This week has certainly been eventful! Five appointments consisting of: one visit to Kendal PCAS (Primary Care Assessment service), one GP visit, one community nurse visit, one Multi- Disciplinary meeting and one gastroenterology appointment. I went back to school yesterday after Christmas – that’s how many days off I’ve had to have. I’m feeling back to my usual self – my abscess has gone down considerably and my virus has gone.

I’ve just finished listening to “Let them eat Chaos” by Kate Tempest. I bought the book and then listened to the recording of it on Spotify. It was an all encompassing experience. I’d recommend setting aside 50 minutes that you know you aren’t going to be disturbed in, plugging in some decent headphones and turning the volume up just loud enough so that you can’t hear what is going on around you. Wow. Stick with the first poem (I wasn’t overly keen) because the following sequence is worth it. I rarely read sequences, I often find them a bit disconnected from one poem to the next – but this was wonderful. Do be warned that what she does deviate sometimes and you have to skip around the pages sometimes. Following it along and listening to it was like being at a live performance – even in the back of car. Her other collections/albums are on there as well so I will DEFINITELY be listening to them, although they didn’t have accompanying books when I looked on Amazon.

I’ve boxed away my 2016 notebooks. Every day since April 10th 2016 I have written at least a recount of my day, and on most days I have either worked on ongoing poems in there or written a new one. It has really improved my writing and got me motivated to write so much more than I used to. It just seems natural after writing an entry to continue on writing. I’ve not missed a single day – and I’ve used lots of notebooks as you can see!

Finally, I have discovered the joys of Audiable. Personally, I can struggle to read at the end of my day – or in any part of it – because I am tired all the time, even from the moment that I wake up. I am currently listening to a book called “So you’ve been publicly shamed” by Jon Ronson. He talks of people who have made HUGE misdemeanours and have been roasted online, primarily through Twitter. The people concerned are mainly people who have said things on Twitter that are hugely offensive, academics who have been discovered as creating facts or quotes or involved in what society would consider unordinary activities. It looks at how their lives have changed in the aftermath, and how an online reputation follows you around. He looks at ways people try to manage this reputation – and I won’t spoil the book but there are lots of ways of manipulating what appears on Google search results. It’s a wonderful book. Audiable is meaning that I am getting more literature in my life because on top of this I am reading as much as I was before.

I haven’t had the best of weeks, the truth be told. On top of my infection (we’ve been to hospital twice more this week…) I have a viral illness which is making me feel really poorly. It’s strange, and something I’ve never really read about before. It’s been suggested that I haven’t had a temperature throughout all of this because my body’s autonomic functions (I always remember these as the things your body does automatically e.g. blinking, digesting etc.) aren’t functioning correctly. It’s been very hard to define what has been the infection and what has been the viral illness. It’s hard to define what are my current everyday problems and flare ups, and what is something different because my body presents symptoms so weirdly.

I have to say that both Kendal and Lancaster acute services responded extremely well – especially given that I am “Complex Needs”, and tried their very best to do everything for me. The departments were all extremely busy and all the staff were dashing around. I didn’t see any take a break – and at tea time a nurse went around and asked everyone if they would like something to eat, or if anyone needs assistance eating. I know that this obviously isn’t applicable to me – but when you’ve been on a ward and seen a young lady unable to reach the food at the end of her bed, attempting desperately to reach it, and then it being thrown away, things like that are so very important. Taking the time out to help people with basics is an important part of the job – you never forget the staff that lend you the ward hairdryer, give you a bit of hand cream or go the extra mile for you.

Despite being discharged from hospital at 5pm on New Year’s Eve I got changed into a copper sparkly dress and went and sat in Paloma’s Cocktail bar in Kendal to see the new year in with two of my best friends. Both the food and cocktails looked incredible. I had talked with the Manager on Facebook beforehand, and explained that I couldn’t eat or drink and would just be sat there like a gooseberry – and they were wonderful. They tucked my wheelchair away and made me feel like a normal human being. I sat with the girls and we just sat chatting and laughing. It was great. I still felt rough, but I was desperate to go. It’s been something on my bucket list (no, I’m not dying, I just want to start living a bit more) for ages, and now I have officially seen the New Year in with my friends away from anyone’s home. I think I’m an adult! Haha.

I haven’t made any traditional New Years Resolutions because they have kind of been made for me! I can’t drink less alcohol (T-Total) or eat less cheese (Chee-total), but I have decided to try and do every single experience I possibly can, and to try and read at least a chapter of a book a day. I think they’re achievable.

I’m reading Girl Up and racing through it. It is an empowering book that talks about the issues women can face. It has covered sexist comments, “Girling up” as opposed to “manning up”, the dangers, pressure and fakery on social media, and sex. We are taught the biology of sex in schools, not how it translates to our lives. I would recommend this book to anyone aged 16+ full stop. Men should read it too, this is not a guide for girls it is a guide for everyone. In one chapter it asks you to go through some of the emails you have sent recently – how many times have you said “sorry”, “If you wouldn’t mind” and “I’m afraid”? Sometimes these things are appropriate, but I found that I’m very apologetic for often no real reason.

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:

1. 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…
2. 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.
3. 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.
4. 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.
5. 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!

So last week I was admitted to hospital for an operation, unfortunately this operation didn’t work and I’m going to have to have another one at a different hospital. Being in hospital compounds your emotions, tires you out and can leave you feeling very isolated – especially as I am about an hour and a half away from my family and friends at the moment. Being in hospital never fails to place things in to perspective for me. I am on a ward where there are a few people with terminal illnesses and a lady died yesterday. I didn’t know the woman, I’d never met her, but this has been my first experience of being in the same room as death. It’s made me feel extremely down, but I am reassured by the fact that she was nursed through the night by incredible NHS staff, who looked after her in a sensitive and loving way.

I, selfishly, cried. I don’t feel that it was my place to cry, but the wonderful staff on this ward let me cry. They talked to me on such a human level and did their best to make me feel better. A big issue for me while I’ve been in is my personal inability to wash my hair. I had surgery on my abdomen and so have been in bed for a few days. Yesterday, after the death of this lady they washed my hair, dried it, French plaited it and talked to me about all the things that I love and enjoy. These members of staff have been looking after me physically and emotionally in such an incredible way. These members of staff come in to work to meet care needs, but daily go over and above. The NHS in an exceptional service that we need to protect, respect and maintain.

I haven’t been doing much while I’ve been in, I’ve mainly been watching DVDs and reading little and often. It’s such an emotion heightened environment that I have been writing poetry – stuff I’m not sure I will ever share with anyone else. My family have been incredible, making the journey here every single day and keeping my chin up. Give the people you love an extra long hug tonight – and enjoy the little things, the five minute study breaks, some choccy in front of the telly. If anything, being in here has given me perspective – because the saying “someone always has it worse than you do” is true, but it should probably be more like “there are millions of people who have it worse than you do”.