointment was brief and frankly a waste of time!

I was offered a voucher with a value of no more than a few hundred pounds. A lot of money you may think. But when you consider powered wheelchairs cost from £5000 upwards, (between £10-20k is more accurate), a few hundred quid doesn’t go far.

The only alternative to this was one, very basic, very inadequate NHS wheelchair – I suspect unsuitable for most people.

Thankfully since then, things seem to have improved greatly (around here, anyway).

My current options are:

– A voucher with a prescriptive value of approx £2000

– Accept one of the approved NHS chairs (none of which feature the rise function that I need)

– Accept a more compact mid-wheel drive (MWD) NHS chair for indoor use, and privately purchase a second wheelchair specifically for outdoor use (worth considering as I live rurally)

Right now I think my best bet is to take the voucher and choose my own wheelchair. Mainly because I do require both the rise and tilt functions. The NHS will only approve the latter.


What now?

– Attend NAIDEX (April 25-26th). I will be able to see many different wheelchairs and discuss my options with specialists. Trust me you need to see and try them before committing to anything. You can’t base a decision on images and information on a computer screen.

– Investigate options I had not previously heard of, including: Ottobock and the YOU-Q Luca by Sunrise Medical.

– Contact Sunrise Medical directly and ask them to visit my home with demo wheelchairs to view and test-drive.

– Ask Sunrise Medical for a list of reputable dealers.


Once again, I will keep you updated of any developments.

Thanks for reading!

Wheeling Through Life | A Brief History

From birth, I have lived with the rare condition Ullrich congenital muscular dystrophy.

It is a progressive, muscle-wasting condition caused by mutations in the COL6A1, COL6A2 and COL6A3 genes.

It is typically inherited in an autosomal recessive pattern (both parents are carriers of the mutated gene). However, in rare cases it can also be inherited in an autosomal dominant pattern (where only one parent has the affected mutated gene).



It frustrates me that so few people, medical professionals included, have heard of Ullrich congenital muscular dystrophy. In my experience, those who are familiar with muscular dystrophy tend to associate it with it Duchenne (the most well-known form).

Many people look at me now – a non-ambulant wheelchair user – and assume that I have always been this way (ie. unable to walk). This is not the case.

In order to raise awareness and familiarity of UCMD, here are a few photos of me growing up with this sadly unrecognised condition.


Above and below: My first wheelchair (manual). Prior to this I used what we, as a family, referred to a “buggy”. At this stage, I was able to walk short distances whilst wearing leg ‘splints’.

Below: In this photo I am around 11 years old. I loved this wheelchair (a manual, Quickie) as it was a sleek, black and purple design.

At age 10, I became unable to weight-bear. My muscles were simply unable to support my growing frame. It was therefore important to find a wheelchair that was comfortable enough to use all day long, whilst also looking half decent!

As you can see, the push handles on this chair were higher than average as all members of my family are tall. You wouldn’t think so, looking at me would you!

I always disliked the unusually high push handles (see above) as they stuck out above my head and were an aesthetic distraction.

Below: My next wheelchair – again a manual. I was unable to self-propel due to elbow contractures and muscle weakness.

Throughout my school years, I always used a manual wheelchair. This is one of the main reasons I hated school so much, since I was reliant on others to push me around. Wherever I was put, I stayed. It was incredibly frustrating.

Below: My Quantum F45 powered wheelchair (this model is no longer in production).

A relatively light-weight, rear-wheel drive with a narrow base, this chair served me well for many years.

This was in fact my second power chair. My first was a Jazzy Pride (front-wheel drive), which was great outdoors. Unfortunately I can’t find any photos to show you.

My Jazzy Pride wheelchair was purchased through public fundraising when I was 10-11 years old. At that time, there was just no way my parents could afford the cost of a powered wheelchair. Our local wheelchair services could not (or rather, would not) provide me with one.

Below: This is my current wheelchair – a Quantum 600, which I have had for almost 8 years. It is mid-wheel drive and VERY heavy!

I have to say – though it is a solid, sturdy chair – I wouldn’t replace it with the same make/model. Unlike my previous powered wheelchairs, it has let me down unexpectedly on various occasions and required quite a few pricey repairs!

It is rapidly falling to bits (literally) and most concerningly, the electrics are now failing. For this reason, I am currently on the lookout for a new chair.

These days, I primarily use a powered wheelchair rather than a manual chair, as it allows me greater independance and freedom of mobility. However, I do also own a Küschall Ultra-Light manual chair, mainly as a backup.

Me in my current Quantum 600 powered wheelchair

If you have found this blog post useful, I would be grateful if you could share to help spread awareness of Ullrich congenital muscular dystrophy.

Thank you!

My Search for a New Wheelchair

My Quantum 600 powered wheelchair, which has been my legs for almost 8 years, is gradually falling to pieces. I have patched it up no end with DIY repairs, and attempted to keep it going for as long as possible. But the electrics are now failing and so the chair is becoming unreliable. Consequently, I have no option but to start the search for a replacement.

As the wheelchair-users out there will know, this is never a simple task! It is a BIG decision, not least because wheelchairs are so ridiculously expensive. More so than a new car!

Throughout my life, I have had no choice but to privately fund all my wheelchairs – both manual and powered – since those offered by wheelchair services are wholly inadequate for my needs (and I suspect, most people’s).

So before committing to a purchase, I need to be absolutely certain that the wheelchair I opt for will be the right one for me.


My new wheelchair must:

– Have rise and tilt
– Be as compact as possible for indoor use
– Be durable outdoors as I live rurally


I have an appointment with my local wheelchair services on Friday 16th February. So I’m hoping they will be able to offer some useful advice and guidance, along with a voucher towards the cost.

A representative from Motus Medical has already visited my home to demo two mid-wheel drive (MWD) chairs:

– The Quickie Salsa M2 Mini
– The Quickie Jive M

I found the Quickie Salsa M2 Mini to be an ideal size (the base is only 52cm wide, with a turning circle of 110cm). However, when tested outdoors over gravel and uneven terrain, it did not perform particularly well.

The Quickie Jive M was too large for the contours of my home (overall width 62-66cm). Furthermore, I felt that it didn’t compare well with my current Quantum 600 in terms of outdoor ability.

So that’s two tried, tested and crossed off the list!

I will continue to keep you updated, following Friday’s appointment.

Me in my current Quantum 600 powered wheelchair

My First Ceiling Hoist

As some of you may know, my very first ceiling track hoist was *finally* fitted on Monday 11th December.

I now have a straight track in my bedroom and a separate H-frame in my ensuite bathroom.

Why I need a ceiling hoist

I am 29 and completely non-ambulant due to Ullrich congenital muscular dystrophy. Being rather petite, I have always been manually transferred (yes, lifted by family and carers) rather than hoisted. This method has always been preferable since it’s much quicker and frankly less faff. But, we’re all getting older and more frail.

I live with my parents who are both in their 60s. They are my primary source of support, though I do employ a carer part-time. My mother underwent a full knee replacement in August 2017, and is therefore limited in how much she is able to help me. Consequently, we have reached a stage where a ceiling hoist is a necessity.

A long and frustrating process!

Back in October 2016, Mom was told she needed a full knee replacement. The following Spring, my only carer announced she would be leaving within the next few months to pursue a career as a paramedic. With this in mind, I contacted my local community occupatinal therapy team to request an assessment. I was told they’re vastly understaffed and, with an extensive waiting list, I would need to be in a terminal condition in order to be seen. I appreciate their predicament, I really do, but I was unwilling to be fobbed off so easily.

I was instructed, over the phone by an OT I had never met, to “camp out”, meaning I should wash, dress and be toileted on my bed. Yes, for a prolonged and indefinite period of time, I should go without a shower and simply not wash my hair. (Due to my physical limitations and my wheelchair, there’s no way I could wash my hair over the sink).

Disgusted at her casual disregard, I asked my neuromuscular consultant to issue a letter of support. On receipt of this, an OT suddenly found time to visit me in my home for an assessment. Following this, representatives from Prism Medical and TPG DisableAids attended separately to advise, measure up and draw plans. Both rep’s then submitted quotes to the purse holder at County Council who, of course, approved the cheapest option.

NB: A portable hoist was trialled but proved unusable with the layout of my room and the type of bath in situ.

Prism Medical

We were expecting Prism to arrive at 9am on 24th October 2017, as arranged. Having waited over an over with no sign of anyone, I called only to be told they weren’t coming because of a “technical issue”.

To cut a long story short, Prism claimed they couldn’t connect the track from my bedroom to that in my ensuite bathroom. This is despite consulting with occupational therapists and agreeing to do the job. Prism also claim they left telephone messages for both myself and the OT’s, on the previous Friday, to inform us that they wouldn’t be attending. Neither I, nor the community OT’s received any messages. I call bullshit!

Dad even removed the partition above the bathroom door in preparation.

Later, I learnt that Prism have similarly disappointed several others, resulting in formal complaints being issued against them. So when the purse holder at County Council told me she would renegotiate with Prism rather than approve funding for TPG to carry out the work, I insisted otherwise.

Having to fight for your rights and basic needs is, unfortunately, very much part and parcel of having a disability. ‘Tell, don’t ask!’ This is my motto. In my experience, if you are not clued-up and assertive, those in authority simply fob you off.

TPG DisableAids

Thankfully, Funding was approved after a different OT, accompanied by the rep from TPG, visited to discuss and re-evaluate the situation.

Rather than trying to connect the single rail in the bedroom to the H-frame in the ensuite bathroom, it was decided that two separate hoists would be best.

My carer had by then handed in her notice and would be leaving at the end of the month. I was seriously starting to worry the hoist would not be in place before Christmas.

But much to my relief, TPG (who, compared to Prism, were infinitely more professional and efficient throughout) booked in for the 4th December.

Then, just my luck, we were hit by the worst snow in 7 years! It was like flipping Narnia.

I tried to remain optimistic though in reality I knew there was no way TPG would be able to make the journey from Hereford. And they didn’t.

So, it was third time lucky, on the following Monday that the long-awaited ceiling hoist was installed. I no longer need to worry about hiring new carers as lifting is not an issue. Furthermore, the pressure is off Mom – literally! And, the thing I am perhaps the most happy about – my dealings with community OTs and the County Council are over.

For now at least…


(Apologies for the poor quality of the images. All were taken by myself on a Samsung S5!)

Christmas 2017 | Plans, Decorations & Films…

Christmas Day is now just over two weeks away! How did that happen? This year has gone so fast. I know we all say that every year, but really.

The biggest event of 2017 for me and my family, is the addition of my new baby nephew, who arrived at the end of August. We are a small family – neither of my parents have siblings, and so my brother’s and I have no aunts, uncles or cousins. So, for us a new baby – the first grandchild for my parents – is a big deal!

2017 also marks my first full year as a disability blogger. I have acquired a respectable following on social media (respectable according to my expectations, anyway!) and I hope to reach an even wider audience throughout 2018.

Plans for Christmas

Every year, our small family congregate at my parents house where my Mom cooks the traditional turkey roast. My Nan, who has just turned 91, insists on watching the Queen’s speech and so we all gather around the dining room table after that lovely treat.

As kids, we would open all our presents upon first waking. But now we usually wait until after dinner to open them all together. It’s something to look forward to on Christmas afternoon… apparently!

Every year we have a real Christmas tree – my Mom insists. Having never had an artificial one, I can’t really compare. But I must admit, it is much more traditional and exciting to have a real tree, with the natural scent of pine, the imperfect shape and shedding needles all over the floor. Some people complain about the effort and the mess they make. But to me, that’s all part of the charm and the count-down to Christmas.

Decorations

Here is our real tree, decorated by my folks and I (a team effort), with plenty of colour, lights and an Angel on top!

I also made a wreath to adorn our front door – get me and my creative skills!

   

What do you think of my finished wreath? I hope it’s a pass – I burnt half my fingers off with that bloody glue gun!

Film Recommendations

There are so many great Christmas films to get you in the festive mood (there are also some pretty shocking ones out there too). But where do you start? Some people want comedy, others have kids to consider and therefore need a family friendly option. Some want tradition and then there are those who would like to see something more meaningful and dramatic.

A few of my favourites include Home Alone (1990), The Muppet Christmas Carol (1992), Elf (2003), and The Family Stone (2005).

I’ve tried to cater for everyone here, although obviously we all have our own go-to Christmas movies. For those of you who haven’t seen any of my recommendations, maybe start with Elf which is a charming and cleverly witty family film about Buddy, an elf played by the irrepressible Will Ferrell. A good choice to keep the kids entertained now that school has ended, this non-stop comedy is both sweet and slapstick at times. I’m 29 and I still love this one!

My next choice is another hugely popular family friendly festive film about a young boy mistakenly left home alone when his family fly to Paris for the holidays. Macaulay Culkin was at his prime here, offering a highly entertaining and endearing performance that more than matched his established co-stars (Catherine O’Hara, John Heard and Goodfellas Joe Pesci). With plenty of comedy, capers and action, Home Alone will excite and enchant both young and old.

Who hasn’t seen A Muppet Christmas Carol, seriously? What is there to say about this one. Charles Dickens classic story is invigorated and enhanced by the Muppets unique blend of humour and musicality. With the addition of England’s very own Michael Caine who is perfectly cast as Ebenezer Scrooge, this is a must see come Christmas Eve.

My final suggestion is less well known though possibly my personal favourite of the four mentioned. The Family Stone is a heartfelt comedy-drama about a modern-day ecclectic American family who reunite for the festive period. One for the grown ups, Id advise settling down with a glass of wine to watch this one before bed. I’m not overly sentimental but admittedly this movie always makes me shed a few tears. But don’t be put off, there’s also plenty of laugh out loud moments throughout. The ‘Christmas message’ is, in my opinion, subtly yet effectively delivered. Frankly I could watch this at any time of year since it’s simply a good drama about the trials and tribulations of family life.


Well, that’s it for my Christmas round-up. I hope you enjoyed reading this post. If so, please give it a share!

Here’s hoping you all have a happy and healthy Christmas