This week I went to the Cumbria Cultural Awards, a hospice and recognised feeding tube awareness week.

I will start with the Cumbria Cultural awards. I went along to the awards with Kim Moore and Jenny Copley to represent the Kendal Poetry Festival for festival of the year, unfortunately we didn’t win, but we were up against some very stiff competition. In the end the comic arts festival won – and they are such worthy winners. The amount of events and prestigious artists they attract is incredible, and the atmosphere during the weekend is always amazing. I’m not going to say Kim and I weren’t a little disappointed, but all the festivals could have won for different reasons because they were so diverse.

At the weekend I went and looked around a hospice. Hospices are perceived as places that people go to die, however, this was a children’s and young people’s hospice. While they offer their services to people who are passing away, they also offer respite to families that have children with life limiting or life threatening conditions. I don’t know if I have a place yet, but oh my goodness it was an amazing place. There was minimal medicalisation – it was quite incredible how functional but hidden that side of things was. There were hospital beds in every room, but discreet call bells, bed sides and alterations in the bathroom. The rooms were huge, had lovely countryside views and looked really homely and comfortable. There was also a sensory room with a home cinema in it and a huge space dedicated to craft and having fun. They were talking about days out we could possibly do and things we could go and see. What an incredible place it was. Hospices, especially children’s and young peoples hospices, are not only places for the dying, they are very much for the living.

This week is also feeding tube awareness week. I didn’t know what a feeding tube was before I became unwell. It’s something that never crosses your mind because you can go to the tap and drink the water that flows from it. You can reach into your cupboard and eat the chocolate bar hidden at the back of it. You can meet up and go to the pub for the night. Things I didn’t think would change did change, and that could happen to anyone. I also kind of like the fact that it is feeding tube awareness week in the same week of my nineteenth birthday. On Sunday I can celebrate not only my birthday, but the tube that has seen me through (and I’m not being dramatic) and kept me alive to see this next milestone.

This week, I have been chatting to some of the girls who I went to school with. I suggested that we publish a song we worked on together. I wrote the lyrics to this song two years ago. These words won my first ever poetry competition. “Young Protest Songwriter” from Amnesty International. Last year Georgie and Sophie took on these lyrics and wrote a song to them. The result was a powerful song I would encourage you strongly to share and connect with, given the state of our world at the moment. The song talks about not being allowed to remain in, or go to a country. Listen, take it in and please share.

The link is here: https://soundcloud.com/hannah-hodgson-84290911/nowhere-citizen

I am fairly certain these weeks are whipping around quicker and quicker. Maybe it’s just because they are very eventful and we never seem to be given a week off! I am sat in the car park of my hospital, waiting to see my cardiologist. I had a scan this morning and now we have a two and a half hour wait until my next appointment. Mum and dad are currently sat in the car munching M&S sandwiches, and I’m sat using my dongle to upload this from the car park!
I am exhausted, if I am honest, but quite content. We have had many meetings and appointments and now we are just waiting for some kind of let up. When I see people, I feel like I have no real news despite having had a hectic week. Illness is a strange little bubble to be caught up in.
A big life change decided upon in the last few weeks is that my mum has given up work to become my full time carer. My condition is making simple things difficult, and she is always there to sort me out. It has come as a relief to both of us, a burden has been lifted, because of this decision. My mum works hard for me, and she means that I can do things in precious spare time. She would say that any mother would do what she has done. I don’t agree. She goes above and beyond, gets up before me and goes to sleep after me. She’s a wonderful woman.

Secondly, due to increasing appointments about everything under the sun, I have given up my Sociology A level. We have worked out that by the time I am getting my second attempt operation, exams will be six weeks away. With nine hours of sociology exam including my extra time it was all too much. Especially with my memory problems and sleep deprivation. It feels another like another weight has been lifted – although I am quite devastated in my heart of hearts, as it is such an amazing subject. I made the decision because I would rather get one solid A level than two substandard ones that I can’t really use in the future.
I met up with a friend who I used to go to school with at the weekend. We went in to Lancaster and did a little shopping. She very naughtily (and kindly) bought me a gorgeous handbag which is very ‘me’ on every level. We talked about our lives and it was weird for me. I am still in the cocoon of high school, a place I have belonged for eight years. This year I leave. My friend has a full time job working as a receptionist and a long term boyfriend. She’s turned into a full blown adult in a matter of four or five months. We looked around TK Maxx (where we sometimes spend hours), the huge Waterstones at the top of town with the dodgy disabled access, some charity shops and Boots. We only had a few hours to catch up because I had to get back home, but it was quality time. Life moves so quickly it’s so nice to press pause and breathe.
I went to this month’s Verbalise in Kendal on Friday. I loved the atmosphere. It was in the Warehouse Café. I did one of the seven open mic slots available, in front of an audience of people I barely knew I sat on a chair and read a few poems, the audience were lovely and I had an amazing time. The spotlight acts were amazing.

This week has been an appointment free week (we will ignore today, I have two today!). It has been such a blast of fresh air but busier in most ways. We’ve been doing all of the jobs that have been stacking up. It feels like I work in an office and I’m working through the stack of work dumped on my desk while I’ve been away. This stack mainly consists of revision, which I have been working on, just apparently not quickly enough. It’s kind of rubbish having bad concentration levels, I’m not lacking in the motivation needed, but I have to revise in 20- 30 minute slots otherwise nothing really goes in. It’s annoying because I work really hard! It’s thought to be caused by everything I have going on and associated lack of sleep.

Mum and I managed to break away and go out for short bursts this week. It’s the first time in ages (I’m talking months and months) because my mum has her own issues with her health. We went shopping in Lancaster and it really felt like old times again. It wasn’t the fact we were actually partaking retail therapy, we barely spent anything, it was the fact that we were together and laughing again. We also went to see Lala land at the cinema, which I enjoyed more than I was expecting to. I loved the beginning and the end, but found the middle a bit slow, I did the nod and was nearly asleep. For anyone who has seen it, have you got that piano tune stuck in your head? I love it. Very beautiful.

In a spare hour I found tucked inside my diary I decided to finally get my VCR to DVD software out, and start the mammoth task of converting all of the footage of when my brother and I were tiny into a more modern format. We have a dual DVD and VCR player, considered very modern as DVDs started appearing – now, not so much. I found it quite an emotional experience. It was strange seeing myself running around carefree, and stuffing loads of toffee popcorn into my mouth with a desert spoon at my Great Granny’s eightieth birthday party. It has actually given me quite a bit of perspective. I was born with this neurological condition that I have, but can you imagine if it was as far advanced as it is right now when I was that young? I would have been a little girl who couldn’t run around Happy Mount park, go in the water park or eat ice creams. The reality is that there are so many parents out there that have to follow their toddling kids around with their feeding backpacks, who put feed pumps underneath prams, who watch other children and wish their child could do the same. Yes, my situation is pretty bad, but when I got really poorly I was sixteen, not six. It has shaken me up a bit to think about that.

This last week I listened to “Scarlet says” by Scarlett Moffat on audible. It was written before she won the I’m a celeb jungle. She’s hilarious, I love her on Gogglebox, and although I don’t always agree with her opinions she had me giggling quite a lot. She takes you through the process of a classic night out for her (spoiler: getting very, very drunk) and talks about her life and friends. It’s been a nice light listen while I’ve been so busy! I got it for £1.99, but I won’t buy it full price. She narrates it herself, I love it when authors read their own books because they know them inside and out. The only thing that I didn’t like were the lists dotted throughout the book. Perhaps the editor thought the book was a few pages short and needed some padding…

An alternative service to Audible, and available with both Cumbria and Lancashire libraries is Borrowbox. You enter your online details for your library card and there is a huge selection of audiobooks and eBooks to choose from. It’s saved me from spending my monthly Audiable credit on a really recent release (Small Great Things by Jodi Picoult) so I am really happy. There are loads of books on there and I’m quite excited to use this alongside my Audiable subscription.

Oh well, I’d better stop procrastinating and get my brain back in to gear. It’s been a nice distraction, but I’m afraid I’m going to have to get back to the revision som

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!