As some of you will already know, this week has been very eventful for me in some very positive but also negative ways. I finally had the second attempt to remove my buried bumper, which has been a constant source of pain for me since last July and has meant I have had to pass on NG tube for drainage daily. It was successful! I am totally relived, because the next step would have been to cut into me from the outside, which is a big operation. However, in removing this bumper my feeding tube had become dislodged. This means that as I am writing this I am feeling pretty terrible and am draining / throwing up a lot of what is being pumped in. I am down to have another endoscopy, this time under sedation and not GA, to try and get it back in the right place. It has been a very emotional few days and I am so lucky to have such supportive parents who have been there for me the whole way.

After my General Anaesthetic my POTS was really bad, almost comically bad. With POTS syndrome when you go from sitting to standing or do another trigger you heart beat increases from its normal rate by 30-40 beats per minute and your blood pressure goes really low. In recovery all I did was move my head and it went up by 40 beats per minute. It took three times as long to get me recovered from the op as it did to have the actual op! I am at home, pretty sore but doing okay. Mum is doing a wonderful job of intensively looking after me (as usual) and I am just looking forward to getting back to a little normality.

On Friday I performed at Lancaster spotlight as a part of their ‘listening to youth’ project. I had such a fun time, the audience were wonderful and incredibly kind. I got lots of very encouraging feedback as well, which is always great to get. I performed first as I get tired, and then sat back for the rest of the evening watching the other amazing acts perform. I’m not just saying they were amazing either, they were incredible. One of my new friends performed a very thought provoking piece on how we have trivialised words such as ‘depressed’ and ‘ocd’ to mean sad or liking something tidy, despite being serious illnesses. She has certainly made me think. There were also other acts than poetry, there was a comedian and musician as well. At the end of the evening a local band called Karena performed. In the car on the way home we were flabbergasted that they were performing here and not in Manchester. I loved their set and want them to bring an album out ASAP!

 

 

I would like to thank Ron, Sarah and Chris for running the workshops that led up to this performance. I wish they could continue! I have made a couple of firm friendships with very creative and talented people.. My confidence while performing has also gone up hugely. I now enjoy performing my stuff and don’t feel very nervous at all, which is something I never thought I would say!

On Saturday I went to see the amazing port Jackie Kay perform live at The Hothouse in Morecambe. She was incredible. Having read her autobiography Red Dust Road I was so excited to see her, and she did not disappoint. She was hilarious and read some really good stuff. I was talking to a lady afterwards who wondered if Jackie had just read the best extracts from her book – but I explained that they had simply been extracts. That’s how consistently high the quality of her writing is. After the performance I met her. She is one of my favourite poets that I have met, in that she was so personable and genuinely interested in my life and interests. She was very patient when we took photos as well, as my phone decided to make the photos blurry and only got a good one on our ninth attempt!

 

Exactly one week ago, Kim Moore and I went to the Words by the Water festival to see a couple of performances. One that stood out to me was A.L. Kennedy. She was an amazing personality on the stage, and came to life while talking about her work. She was extremely quick witted – to the extent that I started taking a couple of notes containing her advice, something that I have never done when seeing a writer before. Her most recent book is an absolute monster (as she pointed out on stage it is pretty hard to tour with), many hundreds of pages and many tens of hours would need to be dedicated to reading it. She talked about the importance of being able to imagine other worlds and other systems of government. If we can’t imagine other ways of living, we become happily swept along with a system that may not be fit for purpose. She also highlighted that writers and other artists are often the first to be killed in dictatorships for the very reason that they can make people see the need for other systems. A sobering thought.

I enjoyed that day with Kim so much that I went to the festival again, this time with my mum. We went to see Alexander Masters talk about the book he had written about a person whose one hundred and forty eight diaries had been thrown into a skip. He learned about the person through the entries and wrote about his discoveries as he went. I am trying my hardest not to reveal a single detail about the person he uncovered, because that would spoil the book. Unfortunately, the host of the event was a little over excited and revealed things I really wish she hadn’t, including the main revelation within the book. I could tell the author was feeling pretty upset as she revealed each little thing. Alexander obviously cares deeply for the character he found within the pages of those diaries as he choked up when talking about them. It has made me wonder what may happen to my diaries one day. I’m currently on journal number fifteen.

I finally got my electric wheelchair yesterday. I have been waiting well over a year to receive it, but it is finally here! I am going to keep using my scooter for school, but at home I am going to have my wonderfully small new chair. No more dragging shop railings or product for me! It also has the function to climb small curbs, although I have to confess I did have a fear of death while trying it out. The man showing me how to use it hated the function as well, I think. If your wheels aren’t completely straight back then you get tipped out. If you don’t come at it from directly from the front you tip. I hate that function, it may come in use sometime though, although I’d rather go an extra 100yds down a road to be honest. The scariest thing about it was is that in order to desend the curb you have to come at it backwards (!) and as a result end up facing backwards into oncoming traffic (!!). I am ridiculously over the moon to finally have this wonderful piece of kit though, its going to change things.

I got my operation date in the post early this week. By the next time I write I will have had my operation. I hope I am at home recovering. I’m more scared about whether I will be let home or not than about the actual operation or the amount of pain I will be in. I can’t wait for the anticipated (hopefully, I learned about getting my hopes up from the last attempt…) result, which is that I will no longer have to pass the tube on my face every night. That would be amazing. The skin where I put the dressing to fix the tube to is very raw, and my nose is getting quite sore. I can’t wait to have it done and just move on with my life.

See you on the other side!

This week started with something that hasn’t been done in my community nursing setting for many years. I started subcutaneous fluids, something usually used in end of life care, but being used in me to improve ongoing quality of life. The subcutaneous layer of fat is just below the skin. A small needle can be inserted under the skin and some fluid put in to this small layer of fat. I am currently having about half a litre a night through my skin! It’s very strange, but works. My mouth doesn’t feel as sore as usual. We don’t know how long I’m going to be able to stay on them, as this depends on my skin or ‘sites’ (there are only a few subcutaneous areas of fat in the body) will last, but I am enjoying the benefits while I can. The only drawback is that it makes one limb swell for a while until the liquid is absorbed, it doesn’t hurt and this is normal for this treatment. I have waited months and months while protocols etc. have been sorted out, so I am so relieved to finally be trying them.

 

It was World Book day last Thursday, and I dressed up as a fairy. Specifically Libby the story writing fairy (the nearest thing I could find to a poetry fairy) from the rainbow magic series. I was in the group of children who got the first ten Rainbow Magic Fairy books, which were based on colours e.g. Ruby the red fairy. Now there are over two hundred versions of these books, from the Royal Wedding fairy to the Doctor and Firefighter fairies. World book day was a huge success, we had visitors in school and did loads of fun and relaxed activities. It was my favourite World book day ever, and my last one at my current school.

I took part in my first Lancaster Spotlight workshop on Saturday. I met such a lovely group of really talented young people who were like minded. We performed poetry and learned about editing. We worked in groups and looked at individual poems. I feel really lucky to be a part of this group.

 

We went to see my Gastroenterology consultant yesterday. He is great and really helps with the numerous bumps in the road that we face as a family. There is no specific umbrella term for the conditions I have, no predicted course or time scale. It is amazing to have a consultant who is ready for anything –  and I threw him some curve balls yesterday. You need a consultant who likes a challenge and genuinely wants to see you be as well as you can be. He has been hugely supportive of my schooling, regimes within community nursing and letter writing regarding things such as respite care. He understands that in order to have a proper life I need help, and that is okay.

 

I have been reading a book called Flawed by Cecelia Ahern. Wow. I am absolutely loving YA fiction at the moment. It is based in a dystopian world where your moral decisions are judged by The Guild. If you make a failed business investment, mismanage money or do anything morally questionable you could be branded by a hot iron and classed as ‘Flawed’. Flawed people have to live very basic lives. The Guild have been in place to try and rid society  of all flaws and to make society perfect. It’s an amazing book, and there is no way I would limit this to Young Adults. It is one of those books you sit down to read a chapter of and end up reading six. I think the dystopian universe has been really overdone since the Hunger Games, and I’ve chatted to others that agree. However, Ahern has brought a fresh approach to this genre and I can’t actually wait until the next book. Luckily it is out in the next couple of months.

I am travelling down to Huddersfield today. No, not for an appointment, but because I am a finalist in the Huddersfield Literature festival Poetry is Courage competition! As I am a finalist my poem will be made in to a poster and displayed at thirty venues around Huddersfield. I wrote a poem on the theme of Anxiety. I wouldn’t say that I’m an anxious person at all – but I, as everyone, have my moments. The other day, for example, when I was out with my mum on my scooter, I crashed into the door of a lift and couldn’t free myself and then the doors kept on starting to shut and people were staring and arghh! I then talked to a friend who suffers with really awful anxiety and watched some videos on YouTube about anxiety. As my poem details, people may feel they have to rebuild themselves every night in order to go out again the next morning.

On Saturday I went along to the Spotlight young writers try out at Carnforth Railway station. I performed a selection of my more recent poems, and got such a lovey response from Ron and Sarah. I am so excited that I will be working alongside them in two workshops, and then performing at Lancaster Spotlight on the 17th of March. I have my pre-op a week or so before the Spotlight performance, so for once I am hoping there isn’t a swift turn around after pre op… we shall see anyway. It’s an amazing opportunity and I am very pleased to be a part of it.

 

It has been half term this last week, so I have been reading a few books really quickly. I can’t actually tell you what books I am reading as they are part of the Spellbinding shortlist for 2017. Spellbinding is a reading challenge which is run by Cumbria Libraries. There is a shortlist of books for primary and secondary schools. As a library official at school I am helping to run our club this year. I have read four of them now. There has only been one so far which I haven’t enjoyed – and considering these books are aiming to please young people of different ages, genders and walks of life I think that is very impressive!

It’s been quite a busy week, but we spaced it out so that my body could keep up! On Saturday I went out on a night out into town with one of my best friends Rhianna. We went to a pub where the music was so loud we couldn’t hear each other talking. It was great, and definitely something I want to repeat. I know this sounds silly, but I loved it because it felt so teenagery (I know, not a word, but it is now) and right.
The thing that people don’t see are is all of the preparation that went in to that one incredible night, and how it made me poorly for two days after. Before going out I had to have an equivalent of four of five hours extra feed, so that I could go out on water. That wrecked me from the start. I then got up and dressed, did my meds, packed and went out. In quite a bit of pain if I am completely honest with you. I went out in my wheelchair, and it didn’t mean we had any less fun. Both the bouncers and the incredibly drunk were very nice, something I wasn’t expecting if I am completely honest. One slightly weird thing that came about was a row of very drunk people kissing and shaking my hand? Very odd. There was three of them. Congratulations on behalf of the drunk, we are proud of you for being out while sitting down on a chair that has wheels? Anyway, they meant well. You know you have a bloody good friend when she drags a chair next to you on the dancefloor and chairdances next to you. She made me feel so normal. Thanks again you wonderful person! Despite Rhi having a couple of drinks she didn’t crash the wheelchair once (although I nearly broke my toes against door frames a couple of times. Haha!). I was beyond exhausted and felt very poorly when I got in. I took off all my makeup and passed my NG tube into my stomach. I started draining a bit of blood. Swaying in my wheelchair to a bit of music caused me to have a small bleed. I think my body is actually allergic to the concept of being a teenager. It wasn’t anything major and mum helped me with the rest of my routine to get to bed. An hour of so later I was ready for bed. Reading this you may think I would never want to go out and do that again – but you know what, despite all of the pain I had an amazing night and would definitely do it again.

In other news, the Kendal Poetry Festival has now got full funding! I am so excited about this years festival and its inclusion of young poets. Being the Young Poet in Residence last year has given me confidence in my work and made me push myself forward for things that I probably wouldn’t have done before. I now really enjoy performing, and actively seek out the opportunity to watch others perform, largely due to this festival. I am beyond excited. Block off the 16th to the 18th of June 2017!

I have just finished a Young Adult fiction book called All the Bright things by Jennifer Niven. I haven’t read any YA books in ages, but picked this one up because so many people were raving about it. Oh my goodness, I can see why! I wouldn’t say this book is a YA book in a traditional sense, yes the protagonists are seventeen, but the subject is one that needs addressing so much more often in fiction generally and the story is so complex iI am sure it would sell on adult fiction shelves. The book focuses on Violet and Finch, Finch has obvious mental health difficulties from the start. The chapters alternate between Finch and Violet’s perspectives. It shows him as a 3D character – yes, people who are struggling with their mental health feel more than one emotion, they can love and care for others, their illness is not a selfish thing. Jennifer Niven was incredibly well researched when writing this book – and it seriously shows. It’s a devastating and eye opening read. The best book I’ve read in ages (I say that all the time, but seriously, I think this time I have found my favourite).

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