Day 7- BONUS - Life is an adventure

Hi, I’m Clare, I’m 45 and I’m a student nurse.

It started with vomiting in early November 2017 and that’s the last time I successfully ate or drank something. Since then I’ve been prodded and poked by several different hospitals and they have found that I have had a virus that has damaged my vagus nerve resulting in no peristalsis. I have been enterally fed via a nasojejunal (NJ) since April 2018 and currently waiting for a percutaneous endoscopic jejunostomy (PEJ) as the damage is too severe to do anything with and no patient wants their nurse to look as if they have more health issues than them!

I think I have coped very well with this life change, I made my peace with it quite early on. It is perhaps easier for me than my family and friends to accept as I can feel that nothing inside me works. I look at the positives; I don’t vomit constantly anymore, I’ve lost a lot of weight, I will never be overweight again and I am a cheap date!
 
So, what do you do when you become nil by mouth in the middle of a full-time degree? Well, I decided to not let it stop a thing. I took no time off apart from when I had my first tube fitted and that was only because of the worry over refeeding syndrome – which I didn’t get! I’ve continued to work my placements, my patients have been inquisitive or completely ignored the tube and to those who asked questions I was quite happy to explain why I had it. Those that ignored it I equally respected. The staff I have worked with have been accepting and supportive and I think surprised that I have carried on.
 
Then at the end of my second year, I planned my trip to India. My university and local hospital have links to a charity in southern India, the Rural Development Trust, Vincent Ferrer in Anantapur that runs a hospital and several community projects. The university was concerned about me going as were my medical team to begin with, but I refused to allow my condition to stop me from having this or any other experience. I feel good thanks to the antiviral medication and feeding tubes and pumps are part of my professional and now personal life anyway.
 
I am so pleased that I pushed to go, it has been the most valuable and rewarding experience of my life. I have worked for the NHS for 26 years and thought I had seen it all. I had not. This charity provides healthcare for the poorest Indian communities at a fraction of the cost. Their ways may be different from our own, but they get there in the end. The staff were welcoming and open to showing us their ways; the patients and their families made us feel like royalty and were so pleased to see us.
 
The charity housed and fed us (the other 5 students I went with) and organised a timetable to allow us to spend time in all the departments of the hospital as well as taking us to the government hospitals and charity projects within the local community. I’m so glad I went. It was so humbling.
 
The travelling was interesting; being attached to a 5kg backpack full of liquid was always going to be challenging so security checks at four airports were amusing, scary and frustrating mainly in that order. I had all my medical letters and fit to fly forms, but they didn’t always help. Getting out of India proved the toughest as they wanted a letter about the operation I had had and a certificate for my oxygen! It took a while for them to understand I didn’t have either! Oman security was a bit tricky when they patted me down and thought I was hiding something under my breasts. I had to remove my clothes to show them my ribs! I couldn’t be too angry though as it’s the first time they’ve been visible in years!!
 
If there is one thing I can take from this experience it is that even though we haven’t chosen to live life this way, it doesn’t have to stop us having any experiences that we wish to have. Yes, it is a bit harder to plan, yes, we need that extra bit of luggage and yes, it can be frustrating, but we can do it and we should do it. Life is very much an adventure and there are so many experiences to have - be brave and find a way to do it. You won’t regret it once.

HAN Week

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