Although I’m not a particularly superstitious person, there’s always been something about the number 18 in my family. It’s when all the birthdays and anniversaries and life events seem to fall, it’s the addresses we live at, and it always seems to be an intrinsically lucky number. And even though I’m the kind of person who’d usually laugh that off and declare it all as chance, I did wonder whether 2018 would be a significant year for me… and given the frequency of unexpected life changing things that happened this year, it’s safe to say I wasn’t disappointed.
If you’ve followed me for a while you may also know that social media at this time of year frustrates me a lot and I tend to switch off for a few days, but I couldn’t let this year go without acknowledging or marking it in some way. But rather than list all that’s happened, let me share with you 18 Things I Learned In 2018 instead…
There’s no graceful way to reverse a powerchair into the wheelchair space on the bus.
The cordless hoover is one of the greatest inventions of the 21st century.
Peanut allergies still aren’t ‘trendy’ enough to warrant food manufacturers taking them seriously.
Noise-cancelling headphones are a blessing in disguise when you have problematic neighbours.
Mobility aids are not marketed with young adults in mind, but don’t be disheartened: they aren’t just for elderly people.
Dairy-free milk tastes far better in Yorkshire Tea than it does in Tetley’s.
When your boiler breaks down and you think ‘I can manage a few days without it’… you are thoroughly incorrect.
People who’ve been through tough times often have more interesting stories to tell.
Contrary to opinion, investing in a huge corner sofa for just one person is absolutely money well spent.
Blue Badge assessments aren’t fit for purpose for people with invisible illnesses.
Making yourself poorly from doing too much is not an achievement.
You can earn money from blogging and social media without losing your integrity.
You can’t please everybody.
The employment world is missing out on a huge pool of talent by not embracing flexible working for chronically ill people, but the opportunities that do exist are awesome.
Oreo thins are very much superior to their chubby originators.
Disabled people are still an afterthought in the UK, and this government isn’t the one that will change that.
Being resilient doesn’t mean you’re not allowed to have an off-day.
Having a positive attitude won’t magically solve the challenges you encounter, but advocacy and a bit of creative problem solving might.
If you’re comfortable sharing, what’s something you’ve learned in 2018?
Thank you so much to everybody who’s stuck by me, supported my endeavours, and made this year one to remember. I appreciate you more than you know. Here’s to the healthiest and happiest 2019 possible!
Okay but seriously, how the heck are we in December 2018?! Just before we dive into my quarterly recommendations for the end of the year, here’s a heads up that you can find all of the books mentioned below on my Amazon Storefront* with Amazon Influencers, along with all my other favourites from this year… perfect for indulging in some new reads for the New Year with your Christmas money, if I do say so myself…
“’You weren’t there, you didn’t see’, he said. ‘There must be something in books, things we can’t imagine, to make a woman stay in a burning house; there must be something there. You don’t stay for nothing”.
Within pages of this book, I knew it was one that would make a lasting impact on me. Set in a time where reading books is considered a sin, protagonist Montag is faced with difficult questions about the nature of humanity. People have reached a point where they need all their information and entertainment to be delivered in quick, successive bursts, using technology, rather than come from paper and ink. Montag, although working as a firefighter whose very purpose is to burn and demolish the remaining books forever, has to endure and conceal a devious streak to indulge in reading himself, and his consequent actions mean he’s faced with decisions he never could have imagined he would be. View Post
In May 2018 I moved into my own flat, and it’s safe to say it’s fast become my little happy place. Although I’m chronically ill, I was very fortunate to be in a position where I could live on my own if I wanted to… and I knew that doing so was the best thing for me. As with everything there are pros and cons, but I’m finishing up my 2018 knowing that I absolutely made the right choice by making the decision to live independently.
There’s no doubt in my mind that there are others out there who’d like to live this way too, but feel overwhelmed at the thought. One of the questions I’m most frequently asked by people who read my blog is how I manage independent living alongside my condition, and today I hope to share a little about beginning that process. I already have another post planned about the specific mobility aids and adjustments I use on a day-to-day basis, and so today I’m sharing five introductory tips to ease you into independent living…
Know the support you’re entitled to
One of the biggest pitfalls that holds people back from living independently is simply not knowing what support is out there. Here are a few areas to consider:
Yorkshire Water Priority Services Register: a free service designed to make meter readings and communication more accessible for disabled people and those with additional needs. You can inform the company of any health requirements, request information in various formats, appoint a nominee if you struggle with communication, take measures to protect from bogus callers, and more. You’ll even be delivered bottled water as a priority should your own water supply be interrupted: an accommodation ideal for people with conditions like mine, who can struggle to leave the house without forward planning. The form takes only minutes to fill in and submit, and can be found on the Yorkshire Water Priority Services Register page.
Council Tax reduction: if you’re living on your own, you’re entitled to a 25% reduction in the council tax you pay. This is something I wasn’t aware of until somebody else informed me, and that reduction can take a significant amount of money off your monthly or annual contribution.
Needs Assessments for Social Care: should you feel you need support with daily living in areas such as cooking or cleaning, you may be entitled to support from social services, as well as specialist equipment to help you around the house. The first step in this process is to request a needs assessment from your local council, which you can do on this page.
Subsidised travel services: if you can and do travel, you may also be entitled to free and subsidised travel. This varies massively according to your local authority, but you may be able to request a free bus pass for use around your town or city. Alternatively, there may be a DialARide service near you. These minibuses pick you up from your doorstep and can take you to various local amenities on set days. Don’t be fooled by the misconception that this service is only for elderly people doing their weekly shop: I initially thought the same, but it turns out it’s for anybody with additional needs who struggles to leave the house. All aboard the party bus.
Prescription delivery: this last adjustment has been an utter blessing for me. If you have PatientAccess or online prescription services, you can request a repeat prescription, send it to your local pharmacy, and have them deliver it straight to your door by courier. Going out to collect medication was always one of the most tiresome and problematic tasks for me (particularly with the number of admin errors and mix-ups that necessitated several trips out each time), so having this service and the ability to request the medication straight to you is ridiculously convenient. I will say that I had a not very good experience with the Lloyds Pharmacy system, but I later visited my local Boots and registered for their system in store, with no problems.
Keep organised
One you have your support in place, the one golden rule to keeping on top of things is to avoid procrastinating. It can be tempting to hide the bills in your letterbox under the rug and pretend it was never there, but anybody will tell you that this achieves nothing except mild palpitations when that passive-aggressive final demand notice plops through the letterbox too.
Fortunately, if you, like me, have a real and genuine appreciation for organisation and get a bizarre sense of enjoyment from it, there’s a way to make these tasks tolerable. Get yourself a big expanding file, some file dividers and some sticky labels, and go for your life. If there’s ever a time to channel your inner Monica Geller, it’s now.
Create a safe place to keep all your bills and paperwork together, arranged by type so they’re easy to find again if you should need them. I’ve always done this with bills and important documents but lately I’ve started doing it with all my medical and health stuff too, and let me tell you, if you find yourself needing to make copies of your medical evidence as often as I seem to these days, your past self will thank you profusely for it.
Be prepared for if things go wrong
The fact of the matter is, things won’t always go right. No matter how organised and on the ball you are, you simply can’t control everything. And I don’t know about you, but one of the biggest downsides to life with chronic illness for me is that your health makes it difficult to adapt to unexpected situations.
As a recent example, my boiler broke a couple of months ago, just as the colder weather was starting to approach. I couldn’t call the boiler man to come the next day, because I hadn’t accounted for the extra energy expenditure and knew that I’d be too poorly to deal with them. In the end I went 6 days without heating or hot water and if you know me, you’ll know how much of a nightmare that was. I’m permanently freezing as it is, and obviously couldn’t just nip out to a coffee shop to warm up.
Anyway, my point is that these things can be awful, but they’re sometimes unavoidable. You can’t control these circumstances, but what you can do is be prepared for them. Keep a book full of any emergency contacts you might need: boiler man, electrician, landlord, carers or support workers, or, God-forbid you need it, internet maintenance. Having a clear point of contact and procedure at these times can be enormously helpful, especially on the brainfoggiest of days, and can help you to resolve the issue as quick and painlessly as possible.
We mentioned above having a direct contact procedure for home-related services you might need, but another element we need to consider is having the more general forms of contact too. I won’t lie and say that living alone doesn’t come without challenges sometimes, so it can be so beneficial to have people you can call upon, should you need to, too.
If you can, forming good relationships with neighbours and anybody involved with your property can be a Godsend. There might even be miscellaneous people who you get to know as you’re going about your business: I somehow ended up good pals with my post lady, and as I’m sure most of you are, I’m on first name terms with the local pharmacist. Chronic illness life. It’s important to know that there are people who know you, and know a little about your circumstances, just as a light precaution.
If you wanted extra safety and security, you might even like to register for a super sexy Personal Alarm Service. I joke about them because like most disability aids, *sigh*, they’re inherently associated with elderly people, but in reality they’re the ideal way accessing any help you should need, particularly in an emergency or if your health is especially unstable or unpredictable.
On the flipside, I try to make sure I’m always contactable by my family and friends too. Even though I try to limit my phone screen-time these days, I made the decision to have a landline installed alongside my broadband, so I could be reached in case of an emergency at home. It’s amazing to think that the time before phones and internet wasn’t all too long ago: thankfully for us, technology means that keeping connected is one less thing to fret about.
Make it your own
I’m sure I don’t need to tell you that living independently comes with so many perks, the main one being that it is just that: your own space. You know your needs better than anybody, and you understand what will and won’t work for you. Your home is your sanctuary, and making it your own is all part of the fun.
As I mentioned, we’re going to talk about mobility aids and equipment next time so I won’t elaborate too much on this one now, but my best advice would be to know what’s out there, what’s appropriate for your needs, and what can be implemented in your living space. That way, you’re on the right track to ensuring your home is as suitable, safe and most importantly, snuggly as possible. Believe me, a minimum of least five blankets and throws is an absolute necessity.
Do you live independently, or are you hoping to live independently one day? If you have any tips of your own to share, I’d love to hear them!
Living with food allergies is never a walk in the park, but Christmas time is a whole other ball-game. The festive season is very much a food-oriented holiday, meaning that for those with food allergies, it can present all kinds of challenges. The day somebody creates a luxury allergen-free Christmas hamper cannot come soon enough, but in the meantime, the following five stages of dealing with food allergies over the festive season may resonate with you…
Denial
We approach the season with a positive mind-set. We will NOT be governed by pesky allergens. They will have NO bearing on our seasonal Winter bulking. Problem is, denial of this kind only goes so far when you know that the smallest particle of the allergen in question could quite literally kill you. And so, reluctantly, we have to admit that not even the most delicious looking mince pie is worth taking the risk.
Anger
Fuelled on by this mince pie-based deprivation, we turn our attention to seeking the food we CAN eat. And this is where the anger kicks in, thanks to the not-so-trusty labelling regulations here in the UK. Here’s an epic brainteaser for your Christmas crackers this year: if a product doesn’t disclose that it MAY contain traces of nuts but on further investigation discloses it MAY contain ingredients that have been made in a factory that MAY contain traces of nuts… does it or does it not contain traces of nuts? And don’t even get me started on whether or not their definition of nuts includes peanuts, because quite frankly we’ll be going on about that one well into the new year.
Bargaining
Disheartened by our attempts to source safe foods, the bargaining commences. Although not to be confused with allergies, intolerances naturally become something to test your luck with over the festive season. They’re also an easy target for well-meaning yet non-understanding family members, who despite a complete lack of medical education are convinced that food sensitivities simply don’t exist on special occasions. Intolerance maths, if you will, commences: if we don’t even chance a sniff at the dairy for breakfast or lunch, can we risk a teeny tiny chocolate from the selection box? How much harm could it *possibly* do? A valid question, but as anybody in this position will tell you, most likely more than you could imagine. Step away from the Quality Street, friend.
Depression
Let’s face it: there’s no fresh hell like being around the table and watching your loved ones bonding over and luxuriating in delicious festive food, whilst you sit there with a piece of bread that looks like it’s come out of the rear-end of a reindeer and try to be grateful for it. It’s a tough time of year, and it’s absolutely okay to feel a little down about it. If nothing else, know that there will be many others wistfully at the profiteroles with EpiPens in hand too. You’re not alone.
Acceptance
But alas, the good food IS out there. Though non-allergic people may never know our struggles, they’ll also never experience the pure joy of finding a free-from alternative that actually tastes like the thing it’s supposed to. Safe foods are becoming more and more prevalent (particularly in the gluten and dairy free market), and surely it won’t be too long now until we can enjoy safe alternatives to all our favourite festive foods. So stay vigilant, whip out your favourite free-from selection box, and enjoy. You’ve earned this!
