I am aware that quite a few people who follow my blog also have chronic illnesses. I wanted to make a post therefore specifically for people who are in a similar situation to me of things I have found helpful so far. This is particularly the case as so many of these things I’ve only heard of by word of mouth or luck and would have been easy to miss. So here the top seven things I have discovered…
Listening Books is a UK based postal or streaming audiobook library. At £25 a year you can listen to as many books as you can get through. The library is vast with everything from children’s stories, classical fiction, new releases, plays, BBC recordings to a variety of non-fiction. I started a postal subscription about a month ago and it has been so worth it. They have sent me four books to begin with from a list I made on their website of books I was interested in. I can now listen to books when I’m too tired to read off the page. It’s also really useful for hospital stays to be able to tune into something and switch off to what is going on around you.
To be eligible for Listening Books you need to have a form of disability that makes reading more challenging whether it be something that makes you at times too fatigued to read or something such as dyslexia. The charity has been going for decades but I only stumbled across it recently. The staff who run it seem incredibly helpful too and can even make you a reading list if you don’t know what you want to listen to based on your favourite genres.
Future Learn is a website that offers free modules on a range of subjects run by universities. Before you begin, each module tells you how many weeks it will run for and how many hours you need to study a week. Unless you want a printed certificate at the end most courses are free to join, you study it in your own time and when works best for you and you can also drop out if you need to at anytime.
I was really missing studying and this website was recommended to me. I’ve found it really beneficial to have tasks to work towards each week that are intellectually interesting but not exhausting. Courses also have discussion boards so it has been good to interact with people on a variety of subjects. I’m currently doing a history course on the Jacobites and a course on hiring your own personal assistant if you are disabled (something I’m personally going to have to look at). However there are also language, coding, creative writing, science, politics and literature courses.
I stumbled across this website by complete accident but have found it incredibly useful. Euan’s Guide is a website of reviews of tourist attractions, holiday homes, cafes and restaurants but with a difference, it rates their accessibility. Until you are in a wheelchair it is hard to realise just how inaccessible most places are whether it be steps, to doors not being wide enough to people working in the place equating being in a wheelchair to you no longer being an individual person. This guide however reviews all of this and most importantly it is written by disabled people for disabled people. When I was in London with Rollo we found this website incredibly helpful to find places to go as you just need to type in your location and type of mobility aid you use. You can also sign up as a reviewer and rate places near you to help other people too.
This one may seem fairly obvious as when you can’t get out the internet begins to prove an invaluable way to keep in touch with people and discover that you are not alone in your circumstances. While I am not a fan of most Facebook support groups (I quickly got frustrated with it all being fairly pessimistic and people trying to show they were sicker than everyone else), I have found social media can be a positive tool if used in the right way. The most helpful things for me has been following blogs of people who are chronically ill and disabled who still have a positive outlook on the world and are still determined to achieve things even if how they do it is a little different. These blogs really pick me up when I’m feeling a bit more miserable. Also helpful have been hashtags such as #chronicallyacademic, which is of academics who are ill. This has helped give me tips of how I might manage to get back into studying again in the future.
I’ve always had a bit of a notebook and stationary addiction and while I hate shopping can quite happily spend hours in Paperchase. As I suffer quite badly from brain fog on some days and also need to track symptoms and how often I am achieving tasks I’ve found writing it all in notebooks useful. This has led me into the world and hobby that is bullet journaling. Bullet journaling is in a basic form a notebook that is a mixture of a diary, planner, memory keeper, goal tracker and list collection. While it is up to you how you compile it and how basic you make it there are whole Facebook groups of people sharing their pages and ideas of what to put in it. I keep mine fairly simple with a calendar, weekly charts, lists of goals as well as book, film, tv lists and daily habit trackers. You can find more information about bullet journaling here:
I have done lists
In slight contrast to my bullet journal of planning ahead I also carry out the opposite, ‘I have done’ lists. Sometimes I can find it a bit demoralising to not feel I’ve achieved much in a day and so I started making these instead of To Do Lists. Everything I achieve including simple things go on the list and it helps me realise I often achieve more in a day then I had given myself credit for.
Packs for bad Flair up days
While I am symptomatic everyday I have days where I can’t really get out of bed at all. On these days I don’t always know what to do and can feel quite low as symptoms seem overwhelming. As a result of this and to make these days better I have made a couple of different packs specifically for these days. Using shoeboxes they contain things I can do from my bed, that require minimal effort and will cheer me up. For example they might have a favourite DVD or book, things to colour, fluffy socks, favourite food or type of tea and puzzle books. On a not quite so good day therefore all I need to do is select a box and I’m all set.