Unrest Review

A couple of weeks I came across the documentary film Unrest. I’ve now seen it a couple of times and really think that it is an important contribution to film as it explores the concept of illness and goes beyond the normal portrayals of it in media as something from which a character is either miraculously cured or dies from. Focusing on Jennifer Brea, the filmmaker’s life, Unrest looks at what it is like to live with a disabling chronic condition both physically and mentally, as well as how widespread an issue this is, yet is never really discussed. Instead as she puts it with chronic illness, “we disappear so you never see us at our worst”. Brea through the film successfully changes this.

Unrest started off as a series of clips that Brea made on her phone to document her symptoms and how ill she was so she could show this to doctors in an attempt to find answers, a diagnoses and be believed. These clips which have been retained throughout the film provide an accurate portrayal of what daily life is like for her. However the clips then evolved and through showing film of what her life was like before illness, with illness and interviewing others who are bed bound, scientists and medical professionals through Skype from her bed, Unrest has created a new way of making films. While Unrest focuses on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) which Brea was eventually diagnosed with, the film however also is able to show what it is like to live with other disabling conditions too. What isn’t mentioned in the film but has been discussed in interviews since is that Brea also has diagnoses of Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS) and so life with these conditions is also shown.

Brea explores her own personal history as going from someone who was studying for a PhD at Harvard, who had travelled the world, studied abroad and was extremely high flying and ambitious to being bed bound and wondering what her identity is as she grieves all she lost and might have been and wonders what her existence will consist of now. She explains she feels like she has “died but forced to watch the world move on”. Running alongside her own journey of being ill is the journey of chronic illness and ME/CFS too. As is explained by professionals and looking at historical data in the film longterm illnesses that are hard to diagnosis often have histories of being believed to be psychosomatic with sufferers being sectioned and diagnosed with hysteria before a biological cause was found. ME/CFS is still going through this process. As the majority of sufferers of ME/CFS and other autoimmune conditions are female the film explores how much has this influenced historically how the illnesses have been viewed by the medical community and the lack of research that often goes into these areas.

While the personal experience and history of ME/CFS is explored, Brea also explores the stories of others severely affected with the condition around the world. We learn of a young woman in Denmark who was sectioned as it was not believed she could be physically ill against her and her families wishes. Another woman in America tells of how her marriage fell apart after she got ill and answers couldn’t be found at first, until her daughter also got sick with the same condition. A former photographer who can no longer speak, eat or tolerate any noise or light has his story told by his family who have actively got involved in research about the condition, while a 23 year old sufferer from Kent, England who spent four years of her life in hospital has her life depicted. While films exploring topics such as ME/CFS have been absent, the fact that the condition affects millions around the world is not ignored within this film. A portion of Unrest examines the protests and campaign ‘Millions Missing’ which aimed to get governments to sit up and take notice that people within their states were missing from everyday life due to severe, chronic illness that was being ignored. The Millions Missing campaign is extremely clever as it raised awareness of people who are absent from society by simply placing their shoes with a label of what the person was missing somewhere public. Its really worth looking up if you have a spare five minutes.

Unrest’s main aim is to raise awareness of chronic conditions, their history, how widespread they are and how these conditions are absent from public consciousness and hidden behind closed doors. It does this effectively and the film is definitely hard hitting and impacting on the audience. For me personally though what stood out was that the film showed that severe illness is not just something that happens to people who do not want to work and want to look for an excuse to stay at home. It shows it is very real and has devastating effects for people who very much want to be part of life and who were extremely active studying, working, being part of families, travelling and living life to the fullest before getting sick. I thought this was incredibly important as people who are ill are so often referred to as ‘benefit scroungers’ and made to feel like we are simply trying to cheat a system to avoid responsibility.

Another important element in the film for me was that it focused not just on the individual patient’s experience of being chronically ill but also the wider implications of this on those around them too; how families are affected, how simple daily tasks became impossible etc. The guilt of the sufferer and changes families had to make was explored in detail. Unrest is not without humour and hope. Being ill does not mean you stop living completely and sometimes it is the small things that many people can take for granted that can mean a lot in one person with a chronic illnesses day and this was portrayed really well. Finally a note should also be made that the cinematography and music was also fantastic.

If you have a spare hour and a half and are looking for something to watch that is different from other films, is very well put together or simply explores issues that the media usually shies away from I highly recommend giving this a go.

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How I nearly had Astronaut Syndrome

As a child for many years my main ambition was to grow up and be an astronaut. My room consisted of posters of stars and planets, my bookshelves of tales of outer space and the only barbie I ever owned was hung from my bedroom ceiling in a homemade astronaut outfit. For a while aged about 4 I had an email correspondence with NASA and they answered younger me’s questions about their space missions and what I needed to do to become an astronaut myself.

Fast forward to the present and while I no longer have ambitions to be an astronaut, though it would be pretty cool, I was slightly too excited to learn that POTS, one of the conditions I’ve been diagnosed with, was almost called Astronaut Syndrome. I’m very disappointed that it was not!

It turns out that astronauts after being in space for any amount of time on returning to earth develop the same symptoms as people who have POTS. Their bodies are unable to respond to gravity and they are unable to sit or stand up for any length of time, their Autonomic system (which regulates things we don’t have to think about such as heart rate, temperature and breathing) doesn’t work as well and they often have problems with fainting. While their condition is not lifelong and they are able to undergo processes for their bodies to work on earth again the similarity between the two is incredible.

It was hoped for a while that in studying astronauts return to life on earth and what worked to improve symptoms the medical community could transfer this knowledge to help patients with POTS. Unfortunately it turns out that this is not so straightforward as there is nothing exactly wrong with astronauts bodies. Nothing has really changed, they just need to readapt. For people with POTS however there are neurological changes that have taken place meaning the wrong messages are sent and we cannot control things that other people can automatically. Still there maybe things that could still be learnt and I’m following a current research project into this with interest.

It also has raised for me the question as to what would happen if you put a person with POTS in space, away from gravity. Would our symptoms improve? After all there would be no gravity to pull our blood downwards so the fact we can’t regulate this wouldn’t matter. I’m more than willing to volunteer myself to find out and revisit my childhood ambition to become an astronaut after all!

Dysautonomia Awareness Month

Once again I’m a little bit behind with blogging but my excuse is that I have had a month of feeling especially rubbish with symptoms and consequently had quite a lot of hospital visits. I’m considering giving the hospital as my address now. Luckily admissions have become  routine; they know what to do, I know what will happen and I know most of the staff now fairly well. My last admission my nurses ended up changing so that I have consistency with it being the same few people which I was very grateful for as I didn’t have to explain anything and they knew the signs to look for too. Consequently it was a fairly quick visit as they just attached me to a drip and started giving me fluids very quickly. They also got a vein first attempt, the first time this has happened for months!  As a result though this post that I had hoped to write near the beginning of October is just being written now. However as it is still October which is Dysautonomia Awareness Month I decided it would still be relevant.

Dysautonomia Awareness Month

I’ve always felt a bit unsure of awareness months for various things if I’m completely honest. Maybe its because there are a lot of them and sometimes it is confusing if it is awareness about the issue as a whole, or a specific element of it and also what as an individual you can do about it. However, I have found that with something like Dysautonomia Awareness Month it is quite useful. As a result of the month more information is being released about dysautonomia and made public and so more people are told what dysautonomia is and signs to look out for. As it is a relatively unknown group of conditions dysautonomia is rarely diagnosed and often people know little about it including medical professionals. Since being diagnosed I have only come across three medical professionals who knew what it was (and I have seen a lot!), one of these worked specifically with people with these conditions so I’m not sure if they count. Out of the other two medical professionals I was the first person one of them had met with the condition and for the other only the second in their career and they worked at a large teaching hospital. My own diagnosis really only came about by chance. Now consultants think I may have started to show symptoms of it, albeit mildly, since I was nine years old. It was not until several years of being abroad resulting in me being directed to tropical diseases, in what ultimately proved to be a red herring, leading to a consultant who remembered reading a journal article about dysautonomia who put my symptoms and the condition together. If it wasn’t for that one person, I’m not entirely sure where I would be now or if I would be any nearer a diagnosis. Awareness therefore can make a massive difference.

So what is Dysautonomia?

Dysautonomia basically means disruption of the autonomic nervous system. There are various types of it; some only affect specific population groups such as specific ages or ethnic groups, others are incredibly rare, they also range in seriousness. Postural Orthostatic Tachycardia Syndrome or POTS (which I have a diagnosis of) is one of the most common types. POTS while only being recognised as a syndrome in 1993, has however been around throughout history. Previously it has been known as Soldier’s Heart, which was documented as a condition that caused soldiers to faint on exertion; Irritable Heart; Effort Syndrome and De Costa Syndrome. There is also documentation of an abnormal type of polio that consultants today now think might have been POTS. More recently many people with POTS and other types of dysautonomia have been diagnosed with ME or Chronic Fatigue Syndrome and it is estimated that up to ten percent of people with a diagnosis of ME/CFS might actually have a form of dysautonomia that has never been diagnosed.

Throughout history and even today it is extremely common that people with dysautonomia are wrongly given a psychiatric label, especially as there can be so many symptoms and yet it can be difficult to see, making it an invisible illness. Instead it is often believed to be in the patient’s head and there are many associations made with the historical idea of the hysterical female (POTS sufferers are mainly female and develop symptoms as a teenager/early twenties). From my own experience I started to have an increase in symptoms when I first started university as an undergrad, I was directed by my university GP for Cognitive Behaviour Therapy. I was then rejected from the CBT course as the person running it did not think I displayed stress or anxiety and didn’t understand why I had been referred. For many people this becomes a never ending loop. POTS is not connected to mental health however sometimes symptoms may seem similar to those experienced by people who are anxious or stressed by a doctor. The average person takes six years and eleven months to get a dysautonomia diagnosis from when their symptoms first start becoming problematic.

What is especially frustrating about this is that dysautonomia, especially in the case of POTS, can be recognised from very simple tests. Taking your pulse from lying down and then monitoring it while standing up for ten minutes can provide an indication of whether there might be something more serious going on. If your pulse goes over 30 beats per minute higher than your resting pulse within ten minutes of standing (over 40 beats per minute if your under 19) then this is a sign something isn’t right and your body is struggling to correct itself in relation to gravity.

What causes POTS?

POTS symptoms are caused when the autonomic nervous system doesn’t work properly. On standing gravity pushes blood downwards into the legs. Most people are able to continue to get their blood flowing back to normal and their bodies constrict to changes in posture quickly enough that they don’t notice. For people with POTS this doesn’t happen and you end up with blood pooling in your feet and legs, your body consequently has to work much harder to pump enough blood and oxygen around, which causes your heart to beat faster. People with POTS may faint on standing up as a result. Often we also don’t have enough blood volume either. It is basically torture by gravity.

POTS though is just not a case of your heart rate speeding up on standing, there are many other symptoms alongside including gastrointestinal issues, difficulty thinking and concentrating, exhaustion, headaches, muscle and joint pain, tremors, lightheadedness, numbness in limbs, dizziness and many more.

Why does it happen?

This is different for everyone. Some people develop POTS after a virus and they just never seem to get better. For other people it develops during pregnancy or after surgery. For many people though there may be an underlying condition that triggers dysautonomia such as a connective tissue disorder, lymes disease, lupus or a number of other conditions some of which are extremely rare.

Long term Prognosis?

This is fairly unclear as research into POTS is quite new. What research has shown is that people living with POTS have the same quality of life as those with severe COPD or on dialysis. Maybe unsurprising from this is that the biggest killer of people with POTS is suicide. Getting ill can also prove more serious with POTS patients being at more risk of developing things such as pneumonia. Getting a cold can quickly turn into a hospital admission.

Some researchers predict people who have POTS caused by a virus are the most likely to recover and respond well to treatment. There is no cure for POTS but treatment can help to manage symptoms. If there is an underlying cause then treating that as well as possible should help to reduce POTS symptoms.

Originally it was thought that the majority of people would improve over time although a new study that was carried out over a longer period with a bigger group of people has partly disproved this instead showing that the majority did not get better although symptoms may improve.

What POTS means as an individual?

For me POTS has definitely changed my life. I am unable to tolerate sitting up or standing for long periods of time. My blood pressure is extremely low, on standing my pulse can go very high and my oxygen levels drop and my legs go purple while my hands stay their usual colour or I go very grey.

POTS has meant I now use a wheelchair to get around when I am out the house. I also have to have a LOT of salt in my diet to increase my blood pressure and have to drink a minimum of three litres a day to try and increase my blood volume.

If you’ve managed to make it to the end of this post and want to learn more about POTS, for Dysautonomia Awareness Month last year, this video was made which provides a pretty good outline of the condition. POTS video

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.
to do

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.

 

 

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?