A shock and performing

A shock and performing

I cannot believe how quickly the weeks are whizzing on by, everything seems so busy, but mind you a trip to the shop wears me out so please don’t take my word for it. I have been putting a lot of energy into my revision this week. I have created sound bites of me reading my revision aloud, which is really helping. It’s very odd because I sound extremely posh when I’ve been recorded. I think that’s why I haven’t been driven crazy by the sound of my own voice – because it doesn’t sound like me at all.

This week I hit over 750 subscribers on my YouTube channel, which I am completely in shock about. I have had so many meaningful conversations with people through the comments section. I genuinely think that this is going to be a fabulous thing for my mental health. It isn’t a fix to feeling a little lonely, but it is definitely a start.

The thing I don’t think many people realise about having a long term health condition is the amount of phone calls that you receive in a week. I am in a very fortunate position to have a secretary (aka mum) who deals with most of them, but at the minute we are getting at least two a day, and they involve lengthy conversations. The things we are organising are hugely important and needed, and will be fabulous when they come into fruition – but I’d like that time to be now. We are constantly waiting for the time when things slow down, that ‘in a few weeks we will be sorted out’ has extended to over two years. Although, hopefully sooner rather than later I WILL be sorted out.

I performed a slot at verbalise in Kendal on Saturday. I really enjoyed the experience and it made me remember how much I love sharing my work. I was really struggling with the heat that night. I’m actually very proud that I didn’t faint mid performance or while in the audience. It’s very strange. My body can be bouncing hot but my extremities go very cold, I go dizzy and say stuff I wouldn’t normally say. However, I managed to hold it together for the reading. I shared some poems and experiences that I never have before. Mum and I felt quite emotional afterwards, which I think is fair enough as they contained some fairly raw memories.

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The palliative care nurse who came to see me last week was a genuinely lovely lady. She was really good at thinking about services I may need, and really seems like an amazing source of support.

I have been in Kendal today giving out free poetry postcards. Eight young poets, including myself, had their poems published onto cards which were then handed out to the public. These cards had a poem and details of the poetry festival on them. We had mixed reactions. People were either delighted to be given a poem, said ‘no’ in your face, or blanked you completely. It was tricky, and I have to say I hated the first half an hour, but after that I actually really enjoyed it. I felt like a poetry missionary sent to Kendal!

I have been reading loads (as ever) this week. I have read Bear by Chrissy Williams which was stunning; Everything Everything by Nicola Yoon which was very memorable and Apple and Rain by Sarah Crossan which was very moving. I will be giving more in depth (much more in depth!) reviews of these books in the near future on my YouTube channel.

Pain, Office and Flora Banks

Pain, Office and Flora Banks

 

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.

Hospice, rest and reading

Hospice, rest and reading

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!

So, I’m a hospital inpatient :(

So, I’m a hospital inpatient :(

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!

Personal achievement award, a huge high and a few lows

Personal achievement award, a huge high and a few lows

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.

 

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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!