Diary – Diary of a Disabled Person.

A Tale of Two Cities.

For my entire, although admittedly not very long life I’ve only ever lived in two cities, both within sight of each other in West Yorkshire, the best county in the UK.

I spent my school days in Bradford, a city built in the basin between many steep and sprawling hills, which has a mildly unfair reputation for being a city full of low-life criminals. Aside from the several decidedly high-life criminals living there, most of the citizens are decent people trying to make a (mostly) honest living. It has a rich industrial history, and some of the best food in the UK. As someone who spent 18 years there, I can say from experience that it is a multicultural hub of people from all backgrounds, just like many cities around the world.

Unfortunately for the disabled, perhaps as a combined result of steep hills and historical architecture, the track record for accessibility is not brilliant. While the modern buildings have to make provisions for access by law, many of the older buildings are protected by historians who are more concerned with historical preservation than equal rights, making it incredibly difficult to install disabled access. Similarly, a lack of funding often means that smaller shops and businesses simply can’t make the necessary changes to allow wheelchair access. However, even if every building in the city centre was accessible, some of the hills are so steep, the pavements so narrow, and the car parks so expensive that it is virtually impossible to traverse the city centre with any kind of disability. Geography simply wasn’t our side when Bradford was built.

Although I had a great childhood in Bradford, I never felt like I belonged there. This was not entirely due to the disability, as even before suffering meningitis I didn’t quite fit in. My interest in higher education may have been a large factor here, as those running businesses in Bradford quite rightly feel that being clever doesn’t always help day-to-day life. It may also be that my drive to progress and move forward, while many in Bradford are perfectly content to stay in one place doing what they know, set me apart from others. Whatever the case, when I finally came to leave school, I was ready to move cities.

I have lived in Leeds since starting university in 2014. Although hills are still a common occurrence here, they are nowhere near as steep as those in Bradford and the city centre is actually quite flat. Most of the buildings are modern, and have automatically incorporated disabled access, and even the historic buildings often have some form of provision for disabilities. It also helps that when the pavements are disrupted due to building work, ramps are put down for wheelchair users in place of the blocked kerb drops, and they aren’t stolen within a week. Living in the city centre means that everything is nearby, so it is rare that I need to rely on public transport, which is readily available for me when I do need it.

From day one of university, I fell in love with Leeds. While not quite as culturally diverse as Bradford, it still houses many cultures, and that means the food is pretty good. Leeds is the type of city where you will never get bored; you can guarantee that there will something going on somewhere, whether it be a concert, show, or special event hosted by the council. The council make a particular effort to maintain disabled access at these events, so I’m never excluded. I always enjoy just wandering around the shops, particularly near Christmas when the lights and decorations are on full display. Although it can be cold, I’m never far from warmth and a hot drink.

Obviously university quenched my thirst for higher education, but I was impressed by how forward-thinking Leeds was as a city. Admittedly this shouldn’t surprise anyone, as the city has three universities and many more colleges, so a lot of innovative minds congregate here. Many people say that London never stops but that it is always bustling with activity, and I would say the same of Leeds. It is in this fast-paced, liberal, and ever-changing environment that I truly fit.

We still get low-life criminals though…

Trump UK Protest.

The turnout for last night’s protest in Leeds was amazing. People were protesting for so many reasons; ableism, sexism, racism, homophobia, Islamophobia, transphobia, gun control, abortion rights, and the way ICE are separating families. It felt really good to be a part of this movement towards a more peaceful, liberal society!

Trump Protest.jpg

Organised Time.

Having established contact with many people who are struggling with chronic illnesses like my own, I have been asked more times than I can count how I managed to study for a degree, and now to write and work, while living with an illness. Admittedly, this is more of a struggle than I like to let on, and to say I have stubbornness issues would be to put it mildly. However, there is one strategy I have found invaluable in the management of my disease, and instead of being a fancy, marketable, secret trick, it’s actually quite boring. I manage my time very carefully.

On days when I have more academic or written work to get through than normal, I cannot manage any other tasks such as housework, or going out to socialise. On these days I make sure to avoid any additional tasks where I can, focusing my energy on completing the work, leaving me time to pace myself with regular rest periods throughout the day. On days when I have an average workload, I may do something such as go out to a coffee shop, or spend a little longer preparing an evening meal, but again the work becomes the main focus of the day. On days with a light or minimal workload, I do what housework I can, and when I’m not doing housework I have time for social and recreational activities, usually involving cake somewhere along the line.

Inevitably, schedules change at the last minute, and so this system has some flexibility to it. I swap round when I am going to do which activities, or what night I’m going to cook each meal, giving me more or less time as needed depending on the day. However, on the whole this little trick keeps my daily energy expenditure approximately equal, reducing the chances of having a complete energy burnout. Although this system is perhaps a little dull, it works well for me and my lifestyle, and allows me to make the most of my time and energy.

Obviously this doesn’t always work. On some days, perhaps because my body thoroughly dislikes me, even the most careful time management fails and I end up flat on my back in bed feeling like I’ve been run over by my own wheelchair while suffering from a bad cold. On these days, I can do nothing more than maintain essential bodily functions, and these are the hardest days. As someone who gets bored very easily, the days when I can do nothing are the most frustrating, as my mind will insist on remaining active while the rest of me just wants to lie still. These occasions are not as commonplace as they used to be, though.

My system won’t work for everyone; I’m a naturally organised person who likes to plan ahead. I simply utilised the skill that I already had to benefit my adopted lifestyle when I fell ill. There are other little life hacks that other people use to manage their own illnesses, often based on skills they are already well-practised in. They can be tailored to our individual lifestyles, and used to help us whatever situation we may find ourselves in. There is no one solve-all trick.

Asking for advice from others who have experience at handling chronic illness for a long time is useful, and certainly things that help one person may become useful to another. However, it is essential that we remember the individuality of our cases; the same things won’t work for everyone because everyone’s story is slightly different. Simply embrace the skills you already know, and use them to your advantage.

Diary of a Disabled Person: Collector’s Edition.

Ever since starting this blog in January 2017 I’ve been asked about writing a book countless times. I have decided that now is the time to announce that I am giving serious thought to doing just that, and using my blog as a template for a book.

This won’t be happening any time soon; I will need to edit and reorder blog posts to suit the book format, and I will also be adding some exclusive content which will take some time to put together. I am then going to need an editor or two to proof-read and validate my work – I have a couple of people in mind and they will hear from me shortly.

I also need to register as self-employed and look at how, once written and edited, I should go about publishing the book. Chances are I will opt to self-publish, and while I would love to have the book printed, e-books may be my only viable option financially.

I can only ask that you are patient with me as this is a monumental undertaking, but I think the hard work will pay off. Any financial support that can be offered to help bring this project into existence would be very much appreciated.

In the meantime, please keep reading my blog!

Deja vu; Return of the Leibster Award.

Once again, in just a matter of months, I am extremely flattered have been nominated for the Leibster award! This time I was nominated by Alex, author of The Life Quadriplegic (https://quadlifeblog.com/), and to him I say a very earnest thank you.

The Leibster award was created in 2011 in Germany, and is given to bloggers by other bloggers online. This award focuses on small blogs, recognising their potential to grow, and acknowledging those with the kindest, welcoming, most-valued musings.

To accept the award after being nominated, the blogger is requested to accept the award on their blog, and thank the blogger who nominated them with a link to their blog included. On this occasion, I have been asked to answer 11 questions asked by the person who nominated me, nominate some more people, and give those nominees 11 questions to answer.

11 Answers to Alex’s Questions.

Q: If you could visit any time in the past (or future) when would it be and why? A: I would love to visit Ancient Egypt, sometime after the building of the pyramids when civilisation was well established, but before Cleopatra’s reign. From what I know of that period, women were often seen as the equals of men, and were able to own land and money. Plus, cats.

Q: What is the one thing you most hope to achieve by blogging? A: I want to challenge societal perceptions of disability by reaching as wide an audience as possible, and educating them about the lives of the disabled, and how to treat disabled people.

Q: Who is your hero – the person you most respect and look up to? And why? A: It’s a cliché answer for a disabled person, but I’d have to say Stephen Hawking. Not only did he challenge people’s perceptions of disability and helped to normalise disabled people, but he also managed to make any invaluable contributions to scientific research.

Q: Where do you hope to be in your life 5 years from now? A: I never like to plan ahead too much, as personal experience has shown me all too well that mind-blowing, life-changing events can turn your entire world upside-down in a matter of hours. However, I certainly wouldn’t be disappointed if I had established myself as a writer with experience behind me, and a potential career ahead.

Q: If you could give any advice to your 10-year-old self what would it be? A: Stop trying to please the cool kids. The more you try to fit in, the more they’ll ridicule you.

Q: What is your favourite quote, and why? A: “I will never be voiceless, my weapon of choice” – from the chorus of Dangerous by Shinedown. It reminds me that being vocal about something that isn’t right is the only way to make others see that it is wrong, and helps them change it.

Q: What is your favourite thing to do in your spare time? A: I’m a big fan of video games. Recently I’ve played Doom (2016), Horizon Zero Dawn, and Assassin’s Creed: Origins, all of which I have thoroughly enjoyed.

Q: Name one thing you would change about the world, and why? A: I would want everyone to have equal access to education and healthcare, regardless of location, age, gender identity, sexuality, race, religion, wealth, disability, or any other means of discrimination. That still leaves people to make the choice as to how they want to live, but gives everyone the chance to get educated and live a healthy lifestyle if that’s what they wanted.

Q: Where is your favourite place that you have travelled to? What do you like about it? A: I’ve been all over the Lake District in the north of England, and I’ve loved every part of it. It’s a diverse collection of mountains, lakes, beaches, and towns, and there is always something new to discover every time I visit.

Q: If you could turn any activity into an Olympic sport, what would you have a good chance at winning a medal for? A: Giving animals hugs. I think I would have a serious chance of winning a medal for hugging the most animals within a 10 minute time limit.

Q: When people come to you for help, what do they usually want help with? A: Most people know I’m a nutritionist so I get asked for diet advice a lot, which I don’t mind at all. I enjoy helping people understand what they’re doing right already, and what they could do to improve their diet too.

My Nominations.

Since I haven’t discovered many new blogs that I fit the criteria for the Leibster award since accepting my previous nomination, I only have two to add.

KimiBlack: https://kimiblack.wordpress.com/

Thinking out Loud: http://www.thinkingoutloud-sassystyle.com/

11 Questions for my Nominees.

Cats or dogs?
Where did you grow up?
What is your favourite time of year?
What is your favourite genre of music?
What is your favourite film that was adapted from a book?
What was your favourite childhood toy?
Tea or coffee?
What is your worst habit?
What is the kindest thing a stranger has ever done for you?
Who are your role models?
What is your biggest ambition?

Thank you all for your continued support, which has enabled me to grow Diary of a Disabled Person into a triple-award-winning blog!

Nutritional Nutters.

Some would say that completing a degree with a disability is quite an achievement, but as a Millennial even the greatest of achievements pales in comparison to the terrible flaws displayed by my generation that will surely be the end of society itself. People will always find faults if they are looking for them, and as such, it has been made apparent to me that being disabled with any sort of medical knowledge is completely incompatible, because surely everyone with this knowledge is in perfect health all the time, and would cure themselves with their knowledge should they fall ill.

Approximately a year ago, I was diagnosed with iron deficiency anaemia, which I have since recovered from. At the time, the response I invariably received upon revealing my deficiency to someone was, “But I thought you were a nutritionist”. The truth was that a tablet I was taking limited the absorption of iron in the intestine, and despite my dietary iron intake being perfectly adequate, most of the iron was quite literally being flushed down the toilet. Of course, despite the fact that I have spent three years and thousands of pounds dedicated to the subject, the person I was speaking to knew far more than me having read about it Wikipedia, and I was just making excuses for being a poor nutritionist. Just about anyone with any medical knowledge or experience in a clinic will roll their eyes at this point; while I can hardly criticise using the internet, because well… I’m on the internet, it can be the bane of our lives.

The same logic has been applied to my disability; admittedly there are a few dietary tricks that can help maintain energy levels throughout the day, but certainly there is no scientific evidence showing a particular diet that will immediately cause me to leap out of my wheelchair completely free of disease for the first time in over 7 years. The closest I ever get to feeling like that is when someone offers me chocolate cake, because although I know the many ways in which cake could potentially kill me, I like cake, particularly the chocolate kind. The fact that I am chronically ill is frequently used to evidence my incapability in my chosen field, which is almost as annoying as receiving a smug look before being told nutritionists shouldn’t eat chocolate cake. Why this would apply specifically to nutritionists and no other human being on the planet is beyond me, but clearly I know only that I know nothing.

There is also one deep flaw in the thought process behind such accusations; nutrition is very rarely used as a cure, but is actually used to treat a disease or manage symptoms. Ask any diabetic this, and they will confirm that no matter how many visits they have with a dietitian, altering their diet will not make their pancreas behave itself, merely managing the consequences. Likewise, I use nutrition to help me manage the symptoms of my condition, not to cure it. By my, albeit somewhat biased logic, this makes me an even better nutritionist, as I have experience in altering the diet to suit my needs, while still satisfying my cravings for chocolate cake. It is by stating that nutrition rarely cures to the people I deem to be “Nutritional Nutters” that I return their self-satisfied smugness, in a dish that is far more nutritious when served cold.

The Leibster Award Strikes Back!

I am extremely excited to announce that I have once again been nominated to receive the Leibster Award, taking me up to a total of three awards received in a matter of months.

I am planning to accept the award a week from Sunday (1st July).

A big thanks to Alex Squire at The Life Quadraplegic for nominating me. https://quadlifeblog.com/