Yesterday, I decided to type ‘tube feeding at Christmas’ into google. NOTHING of relevance came up. There are thousands of people from all over the world who are tube fed. So I have decided to write this so that hopefully anyone who was looking for advice as I was, will have something to read.
My Christmas 2016 tips:
- Use self-seal envelopes – Imagine not having anything other than mouthwash and toothpaste in your mouth for nearly a year and a half. The slightest taste is amplified hugely. AVOID envelopes you need lick – yuck! I remember hating the taste even when I could eat, so it was a bit of a shock to the system when I came to write them this year. I presume it’s the same for stamps, if stamps that you need to lick still exist…
- An alternative advent calendar – This year my grandparents gave me a bit of money and told me to just “spend it on something that I’ll enjoy”. I got an ASOS one, every day I open a little window and get a beauty product – I’ve had facial washes, scrubs, liquid lipsticks, a powder – loads of different things. It’s really distracted me from the fact that everyone else is stuffing their faces with chocolate.
- Advent calendars of the rest of the family moved out of group areas – this has helped me quite a lot to forget that everyone else is getting chocolate. My brother now has his in his bedroom (dangerous, but when it’s gone it’s gone) and my mum has hers on the back of a cupboard door. Taking these very obvious reminders away from the kitchen/ living room has resulted in these areas feeling much more like mutual territory.
- Festive candles – Much to the dismay of my firefighter father I have a Yankee Christmas candle that I got as a bargain from TK Maxx. I managed to find one that I find pleasant even when horrendous nausea has taken hold. It smells like log fires and Christmas pudding.
- Distract yourself – I mainly do this so that the people eating around me feel better about the situation, especially because this is still a relatively new concept for my family. This will only be my second year not having a Christmas dinner. Last year I went upstairs to bed while my family were eating on Christmas and boxing day, but I was very poorly. I’m hoping that this year I will feel okay enough to hang around while they are eating. This is our new normal! I totally understand wanting to remove yourself from that situation though, I just feel like it’s such an integral part of the day that I want to assert myself within it – yes I don’t eat but I still want to sit around with my family. I always have something to do while people are eating around me. It’s still a relatively new concept for my extended family so I try to act distracted (usually on my phone, adult colouring in or this year I will be reading a comic book called “Fight the Power” by Sean Michael Wilson and Benjamin Dickson).
Try to enjoy Christmas. It’s hard to be yearning for the past while feeling poorly. Last year was my first dinnerless Christmas and I have to tell you it was HARD. At the end of the day though I spent time with the people I love and got some really nice memories from it. Try and have a very Happy Christmas.
In other life stuff I met up with an amazing friend on Friday – I haven’t seen her for ages and we just sat and talked nonstop about life for over two and a half hours. We went to a nice and relaxed bar where it wasn’t a problem that I wasn’t buying drinks. I think they just thought I was a tight student – fine by me!
Mum and I decided to go and ‘do culture’ and saw The Nutcracker at The Dukes in Lancaster. It was a beautiful Russian Ballet. Neither mum or I knew the story of The Nutcracker beforehand (hence the need to ‘do culture’). I googled it in the interval and SPOLIERS it’s about a girl who gets a toy, sneaks down and sleeps next to toy, has a wonderful dream with toy, and then wakes up. I don’t know what we were thinking – I presumed that because we were at a ballet it would be something more complex than that… Obviously not. We really enjoyed it though, it was magical.
Poetry wise it was the final Dove Cottage Young Poet session of the year and we received our Bronze arts awards. I cherish moments of achievement like that. It makes me reflective and remember all of the obstacles I had overcome to do these things. With careful planning things CAN happen and I can succeed.
In rather exciting news I talked to a lady last night via. a forum who has a son who has my exact diagnosis! Finally, through all of the posting, searching and googling I have found someone. To be honest I think she was as relieved as I was. It’s definitely a small world on occasion, but when you are trying to find something this rare the world becomes a huge place.
Poetry wise I don’t really have anything to report. There seem to be a lot of opportunities that close in Jan/ Feb time so I’m busy preparing my work.
I’m extremely excited about Christmas and ready for whatever 2017 may throw at me. See you all then !