Whether you find yourself in your own room, your own rectangle on a multi-person ward or the A&E, you can take steps to make your hospital space safe, soothing and sensitive to your own needs.
This may sound crazy – especially if you feel extremely ill – but there are some small ways to control your narrative when going through a hospitalisation.
1. Bring a notebook and a pen. Write down the name of every doctor who enters. There will be many so do not burden yourself with trying to remember every name. When you think of something you want to ask your doctors, record it. When they arrive in – undoubtedly busy – take a deep breath and go systematically through each question you have. Do not let the doctor leave until your questions are answered. Sometimes, for the moment, there is no answer. That’s cool, but make a note that the answer is coming and repeat the question later.
2. Make a daily diary entry at the same time each day. The quietest moments will be directly after breakfast or between 6pm and 8pm. You can also use the voice recorder app on your phone as your preferred way of recording your thoughts. Sending voice notes to an assigned friend or family member is another way to take note.
‘We need extra time now’: Students with additional needs call for State exam changes
Owen Doyle: Ireland must ensure Scott Barrett’s claim about Joe McCarthy is not swept under the carpet
Normality now a memory as Beirut suffers the brutal reality of war
Grind schools are booming. Would they offer any advantage in a properly resourced education system?
3. Bring disinfectant wipes so you can wipe down your table, killing bugs on anything touched by you or someone else instantly. Do this every day after each meal.
4. Bring a set of N95 masks or order them online. Don’t use the protection lite surgical masks in the corridors if you want maximum safety. Remember, anyone transporting you somewhere has also transported hundreds of other sick patients that day.
5. See above for hand sanitiser too. Sanitise your hands anytime you enter and exit your space.
6. Bring your most comfortable clothes and a short supply of PJs. Loungewear or athleisure wear are best, and well-structured sandals are a godsend. Slippers are flimsy and shoes are too much work for a two-minute trip to the toilet. When your space is too hot and impossible to regulate, you’ll be grateful for a pair of shorts.
7. Schedule what you can in your day. This will seem impossible at times within the rhythm of the hospital. Organise daily or weekly times to speak to loved ones on video chat. Now you have something to look forward to in the daytime. Plan the movies you want to watch now that you have the time. Organise virtual movie hangouts with friends. Give yourself permission to relax and repaint the medicalised space into your own personal canvas to claim some definitive moments of calm.
8. Music has proven to enhance fine motor skills and to alleviate the impact of depression and anxiety. A speaker and headphones will help. Recently, a cheap purple bluetooth speaker and fleece blanket from Penneys made my hospital stay sound and feel so much better. (Thanks Penneys.)
9. If you don’t have time to pack any of these things or if you are in isolation, remember, Amazon delivers to hospitals.
10. Each morning, if you feel strong enough, eat your 7am breakfast and then get dressed. When we put our own clothes on in a hospital setting, we are giving ourselves permission to self-actualise who we want to be for the day. It is a claim to our own power and future selves. Once you have accomplished this, congratulations. Now you can get back into bed and chill until the doctors arrive.
11. If a medical professional does not ask your consent each time they enter, they are doing it wrong. Tell them. If they persist in this, email or phone the hospital service Patient Advocacy Liaison Service (Pals) and ask for their support as an intermediary. That’s what they’re there for.
12. Although they are there for you, Patient Advocacy Liaison Services are funded by the HSE and work within the hospital system. If they do not respond in a way that makes you feel safe, contact the national Patient Advocacy Service. Despite its similar name, this service is run independently from the HSE or any hospital service. Alternatively, call your lawyer. However, a recent MPS (Medical Protection Society) report revealed that the costs of a medical negligence claim is almost three times higher than in the UK, with cases taking more than 50 per cent longer to resolve. And all of this is exhausting when you’re sick. You won’t have to do anything like this, hopefully, but these are the options.
13. Each morning and every evening write down something for which you are grateful. Speak about it. When a medical professional makes you feel safe and advances your care, thank them. Understand they are human too and fighting many battles too in a system that often saves lives and often does not. When they make you feel the opposite of these things, tell them.
14. Reading is an invaluable escape when ensconced in the Irish health service. Sometimes, it is not accessible due to our exhaustion or medication regime. Enter audiobooks. The saviour of the brain when energy is low. A subscription to Audible or Apple Books is a welcome friend amid the hustle and bustle of the hospital world.
15. When you are attached to an IV stand, ask the nurse to move it as close to the bed as possible so you can move freely. If the wheels drag, ask for another one. Because hospitals are so busy and so understaffed, people will often say: “There are no more.” However, somewhere, an easy wheelin’ IV stand is waiting for you. The same for a pillow shaped like a cloud and not the downtrodden pancake like the one under your head.
16. Water wipes will clean you when you can’t move. Shampoo caps require a soft massaging hand and hey presto, your hair is clean. Dry Shampoo. Lip balm.
17. Get a strong bullshit detector and use it. This is some life advice I cloned from Lou Reed and Laurie Anderson. It’s more difficult to practise when you’re sick, you’re tired and you want company. But don’t let anyone bring their bullshit into the room. This is about your recovery and nothing else. People who are not sitting in an isolated room or shared ward cannot fully comprehend your reality.
What someone brings in lingers with you because you cannot change your environment. If it is positive it will shine for hours, but negativity will hang around like the backend of Pepe Le Pew. Practise saying something like: “I’m sorry you’re going through this, I love you, but I cannot receive this today. Maybe we can talk about it another time?”
Boundaries, here, are the key. If you have the energy, listen.
18. Take a meditation course. Seriously. If you can learn how to watch your thoughts, it will change your life.
19. No mask, no meeting. Get out. Apart from Covid, there are plenty of other viruses and vagrants rumbling around. Stay protected.
20. If you are feeling helpless, aim for the future. Research suggests making a goal for the future can turn negative feelings into positive. What you’ll need is a large piece of paper or card. Create a vision board. Ask the nurse for Sellotape and tack images, pieces of text or something you have written down – like the lyrics to your favourite song – on to the board. Add to it each day. Alternatively, ask for a therapist. You’re in hospital, it’s a normal and healthy request. You deserve the best support.
21. As your future self, commit to raising funds for a charity supporting people with your illness. When we help others, something truly magic happens – the world opens up and the love we give comes back tenfold. Then, we can give more. Make magic in the world with the time that you’ve got. Be the reason someone else can smile despite their circumstances.
When you move forward, the world shifts and a major edit happens – the story continues.
22. In accompaniment to that, practise self-care. Research shows that self-care is a powerful analgesic towards improving overall wellbeing alongside scientifically proven medical care. Stretch. Move your body in any way you can. Ask friends to bring or send you face masks, cosy slippers and even framed photos of your favourite times together. Share playlists. A simple luxury such as having a replica of your favourite mug at home for your morning tea is a soothing balm and a memory of the simple pleasures of life waiting for you when you escape.
23. Stack a bunch of non-perishable food in the corner for emergencies or, as I like to call it, a normal night-time snack. Instant noodles that require just boiling water are a gnarly nosh once the ludicrous deadline for any kind of hot food passes at 5.30pm. (When will we invest in a solution to this abandonment of patients’ culinary needs in hospitals after this time? No, I don’t want toast or the same cold sandwich again, thank you. Okay, okay, I’ll have the Custard Creams.) Try flavourings you love rather than using the salt-laden noodle sachet. Your body and your medical team will thank you.
Other snacks that will save you during the 5.30pm-7am food desert include: crackers, tuna, spaghetti hoops, soda cans of your choice, corn cakes and the Philadelphia you kept from lunchtime. For some reason, the cheese of dreams is never in short supply in Irish hospitals.
24. Pick three things you are grateful for from your diary. Write three lines about each one. Now you have three stanzas. Play around with the sounds of the words and the beat of the lines to make a rhythm like in your favourite song. Congratulations, you are writing a poem. Think about the ways in which the senses allow us to experience our world. Paint a picture for the reader. Add more sensory details. Put it away.
25. With words, purpose, self-care and self-actualised structure within the chaos of a health crisis, you will have more power than you think. Everything that happens to you must be preceded by clear and constantly sought consent from you by any medical professional. Consent must be continuous and newly given within each action and the interaction within the action. It is never, ever implied. Your voice and your life matters because you are here for a reason that is yours to claim.
You own the narrative of your own story every day you are alive.
26. Write another poem.