Carers Rights Day

Life with PAs

I have Ullrich congenital muscular dystrophy, and consequently require support from carers.

For over a decade, I have been hiring assistants (via Direct Payments) to help me with an array of tasks, including personal care.

I prefer to recruit my own staff rather than use agency workers. This has given me much more flexibility in terms of when, how and for the duration of time I use my PAs. It also means that I know exactly who will be providing my care, which is not always the case when going down the agency route. However, with this comes the added responsibility of being an employer, which in itself can be rather daunting and stressful.

I’m in the fortunate position of having a hugely supportive family who provide much of my everyday care. Since I live with my parents, I am unable to officially employ them as my carers, and so they carry out this role unpaid!

I do appreciate that not everyone has relatives to rely on. For these individuals, the only option is to pay others, often strangers, to assist with their care needs.

Like me, they might advertise, interview and hire independently, paying for their care with council funded Direct Payments (available in England, Scotland and Wales). Alternatively they may decide to use an agency.

For others though, in times of desperation, there’s no choice but to leave their residence and spend time in respite care. I know of cases where young people in their 20s have been placed in nursing homes for the elderly, where staff have no knowledge or experience of their condition and specialist needs. Personally, I can’t imagine such an experience and count myself lucky that I’ve never had to resort to this.

Over the years, I’ve employed around 10 carers/personal assistants, and interviewed many, many more! The most successful sources of recruitment for me are friends, neighbours, word of mouth and Facebook, though I also advertise locally (newsagents, post office, school newsletters, newspapers, etc).


Carer’s Allowance

If you are a full-time carer (at least 35 hours per week) you may be entitled to Carer’s Allowance.

You don’t need to be related to, or live with, the person you care for.

My Mum is in receipt of Carer’s Allowance (currently £64.60 per week) as she is my primary carer.

This may seem like a decent sum of money, but consider ~

£64.60 = 35+ hours care work. That equates to £1.80 per hour

This doesn’t include expenses, e.g. fuel/travel costs, parking fees (hospital appointments), etc.


My Open Letter to Carers/PAs

On behalf of all who require personal/social care, I invite anyone considering taking on the role of carer/personal assistant to think carefully about what it really means before you do apply.

Firstly, this is not a choice for us – it is a necessity! We’re not too busy or too lazy to do things for ourselves. When we advertise for carers, it’s because we NEED them and not necessarily because we want them.

As physically disabled individuals, many of us cannot independently carry out essential everyday tasks such as washing, dressing and toileting. To have no option but to entrust such intimate activities to another person – a stranger – is unnatural and unnerving. We are, in effect, placing our lives in your hands when you take on the vital role of personal carer.

Recruiting carers can be a lengthy and extremely stressful process for us. There’s the initial worry over whether there will be any applicants at all, followed by the dreaded interview process.

We often find ourselves waiting around for interviewees to attend, only for them to carelessly fail to show without any notification.

Please do bear in mind that disabled peoplehave busy, purposeful lives too, sodon’t waste our time. We appreciate there are valid reasons for failing to attend job interviews, but it’s no hardship making a quick phone call or sending a text message to let us know in advance.

As you would with any potential employer, be professional and courteous.

If and when we are able to successfully recruit, it can be incredibly frustrating and disheartening when that person flippantly decides to resign days later. You may wonder how and why this occurs, but the sad fact is that for many disabled people it is a reality. We are not afforded the luxury of being able to manage until a replacement is found. No, we can’t simply wait for the right person to show up.

Some of us even have to resort to respite and residential homes in the meantime, thereby taking us away from our own homes and everything we hold dear. Try to imagine if you will, how demoralising and distressing such a situation would be if it happened to you. I therefore reiterate how important it is to think before applying for a role as a personal carer.

Are you dedicated, trustworthy, reliable, able and willing to learn? Ask yourself: are you considering care work for the right reasons? (it is not an easy option!)

Your role as PA may be demanding and will involve a variety of tasks. You will be responsible for the safety and wellbeing of your potentially vulnerable client/employer.

So, if your attitude to care work is casual and indifferent, this is most definitely not a job for you!

#CarersRightsDay2018

World Toilet Day

19th November 2018 ~ #WorldToiletDay

I am 30 years old, and I have the progressive condition, Ullrich congenital muscular dystrophy. As a result, I am completely non-ambulant. I use a powered wheelchair and am unable to transfer without the use of a hoist and support from carers.

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 in the urge 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. Living with dehydration, impaired mental function and recurrent infections, simply because adequate toileting facilities are not made available to you.

#FitToBurst

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, a General Anaesthetic (in itself a huge risk due to my poor lung function) or an indwelling catheter. By no means is 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 at that time; a suprapubic catheter. With this, I no longer need to transfer from my wheelchair or depend on other people. I don’t have to struggle and suffer the indignity of using small, dirty and ill-equipped public disabled toilets. But, 250,000 disabled people in the UK still do.

Often, there is not enough room to fit a wheelchair in a disabled toilet, 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?!

The majority of disabled toilets I have used throughout my life have been vastly inadequate, filthy, often neglected or used for storage!

I think it’s important that there are Changing Places facilities everywhere, including smaller towns, villages and rurally as there are many disabled people (like me) resident in these locations too.

#incLOOsion

The lack of such essential facilities locally makes me feel restricted, excluded from society and considered less important.


The 19th July 2017 marked the second Changing Places Awareness Day and eleven years since the campaign began.

Each registered Changes Places toilet includes:

1. – a height adjustable adult-sized changing bench

2. – a tracking hoist system, or mobile hoist where not possible

3. – adequate space for the disabled person and up to two carers

4. – a centrally placed toilet with room either side

5. – a screen or curtain for privacy

6. – wide tear off paper roll to cover the bench

7. – a large waste bin for disposable pads

8. – a non-slip floor


Join the #RevoLOOtion!

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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Armistice Centenary

11/11/1918 ~ 11/11/2018

Today is Remembrance Sunday. A century has now passed since the signing of the armistice, marking the end of the First World War.

11/11/1918 ~ the day the guns fell silent along the Western Front, and four long years of fighting came to cease.

‘The war that will end war’ ~ H. G. Wells

On the eleventh hour, of the eleventh day, of the eleventh month, a two-minute silence is held every year to observe and remember all who have fought and lost their lives in war, both past and present.

Hereford Cathedral ~ April 2018 Photo copyright Carrie Aimes

Above: ‘Poppies: Weeping Window, Installation. Here at Hereford Cathedral in April 2018. Part of the 1914-18 NOW, WWI centenary commemoration #poppiestour.


Explaining Remembrance Day to children

Recently, a friend told me that her seven year-old daughter had asked why we wear poppies and what Remembrance Sunday means.

She didn’t really know what to say or how to explain it. So she asked if I knew of any age-appropriate books or films to give her an overview.

I’ll be honest, I was fairly stumped! She’s a mature kid, but still, she’s only seven.

How do you explain, to a young child, the concept of ‘poppy day’, and the importance of remembering those who fought in a World War that took place 100 years ago?

(If you’ve any ideas or suggestions, please leave a comment and let me know. Thanks!)


Last weekend, I watched the film War Horse (2011), based on the novel by Michael Morpurgo. I’ll admit, I cried.

It’s an incredibly well told story depicting the perpective of the English, French and Germans during WWI, via war horse Joey who travels throughout Europe, encountering numerous owners.

I had previously read War Horse the novel as well as Private Peaceful, also authored by Morpurgo. Though I wouldn’t recommend these titles for a seven year-old, they are, I feel, brilliant for anyone wanting to know about the effects of the Great War on individuals, families, relationships and communities.

(What books or films would you recommend for primary school children who want to learn about WWI and Remembrance Day?)

~ Please do let me know how you are spending this Remembrance Sunday ~

~ Are you attending a service?

~ Will you be thinking of relatives who served in war?

~ Do you have children with questions of their own?


If you found this blog post interesting, please read: 

Armistice Day | 2016

Interview | Spoonie Warrior

Saidee Wynn discusses life with chronic illness and her candid new book

Saidee Wynn, aka the Spoonie Warrior

32 year-old Saidee Wynn is the author of a new book about life with disabilities and chronic illness. A product of the successful blog, Spoonie Warrior, the book is a candid first-hand account that will make you laugh, cry and shout, “me too!”


1. Saidee, could you please tell us about yourself and your experience with POTS, EDS and PTSD?

I currently live in Atlanta, Georgia with my husband and six year-old daughter. Before POTS (Postural orthostatic tachycardia syndrome) hit me hard, I was a middle and high school teacher. I taught history, literature, and drama. I now work part-time as a copywriter and do my own writing whenever I actually have the energy to do so.

When I first got sick with POTS, I couldn’t keep up with my regular work load. My boss was very accommodating and worked with me. I started working part-time on what we hoped was just a temporary basis. That was in the middle of the school year. Towards the end of the school year, I knew that I’d have to make a decision about whether or not I could continue to run the classroom as a lead teacher.

I wasn’t getting any better and my doctors said they weren’t sure I would, so I made the decision to step down as a lead teacher. I continued to work part-time for a little while, doing about 3 hours a day, but after a year of attempting to do that, it was still too much.

Since my health is so unpredictable, it was difficult to stick to any kind of set schedule or keep up with deadlines. I ended up missing the last six weeks of my final year of teaching because of an injury. That was just over a year ago, and I still miss it.

I’ve had EDS (Ehlers-Danlos syndromes) my entire life, I just never knew it. EDS causes a lot of chronic pain as well as frequent dislocations and subluxations. There are a lot of things that I used to think were normal that I now know aren’t normal. Most things have to do with how the body moves. With EDS, our collagen is faulty, and collagen makes up the tissue that holds your joints in place. Actually, collagen makes up a good portion of your body.

Anyway, I always knew I was more flexible than other people, but I didn’t always realize to what extent. Those with EDS have a habit of sitting in weird positions, especially keeping our legs up on a chair or tucked in. I didn’t realize this wasn’t a normal thing that everyone did until people started pointing out to me how weird it was that I did that. I started paying attention to others and noticed no one else did it. I also didn’t realize intense joint pain wasn’t normal. I was always told it was “growing pain” and just assumed everyone else was better at dealing with it than I was.

I still discover strange things that aren’t really ‘normal’ all the time. My husband and I have a game of sorts where I’ll do something and ask, “EDS or normal?”. It usually means moving my body in some way that I didn’t know others couldn’t do. Also, being able to zip up my own dresses or put sunblock on my own back. I thought people were just being lazy when they asked others to do that stuff for them. I didn’t realize it was because most people legitimately can’t reach.

I’ve also had PTSD (Post-traumatic stress disorder) since childhood, but never recognized the symptoms or the depth of my trauma until a few years ago. It affects how I react to the outside world and other people. My brain can perceive danger even when there isn’t any danger around.

POTS didn’t really hit me until about 2.5 years ago, but it changed my life completely. I used to be an incredibly active overachiever, and now I celebrate having the energy to take a shower! POTS is a type of dysautonomia, which is a dysfunction of the autonomic nervous system. Think about everything your body does without you thinking about it, like breathing, digesting food and circulating blood. That should give you a rough idea of what parts of my system are affected – basically all of them.

Obviously, all of these conditions have a pretty big impact on my life. I can no longer hold down a full time job. I can’t dance, act, or sing like I spent my whole life doing. I’ve had to create a totally new ‘normal’, which isn’t easy to do and definitely involves a grieving process. But, somehow, I’m making it work.

2. You are also a wife and mother to a young daughter. How does your disability impact on family life and how have you all adapted?

The biggest impact is that I can’t do everything I would like to do with my husband and daughter. I can’t go play outside, have dance parties, ride bikes, or even play in the park. I have heat intolerance and live in the south, so I’m pretty much restricted to the indoors most of the year.

When my husband and I were first dating, we used to take a lot of road trips together, even going camping on the beach, but now I can’t handle long car trips. We mostly just spend time watching Netflix and Hulu.

Matt, my husband, picks up a lot of the slack as far as doing the things I physically can’t do. He does all the driving, shopping trips, and play time duty. While I can’t do all the physical things I wish I could, I can still be there for my family, emotionally. We read together, watch movies, laugh, and play (gently, of course).

My daughter still sometimes struggles with the fact that I can’t do everything she wants me to, and will sometimes lament by saying, “I wish you weren’t sick”. Despite this, we still have a very strong relationship. It’s pretty normal for kids to wish something about their parents was different, right?

3. How do you explain your condition and limitations to your young daughter?

There’s no one way. Every day she gets older, bigger, and smarter, which changes how we can talk about my illnesses. She knows I have “chronic illness” (yes, she actually uses those words), and that it means I’m always at least a little sick. But some days I feel better than others.

She also knows that I get dizzy when I walk or stand too long, and can’t be around lots of bright lights and loud sounds. When we were getting ready to go to her kindergarten graduation she said, “Mommy, it might be loud, so you should probably bring your earmuffs”. It was sweet.

There are two great books on Amazon, written by Moms with chronic illness, that we sometimes read. This helps her understand a little better. They are Mommy Can’t Dance and Why Does Mommy Hurt?

4. When and why did you decide to blog about your life and experiences with chronic illness?

I’ve used writing as a form of self-expression and therapy my whole life. When POTS came along and I suddenly couldn’t do any of my other passions anymore, I really leaned into my writing.

One day, I got the idea to start a blog and before I knew it I had bought a domain name. I thought I’d be lucky to even get one reader, so I’ve been overwhelmed by the response to my writing.

My goal has been to keep writing as long as I enjoy it, and I’m still loving it. Although, I have had to take breaks due to health issues or because of things going on in my life, I haven’t given up on it yet.

Most popular blog posts: “Why You Should Stop Spreading Inspiration Porn,” “Disabled: Say the Word,” and “Dear Doctors, No It’s Not All In My Head.”

5. In what ways have you benefitted from blogging and how does your blog, Spoonie Warrior, helps others?

I get so much from blogging. It gives me a great outlet for my experiences and a sense of purpose. I’m able to connect with other people and feel like I’m making a difference in some small way. The greatest feedback I get from my writing is, “oh wow, you too? I thought it was just me!”

I like to tell it how it is, and give a real look at life with chronic illnesses, rather than the polished, sugar-coated version we often see. People seem to need to see that. It helps them feel less alone in their struggles, which is a big deal because life with chronic illnesses can be so isolating.

I think it’s important to remind people that everyone is affected differently by chronic illnesses. Just because I was unable to continue teaching, it doesn’t mean someone else with POTS won’t be able to, so don’t be discouraged. And just because I’ve been able to blog and publish a book, it doesn’t mean others should feel ashamed for not doing the same.

We all have different levels of ability and this can change with every passing moment. So, try not to compare yourself to others or get bogged down with what we think we should be doing. I don’t ever want to be the example someone’s doctor/parent/teacher uses to say, “well, she could do it, so why can’t you? You’re just not trying”.

Do what you can, when you can. Don’t put your health at risk in order for others to feel more comfortable with your abilities.

6. Can you tell us about your first book – a collection of short essays – entitled, ‘Tales of a Spoonie Warrior: Chronicles of the Chronically Ill’.

I wrote the book because there isn’t a lot of literature about life with chronic illness/disability, actually written by someone with a chronic illness and/or disability.

There are a lot of self-help books and novels turning the lives of disabled people into inspiration porn or tragedies, but not much about the everyday realities of our lives. That’s a book I would have loved to read when I was first diagnosed! And, they say you should write a book you would want to read, so I did.

It’s mostly aimed at other people with chronic illnesses and disability, however, there’s also some stuff in there for healthy people who just want to know more about our lives and struggles.

The tone is very conversational. Some of it is funny and sarcastic, some of it is gut-wrenchingly sad, and there is also anger. All of it is very personal. It reads like you’re sitting down to coffee with an old friend. I think readers can expect to find themselves within the pages of my book and walk away from it knowing that they are not alone.

Saidee’s book is available to buy on Amazon


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A New Wheelchair

The Waiting Game

*Update* As you may (or may not) know, I am in need of a new powered wheelchair since my ageing Quantum 600 is rapidly falling to pieces (slight problem!) and no longer meets my needs.

The very long process of acquiring a new wheelchair began several months ago. I previously wrote two blog posts outlining my situation, requirements and the plan of action:

Part 1: My Search for a New Wheelchair

Part 2: Wheelchair Services

I received a NHS voucher from wheelchair services at a value of £1700. I’ll be honest, I was amazed to receive this much from them as I was expecting no more than a few hundred quid (if that), based on previous experiences.

£1700 is a lot of money for which I am grateful, but it’s only a fraction towards the cost of the Sunrise YOU-Q Luca wheelchair I now need. Even with basic seating, I have been quoted in excess of £7,000.

I applied to the Joseph Patrick Trust for a grant to help out – this could be (here’s hoping!) as much as £2,500. They are holding a review panel on 1st August and I will be notified of their decision within the next ten days.

So this is currently the stage I’m at in this looooong, slooooow process. There’s nothing more I can do until the JPT have held their review in August. The waiting continues…

You never know, I might get my new chair in time for Christmas! (Don’t mention Christmas. Yes, I know, I know – sorry folks).


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Going The Extra Mile for MDUK

On the weekend of 12th May, my amazing brother and his two friends took on The National Three Peaks Challenge. This involves climbing the three highest peaks of Scotland, England and Wales, within 24 hours.

The total walking distance is 23 miles (37km) and the total ascent is 3064 metres 6o(10,052ft). The total driving distance is 462 miles.

The three mountains are:


All of this is in aid of Muscular Dystrophy UK.

As you may already know, I have lived my entire life with a rare form of MD – Ullrich congenital muscular dystrophy. Having witnessed his little sister grow up with the effects of this muscle-wasting condition, my brother decided he wanted to do something – something big! – to help make a difference to the lives of others living with MD. That something is the National Three Peaks Challenge.


Report from my brother:

Friday 11th May: We drove ourselves from Worcestershire and stopped overnight at a place called Fort William in Scotland.

Saturday 12th May: The challenge began at 16:40 as we started to climb Ben Nevis, in sunny but very warm weather (a little too warm). We peaked in 2 hours 10 mins, reaching the snowy summit at 18:50. Visibility was perfect and gave us spectacular panoramic views of the other mountains in the area.

Ben Nevis, accomplished!
Ben Nevis! One peak down, two to go…

We then ran down to the car in a total of 3 hours 45 mins, before driving through the night to the hamlet of Wasdale Head in the Lake District, to start our climb up Scafell Pike.

04:19 – Peaked at Scafell Pike

Sunday 13th May: It was pitch black and rainy all the way up to the top (04:19), but the weather cleared on the way down and the Sun started to rise, making it easier to navigate. However, our descent took longer than we hoped due to extremely slippy rocks underfoot, combined with a lack of sleep.

View over Wast Water at first light during descent down Scafell Pike

Finally, we drove on to Pen-y-Pass in Snowdonia to begin our climb up Snowdon. The weather was perfect – sunny with very clear visibility. We took the Miners Track up to the summit (12:30) and then the Pyg Track back down.

The hardest part for me was the first 30 mins of our trek up Ben Nevis. It gets incredibly steep straight away and in the extreme heat I soon got jelly legs. But as we got closer to the summit, it cooled down and I was able to splash my face with cold water from the stream coming down the mountain.

Collectively, we all found the biggest challenge was to keep going despite the lack of sleep. It was hard to maintain enough energy and endurance to stay focused and not trip over!

Challenge completed at: 14:43 in 22 hours 3 mins


I would like to say a personal thank you to the best big brother anyone could ever wish for! We don’t do gushy at all, so he’s probably reading this wondering why I’m being so nice. Rob – you know how I feel. Loves you more x

The bro x

To Adam & Dan – thank you both for being such good friends and for selflessly offering your time and efforts. It means more than you realise.


To anyone reading this, please share the link and if possible, make a donation to support the great work of Muscular Dystrophy UK:

https://www.justgiving.com/fundraising/3peaksformd

International Women’s Day 2018 (Belated)

Just a quick post today, to (belatedly) celebrate International Women’s Day 2018.

It is held on 8th March, every year. Here are a few quotes that resonate with me…

What does International Women’s Day mean to you?


This post comes to you a little late since I spent Thursday 8th March in hospital having an operation – fun, fun!

I’m now on the mend and planning future blog posts. What topics would you like me to cover? If you have any ideas or suggestions, I would be grateful if you would leave a comment.


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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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