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By Beth Dillon (she/her), Ross Tanner (he/they), and Ally Lloyd (she/her)
Hospital stays are a seemingly inevitable part of having a long term health condition, and can be difficult for lots of different reasons. There’s the isolation, stress, worry, missing out on things and the fact that you usually feel completely rubbish. We are writing this, Beth and Ally as both patients and visitors, and Ross as a visitor. Over the past year and a bit we have had seemingly our fair share of time spent at the Queen Elizabeth University Hospital (QEUH), and so these are our experiences of making it all just that little bit more manageable.
Beth
One of the things that I find really difficult about hospital stays, especially longer term stays is it's hard knowing all the stuff you are missing and coming to the realisation that things may have to change. Once I ended up in hospital for 6 weeks, right in the middle of the semester and my legs decided not to walk. This posed all sorts of questions such as ‘do I repeat the year?’, ‘Is there any accessible accommodation?’, ‘what's going to happen next?’ These things can obviously cause lots of stress and anxiety so switching off is such an important thing to do. Personally, I enjoy plugging myself into my earphones and doing something crafty such as sewing or painting, it really takes your mind off everything as it’s a very mindless task. It’s also a good thing to take up any ‘MediCinema’ offers you get. A lot of hospitals now have cinema in them and often go round the wards seeing if people want to go along. Even if you don’t fancy it, it’s a great change of scenery and quite a mindless activity that can take your mind off things, and you can always go back to your ward at any point.
I would also say it is so important to remember to let people help you! Your friends and family will want to help and support you, and let them. As people coming at this from both sides’ we both know that it is hard to believe that people genuinely do want to help and to accept it, but that when you are the friend you honestly would do whatever would be helpful. If there are things you need, like bringing new pyjamas or clean underwear then ask for them when people ask if there is anything they can do. Same with if there are errands on the outside world that you need running then ask for help! This both makes it easier to properly just switch off and focus on getting better and leaves you with less stuff that you HAVE to do when you get home. Letting people help you also means that you get a little bit more alone time. I’ve found that with my mum when she came up (as Leeds is a bit of a trek from Glasgow), after a while we ended up arguing and I found sometimes we just stressed each other out. However letting her help ( even just letting her nip home for an hour to grab some new socks) meant that we got some space, she felt like she was actually DOING something to help and it all around made it a much easier time for both of us.
Following from this is the idea of reaching out to friends! Friends often don’t know if you will want to have visitors etc, so reaching out and asking if they have any time you would love to see them can be useful. Having visitors can really help with feeling left out and cut off from the real world, as well as breaking up your days. Having someone who can just be a breath of fresh air, and have fun, funny conversations with (as well as bringing clean pyjamas!) is so lovely. Friends visiting can make things feel normal for a while and counteracts the feeling that everyone has forgotten about you. I remember a group of friends who all bobbed in after clinical skills and it was such a nice surprise to see them. Equally the regular friend visitors that you can’t thank enough as it just completely changes your mood and perspective. The period after a visitor leaves can feel hard, them going back to what they are doing, and you are still there aware of what it is you are missing out on. However, I find that the time seeing them always outweighs this.
Ross
For me, friends, especially close friends, being in hospital can be difficult. You see these amazing and wonderful people at their most vulnerable and ill. It is often quite emotionally overwhelming because all you want to do is make them better and cure what's making them feel this way, even though they may have a chronic illness. While it is not possible to cure JIA or epilepsy there are so many alternatives you can do to help manage a hospital stay and make their time in hospital a bit more bearable. Visiting them can make such a difference to their day and your mind. I would worry and worry and worry when Ally and Beth were in hospital but when i saw them we always had a lovely time which elevated their day and eased your mind. Bring snacks! It’s no secret that hospital food is GRIM and boring; bringing snacks helps bring your friends back to reality and are just super tasty. Also bring healthy snacks, hospital food often lacks vegetables (?) and bringing things like carrots and apples can help your friends feel a bit more human. Don’t get me wrong, sweet treats are always welcomed - the other day when Beth went into hospital and the paramedics were round at her flat and i was rushing around packing her a bag i immediately cut her a slice of cake and popped it in a tupperware to take with her.
an early morning visit!
Spicing up your hospital visits can also be fun for both of you. Even just things going for trips around the hospital for a cup of tea in the atrium or (I do not recommend you try this at home) push your friends down slopes in wheelchairs to add some extra fun and get that adrenaline going. When Beth was in the hospital for 6 weeks it was my birthday and we brought the party to her with cake, decorations and presents! Trying to normalise the situation is so important for long-term visits to help both sides (patient and visitor) manage it. As i mentioned earlier, it’s not nice seeing your friend in hospital, in fact, it's quite emotionally draining. Having a friend to go to the hospital with makes such a difference. I’ve been quite lucky that whenever Ally has been in hospital I've had Beth with me, and when Beth’s been there I've had Ally. This makes such a difference because you find yourself not wanting to talk about it with anyone else or having to make someone understand how you feel.
Ally
For me, I would say one of the things I find trickiest about being in hospital is switching off. It can be really hard to change your mindset when you end up in hospital unexpectedly. Having all the things you had intended to do that week that you “need” to do. Twice I’ve been in hospital just before exams and it’s been stressful to not be revising and preparing, I once asked my dad to read my notes aloud to me on the history of the Papacy, which was really wild stuff, with my history exam. However, I very quickly realised that a) I didn't really take any of this in, and b) actually you do just need to switch off. Nothing is as important as getting better and getting home, and uni or whatever it might be really can wait.
Following this switching off, often it is a weird situation where you are simultaneously exhausted and bored, too tired to really do anything but doze, but aware of wanting something to do. This is a time when, as Beth and Ross have talked about, having visitors can be so lovely, they bring in a new kind of energy and are able to really carry conversations if you’re tired. However, obviously you don't always have visitors, and especially with hospital days starting so early and finishing so late, you have those mornings and evenings of just you. Books and podcasts, which are normally a go to for me, felt like they took far too much energy. Instead I found that listening to the radio, where you make no real decisions about what you hear, listening to music, or listening to an audio version of a book you are familiar with can be nice. The QEUH can is laid out in mostly rooms of one. It can feel too quiet and lonely when you’re just in there by yourself and therefore having some background noise that you can dip in and out of can make a real difference.
I would also say that something that makes a real difference to how you feel is doing the things that make YOU feel like YOU. I found that on top of feeling grim just from tiredness and post seizure-ness, you can start to feel unclean quickly - you spend a lot of time in bed and I needed help showering and there wasn’t always someone to help. It always surprises me just how much the little things make a difference, and it’s also something that you can do just you, or that your friends do with visits. Things like face wash, dry shampoo, and baby wipes can make a difference without taking too much energy, and if you feel up to it on these low energy days, getting dressed for during the day can also make such a difference. These are all things that you can ask friends to pick up for you. On days when I was better and had more energy, i remember doing things like (when I was finally allowed) having a shower by myself, and putting music on and washing my hair and being in there for ages just taking the time to enjoy it, and I came out feeling so much more like me. Even things like one-time Beth was desperate to shave her legs so we escaped to the disabled loos downstairs to do a quick leg shave! Even just last week when Beth was in, we turned the bathroom into a “spa” and did facemasks and listened to music, just bringing that little normal to a rubbish situation. These things can add up to making you feel that little bit more human.
Lastly, I would say remember that it isn’t a case that you go home, and everything is completely back to normal. I read somewhere that for every day spent in hospital, it takes three to recover from it, because it is truly exhausting! The temptation is to get out and want to dive into all the things you’ve been wanting to do and thinking about doing when inpatient, but you probably won’t have the energy for this and actually taking a bit of time from actually being in hospital before building up to all the things you have been wanting to do. It always surprises me how much energy having a shower or cooking for yourself takes, when you have been having help with all these things. For Beth it was tricky going home after 6 weeks in hospital. After being on a ward where there were literally always people about and a real structure to every day with meals at certain times it was a shock to adjust back to reality and independent living. Again though, it does just take time, and friends and family are always there to support you.
(13/3/2020)