So this week has been a lot less hectic than previous weeks. A real slow down – EXACTLY what I needed. I had a couple of things that I was supposed to do this week, but for one reason or another they cancelled. And you know what? I’m glad. I have become so exhausted that it has been so lovely to take a step back and get things back in order. I have been so busy getting all of my school work done and chasing a decision regarding some funding that we have been waiting five months for now, which is ridiculous. I have been using my writing skills to write many, many letters. Mum and I keep saying “Things will get better!” We’ve been saying that for two years – but things really will get better. Everything just takes a very long time!

The palliative care nurse is going to be paying me a visit tomorrow morning. Please don’t read palliative and instantly assume I am dying. Just like the role of the hospice, the role of the palliative care nurse is changing. I am classed as a palliative care patient because I need supportive management. There is nothing anyone can actively offer me treatment wise that will improve my situation or fix me. We are hopefully going to discuss some kind of pain relief, however, it is really difficult because most pain killers interrupt your gut motility (and mine is already pretty bad, so we don’t really want to go messing with it).

I have uploaded a new video to my YouTube channel, which you can watch by clicking HERE. In it I explore some of the things I have gained from being unwell. I know that sounds like an odd premise, but I talk about how I have re-evaluated life and what I would like from it, and trying to make negative things positive. I got a comment on one of my videos a few days ago from a company trying to tell me my condition could be cured by stem cells (uh, no) and when I looked into the ‘diseases’ that they said the treatment would work for, one of them was “aging!”. It made me chuckle anyway.

Mum and I went into Preston for a bit the other day. I introduced mum to the exotic thing that is the Waitrose Café. I never got the opportunity to eat in there, but I always thought the food looked really fresh so she had a cous cous and pulled pork wrap. I actually really enjoy sitting with people while they are eating out. It makes me feel normal and I enjoy remembering what each thing on their plate tastes like. We didn’t travel all the way to Preston just to go to Waitrose though. I think HomeSense heard me coming because they reduced so many notebooks I was in heaven. There was a large Paperblanks for £3 and a large red leather notebook also priced at £3. I didn’t feel guilty getting a few notebooks that day! It was wonderful to go out with mum. We really felt like we had our old mojo back. Our mojo from before my tube became dislodged, before I had the failed and successful operations, before mum became unwell. It was so lovely to feel so relaxed. We came home to lots of messages on the answering machine, but it was totally worth it.

I have just finished listening to ‘The one memory of Flora Banks’ by Fiona Barr. I really enjoyed it, there has been a lot of hype and advertising surrounding it so I was excited to pick it up. I even saw an advert for it on the TV! It centres around Flora who has Amnesia, and can only remember things from before she was ten (she is now seventeen). I can’t really talk about the book without ruining it. She writes everything she knows in her notebook or on her arms so that she can remember things when her memory goes blank. I don’t usually enjoy unreliable narrator narratives, but I think this is really well put together. The book got a little boring in the middle, which was when I was glad it was an audiobook – but it really pulled together at the end. In some ways, I could really relate to Flora. I don’t have anything nearly as bad in regards to my memory as her, but I have to write things down otherwise they just disappear. That’s why I go through notebooks very quickly. I also have a bit of a ‘butterfly brain’, as my family call it, when I am on feed. When I am on feed or having a POTs attack I have to say what I am thinking out loud at the moment, even if it is completely out of context, otherwise the thought is gone forever!

I have been doing lots of reading and writing this week. I got a new desk and new office chair. This is to make my office more accessible and hopefully elevate some of the terrible pain I have been getting from being anywhere other than my bed! The office chair was ordered by my occupational therapist and is wonderful. I can adapt it to exactly how I need it, every position is possible! It also has a foot plate which is a complete god send. It supports my stomach and stops the feeling of it pulling all of the time. It has also helped a lot with reoccurring back pain that I am getting. It is so supportive. To go alongside this, in order for the chair to fit under a desk, I have had to buy a new desk. This desk is a corner desk, so that my work surrounds me and I don’t need to get up or twist for no reason. The desk is also everything I hoped it would be. This combination means that I can actually sit at my desk like a proper writer and do my work in a lovely space away from where I sleep.

Hello all. I’m writing this from the hospice I got to for respite. It gives mum a well deserved break, the chance to relax a little and not worry about me for a little bit. It’s a nice break for me as well. I can leave all my school work at home and just come for a break. I don’t think this side of the role of a hospice is discussed very much. Yes, hospices’ still look after the terminally Ill , but in the modern day and age they also cater for young people with life limiting illnesses who need a break.The hospice I go to is such a massive asset to me and my family.

I came home from hospital late on Thursday. It was such a relief to be home and in my own bed. However, these moments of relief never seem to last very long with me! In the middle of the night the end of my tube snapped away! I had to lie as still as a statue and hope it would last until the morning. I posted a frantic message on the forum I belong to at 2am, and also emailed my consultants secretary. With the combined efforts of the forum and fabulous secretary, I got an appointment to see the tube nurse that afternoon! She fixed me up and sent me on my way. It was rather exhausting though, another three hour round trip.

I have spent the rest of this week relaxing. I am utterly exhausted, but relieved to have a tube finally in the right place! I have taken the week off YouTube and have been reading quite a bit. I’m currently on Finding Audrey by Sophie Kinsella, and have just finished The Boy on the Bridge by M.R. Carey.

I’m revising for my A levels as well. I’m studying health and social care, and it’s quite funny because I have had most of the procedures that are on the specification! I’m finding it tough with my concentration, but I am so close now I must get to the end and sit this exam.

I have also discovered that a TENs machine really helps the pain in my knees! It doesn’t help anywhere else but it is such a victory to have done time when the pain is dulled.

We’ve also had a very stressful week from the perspective of some health stuff I’m not going to talk about on here yet. All in all we are exhausted with everything this week. Anyway, hopefully next week I will have some more exciting things to report. Onward!

Hello all! I’m currently in hospital. All of those who know me are aware that I was due to have a test to see where my tube was yesterday. Well, on Monday I stopped tolerating my tube feeds all together, so we both knew (mum and I) before the test that I was going to be admitted. I’m currently on an amazing ward that specialise in out of the ordinary Gastro patients. They get all of my funny tubes and conditions, and I can’t tell you of the relief that I feel having doctors and nurses that understand!

So, I’m sorry if the grammar is all out of sorts in this post. I am typing one handed (my other arm has a cannula in that I am trying to keep in as long as possible, hence my right arm is strictly on bed rest, hehe). So I’m getting my excuses in here quick – I’m typing having not had any calories since early Monday morning AND with the wrong hand. You have been warned.

I haven’t really got much news other than my impending procedure tomorrow.

The lovely John Foggin has reviewed some of his poems over on his blog. He was lovely, so please go over there by clicking HERE and have a read.

I will also be performing on the 27th May in Verbalise at The Brewery in Kendal, it would be lovely to see some familiar folk there!

I have been listening and reading lost over the past few days, so watch my YouTube channel to see an upcoming video on that. Okay, I’m going to leave this here, but I didn’t want to miss a Wednesday blog post!

Hello. This week has had its very high, very nice bits and it’s hard bits as well.

Firstly, my wonderful high moment. I won the personal achievement award at the North West Cultural education awards! It was a huge shock. When mum and I were shown to our seats I realised that I hadn’t been shown how to get on to the platform stage and could see no ramp. I nudged mum, quite disappointed, and told her that I was sure I hadn’t won because no one had told me about access. However, when my name was announced I was taken backstage and shown a platform lift! It was pretty slow and I did have a vague feeling of being a pop star as they rise through the stage floor. I was so happy. Thank you so much to the Wordsworth Trust for facilitating my poetry and resulting arts award.

 

I have uploaded two new videos onto YouTube since my last post. One was talking about which books I enjoyed in April and will be taking into June, and the other was based on Katie Pipers new book Confidence. She made me realise how self deprecating I am when it comes to my illness, and her book gave me lots of new ways of thinking about the things that bother me. My channel is here: www.youtube.com/c/HannahHodgson .

On the hard note, I have been suffering terribly with my blood pressure. I have suffered with it being low ever since becoming poorly, but this week I lost a whole day to not being able to wake up properly, that horrendous purgatory of consciousness and unconsciousness when you have fainted. It usually takes me at least a couple of hours to ‘come around’ in a morning when waking up from sleep anyway. I have to go from my sleeping position, to slowly increasing angles to a chair in order not to faint. That’s okay, it’s part of my routine – but it’s a blumming nuisance not being able to get up at all sometimes!

We had my final Educational Health care meeting this week. The last two years have been a journey for me, through discovering what my body can and can’t do anymore, and those boundaries have also changed in the last two years. If any of the team read this, I would love to say thank you so much to the those who have helped me to keep in education and for all of the support along the way.

On a final note, did any of you watch Line of Duty on the BBC? What a good series it was, very possibly the best yet. I don’t usually watch much telly, but was gripped by the intricate storyline of corrupt police officers – and there were plenty of twists and turns along the way.

I have my X-ray as to tube placement on Tuesday, hopefully I will know where my tube is by the next time I write!

Hello all! I’m sure you are sick of me going on about this just as much as I am, but my feeding is still not right. I’ve had a letter from my consultant to say that I have a tubiegram (fancy name for an x-ray) on the 9^th May. It feels like a very long way away at the minute, especially given my extremely disturbed nights and increased levels of discomfort. My consultant only knew I had a problem on Monday, and got an appointment through to me by Tuesday. He’s so efficient and really cares, he’s just fab!

I have reached 200 subscribers on YouTube (click here to see my channel) which I just find absolutely mad! I can’t actually get my head around the idea that so many people want to listen to what I have to say about books? This has been something I have always wanted to do but never had the confidence. In one year I have set up a blog and a YouTube channel. I have gone from content watcher/ reader to content creator. I am so glad that I took the plunge and did it. The aim of having three creative projects a week (2 YouTube videos and one blog on here) is really helping me to keep my spirits up. I am making connections to people online that have the same loves as me, and I’m hoping they will become online friendships!

I have been feeling a little down, if I am honest, this last week. Can you guess what cured my sadness? Dove Cottage Young Poets! The group is always so lively and really gets me thinking. It combines loads of my favourite things – good banter, good poetry, amazing company and some really intelligent conversation. I’m not sure how Kim Moore does it to be honest. Every time I am feeling a bit down before the club mum says “You’ll feel better afterwards” – and I do! Kim puts so much effort into our sessions and you can tell she genuinely cares about our poetry. Thanks Kim!

This week I have read ‘Lying about last summer’ by Sue Walkman. This is a book from the perspective of Skye. She is at a summer camp for bereaved teenagers after her sister died in a tragic accident. When I began reading this book I thought it was going to be basic and much less enjoyable than it was. There were numerous dynamics between characters and unexpected dramatic twists. I would say stick with the first third of the book, that third is simply there for world building. The second two thirds make some very good YA fiction.

I have also read Ruby Robinsons’ ‘Every little Sound’, which is a poetry collection. The  collection focuses on the absolute of tiniest details in everyday things. For example, this from the poem ‘undress’:

“…Black veins of branches

shake against the blue screen on which they

hang. Small mammals are hibernating

in pellets of warm air under ground…”

I love this kind of poetry, it allows you to see things very clearly through the poets eyes.  I think my poetry is a bit like that sometimes (obviously not up to this standard yet), so this collection really made me think about how I could incorporate miniscule details into my work. I wasn’t overly keen on the very long poems, if I am honest. However, this does seem to be a ‘thing’ with me in poetry collections, so don’t rule them out.

We’ve had a nice and chilled first week to the Easter holidays. We’ve been in contact with the hospital about my ‘just not quite rightedness’ but my consultant is away on leave at the minute, so we are sitting and waiting.

I can now announce that I am on the shortlist for the National Memory Day best young writer competition! The results will be announced in the middle of next month. It means a huge amount to be shortlisted for this award. I don’t really speak about it that much but I struggle hugely with my memory. I can be having a conversation and completely forget what I am talking about. I have to keep notes on the plot of a book because I can just forget them sometimes. I really struggle to retain information long term, and also would forget to complete basic tasks without my ongoing to do list in my diary.

Last week we went to stay in the Lake District. Specifically, we went to go and stay at The Daffodil Hotel in Grasmere. I have to say that it was the most accommodating places we have stayed since I have been poorly. The room was fully accessible and adapted in a very subtle way. Even the shower seat was posh! There was a wonderful concierge team who couldn’t do enough for us. There was one, Steve, who was absolutely amazing. They carried all of my equipment up to my room, organised extra blankets for when I was freezing because of all my autonomic stuff and even got us a mini fridge so that I could store my medications. I couldn’t recommend them enough.

Mum and I went into Penrith one of the days. We went around lots of independent shops, and the accessibility was okay, there were a few places I couldn’t get in but there were plenty of accessible shops.

I have made a new YouTube video, the link is HERE, talking about all of the books I have picked up on my travels around the Lake district, and some wonderful libraries.

I have also done the first in a series of five minute interviews for the Kendal Poetry Festival blog. Chrissy Williams has very kindly agreed to be my first interviewee, head over to the poetry festival website to check it out!

My health is still just not quite right. We don’t really know why I’m not picking up, and we aren’t sure what we are going to do about it – but I’ll keep you informed!
This is a very random thing to say, but I feel this may help some people. I have bought a wifi plug and put it in my room. This means that I can turn my lamp on and off when in bed on my phone or tablet, and don’t have to shout mum or faint trying to get up and turn it off. For anyone with severe POTs I think this is a very important invention. In a life where I struggle to keep my independence, something as simple as being able to switch my light on and off has been like being handed a slither of independence back. That sounds silly, as I type it – but it’s true. Turning a light on and off isn’t something you would think you would miss doing.
I have taken a break from YouTube for a few days, but if you would like to win a copy of Perfect by Cecelia Ahern click HERE
On Saturday I spent the day in Barrow attending the Persisters Holding the line event and workshop. The wonderful Kim Moore and Clare Shaw were at the helm and the events were thought provoking and unifying. The workshop centred around themes of injustice and self reflection and I found myself delving deeper into my memories and emotions than I have in a long time, and writing poems I wouldn’t have known were inside me. In between the workshop and the evening event I borrowed Kims very comfortable sofa and had a nap because I was flagging quite considerably from a long day. The evening event highlighted how strong the individual can be when they speak out – but also what an impact a group can make. The open mic gave so many opinions voices, each different and thought provoking in their own way.

Mum and I have been attempting a couple of trips out over the last few days. My friends on Facebook will already know this but I am going to have to talk about this anyway. The Lake District is HUGELY inaccessible. I understand that there are many historical and geographical reasons for this, but there were very few attempts to modernise the access. I love the lakes and feel protective towards it, but I think they missed the memo of “reasonable adjustments” for access. Out of the nine shops that I wanted to go into ONE was accessible, which I think is unacceptable.
Our saving grace was the library in Ambleside. What a lovely set of libraries Cumbria has! We have been to Penrith, Ambleside and Kendal in the last week. All of the environments are modern, airy and have a wide range of books. I really love a good library, and Cumbria has plenty of them. Libraries are an underrated place within our town centres, they are community hubs that offer a step back from the busy high street outside. I have picked up lots of recent releases which I look forward to reading them.
Finally, I have had some really nice news. I am a finalist on the North West cultural education awards personal achievement section, the awards ceremony is at the end of the month.

First of all I would just like to send you over to my YouTube channel! I have been busy creating and uploading videos during some of my spare time in the last week. I am still pretty unwell, but I have a little time where I am not feeling too bad and can put some makeup on to hide the bags under my eyes.

I have a very exciting opportunity for you. If you would like to own a copy of Cecelia Aherns’ new book ‘Perfect’ (the sequel to the outstanding book Flawed) which will be released tomorrow, please leave me a quick comment at the bottom of this page or on my video. Harper Collins have very kindly given me a copy to send out, and gave me the opportunity to interview Cecelia, which is included in the video.

I have already raved about the book Flawed on here. It is amazing. It is such an original dystopian world and a very bold plot for a YA novel. The main character, Celestine, lives in a world whereby you are judged in ‘Flawed’ court over your moral and ethical decisions. If you are deemed flawed you can’t do certain things and are branded in one of five places, dependant on your flaw. Celestine is the girlfriend of the head judges son and lives a ‘perfect’ life, until one split second changes her life forever.

I have also made a few other videos – so the link to my channel is HERE and the link to the video for your chance to win a copy of Perfect is HERE.

The rest of this week has consisted of seeing two of my friends who I have been meaning to see for ages. I met up with one of them in the Warehouse Café at the Brewery. We chatted about poetry and how to include difficult circumstances within it. It was so lovely to meet up with her and have the opportunity to discuss things we never have before.

My other friend lifted my spirits more than he realises. He took me to go and see some beauty spots where I did not even have to get out of the car. One place was looking down over Bowness, having driven up a very curvy road. The other was from a tiny church looking down over the valley. It reminded me that there is life past all of this rubbish at the minute. A life past my bedroom walls. I know that sounds silly, but when you are ill it is very easy to slip into the mindset of your house becoming the centre of everything. I also made him a cup of tea, something barely worth mentioning for most people. However, this is the first cup of tea I have made for two years. He didn’t spit it out in disgust or anything. It must be like riding a bike, you never forget…

Despite my health not being the best at the minute, I am feeling really fulfilled as I am typing this. I am achieving stuff, and moving forward despite of this illness. It is not defining me, it is driving me forward and making me.