Day 6 - Scented candles and long-distance walks
My name is Janet and I work as a clinical researcher - I’ve started my story here as somehow this part of my identity becomes consumed by my illness.
People used to ask about my work but now they enquire about my health. The need for artificial nutrition makes my illness transparent. Anyone who spends any length of time with me, even casual work acquaintances, quickly becomes aware of my disability.
I was always fit and healthy. I enjoyed long distance walks with my husband or with friends. In 2008 I walked 192 miles from St Bees on the west coast of England to Robin Hoods Bay on the east coast. My dream was to complete further long-distance trials and maybe even walk from end to end of the country.
However, my life was turned upside down in early 2010. I suddenly became unwell and started to choke on food. After seeing numerous consultants, in several different hospitals, and having many unpleasant investigations, I was finally diagnosed with gut dysmotility. Initially I was advised to eat only puréed food, but eventually needed a gastrostomy in 2016. This bypassed the need to use my oesophagus, which had poor peristalsis. This worked well to start with but over time the gastrostomy feeds started to cause severe nausea. The feeds were simply sitting in my stomach and not moving. The feeds were gradually slowed down to accommodate this, lengthening from one-and-a-half hour feeds to 10-hour feeds. These feeds had to be provided during the day, due to the risk of backflow overnight into my oesophagus. I felt permanently attached to the pump, and unfortunately the nausea continued whilst my weight declined. The decision was taken in January 2019 to insert a Hickman Line and I’ve been on Total Parenteral Nutrition (TPN) ever since. I still have the gastrostomy for liquids and my medication, but all my nutrition is provided by TPN. This is provided five times a week between 14-18 hours, but much of its overnight, giving me greater freedom during the day.
My greatest challenge is the need to abstain from eating. Although I’ve not eaten for several years the smell of food still triggers cravings. It is difficult at home as my husband Gavin obviously needs to cook and eat. We use scented candles, lit whilst he cooks; my favourite is vanilla and honey. He never eats in the same room as me. I feel he has been exiled to the kitchen, whilst I lounge comfortably in the front room!
Refraining from eating also impacts on my social and work life. I’m fortunate that I can still drink small amounts so meet friends for the occasional coffee. However, none of them will eat the tantalising cakes and biscuits on display. They feel uncomfortable consuming such delights in front of me, despite regular protestations that I’m okay with this. Work is similarly challenging. There are numerous social events organised through work, but all revolve around food and alcohol. Neither of which I can consume. I’m therefore excluded as I have never overcome the challenge of dealing with the smell of cooked food.
Based on my experience, there is one thing I would like to say to healthcare professionals, and that is to remember that food does not simply sustain you. Life revolves around food and drink and thus abstinence has huge social and psychological implications. It is helpful to be prepared for this.
I have found that substituting the act of eating with another activity is helpful. I miss the evening meal with Gavin more than any other food-related activity. This is an activity most couples take for granted. It is a time used to chat and catch up about each other’s respective day. Strangely lockdown provided the substitution. Something positive came out of a negative. We began to complete a daily walk together in the early evening, as Gavin was not at work. We use the time walking as an opportunity to catch up on our day. Gavin then helps with my TPN connection, providing further time together.
Our daily walks have galvanised me to build up my stamina to complete longer walks. I have been inspired by others in the artificial nutrition community, who have completed marathons and long-distance trials, whilst on enteral or parenteral nutrition. Who knows perhaps one day I will complete the end to end walk!
I'm Gavin - Janet's husband, a sculptor and motorsport marshal. We got together at school and have travelled together ever since. I have been trained to connect and disconnect Janet's TPN feeds and change the sticker that holds the pipework in place. I try not to look scared as I do it. The nurses that trained me looked with horror at my hands after a day in my studio cutting and welding scrap metal but did agree most of the grime was staining my hand and that my aseptic technique was quite good.
Not having a 'proper' job has one major drawback as at the end of the month I don't get paid. However, the freedom is great. I can move my working hours about to help Janet where I can. I can be away at a show for three, four, five - even six days at a time, but that tends to be less than once a month. Most of the time I am 20 minutes away. (Add another five for hand washing before I can leave).
I enjoy the time Janet and I spend together. We can't do meals out or parties, but we can go walking. Lockdown meant I lost a stone! Pre-lockdown we had weekly trips to the cinema – whatever was on. We holiday in the UK, but I've not seen it all yet, and who wants to queue in an airport?
I find that I tend to eat and drink whenever I want, and I forget to offer that to company. I eat all my meals standing in the kitchen because that works for Janet. I've never really cared about cooking for me, so a microwave meal eaten from the container and no washing up seems like a win. Unlike Janet, I don't have to carry 2.2 litres of dinner around for the evening.
I'm a passenger on this train. Things happen to Janet and I go along for the ride, and to offer support. Last time the ambulance crew were nice but refused to blue light us as it wasn't required. So disappointing! I wander between blissful ignorance and blind terror. But I am there to help.
Janet and Gavin