I’m going to begin this post by saying how good I am feeling. My health is still rubbish, but in myself I am feeling so much happier. This, in part, is due to some hard work and medication, but also the unconditional support offered by many of you. Thank you.

I have been in need of two operations for around 18 months now. These operations have been delayed for numerous reasons, but I have waited patiently because the hospital I use is one of the best in the country, and so I have to accept the complication of long waiting lists for non urgent operations. From the view of the hospital, it hasn’t been 18 months, because I was referred for a (failed) operation at another hospital. Anyway, I have some progress to report! I have a surgeon clinic appointment in mid August. This isn’t a guarantee, however, because the last time I got an appointment it was cancelled on the day, when we had already arrived…

Work wise I have been rather busy! I’m the Guest Blogger for St Mary’s Hospice, Ulverston, using their platform to discuss issues surrounding Palliative Care, end of life and life limiting illness. My first blog post discusses the grieving process which surrounds the diagnosis of a degenerative condition, the fact that this is cyclical and that there are always new components of self to grieve. If you would like to read it, please click the pink underlined words above.

In other news I have been invited to join the editorial team of the Student Pages magazine, with a particular focus on Literary/ Literacy segments. This is an exciting time and I am looking forward to getting to work!

I went down to London in June, to the awards ceremony of The Wicked Young Writers Awards 2019. I have entered these awards every year since its conception nine years ago, this year being my first year in the final. The theatre, after some assistance from a very helpful friend (thank you! You know who you are!) was accessible, so I was able to be onstage with everyone else. I was announced as the RUNNER UP in the For Good category for my essay on Hospice and Personal Experience. You can read it here on page 186. I feel humbled to have gotten so far in this award, because there were over 4,500 entries into the competition. Not only that, but I met Cressida Cowell (author of How To Train Your Dragon) who also tweeted me after the ceremony. That evening mum and I saw Wicked the Musical, which looked at the theme of complexities behind a seemingly clear cut situation. The theatre as a whole became part of the lighting and set.

I have also finished my Breakthrough Graphic Novel Script! I am so excited to be working with the uber talented illustrator Michael Lightfoot, who will be bringing my script to life on the page. If you would like to hear the clip from the occasion I was on Smooth Radio discussing Breakthrough here.

I can’t leave out one lovely new addition from this post. Kim and Chris Anderson welcomed New Baby Ally nine weeks ago. She’s such a gorgeous little dot. I went to see them all when Ally and the family when she was very new, as pictured.

In reflection of all of this, and relating to the title, I realise how much illness has given me despite taking so much. It has allowed me the space and opportunity to develop my skills and embark on a career I didn’t think possible. It has meant that I have spend a lot of time doing procedures and sat in hospital waiting rooms; but illness has also forced me to reevaluate my previously seemingly ‘concrete’ choices.

Hi everyone! It’s been a very long time since I have been able to post on here – and oh boy has a lot happened.

You may remember I had an unsuccessful operation on New Years Eve, well – there was yet more to come from that. My operation was to create a puncture in to my bowel in order to insert a feeding tube inside of it. Unfortunately, this didn’t work. Fast forward a month on, and I am being rushed in to the Royal Lancaster Infirmary with suspected clots in my lungs (very bad news) – thankfully I didn’t have that…. However, my chest X-ray did pick something untoward up, and so I had to go back to hospital and have a chest, thorax and pelvis CT scan. I’m not a big fan of loads of radiation, (because all I can think of is my ovaries frying) but I knew I had to have this scan. It turns out that I have a perforated bowel (a hole which hasn’t sealed up in the bowel = very bad news). Usually, a perforated bowel comes along with something called peritonitis, which is essentially bowel contents (ew…) floating around and infecting your body, and then blood stream (sepsis) and putting you in a life threatening situation. Prior to my operation, I decided to take precautions against this (LAXATIVES, MANY LAXATIVES). Thank god I did as I didn’t get the infection. I know have a large pocket of air moving freely inside my abdomen… It’s called a pneumoperitoneum (You know you’re too medicalised when you spell THAT right first time) lodged under my right lung. It makes sense why I’ve been so out of breath, I guess! I decided not to tell anyone about this at the time, because basically: I’m okay! I’ve just been resting up, and the air should dissipate naturally some time in the future. It’s a pretty rare phenomenon, and I’m just SO lucky that I didn’t get the infection that could have gone along with it…

You may be aware that I haven’t been online very much, if at all. I have been struggling to keep my brain in check, and the internet doesn’t help much. I’ve been feeling quite depressed, and EVERYTHING has been difficult. Down to the thought of going on YouTube, and the idea that other people are posting and I’m not – which has meant that I have been having small panic attacks. Other than catching up on jobs, and doing things I’m slowly finding enjoyable again, I’ve kept pretty much away. I think it’s important that I finally give myself long enough away to start getting better. You may remember the multiple videos I’ve said “I’m back!” Only to disappear again. If anyone comments on here or on Facebook/ Twitter/ YouTube, I will not be replying, but I do read them all. I’ve also been tinkering with some of my medication as well. I’m on a lot of nerve pain medication and some muscle relaxants due to the realities of my condition. However, these have made me feel rather numb and just ‘flat’ in general. I have reduced these and despite the physical pain coming back with a vengeance, I feel like I’ve got a brain I can write poems with and y’know, just generally function alongside, which is always a plus.

I haven’t been doing a whole lot other than surviving of late. I’ve written some poetry. Watched a lot of Brooklyn 99 on Netflix, and am generally trying my best not to be too hard on myself. It’s been so difficult because I have always been, since a young age, hard on myself. I’ve always had this anxious and self-deprecating ideas about myself, and I’m working on shutting them up! I’m very aware that I have been shutting my friends out – but I really need to get sorted out.

I did, however, go to the Ways with Words festival in Keswick a few weeks ago. It was an incredible thing. Robin Ince, the comedian, has just released a book and it was like he was actually speaking to me through what he was saying on stage. The feeling of burnout. Depression. The difference between public and private life. The session was only an hour but it definitely should have been longer. Then, at the other end of the scale I saw John Simpson, the BBC foreign correspondent, talking about his new fiction book. The book itself sounded intriguing, but along with the background story it will make for very interesting reading. He told the audience that one of his close friends, a journalist in the 90s, was found dead with an injected orange in his mouth, on his kitchen table in an apparent sex game gone wrong. John began speaking with a Russian Journalist, and they said three other journalists covering the Russian Government were found dead in exactly the same way. John said that he isn’t saying that the Russian Government were the cause of his friends’ demise, he simply wants to offer another narrative surrounding his friends death.

If anyone would like to read about the transformative powers of poetry within my life, I have done a guest blog post over on Diary of A Zebra for World Poetry Day, if you fancy a read. https://www.diaryofazebra.com/2019/03/guest-post-by-hannah-for-world-poetry.html

I am also giving a talk at Lancaster (UK) Litfest about how to start a YouTube channel, and how to enjoy the process. I hope some of you can come along, there are tickets still available both online and on the door.

A lot has happened over the last three months, some are very positive changes. Firstly, I want to say thanks so much everyone who signed, shared and retweeted the petition. I am so happy to say that yourselves and my doctor now mean that I have Entonox at home! My hope for the petition was that the CCG would recognise that Entonox should be prescribed for all palliative care patients in my area – but the medication license I was granted was for individual use, meaning that while I have set a precedent, this is not something that is easily be prescribed by hospice doctors currently, even after this battle. Anyone needing it will have to go through the same process I have just been through, which takes six months plus. I am cooking up a plan trying to change licensing rules across England… so stay tuned. However, on a personal note I just wanted to tell you that Entonox has helped me an awful lot so far, so I am very grateful.

The last few months have been incredible in many ways. I was nominated for Cumbrian Woman of the Year and attended a lovely award ceremony.

I also read my poetry at the Creative Connections conference, which is an event I would love to go to again next year, it was very interesting. Kristyna Baczynski, an incredible artist, drew the below while I was talking. She was archiving the whole thing on the window at the back of the room! You can follow her at @kbaczynski on twitter.

One of my poems has been featured in a magazine called Tangereen, it’s a childrens fashion magazine run by Junior Style, linked here.

I have also won the young poets prize in the poem and a pint competition for 2018, with my poem Grandad, about my grandfather who passed away. Linked here .

My poetry Pamphlet Dear Body received this review from Under the Radar Magazine, which I am very happy with. If you’d like a copy of the pamphlet, it is available in the ‘shop’ tab.

Other good news is that I FINALLY have an operation date! I am due to go in to hospital on the 30^th of December, and have my operation on the morning of new years eve. I have to say I am particularly nervous about this one. This operation should be a single overnight for most people – but because of my complex health it is thought that I will be in hospital for a fair bit longer than that. I have had a feeding tube on my face for the last seven/ eight months. I am SO looking forward to having my face back! At the minute I can’t moisturise because it means the dressing won’t stick down. I am desperate to get my skin back and give it a good cleanse!

The last time I went to this hospital (it isn’t my usual one) things went wrong, so I am quite scared (being honest) about going back in there. It would be so lovely if you would send me a card to read while I am in hospital. The address is:

I have been trailing a new set of medications over the last few months to try and raise my blood pressure, but also lower my racing (asleep or awake) heart rate of 140 beats per minute (bpm) or more. I know quite a lot of people may not be interested in this, but it would have been really useful information for me to stumble across so I am hoping it could help someone out. The first one was Midodrine – this raised my blood pressure amazingly in the first week, but after that I began having blood in my stools (too much information, I know) related to when I took this medication. We have talked to my lovely gastroenterologist about this and we all think that because midodrine is a vaso-constrictor (it stops your veins and arteries from having any stretch), the vessels in my bowel are either constricting too much or my bowel can’t function with a restricted supply of blood. Then, I moved on to a medication called Ivabradine. This medication was to calm my heart down to a more reasonable 95 bpm. However, it gave me a migraine every single day. I usually have a migraine around once a month – so this was completely debilitating. Finally, my wonderful cardiologist put me on a Beta Blocker called Propranolol. At the minute it is the best medication I have tried. It does lower, instead of raise, my blood pressure, but it calms my tachycardia down, so if I creep around very carefully this is definitely the best one for me. It does have the downside that it makes me fall asleep for three hours after taking it – so I take it early morning and in the evening. Finding the right dosage has been hard because I have spent many more hours unconscious than I would have wanted to.

So. I’m back!

I hope you’ve noticed the fancy face lift I have given this place, and the updated bio on the ‘home’ page.

First off, ‘Dear Body’, my poetry pamphlet received two extremely favourable reviews in both Acumen poetry magazine and the London Grip magazine. Acumen poetry magazine said “This is a moving and salutary poetry collection, the poems precise and controlled, expressive without excess or sentimentality. It contains valuable lessons for those of us fortunate enough to live without such imprisoning health problems.”  An excerpt from the review on London Grip magazine started  “This short collection of twenty-two poems explores the duality of mind and body, separated and brought into conflict by physical illness. The poems are written with an expressive cathartic tone, a unique and wit-ridden perspective and a resilient refusal to be overcome.” Dear Body is available for purchase in the ‘shop’ tab. If you click on the London Grip you can read the full review.

As I write, I am attempting to set up a charity! There is a huge gap between

My health has been keeping me rather busy. I have 15 diagnosis’ now, and one possible pending. I feel like my illnesses’ have become dominoes and I’m getting a fair way through the set! One reason I have had to slow down is that I have had a constant tachycardia (high pulse) of 130+, whether I have been sitting, standing or sleeping. That was caused by POTs syndrome, and general illness getting worse. It is being slightly controlled by a new medication I am trialling. But guess what? Another freak thing was picked up on my ECG. A T-Wave inversion. It was most likely caused by the flu virus attacking my heart, and is a variation of myocarditis. Odd, eh? I thought I was now un-shockable, but my body finds ways to keep me on my toes.

I am now the proud owner of pink hearing aids with glittery moulds. You can see them at fifty paces, but moulds offer me much better sound quality and the option to put them in myself; which proved impossible with the more discreet models on offer.

Thank you to everyone who has shared my petition. I am extremely grateful to everyone who has signed and shared it. The decision is being appealed at a local level. The sad fact is, if I moved 40 minutes down the road I could be prescribed it tomorrow. I am hoping it will be prescribed after appeal, because my dislocations are really getting me down at the moment. I feel a tad bitter, really. The fact that I put my own dislocations back in is playing against me, because if I was in A+E every two to three weeks, spending thousands of pounds in NHS funds, managers would be desperate to stop those attendances. As a palliative care patient, and just general human, I do not want to be going and sitting in A+E up to twice a month, and certainly don’t want to wait hours for someone else to put my joint back in. The other day my shoulder started to sublux for the first time. Mum and I just put it in a sling, and just prayed (well, sort of. I’m not overly religious anymore) it wouldn’t fully go out of the joint. Thankfully, it didn’t. My right knee is playing up big style though, with even small subluxes (partial dislocations) causing huge pain and huge bruises. If you know anyone of influence, or know anyone who can circulate the petition, it is linked here.

Going back to poetry related news, I have had a few fun things happen. I have won the Young Persons Prize in the Poem and a Pint competition with a poem called ‘Grandad’. It is about my grandfather who passed away when I was eight years old. I have had a poem selected for the upcoming Cumbrian Poetry anthology published by Happenstance Press. I have also had a poem selected to promote the Kendal Poetry festival, and to be included in Poetry First Aid kits. I am now a member of the writing squad, an organisation that mentors the best young writers in the north west. I am extremely excited to have been chosen, and having only been to one meeting I have already made some valuable contacts, and met some lovely people.

A few months ago I started attending a new hospice for respite. We decided to make the switch because the old one, very sadly, wasn’t meeting my needs. The new hospice is a very different environment (I have graduated from kids to an adult set up), but offers me the complete rest and recoup I need. Hospices are very special places, if you or a family member ever need one please don’t be scared to go. The services they offer are so personal and incredible. Hospices’ very often have extremely tasty café’s (I have it on good authority!) that are open to the public. None of us can know if the money raised will be needed for our own care in the future.

We have also managed to get to Manchester and attend a few shows, including Sister Act, Hairspray and my guilty pleasure the Dancing on Ice tour.

I will also be the blogger in residence at the Kendal Poetry festival which kicks off with the open mic (tomorrow night, 6^th September 2018). You can see a full programme and book tickets to any events by clicking here.

Well, considering I feel like I have done nothing over the last six months, it actually seems like I have done a fair bit!

I’d like to leave you with the words of the late Claire Wineland. Clare grew up knowing that she was going to die young due to cystic fibrosis. She had a lung transplant last week which was a success in itself, but unfortunately 24 hours later she suffered a huge stroke, and then passed away – at just 21. Claire is the reason I decided it was okay to talk about palliative care on YouTube, and was extremely wise beyond her years. “Go enjoy your life. Really. I mean that seriously. Go enjoy it. ‘Cause there are people fighting like hell for it.”

Hello everyone!

I am very busy at the moment, which is lovely. I’m going to start with something that has come as quite a shock. I have been having problems with my ears for a good few years now, and so got referred to an audiologist at a North West centre of excellence. I have been on sprays and god only knows how many other things, and if I am honest, I was expecting the specialist to just put me on another one and send me on my way. However, I had a hearing test which found that I need hearing aids. They think that my hearing loss has been caused by my ongoing nervous system disorders, and the only treatment that they can offer me is Hearing Aids. It is the first time that mum and I have sat in stunned silence after receiving a diagnosis. With my others they have been so expected because they have been so severe. Other diagnosis’ have been a relief, like we can build on that solid information, but this feels like a huge punch in the stomach; and is definite confirmation that no nerve is safe inside my body! I have noticed I can’t hear in groups, and that I have to have my television on louder than most, but it just hasn’t been a priority in the grand scheme of appointments. If you see me out and about I’m not sure if I am ready to talk about this yet (if you don’t want me to turn in to a crying mess that is), but give me a week or so and I will be back to my normal positive self.

This week I am blogging from the Words by the water festival in Keswick. They have very kindly given me a pass, so I am going to be learning a lot from the huge array of speakers. I will be blogging on the festival blog, so will share any links on social media. I was invited to the festival launch last night, which gives me a very positive feeling for the rest of the week. I came to the festival last year, and learned so much. Last year I could only attend the weekend events, but I am now in the fortunate position that I don’t have anything fixed Monday to Friday, so can stay all week.

If anyone reading this has gastrointestinal issues like myself, I would love to point you towards Hannah Witton’s channel. Hannah recently got a stoma bag due to her Ulcerative Colitis. Her positivity in the face of such a daunting life change has been really inspiring to me. When I say inspiring, I do not mean this in a ‘person who lives with a challenge is amazing because they live with a challenge’ way; I mean this in a ‘person has a life changing condition but starts a conversation around the issues’ way – because lets be honest –  If we had heart failure, or liver failure or if any other organ was failing we would feel no embarrassment in sharing the ins and outs, but because our conditions manifest themselves in the bowel it can be difficult. Hannah tackles the subject head on in her video called ‘I have ulcerative collitis’, with the thumbnail ‘lets talk about poo’! Hannah has helped to take the fear out of having a stoma bag for me. At some stage my condition will probably deteriorate to the extent that I need a colostomy or ileostomy, but seeing that while things have been difficult they have been manageable makes me less anxious about the future.

While I am shouting out YouTube channels, Jessica Kellgren-Fozard has taken the unknown element out of me needing hearing aids. I would thoroughly recommend her videos on disability and illness as they are so informative, and just generally friendly. She also makes videos on hairstyles which have been a life saver for me, as they are designed for the days when I have no energy.