Tips for Independent Living alongside Chronic Illness [AD]

pippa sat on grey sofa holding cup of tea and smiling, with rainbow bookshelves in background

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…

  1. 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.
  1. 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.

pink organisational division file, opened to show different labelled segments

  1. 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.

 

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Never has a hoodie been so apt 😬⛄️ So my boiler is having a midlife crisis meaning I’ve had no heating or hot water since Saturday, and I can’t get it fixed until Thursday evening at the earliest… adulting is the worst, BUT this does leads nicely into something I wanted to discuss with you lot: temperature regulation issues. I know the norm is for chronically ill people to always feel too hot, but I’ve always had the opposite: uncomfortable persistent coldness, all the time. A neurologist once wrote on one of my letters that ‘it’s like her internal thermostat is permanently on the wrong temperature’ and I mean… they’re not wrong 👀😂 I’ve been sat in rooms where others are sweating and I’m shivering, I’ve taken hot water bottles out in August, and I’ve already got two duvets on my bed. Most of me stays freezing constantly, whilst my joints swell up and become really painful. Last winter was a really nasty time for me symptom-wise, so I wanted to ask if anybody experienced similar things, and what’s helped you through it? Let’s share alllll the snuggly, warm tips. And in the meantime you’ll find me attempting hibernation until 2019…

A post shared by Pippa (@lifeofpippa) on

  1. Maintain different forms of contact

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.

  1. 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!

hands holding ipad displaying yorkshire water priority services campaign page, with cup of tea in background

This post is kindly sponsored by Yorkshire Water. Don’t forget you can sign up for the Priority Services register for free and access the support you’re entitled to by visiting this page.

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