My Experience of Hospital Stays

Hello again! Today I thought I’d talk to you about my personal experience of hospital admissions. This is something that I’ve had very mixed experiences with. Most of my inpatient stays in hospital have been planned rather than me having to be admitted suddenly or taken in an ambulance as the result of my seizures. This is because, for the most part, my seizures are manageable, especially with a nurse mum! Hospital has always been a last resort for us because my mum can handle pretty much anything! Other than a couple of occasions within the past three years, all my most intense hospital stays were as a baby or toddler, either pre-diagnosis or newly diagnosed and I think this has somewhat shaped my views on hospitals.

The majority of my time spent in hospital was planned tests and scans. Most of these were outpatient and I didn’t have to stay in, but when I did have to stay, it tended to be EEG video telemetry. EEG video telemetry is when electrodes are glued to your head to record what’s going on in your brain, meanwhile simultaneously you are being videoed to see if they can match what is going on in your brain to what your body is doing. This helps them identify where in the brain the source of seizure activity might be. Except, because they want to see seizures while you are wired up, the hospital can sometimes take the decision to take you off medication. This means telemetry can be difficult emotionally because while it is planned and you have the time to mentally and emotionally prepare for it, you never know how your body is going to react to being taken off medication. I also tended to find it stressful and that became a vicious cycle. The more stressed I was the more seizure activity there was, and the more aware of how much seizure activity there was going on in my body, the more stressed I became, the more seizure activity there actually was. This vicious cycle is not helped by a severe lack of anything to do!

Anyone who knows me when I’m twitchy knows that I am a big believer in distraction therapy. The less I know I’m twitching, the less I will twitch. However, when someone puts me in a room with nowhere to go and tells me I have to stay in the hospital bed that very much limits the amount a person is able to distract themselves from reality. Books were out of the picture because if I twitch, I’ll likely drop the whole book, but I’ll definitely lose my place. Eventually, you get fed up with dropping your cards on the floor in a game of rummy and that pretty much only leaves TV or films which is doable but only with a piece of tech that’s a bit more breakable and expensive to replace than a book or pack of cards. Taking things to distract you is so important as it can make your experience that much better. One of my favourite telemetry memories is when I was starting to feel a little bit better and Michael (shameless excuse to say go check out that video!) along with one of my oldest friend's, who's been helping me with my seizures since before I can remember, came and just spent the afternoon with me, and we spent the afternoon chatting and playing card games. Having people who are able and willing to come and spend time with you not only is really encouraging and you feel less alone but I also found seizure activity wasn't as bad. My family was amazing at this. They would work out who was going to come and spend time with me on what days so that I had people around me to look after me as well as distract me.  

I have also had amazing nurses during my stays. When I was having telemetry on my 15th birthday, they helped me celebrate. I still have the presents they gave me. They made a rubbish day a bit more bearable. I also found my inspiration for being a nurse whilst I was in hospital. One night I was particularly distressed by my seizures and the nurse looking after me helped me through a really difficult time. She made something that I was really upset by, just that little bit easier. I decided I wanted to be able to be that person for other people.

I have had a couple of difficult admissions to hospital to do with my Epilepsy within the past three years that were really distressing. I really struggled with those but my family was amazing. Michael stayed and slept in a chair during the most recent one so I didn't have to be left by myself. The feeling of anxiety, of fear when I was left alone to cope with my seizures by myself was overwhelming. Having someone by my side made that so much easier, and kind nurses letting Michael stay, even though I was considered an adult did a lot for me. Having good communication with nurses about what I needed really helped make the hospital stays much easier to endure. As long as I was clear with what I needed and that having dealt with my seizures for so long, I really did know the boundaries of my Epilepsy, they were happy to help me manage my seizures however they could. This was also the hospital stay where me and Michael watched our way through the 5ish hour BBC version of Pride and Prejudice which did a lot, going back to my theory of distraction. Whilst I think distraction therapy has been extremely effective in hospital, it's something I've found really helpful just in life as well. I know it won't work for everyone or all the time, but sometimes it just makes things a little bit more bearable.

I've started a pattern throughout my blogs of finishing by talking about ways that my faith has encouraged me through the topic at hand so I'm going to follow that pattern. I have two things that have always been huge encouragers during any hospital admission. One is the knowledge that God goes with me wherever I go. I remember probably the worst I've ever felt in hospital, was really late at night. Seizure activity was crazy and I was really distressed and could not stop crying. My mum started singing Psalm 23 to me and as I joined in, I realised I had been forgetting one of the most important truths the Bible has to offer; God does not leave us if we trust in him. He goes with us wherever we go, no matter what we face. I don't think the thought process was quite that coherent, but I remember joining in and really meaning what I was singing. Things stopped seeming quite so bad. Me and my mum carried on singing hymns until I had properly calmed down and even after. I think what happened was I stopped focusing on me and how I couldn't cope, because I couldn't. But I realised God could and he was with me wherever I went and that included going with me into Royal Derby Hospital.

Another is prayer and the people around me. Being able to pray when I'm feeling good in hospital and be grateful, as well as being able to break down when I'm feeling rubbish is something indescribable. Knowing that it is not just me praying as well, but that I have friends, family and my church family who pray for me gives me immense encouragement because I know that God is a God who hears prayer. And that's incredible to know.

 

Psalm 23:4- Even though I walk through the valley of the shadow of death, I will fear no evil for you are with me; your rod and your staff they comfort me.