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 !
I’m writing this in a lovely warm office, without a blanket or coat on. That might sound a bit odd, but my POTs syndrome makes me absolutely freezing. I’ve invested in an electric blanket for my bed and a really efficient heater for my office – it been absolute bliss. I’m just hoping the electric bill won’t notice much…
On the back of my last few blog posts I have had quite a few people ask me how I stay so positive. I’ll admit some days are extremely tough to stay above it all, not fall into the pit. To be honest, I just feel lucky to be alive. I’m not being melodramatic here either – my condition has limited treatment options – but these treatments exist and can help. The idea of the type of tube I have is a very new one (that it does not actually puncture my bowel, where I am being fed). One of my therapies which I do daily came on to the market only a few years ago, this therapy as prevented me from having to go through some serious and risk heavy operations.
I have been told that at the present moment there is nothing more either of my consultants can do for me, which I can assure you was one of the hardest things I have ever heard in my life. It is okay to cry and feel other emotions – its human, just as long as the crying stops and you can slowly try and put the smashed pot back together. I have not lost hope in the slightest, I trust that where there is research (although limited) new things will be developed. I stay positive because I have incredible family, who always know what to do when I’m feeling down. One recent example of this would be my parents – they came in to my room and attempted to do the mannequin challenge (funnier than it sounds). Another way that I stay positive, despite having to spend so much time in bed, is having my family come up and chat to me, sitting on my little sofa in my room and telling me about their day. Equally, I’m not afraid to retreat off somewhere quiet and wait out feeling sad. For me, a little bit is okay. I just can’t spend too long in there.
Last week a magazine dropped on to my doormat. It’s called PINNT magazine – it’s for people who are tube fed like me, or who are fed intravenously (through their veins). I wrote an article for them a while ago, but wasn’t expecting it to make an appearance until early 2017 – but here it is! I wrote about how incredibly thankful I am to the NHS for saving my life, and continuing to keep me alive. The media is so focused on the negatives of the NHS that people may be led to believe it’s all doom and gloom, and I am not denying that services are incredibly over stretched – but they are saving countless lives every single day.
I went to Brewery Poets for the third time on Friday. I was absolutely shattered, could barely keep my eyes open – not because of the company I hasten to add – I just been having very rough nights. I loved the variety of poems that we read. It really broadens my horizons, some of the poems are from genres that I wouldn’t usually read but would now look in to. There is nothing more helpful than feedback from a group of people whose opinion you value.
I had my first proper day back at school yesterday – well, three quarter day, and it was great. I love my house, don’t get me wrong, but after so many weeks it is so nice to be in another environment! I relish the challenge of school – sometimes I sit there in brain fog, but thanks to all the support I get sometimes little snippets sink in.
I went back to school yesterday (huzzah!) for half a day. Even though I sat in silence by myself in the library for virtually all of that time it was very refreshing to be around people again. School is good for making you feel like you’re doing stuff. I have a terrible memory and so have to keep a rolling to do list otherwise I’d just sit writing poetry all day and not getting anything done. School is good if you’re a to do list person like me. You go from task to task and tick to tick.
Since leaving hospital I’ve had an NG tube (a tube taped to my cheek that goes down into the stomach) taped to my face for the majority of the time to help me keep on top of my nausea. I needed to keep it in for school really, but I got scared by the stares I have been shrugging off all week. There’s something quite haunting about a stare or awkward glance from a friend. It’s like they’ve seen you in a very different way. In the last few weeks I have learned that people can cope with a wheelchair or a visible tube (I have tubes all the time, they are just usually hidden), but not both at the same time. A mixture of the two seems to create a glitch in some people’s faces and makes them a bit twitchy and strange around you.
I’ve just finished reading a poetry book called “Teaching my mother how to give birth”, and I cannot recommend it enough, it’s incredible. I finally gave in and bought it after seeing it on my friend Katie’s twitter – who coincidentally writes an awesome blog you should definitely go and read the teabreakproject.com . The poetry collection concerned writes about issues which are really important in this world right now – one being the proper definition of an asylum seeker. It was one of those books which picks you up and drops you facing another landscape of ideas and thoughts you’d never even considered. It’s lingered after I finished it like the smell of baking in the house, which is always the sign of an amazing set of poems.
Finally, I’m going to give an update on my feeling of being very alone and isolated with my illness. On the back of my blog post “Me. Intestinal failure and POTs” I found a Facebook group and related charity called Gift (Gastroparesis and Intestinal Failure Trust) UK. The Facebook group is closed and such a safe space for its users. You can ask about what symptoms others are experiencing, what a certain treatment/ operation is like and where the best places to be referred to are. The amount of posts on that group that echo my experiences has made me feel a part of a huge community. We are doing a Christmas card swap this year, so I have written and sent twenty three cards to people like me! I feel connected to the people sat behind those phones, tablet and laptop screens which is very unexpected. Thank you to everyone who shared that post. It could have been your share that led me to this organisation and wonderful group of people – you may well have changed my life!