People will probably assume that after numerous hospital stays of a range of lengths that by now I will have learnt what its like once you are discharged and thrown back into the realms of reality.
By the end of January this year, I had already lost a month to the hospital. In the midst of this time I missed my mums birthday and subsequently the trip to the theatre which was my present to her and I was unable to play in the hockey matches with my team despite seeing the reams of text messages between the team organising the days events. Admittedly, this time I didn’t seem to miss out on too much but in the past few years I have missed out on holidays, birthdays including my own and my sisters prom. Oh, and did I mention that I am try to hold down a full time job?
Apart from my most recent stay its been quite a while since I’ve had any long hospital stays, it doesn’t take the sting of realising those are days I will never get back. I have got better at coping with these stressful and draining situations, but regardless, bouncing back is and always will be a challenge.
We all lose time — and lets face it most of us would be lying if we said we hadn’t lost time because of that night out where we said we would only have one drink and then it turns into one after the other. I certainly have and most of these have hockey in some way to blame!! While I’m happy to be home, it’s not all rainbows and unicorns. I think it’s important to highlight that once someone is out of the hospital, that doesn’t make them instantly well. It just makes them stable enough to go home. I’m still recovering, with a way to go, but continuing to come on in leaps and bounds – even if I cannot physically leap nor bound but we get the picture. On top of this I’m also recovering from a great deal of sleep deprivation because the hospital world does not sleep and having old ladies being convinced they are in a World War 2 war battle equally doesn’t help.
I’ve been out for exactly a week now. Simple things like showering and doing my hair are completely exhausting. Showers are like a race to get out, rather than a time of relaxation. There have been times when I’ll get out of the shower only to lie straight down on my bed to recover for a few minutes. Some would say to go and have a relaxing bath – but with my body, which overheats far too easily, they never last more than a few minutes and are more hassle than they are worth! One thing I will stay is never take for granted those things you may find easy.
One of the main things I want to get across is the emotional impact being in hospital and coming home has on you and your mental health and how little awareness an acute hospital seems to have on this. When you are in hospital you are in this ‘bubble’ and at times this is actually quite nice. You can easily forget about the world around you and focus just on what is going on in the four walls you look at day in and day out. However, the ironic thing is that you don’t even really have to think apart from when you need to go to the toilet!! Your food is ordered the day before and comes straight to you in bed, your medication is sorted out and given at the correct times, your belongings are all in a cupboard within easy reach, you are told when is convenient for you to go to wash/shower and have your bed made for you each day and you even have a call bell if you want any other assistance. This may sound lovely to some people but it makes being at home for the first few days so much harder. The day after I was discharged from hospital I could not speak to anyone for more than a few words without starting to cry uncontrollably. I couldn’t pinpoint exactly why apart from an overwhelming feeling of hate towards my body. It puts you in emotional turmoil and you wonder if you are going to feel like this forever. Of course this isn’t the case but at the time this feels really real. You are very vulnerable whilst in hospital. I was on so many different drugs that I don’t remember the first two weeks of my last stay and I don’t know about you but that is a terrifying prospect. I had to re-watch films I had already supposedly watched and goodness knows what I may have said. These are all things you dwell on once you are home. As a usually very independent person I now have to rely on someone every time I want to leave the house and even in the beginning when I had to crawl up the stairs like a toddler! You get frustrated more easily at simple tasks which would have been done for you in hospital. This doesn’t make you lazy but being at home you also begin to believe that you are ‘better’.
I don’t know that hospital life (as I’ll refer to it for those who have experienced it) is ever fully understandable to those who haven’t lived through it. How could it be? At the same time, I don’t want people to understand it because that means they’ve experienced it themselves, and I wouldn’t wish that on anyone. It takes a great deal of vulnerability to allow someone to see you at your worst, and I try to protect my loved ones as much as I can. My closest friends and family realise I won’t have my usual energy and am probably more emotional and short tempered than usual. It still makes me wish that I had superhero healing powers so I don’t have to see the pain in their eyes when they see me this ill.
Surprisingly, people always tell you how good you look after you’ve been hospitalised and this always amuses me. I’ve got quite good at “looking healthy” make-up for someone who doesn’t usually wear much. Sometimes I’ll spend the extra energy in hopes I can trick myself into feeling better through looking better. Basically for all of you who tell me how good I look whilst I am in hospital or shortly after should have been taught as a child that lying is wrong. – It’s not as if I have ever told others that I am in fact 5’3 and can run a 10km in less than an hour!!
What can you do if your friend or family member is unwell? First, message them to see how they are feeling. Nothing is worse when you’re already isolated in hospital and it feels like everyone has disappeared. Often, I don’t have enough energy to talk on the phone but text messages mean a lot and makes you feel that you haven’t been forgotten.
When the person you know gets out of the hospital, don’t expect a lot from them. The huge pressure to bounce straight back to ‘normal’ (whatever even is normal???) isn’t only a personal battle, but can feel like an even greater life battle when others have expectations for you. It’s generally not possible to immediately go back to how life was prior to being ill regardless of how bad your illness or injury was. People offering to take you out, even if just for a drive, or just coming over for 10 minutes after a hockey training session means a lot. I mean even sending sloth pictures, funny videos and playlists isn’t going to do any harm is it?
I would be lying if I said anyone with a chronic illness doesn’t hate that their body falls apart the way it does. Even worse is not being able to predict when this is going to happen. I love my usual determination and motivation to not let this overcome me and I enjoy having challenges. 2017 is set to be an exciting one with several changes. Career wise I am hoping to go back to uni, hopefully my ever growing bond with my family will continue and i am set to raise more money for a charity close to my heart when I run the Brigton Bright10 for the Stroke Association in October. The struggle isn’t over when the hospital stay is complete, but realising this is the first step in moving forward.