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?