Day 1 - A life re-arranged

I live with dysmotility secondary to Ehlers-Danlos syndrome and have been on artificial nutrition since Christmas 2018. As I’m unable to get enough nutrition through jejunal feeding, I’ve also been on supplementary Total Parenteral Nutrition (TPN), since April 2019.

I work part time as a computational scientist in the defence industry, a job I’ve had since 2003. I noticed before I started TPN that my brain just wasn’t working properly; I couldn’t concentrate on reading a magazine, let alone do the complex problem solving required for my job.
My employer has been great at enabling me to do a slow phased return as I learn to balance feeding with work. A phased return really is essential after time off sick, especially after long periods in hospital. For the first few weeks all I did was get myself to work, get my IT sorted and start working my way through all the hundreds of emails in my inbox.
I have noticed that shielding during the pandemic and working from home has made my feeding routine easier to manage. I can sit and do my flushes and drugs whilst I catch up on my e-mails, or some work I can do with one hand, rather than trying to get up even earlier so I can get out of the house and into the office. I can also leave my TPN to run later so I’m not dealing with it at the same time as trying to sort my enteral feed out. When I was in the office, I would sometimes feel self-conscious if I needed to swap my feed to a water flush mid meeting, I do wish the start and end beeps could be made much quieter on the pumps! I look forward to eventually being back in the office and the social contact, but I’ll be looking at my routine to see what I can change to continue to make things a little easier.
Alongside my scientist role, I’m also a union rep specialising in equality issues with an interest in those that affect disabled people in the workplace. My work as a union rep is both within my own workplace and nationally, so I usually travel approximately once a month to attend meetings and conferences within the UK. Most of these are overnight trips so I can move my nights off TPN to those and then I only have to deal with enteral feeding whilst I’m away. I find making lists helps to reassure me that I’ve not forgotten anything, plus taking a few spares (although not too many). I did manage one longer trip where I had to take one bag of TPN with me. I’d stayed at the hotel numerous times in the past and they were really understanding of the importance of keeping the bag cold. It did confuse the waitress one night when she asked me if I wanted the bag from the fridge, not realising it wasn’t actual food and I was already connected to it!
I horse ride with the Riding for Disabled Association (RDA) and really missed it when I had to take a break due to my health and am again missing it now during shielding. Once I’d been on TPN for a few months I returned to riding and we built up my lesson time slowly until I was back to doing a whole lesson. I was very much looking forward to competing again this year, but sadly, as with most things, it’s all been cancelled (see photo from a previous year).
My husband and I are keen gardeners (well we try) and last year we took on an allotment. I assist with the little jobs I can do, and he does everything else. Even though I can’t eat the fruit and vegetables we produce, it’s still very satisfying looking after the plants from seeds to harvest. This year we’ve had to turn our garden into a mini allotment but it’s still nice to get outdoors and have a break from work and being in the house. One of the first day trips out after I was discharged from hospital on TPN was to RHS Wiseley (see photo) and we’ve booked to visit again in a few weeks’ time as shielding restrictions are lifted. Usually, we’re also regular attendees at Twickenham for international rugby matches and we look forward to returning sometime next year (other photo). I find my PINNT tag really helps with going through the security at large matches. I’ve never had someone question my feed bags and ancillaries, but the tag helps to reduce explanation and gives you that bit of extra confidence. As with overnight trips away, I find lists are helpful to reassure me that I’ve not forgotten anything. If there’s a bit of a drive to get somewhere, I’ll do my morning flushes and drugs in the van on the way and give myself a bit more time in bed.
My husband is a huge help; he and I share the responsibility of connecting and disconnecting my TPN. If you have someone you can trust who can assist when you’re feeling rubbish and/or if, like me, you have problems with your hands, I recommend it. Dealing with enteral and/or parenteral feeding can take up a lot of your time and at times feel a bit relentless. I still have unpleasant symptoms that need managing but, on the upside, I’m back at work, full of energy and back horse riding and living life again.

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