Helpful Discoveries I’ve found since becoming ill

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
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.

https://www.listening-books.org.uk

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Listening Shep

Future Learn
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.

https://www.futurelearn.com

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Studying Again

 

Euan’s Guide
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.

https://www.euansguide.com
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Social media
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.

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Bullet journaling
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:

http://bulletjournal.com

 

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.
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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.

 

 

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Top 10 Quotes for Chronic Illness

My last week has consisted of Doctor Who binge watching (the newer series starting with the 9th doctor). I only owned season 1 so have now seen it three times and I think I might be becoming addicted. Season 2 arrived today so I shall now start watching that. I missed out watching it all first time round as I grew up for the most part in a TV-less house and somehow it passed me by so I’m making up for it now!

I really like that with Doctor Who- no matter how bleak something may seem there is always a spark of hope remaining. Good ultimately overcomes evil, however it points out that sometimes this must come at a cost. There is also integrity and a case of doing the right thing too as well of course as complete escapism- I mean you can’t get further away then a different planet in a different time period! This however inspired me for this blog post. Which is basically things that inspire me!

dr who

I am a collector of quotes. I have a notebook where I copy down any I like and my walls are dotted with post-it notes with my favourites. These have taken on a bit of a new role since I’ve become sick. I like having ones up that remind me that things aren’t all bad, that there is good in everything but yet also don’t point out that everything has to be good all the time. Being ill I’m learning (or trying to) that it is ok for things to sometimes be far from fine and that that is simply part of the process of being human. So here is a list of 10 quotes I’m currently finding most helpful.

The human soul has still greater need of the ideal than of the real. It is by the real that we exist; it is by the ideal that we live. Victor Hugo

I like this one because it points out that it is fine to still have ambitions, imagination and dreams and not have to just focus on being sick and the present. In fact it is sometimes these things that get you through.

Everyday you either see a scar or courage, where you dwell will define your struggle. Dodinsky

This quote I feel is really important. It would be very easy to become a ‘victim’ of your illness and just to focus on that, it can be quite hard not to. Often I find myself thinking that because I’m ill I don’t have as much value as a human, I can’t contribute and I just take up space, resources and people’s time without being able to give anything back. This helps me to think that it is a decision to become a victim of becoming unwell and feel sorry for myself and instead I need to focus on what I am learning from this experience and what I can still try and do.

It takes a lot of courage to see the world in all its tainted glory and still to love her

This is very similar to the last quote but instead more outward looking. I can look at how awful every situation is or realise how lucky I am to still see certain things or to have certain experiences. At the risk of sounding extremely cliched I do think I’ve become better at appreciating the smaller things these past few months.

It is no bad thing to be lost in a fog or at sea. When land comes into view again you will appreciate it with a keenest that is denied to those who know only the shore. Heidi Thomas.

I heard this on a TV programme a few months back when I had just started becoming unwell and really had no idea what was going on. It resonated, I had to rewind the programme and copy this out. I know there is a high chance I’ll never get better, but even on days I can do a bit more I appreicate being able to go out in the garden or visit someone even more. Everything has taken on a completly different value now.

A secret to happiness is letting every situation be what it is instead of what you think it should be.

I am very bad at this and am trying to work on it. Comparing yourself in the present to where you think you should be or where other people are is just setting yourself up to be miserable. I am finding the only thing I can do is ask myself if I made that particuarl day the best it could be in the circumstances and even if the answer is hindsight is no, there is no point being annoyed about it, only change it next time.

Once in a while, amidst all the bad days, you’ll have a good day. A great day eve. Make sure you remember those days. Keep them safely in the pocket of your coat or in a jar on your desk because you need to know that there are and will be better days. You need to remember how on those days you feel all warm inside, like you’ve just drunk a hot cup of tea. Hold on to the warmth and never let it go.

I love this one! Not sure how much it counts as a quote exactly but I found it, copied it out and have stuck it on an empty jam jar. I now fill the jame jar with folded pieces of coloured paper with anything that went well, of details of a day where I felt a bit better or anything that made me happy. Then on bad days when I feel I can’t continue with life like this, I can look at the jar and remember it is not always like it and that those moments are worth living for.

When you get stranded, the way to start moving again is not to search for an answer but to find a new question to which your life can be the answer.

I feel this needs little explanation but a better way of trying to understand purpose in life and moving forwards instead of focusing on the ‘what ifs’.

I believe in the sun even when it is not shining
I believe in love even when I cannot feel it
I believe in God even when He is silent.
Written on a cell in Germany during the Holocaust

I think this is one of the most powerful quotes there is.

We may lose or we may win but we will never be here again One Republic

This quote is from a One Republic song and has followed me throughout life since I was 18. Living in Uganda, a house mate was a huge One Republic fan and we had this up on the wall. It helped to get through culture shock, homesickness and appreciate living abroad. I have since copied it out and put it up wherever I have lived since and it always reminds me to make the most of each moment, take opportunities as I can and remember as well that the bad moments don’t last. I think it is a good quote for life.

If you have any quotes feel free to comment with them below! 🙂

Hospital Bag 101

Being autistic, I am a person who likes structure and routine. I have decided therefore to structure the blog a little bit and plan to post twice a week when I can on Mondays and Thursdays. Monday’s blogs will be health updates and anthropological musings about chronic illness and Thursday will be reviews and hints and tips I’ve learnt along the way.

So without further a do, here is my firsts hints and tips blog of living with chronic illness- the hospital bag…

Since the start of June, I have had four trips to hospitals and only one of these was planned. While I try to stay out of hospital; I’m not always very good at it and sometimes there is no choice but to go and see a doctor, normally at this point it is urgent.

The first of these trips I went to hospital, as I usually do, armed with a coat, a book, a bottle of water and myself. I expected to be seen, maybe given some fluids and stronger pain relief and sent on my way. That didn’t quite go to plan and I ended up having to get my Mum to bring me some things into the hospital. I learnt that it is not too easy to direct someone else to what you want, when you aren’t there and limited mobile battery can get in the way too. My Mum turned up with the wrong phone charger, clothes that had been waiting to go to the charity shop and forgot any toiletries. While I appreciated her help, it was a stressful situation for everyone and so now I go into hospital prepared. I have a bag already made up that sits next to the front door so whether I’m taken in by paramedics, go by myself or send someone to my house to collect things all that has to happen is for someone to lift the bag. Easy!

The last few hospital trips I have edited what goes in the bag, removing some things and adding more. I’m pretty happy with what I’ve got now so thought I would share what for me is the idea hospital bag to help or inspire.

Clothes
The thing with this is you never know quite how long you will stay. I try to take 2-3 days of clothes with me and can get someone to change these from my house if I’m in longer. I always put a few favourite items in as it is the little things that can make you smile.

– Loose fitting tops. When I’m in hospital, I’m usually attached to various machines, wires and cannulas that medics need easy access to so I make sure my tops aren’t restricting.

– Light cardigan- lets face it hospitals are often unpleasantly hot but sometimes you want to cover up or if your being taken for scans etc. a cardigan can come in handy.

– Comfy PJ’s. This is the most important item in my bag for me. I am not a fan of hospital gowns with the slits up the back, that in my years of many hospitals, I have yet been able to work out how to tie properly and remain decent! I would much rather be in my own clothes. I normally take several pairs in that are all comfy and baggy and again allow easy access to anything I might end up being attached too!

– Spare underwear. Running out isn’t fun!

– Flip flops. If you need to move to a wheelchair to go somewhere or use the bathroom it is easier to have slippers or flip flops that you can slip on easily without the hassle of laces etc. You don’t want to end up with another injury from standing on something in bare feet…

Toiletries
Some hospitals seem to provide these and others don’t. It can also depend how busier they are too. It can be comforting to have familiar smells and items from home either way.

– Shampoo

– Soap

– Toothbrush

– Toothpaste (I feel these are self-explanatory)!

– Hairbrush- I forgot to put one in my bag for ages and always felt horrible, similarly hair ties can be good for keeping your hair out your and the doctors and nurses way.

– Dry shampoo and wet wipes. If I’m feeling really bad the last thing I’m going to manage to do is shower. It makes me symptomatic at the best of times. These things can be a lifesaver and while I may not feel physically better being clean, I do feel mentally better.

– Moisturiser. Hospitals are hot and if your feeling run down, the last thing you need is itchy skin

Fun Things to Do
Hospitals can be boring, stressful and days can seem long. It’s a good idea to having things you can do that are easy, fun and provide distraction.

– A good book or charged e-reader. I try to take something that is long enough that it will take a while to read but simple enough that I don’t need to concentrate much and won’t get distracted by surrounding noises.

– Headphones. Music, podcasts and audiobooks are normally how I get through a hospital stay. It can block out any unpleasant noises from being in a hospital, help you get to sleep, keep you focused and give you something to do. I have a hospital playlist full of upbeat, happy music.

– Crosswords, colouring books, sudoku , puzzles etc- something that requires a bit of thinking but is easy to switch to and from. These can be a good conversation starter if you’re on a ward with the people next to you.

– I also take a notebook and a pen too. I can write how I’m feeling, questions for doctors I don’t want to forget, write letters to people and play paper games (how many countries can you think beginning with ‘A’ or how many words can you make out of the name of the new drug you’ve been put on).

Miscellaneous
– Phone charger- nothing worse than a flat battery to feel like you are now completely cut off from the world.

– Cash. Not too much as there is not always a safe place to keep it but it’s a good idea to have a little bit so you can get home when your discharged, buy something if there is a shop on a trolley that comes round wards or if you start to feel better and are allowed to go sit in a hospital cafe for a while.

– Snacks. Hospital food does not always have the best of reputations and it may be served at times your not used to so I like to keep small snacks with me. As a POTsie I need to keep my salt levels up so this helps when hospitals don’t always cater for this. Always check you are allowed snacks incase you’re having your food intake monitored or have to fast for a while.

– Diluting juice. I have a mini squeezy bottle of diluting juice to make water taste better. Helps me stay hydrated and takes up hardly any space in my bag.

– Medical information. I have a brown envelope in my hospital bag that has a list of all my allergies, doctors, past medical history, diagnoses, medication and symptoms. I try to keep the last letter from my consultants there too. It makes it easier for me as I don’t need to recall information and helps the hospital out too.

What do you have in your hospital bag? Is there anything you think I’ve missed out?