When I was first admitted to Addenbrooke’s I was placed on a neurology ward. It was a huge ward of 8 beds with another ward of the same size on the opposite side of the corridor. It was so busy and noisy, day and night, but luckily I only stayed there for the first night before being moved to the cardiology ward to have my heart monitored.
In comparison, ward K3 was a dream. I was in a much smaller bay of 4 beds and a bathroom. The ward itself was quieter and calmer. Admittedly the view wasn’t as good (a stainless steel pipe through one window and a brick wall through the other) but you can’t have everything. Plus it took a while for my neck pain to fade so I wasn’t fussed about creaking my neck to gaze longingly out the window.
The other ladies on my ward were lovely. All awaiting further investigations into heart issues, potentially awaiting surgery, and being treated in collaboration with the ‘New Papworth’ hospital that has recently moved to the Addenbrooke’s site. In their 70s and 80s they looked after me so well.
When I arrived on the ward I still couldn’t walk and I hadn’t regained full mobility in my arms, legs and back so I was in a pretty bad way. I had also just had the first hit of steroids so I probably looked quite rough and was acting a bit loopy. They were quite concerned by all accounts. My first night was not great at all and I didn’t get a second of sleep thanks to the steroids. By the morning my tummy had completely inflated, I kept passing out from low blood pressure, I was being constantly sick, and because my kidney function had dropped I had water retention all over my body. To top it off it was 30 degrees outside, we had no aircon and the steroids has caused what can only be described as an 8 hour hot flush. Waiting until 11am to see Henry and Mum felt like a lifetime and I spent the whole morning in a state of steroid-induced hysterical sobbing. My amazing nurse Frankie and the only one of us on the ward that could walk, Pamela, sat on my bed comforting me and dabbing my face with a cold flannel until they arrived.
Gradually things started to improve and we even started to have a bit of fun. Our ward was full of laughter and we were always the last to turn our lights off at night. Evenings mostly comprised of tea & biscuits and them offering marriage advice. (Apparently the trick is to NEVER go to sleep on an argument – which seemed doable because the chances of me ever sleeping again felt pretty slim at that point!) We got to know each other’s families and friends and we helped each other out. One lady, Iris, was moved to another ward in the middle of the night as she prepared to go home and her neice still popped in to see us. Mum bought the newspapers and Henry was roped in to help with charging phones and changing ring tones.
Daily life from a hospital bed is so incredibly boring, especially when walking is a struggle for someone who usually can’t sit still. I was so lucky that I had visitors every day, as well as the dream team who were by my side for as long as they were allowed. A big shout out to everyone who came to sit with me, even when I was terrible company and kept falling asleep mid sentence! Some people don’t have anyone at all, and for them hospital is even harder.
Hospital food and drink is truly awful and I really couldn’t eat a thing. At first I had no appetite at all but it gradually picked up. I just craved fresh fruit and veggies. My wonderful mum came every morning armed with freshly made pasta or grains, fruit, roasted vegetables and crackers. For some unknown reason I constantly craved Twiglets and orange juice so my in-laws kept me well-stocked on that front. I did have marmite on toast religiously for breakfast, brought to me by the same lady at 8.30 every morning. One morning she gave me some toast from the trolley and then went away. A few minutes later she returned and took the toast from my plate and swapped it. ‘Oh no, you already gave me some toast’ I said. ‘I’ll give you the hot stuff. I’ve only got the men left so they can have the cold toast’ she replied. Not that I would wish cold toast on men (there was enough hot toast for us all really) but the smallest acts of kindness make such a difference when you’re in hospital.
The nurses on ward K3 are truly amazing. Completely run off their feet, they never made me feel like I couldn’t ask for something. My main nurse, Daisy, was brilliant. Because I wasn’t sleeping I was prescribed sleeping pills but I’d never taken one before so was terrified. I made her promise she would check on me in the night to make sure I was still breathing. She duly did and even lifted under my eye mask to check I was OK! We had a laugh and a joke about everything, including the horrendous injection you have to have in your tummy at 6pm every day to prevent deep-vein thrombosis. Because it bruises really badly you can make it into a pattern so we joked it was like a free tattoo. I now sport a dotty wave across my abdomen – watch this trend for 2020! It makes such a difference to your recovery when the people who care for you are kind and happy. I honestly can’t thank them enough.
Although hospital is horrible, and I would never wish it on anyone, it never ceases to amaze me how strangers can come together to find laughter and friendship in the toughest of times. As well as teaching me about Lupus, my time in hospital has taught me that with positivity and community we can all empower each other to find a strength we never knew we had.
Livin' La Vida Lupus 