What I’ve been reading and THANK YOU!

The level of support from my last blog post was very unexpected. I was stunned. So many people read the post – and some have been in contact with similar conditions and experiences. I have joined some closed Facebook groups as well – and feel very connected to others now. You wouldn’t believe the amount of courage it took to press that little “post” button for that post. I was really worried what people’s reactions would be. I thought people would ignore it on their feed!

The reaction was one of warm kindness and I can’t thank friends or strangers enough. We are a very reserved family, and usually hate other people knowing our business so I was worried what my family would think about me telling all on such an open forum. My dad came home smiling that day, and said he was proud of me. It’s given me increased confidence, that’s for sure. I don’t worry about answering the door to the postman anymore, he’s got used to the tube I think. He did look quite shocked the first couple of times though, I have to admit. Ha!

On another topic, I recently got glasses. I haven’t stopped reading since! One in particular, that I read a few weeks ago is lingering in my head. I wouldn’t say it was my favourite collection of poetry, but I enjoyed it and it’s just stuck there. The collection is titled ‘the princess saves herself in this one’ by amanda lovelace (all lower case, as throughout the collection). It charts a young woman’s journey through heartbreak, loss and love with an overarching theme of needing to take time for self-care. Some of the poems used images used hundreds of times by other people e.g.  something along the lines of a ‘blackberry bruise’ – but there were a dozen poems in the book that I have bookmarked and keep on going back to. These selected poems removed some kind of block in my mind and made me see things differently. It’s almost been like seeing through a window I hadn’t noticed before. The poems are compressed and every word is chosen to fit just right.

I don’t really have much else to say. Thank you once again for your support, it makes things so much easier to have love and understanding around.

Me. Intestinal failure and POTs.

In this next post I’m going to talk about all my medical stuff, in the hope of finding someone, somewhere with the same thing. I’m also sharing this online because I don’t feel like I have anything to hide. I’ve felt almost ashamed or like I’d be judged because of how different my life has become. I’m still the same girl, always with her head stuck in a book, who loves LUSH products, shopping, poetry, notebooks. The same girl who loves to sing along to music that’s too loud and who never leaves the house without makeup.

I have spent hours reading through blogs online trying to find someone I could connect with – a blog that isn’t complaining but explaining how they live with conditions. Those of you who know me personally know that I am very practical and task orientated and I’m looking for someone to discuss these practicalities with.

I was born with a rare neurological disorder (a glitch in my brain basically) which means now I have “degenerative pan gut dysmotility” or total degenerative intestinal failure. I was born completely normal, except for gastric reflux which worsened as I grew older. In January 2015 my vomiting became so bad that I was admitted to hospital for six months. After numerous tests this diagnosis was made.

Nothing from my stomach down gastro wise works very well at all. I can’t eat or drink, and rely on a jejunostomy tube (a feeding tube straight into my bowel). My medications have to be delivered by a syringe driver at 1ml a minute otherwise I can be very sick. My stomach drains through a port on my tube to help stop me be sick (although this isn’t working at the moment so I pass a nasogastric tube NG tube down my nose and into my stomach every night).

The bit that I’m scared to talk about online (my bowel) has been causing me huge problems over the last few months. I am on a large amount of laxatives and have to do bowel care every day. I don’t understand why the bowel is seen as something that no one can talk about – it is as natural as the blood flowing through your veins and the air we breathe. Everyone has to use it in order to live. My bowel causes me tremendous pain – especially at night while on feed (my source of calories). When I go on my feed I am forced to be in bed due to its ill effects on me.

I also have something called POTS (Postural Orthostatic Tachycardia Syndrome). This is a huge factor in my life – and another reason I stay in bed while on feed. POTS means I am extremely dizzy and am prone to fainting. A POTS attack consists of a really fast pulse, much higher than your normal pulse, and very low blood pressure. This happens to me because so much of my blood is redirected to my bowel trying to digest the calories and water that it struggles with. Personally, I go very pale and start talking absolute rubbish because I feel light headed. POTS attacks can happen to me any time and are extremely embarrassing.

I have been diagnosed with chronic fatigue, but not chronic fatigue syndrome. It is a result of everything that happens to me in a day, and the tiredness related to that. I use a wheelchair and really struggle to walk any distance because of this fatigue, my POTS and my pain.

I guess I’ve written this because I’m not scared anymore. People can know. I have wonderful friends and family that help me so much more than you will ever know. I’m not going to sugar coat it – these conditions can leave me miserable and they are degenerative. However, with amazing people surrounding me I know I have so much love and support.

The main reason I’ve written this is to hopefully find someone else to talk to. So if you’re reading this and you have this condition it would mean a lot for me to speak to you.

Hollie McNish and overlays

I’ve been away from here for a few weeks. It has been life stuff. Sorry to be so illusive but the “stuff” isn’t my personal “stuff” to share.

I went to poem and a pint in Ulverston a few weeks ago and saw Hollie McNish – one of my favourite poets ever. I always think her poems have such a well thought out opinion and strength to them. They made me rethink the commercialisation of motherhood, something I didn’t even think was a thing.

I also read some poetry during the open mic. It was very strange to be reading on the same stage as Hollie!

 

I’m launching a little poetry club at school tomorrow. We are going to be looking at two poems. The first “Introduction to Poetry” by Billy Collins is one of my favourites. I love studying poetry, but I hate the overstudying of poetry for people just getting to know it. I personally feel that’s what put me off at GCSE. Now that I love poetry I can pull a poem to bits and restitch it again, in fact I love doing it – but at the start this is so hard!

The second poem was recommended by the Poetry Society on the theme of “messages”. It’s “This is just to say” by William Carlos Williams.
It’s going to be National poetry day on Thursday (6th October) – and guess where I’ll be? Stuck in a hospital clinic! Gutted!

In other Hannah related news I have started using coloured overlays while reading. I have something called asfedia (more commonly known as Irlen Syndrome) – where words jump out and lines wiggled on the page. I just assumed that it was happening because I was tired – something as simple as a purple sheet has revolutionised everything! I’ve definitely got a few books to chomp my way through now.

My favourite poem at the moment is The Fish by Elizabeth Bishop. I discovered it at Dove Cottage Young Poets and it has stuck in my brain – a rare thing these days. It is the imagery that does it for me. The feathered fish, the wallpaper skin with damp coming through. I love it! It reminds me of my grandad down at his pond and the endless photos of fish I’m supposed to know the breed of.

I’ve got a couple of things coming up over the next few weeks. See you soon!

Summer! Poetry and a holiday

I have been basking in the glory that is the summer holidays, it has been wonderful. It’s enough time off to find yourself again, write a few poems and relax. I haven’t been very well during this time, but mum and I have worked around it as we always do.

One of the highlights of my summer was attending part of the Poetry Carousel at Abbot Hall Hotel in Grange over sands. I had workshops from the wonderful Clare Shaw and William Letford. Clare’s workshop was themed on natural disasters. It was an extremely interesting way to write, applying disasters to everyday emotional and physical struggles. With Billy we talked about Journalling. I journal every day. It helps with my recall and tells me what I need to do that day because I keep lists. It was very interesting to hear other people’s opinions on journalling, as for me it is essential. Some people kept one on and off. I don’t think I’d be able to function without my journal!

I went down to Devon on holiday with my family. We visited the beautiful city of Exeter and did some shopping. In the Waterstones I picked up a copy of Milk and Honey by Rupi Kaur. I had heard many good things about this collection – and I was not disappointed. It talks about the sexual abuse she suffered as a child, her sexual experiences in a relationship and her feelings after break up. She uses imagery that is so delicate and bold at the same time. One of my favourite, and perhaps not seen as hugely delicate, lines within the book was

“who tricked you

into believing

another person

was meant to complete you

when the most they do is complement”.

 

This has personally helped me a lot as I have recently broken up with my relatively short term boyfriend. It still hurt, maybe not as deeply as is if it had lasted longer, but that feeling was still there.

Anyway, back to Devon. My mum and I went on the train to Torquay. Trains and wheelchairs are a nightmare (even though we prebooked assistance that didn’t materialise!). Torquay itself was like being abroad. The promenade was absolutely stunning. It was above twenty eight degrees Celsius while we were there. At home it had been raining for three days straight. That night we got a phone call from our neighbour who was concerned about our lane flooding! Everything was fine though.

The last highlight of this holiday has been the Lakes Alive festival. I worked with the Poetry Takeaway (https://twitter.com/poetrytakeaway?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor ) during the day at Nobles Rest Park. It was one of the most amazing writing experiences I have ever had. I wrote twelve poems during my time there – in one afternoon! If anyone had said that was possible I would have laughed very hard in their face. I met such a huge variety of people and wrote a huge variety of poems. I wrote poems about Lego (requested twice in a row, oddly enough), friendships, holidays and running achievements – all made to order and within around twenty to thirty minutes. Working at the Poetry Takeaway really made me prioritise my time and editing – I usually spend endless hours on one poem. People were thrilled that you had written them a piece of poetry just for them – totally unique that no one else will ever get given.

In the evening I went and performed some poetry under the Moon, an art installation at the Poetry Festival by the artist Luke Jerram. It was an incredible experience. I read some moon related and some non moon related poetry. I couldn’t get over the detail of the moon installation. It was something I have never seen, and probably never will see again.

Thank you to Rob Fraser (www.somewhere-nowhere.com) for the photograph below.

Moon

I also got my AS results which I was very happy with 🙂

 

Poet in Residence Lakes Alive

Awesome announcement!

I have been made this year’s poet in residence at the Lakes Alive festival. I will be busy writing poetry with the lovely people from the Poetry Takeaway on Saturday 27th August 2016. I’ll be busy working in Nobles Rest Park in Kendal between 12pm and 5pm. Pop along!

Later on I will be sharing some of the work I have written that day at St Thomas Church in Kendal. At the moment it looks like I will be sharing a slot between 6.30pm and 7pm. There will be a stunning 7 metre moon suspended in the performance space created by the artist Luke Jerram. People will be performing until 8pm.

Look forward to seeing you all there – I couldn’t be more excited!

There are loads more events going on throughout the weekend, check them out here: http://lakesalive.co.uk/

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Clare Shaw, Kendal Poetry Festival

This was the first time I have ever seen Clare perform live. We have looked at her poems at poetry club in the past and I have read both of her collections – so I knew that I was going to be in for a treat. However, I couldn’t have pre-empted what I received when I watched her perform. She was absolutely amazing. She had the room in the palm of her hand, one second laughing, and in the next crying. I know that sounds like a cliché, but it is genuinely how she made the audience feel.

A particularly memorable part of her performance was when she read one of her poems alongside another poet’s. She was doing this as an emotional response to the shootings in Orlando which had occurred just days earlier. The poems she performed were ‘The Garden of Love’ by William Blake and then without a break her own poem ‘I do not believe in silence’. It was extremely powerful. I noticed several people crying, while others were wiping their eyes.

Clare also performed some of her new poems, about the effect of flooding in her area. To be honest, I don’t usually enjoy poems with subject matters such as this – but with some Clare Shaw magic I was totally captivated.

If you get the opportunity to see Clare live just do it. She is incredible.

#ShoutingBack at Everyday Sexism

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This book has revolutionised my thinking. Seriously. I was wandering through my life thinking that I haven’t really been a victim of sexism – and then I read this book and realised that things I thought had been ‘banter’; or I’d thought I’d been oversensitive about are pretty terrible.

I remember every PE lesson boys plucking my bra – once making it come undone, and my friend had to redo it for me in the middle of the hockey field.

I remember boys taking pictures of my legs on the bus and threatening to post them online. I did report this – thank goodness, but I’ve never thought of that incident in this light. Women are not sexual objects to be taken pictures of without permission. What gives someone that right?

I remember boys shouting that I had a ‘camel toe’ the first time I wore trousers to school.

I remember having to use urban dictionary for a friend whose boyfriend kept on calling her ‘frigid’. We were thirteen and didn’t have a clue.

I remember taking up jogging at the age of fourteen and giving up because the only route I could take was over a motorway bridge. I got honked at by so many lorry drivers.

I remember the relief I felt being offered to trail a kilt at school so that I didn’t have to wear a pencil skirt anymore.

There were other instances which I’m not going to mention. One in particular which was pretty awful.

I can’t believe I just assumed all of these instances to be ‘boys will be boys’, ‘banter’ or just a part of life.

I know my experiences are very minor. But look at the impact these things have had on my life. I hated PE. I was scared on the bus. I am self-conscious about what I wear.

These are just my experiences – and I bet every woman has a story like or worse than the experiences I have had. Why do we put up with this?

Equally, why should men have to put up with inequalities such as the presumption that they can’t care for children alone. Why are little children told to ‘man up’ and ‘stop acting like a girl’? Why are men facing discrimination when they become nurses or hairdressers?

I would firmly press a copy of this book into anyone’s hand. Everyone must read this book.

Barriers need to be broken. This needs to stop.

Yeonmi Park – Escaping North Korea

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Before I start this post I would just like to say that I found Yeonmi to be such an inspirational person I decided to write a poem about her journey. It is, of course, dedicated to Yeonmi but also to the millions of people under the North Korean regime.

I first read Yeonmi’s book ‘In order to live’ after I noticed it creeping up the Amazon bestsellers with hundreds of amazing reviews. What instantly struck me about this book is that Yeonmi says in a sentence what some people would write a whole book about – that is how much she has been through.

Having read the book I found it so amazing to see such a huge Human Rights activist right in front of me. She highlighted that there are so many Human rights abuses in North Korea – from no free speech to no right of free movement. She did say that there are limited but very important things that people can do to help the situation if they feel they want to help:

  1. Petition the Chinese government to accept North Korean refugees as Political Refugees
  2. Petition the Chinese government to stop sending North Korean refugees back – to possible death or prison camps
  3. Educate yourself. The everyday reality of life in North Korea is not hugely talked about.
  4. Educate your friends. Discuss the issues and make others aware.
  5. If you feel that you would like to, research organisations that are working to get information into North Korea. For example, Yeonmi talked about an organisation that throws pen drives filled with information over the Chinese border and into North Korea.

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Yeonmi talked about her childhood – she spent a month aged eight without her mother or proper food during famine. Her desperation for a ‘bucket of bread’. Escaping over the border with her mother. Sexual abuse aged only thirteen. Having to hide in China. Making the trek through the Gobi desert to Mongolia. Learning South Korean culture. Her educational successes.

She was so lovely when I got the opportunity to speak with her after the event. All she wants is to see a free North Korea. She talked about the death threats that she receives over Twitter and YouTube from North Korea. When asked if this scared her she just replied “If I was in North Korea right now I would be dead, I just live every day the best I can”.

Yeonmi is now studying for a degree in Finance in America, and working as a Human Rights Activist. This woman is so incredibly strong, She has come from a background where she thought that the ‘birds and mice’ would hear her and report her. A background where she thought the ‘Dear Leader’ controlled the weather. Just look at her now!

In dedication to the millions still trapped in North Korea

A life outside

My brain exhales after

fifteen years holding

thoughts in.

 

It sinks into a sofa the

Kims don’t control –

southern leather holding

my skin.

 

Choices fizz against my

tongue like sherbet – too

overwhelmed by

 

14 different brands of rice.

 

I nurture the seeds of my

new mind.

 

I am a teacher

marking work. That was

wrong and

 

this is right.

 

Prem Baby Hats – for a year!

I left hospital after a six month stay almost exactly a year ago. I am so grateful to live in a country where I am not now fighting with my insurer, or saddled with hundreds of thousands of pounds of debt. I am so lucky to have the medications I need supplied to me.
I wanted to do something as a little ‘thank you’ to the health service. So I decided to knit premature baby hats. I found the charity Baby Beanies online and decided to get in contact. This charity accepts donations of hats and distributes them to where they are most needed. I even received an email from the lady running it to tell me where they were sent!
I decided that I wanted to knit as many hats as the days I had been in hospital. When I worked the number of days out online I was in hospital for 162 days. That’s a long time. Also, that’s a lot of hats…
However, I have managed to knit a grand total of 179 hats! I still have a few left to send off. I don’t think I’m going to stop knitting them – to be honest I’m quite addicted.
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