Saturday night fever (literally)

So I didn’t update my blog on Wednesday as I had planned. I have a really bad infection in my stomach around my feeding tube which is beyond painful. I am on very strong antibiotics though, so hopefully I will be sorted soon. It has completely taken it out of me – I don’t even have the energy to write poems!! I am really, really hoping to swerve having to go to hospital, but we will see.

I am feeling a lot better emotionally than I did in my last post. I have been taking time out to paint my nails and put hand lotion on. Very simple, but very effective in helping to raise mood.

Mum and I went to Manchester last week. We had an amazing time. Getting all the medical stuff I have to do in a day is very difficult in a hotel room, but we have decided to just do things as my condition is degenerative. We went to see Sister Act with Alexandra Burke in it. It was incredible. The stage was awash with the best harmonies ever. I haven’t watched the original film I now really want to. We also looked around the Trafford Centre and met up with our best joint friend who mum trained to be a nurse with 30 years ago! It was lovely.

Sorry this is very short, I feel a bit shocking so I’m going to leave it here. See you next week, hopefully feeling a bit better!

Hospice,Manicure, baking and MRI scan

Hello all! I’m still a little down, if I am honest, but am on my way up again! This week I have been at the hospice for a night. It gave mum some much needed respite. While there I had such some amazing experiences. I had a manicure, pedicure and glitter tattoo thanks to a very lovely local beauty business owner. She spent two hours chatting and laughing with me, and gave me the most gorgeous nails. I wasn’t convinced they would last long due to all the syringes and stuff I use, but the paint on my fingernails lasted a week, and the stuff on my toes is still going strong! I also got a glitter tattoo of some butterflies surrounding a watering can. It was so pretty!

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We also baked bread using melted ice cream. It’s something I’d seen on one of those thirty second facebook videos so we decided to give it a go. All that was in the recipe was melted ice cream and self raising flour. It had the appearance of an eggless cake – I can’t verify this myself because I couldn’t eat any, but everyone said they were rather tasty.

I made a lot of gorgeous bracelets while there as well. My visit has really reignited my passion for crafting, which has been helping me destress. I have been making beads which you bake in the oven ever since coming home!

Jumping back to being at the hospice, I made some candles! We put wax and lots of oils all together. If I’m honest I can’t say that they smell of much now that I have got them home and am burning them, but the process was so fun!

I had an MRI scan today, I get the results at my next appointment. I’m quite anxious about it, and looking deeper into my feeling of sadness the last couple of weeks I guess I am just anxious to know what the result is.

I went to Botany Bay yesterday. It’s one of those places we northerners pass all of the time and always say we will bob into. It’s an old factory that has been converted into a HUGE retail outlet. It was amazing. Nothing was overpriced and they had everything you could ever think of! There were second hand items, home ware, gifts, a sweet shop, cafe, homemade cake stalls, furniture – everything! I loved it and really want to go back soon! I bumped into one of my old friends in school. She told me she had got a 2:1 in her first year of uni and was excited about her second. When I was at school I was a bit sad, to be honest, to see all of my friends spreading their wings and flying away. Now though, I feel like I have things to say back that are equally as exciting. For example, Poetry Salzburg is going to publish three of my poems in the autumn and I begin my mentoring with Clare Shaw next month. I also have three projects up my sleeve that I’m not allowed to talk about yet!

From Monday to Sunday this week I am participating in the BookTubeAThon, a Readathon whereby you have to complete a certain amount of challenges. I’m having quite a medical heavy week, so am struggling but LOVING it.

I have also been chatting so much with a fellow BookTuber who has become one of my closest friends. We chat every day and have Skyped twice (will be three times tomorrow!). We don’t stop nattering the whole time. I wish we lived nearer to one another, but Skype means so much to me right now!

 

Where I’ve been the last two weeks…

So I stopped the Wednesday streak, which I am kind of gutted about but hey ho.

 

Where I’ve been for two weeks…So, hello! I haven’t been blogging for the last two Wednesdays because I haven’t had a minute! Life has been mad from both a medical and general life perspective, but things are getting back on an even keel now. If I’m honest I have been feeling a bit down, but I’m on my way back up again now. So tracking back two weeks ago, I had a bad reaction to a new drug I was trailing AND a POTS attack after the Poetry Business winners pamphlet launch in Grasmere. That feels a lot longer than two weeks ago. Anyway, I do apologise if I met you for the first time that day, I was really quite ill! I ended up having a very long faint which lasted in excess of 45 minutes. My POTs just seems generally worse over the last few weeks, even after the medication had worn off. During the occasion in Grasmere and also subsequent occasions, I have had to recline my chair in the car as far as it will go, and put my feet on the dashboard. I hate it. I’ve also had a virus recently, so really haven’t been capable of blogging (thought I’d get my excuses in quickly…).

 

I went to Edinburgh on holiday with my family. It was so wonderful to reconnect and actually have some time just to breathe. It was a huge novelty to even be watching a film together in the evenings, as I need to be in bed. We had a suite which made it possible for us all to be together. We watched Sing! Which is an animation – and much funnier than many ‘comedy’ movies I have seen of late. Although Edinburgh isn’t the most accessible of places, we had a fabulous time. We visited Hollyrood Palace, one of the queens residencies, the botanical gardens and shopped Princes street. It was the complete rest our family needed.

 

Finally, I went to see Little Mix a few days ago! I went with mum to see them in Carlisle. They were incredible! We were in a wheelchair bay, so despite the outdoor venue we had a slightly raised view. The music was so loud I could feel it through my wheelchair- never mind my chest! The dance routines were incredible and I knew every single one of the songs off by heart. It’s the best concert both mum and I have been to. They were supported by Sheppard and Ella Eyre – who were also amazing. The disabled access was seamless and really, really well thought out! There was a separate disabled entrance to prevent crushing, a disabled toilet right night to the disabled access and a brilliant view from the wheelchair bay.

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Sorry this wasn’t very long, I’m trying to get back in to this again! I needed some time away just to get some things sorted. I’ve also hit my one year blog anniversary (where has that time gone?!!), which means I have been home from hospital after initial diagnosis for two years.

 

Freedom, Hospice and Livestock

So, this is it. This is the first blog post in which I call myself a freelance writer. That’s amazing! The “free” in freelance is very prominent here, as I haven’t actually been paid for any of my poetry work yet – but so many exciting things have happened this week with my writing that I can’t talk about yet, but that it has been a HUGE encouragement.

This is a bittersweet moment, a life change. There is no way that I would have met the wonderful poetry community, or started by own BookTube channel without being ill; but I would give anything not to be ill. Finding the positives in illness is one way I have kept myself going through two years surrounded by a lot of negatives. A lot of things have happened that I haven’t mentioned on here, these things have been very stressful, and I am so pleased that mum and I can start our “new lives” as we call it – with so much freedom. You may look at my level of freedom and scoff. I still spend at least 14-16 hours a day in bed, I still need assistance with easy tasks BUT now I get to choose how I spend every single minute of my non medical time. That is liberating.

I have been at the Hospice for a few nights this week. It’s like a home from home environment, the staff are beyond wonderful and help me so, so much – both physically and emotionally. They are so kind and just want to help me any way that they can. As many of you who know me already know, I struggle a HUGE amount with dizziness, have machines and wheelchairs . The wonderful staff here take it in their stride. I really needed them in my life, they are so bubbly and really pick me up. I’m not saying that I am down, it is just so wonderful to feel safe and happy away from home AND receive impeccable medical care at the same time. I have been doing jewellery making, using lots of stickers and colouring in with my gel pens. We went to a huge town today and went shopping. I really struggled to keep my eyes open, but I managed it (let’s not count the minibus there and back!) and bought loads of sparkly glitter washi tape and a gorgeous photo album.

I got sent a copy of Livestock by Hannah Berry to review about a week ago. I have just put it down and it is possibly the best thing that I have read this year. It is political satire at its very best, and shines a light on the control of what media we actually get to consume, as well as what is hurriedly buried… Buy it. Read it. You won’t regret it!

 

Funding help, Kendal Poetry festival and Exams!

It’s been an eventful day – hence the very late blog post (I’ve still managed to post on a Wednesday though!). I’ve had so many telephone conversations today to do with health care, it has been a day where I have wished that we could unplug the phones. We have secured some funding for my care, but it’s nothing like what we have asked for. So we have had people on the phone apologising but not apologising at all. It has taken six months to secure this small slice of funding. We have fought tooth and nail and have run out of steam with everything, so luckily we now have reinforcements in the form of Tim Farrons team. They have taken over my case and the relief I feel is huge. The movement I have seen in my complaint in the last week since they have been involved has been more than I have seen in the last six months! The specific funding I am applying for is for people who are very vulnerable in society. I have never felt so stressed about anything in my life – which surely highlights a flaw in our system. Surely securing funding for our most ill and vulnerable should be an easy ride? I have never been political on this blog before, but I’m afraid to say it is a sign of a Tory run NHS – constantly looking for areas to cut back on, from staffing to deal with the initial funding request to the actual funding itself.

It has been very hot across Britain this week. This means my POTs (very low blood pressure and racing pulse) has been pretty horrendous and I have been blacking out. Once I have a black out I can’t get warm again and mum has had to get my winter duvet out so I could snuggle under it to get my blood pressure back up- on a 26 degree day!

It was Kendal poetry festival this weekend. My more detailed thoughts on this will be going up on the Kendal Poetry Festival blog very soon, but I had a fabulous weekend. The poets I saw were amazing, and when I read my own work I got some lovely, in fact beyond lovely, comments from audience members. Linda Gregerson dedicated two of her poems to me – but unfortunately I had to go home early because I was feeling pretty poorly, so didn’t get to see her perform! I am gutted, but emailed Linda to thank her and she sent me the poems in question – which left a lump in the back of my throat. Well done to Kim and Pauline for pulling off yet another stunner of a festival. (Thanks to Martin Copley for the pic!)

 

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Speaking of Pauline, for those of you who don’t know Pauline has released a wonderful new pamphlet called Image Junkie with Wayleave Press. I received a review copy of this (video on my YouTube channel coming up soon!), and there are some wonderful poems in there. I only found out the other day that this was her first pamphlet, and bloody hell Po, you and Mike have pulled it out of the bag with this one! (No, it’s not a typo, Po is Paulines nickname, just so you know…)

I have been revising for my exam on Friday. It has been quite surreal really, one minute revising a procedure and the next minute actually having it! I study health and social care, which is actually more difficult than anyone gives credit for. You have to mention specific names and items used in a procedure otherwise you get no marks – even if you describe performing the procedure correctly.

My desk has lots of lovely review copies of books for me to review when I have finished my exam, so I am especially desperate to get everything done and dusted!

Important reading, 1k and book shopping

This week I am overwhelmed to say that I have hit 1,100 followers on YouTube. I can’t believe that something I enjoy doing so much, and something I get so much joy from, is yielding so many results. I started BookTube because I felt lonely. This was compounded this week as a close friend cancelled on me at the very last minute. I am so privileged to be allowed to talk about my passions so freely – poetry, fiction and disability awareness; and just cannot believe that people want to watch the content that I put up! I am getting a lot from doing these videos. It has been a brilliant way of bottling a feeling of how I react to a book – so physical rather than reading how I felt about it (I have memory problems).

I say that a close friend cancelled on me, but another wonderful friend took me to a huge second hand bookshop this week, where I picked up some really unique poetry collections at cut down prices. This friend also bought me a very special gift, the completed works of the poet Stevie Smith. The book is over 700 pages long, and I am loving being completely immersed in her work. I am not usually in to rhyming poetry, but these compact poems are so clever I almost instantaneously fell in love with them. I know this friend will probably be reading, so I just want to say that I really needed that little outing. It made me feel so much more centred and grounded again, so thank you.

I went to see the neurologist this week. I’ve had some symptoms cropping up so I am going to have an MRI scan of the brain. We are all fairly convinced that my symptoms are related to the deterioration of the conditions we already know I have, but just to be certain I am getting a quick scan.

I’ve been revising (still!) this week. I actually the scientific principles of how an MRI scan works thanks to this revision! It is all related to Water molecules, protons, radio waves and X-rays. Very clever stuff. My exam is inching nearer, and I am just doing the very best that I can. I have missed a very significant amount of school in the last year, but all I can do is try my very best.

I went to Brewery Poets and Dove Cottage Young Poets on Friday. I really enjoyed this full on poetry marathon and always get a lot out of each of these sessions. We are putting together the final preparations for this years poetry festival, which is very exciting – it’s only two days away! If you head over to the Kendal Poetry Festival website you will see the final five minute interview I have conducted, this time with Malcolm the owner of all writers’ favourite shop Iridium.

I went through to see my grandma and grandad today. They are so lovely and talking to them, despite arguing about politics and then agreeing to disagree (even though I was right hehe). I am so very lucky to have such loving and steady grandparents who have been supportive of me since day one. They also have a wicked sense of humour. They have been married fifty years and the banter is still real.

I have read two books this week. The first, See how they Lie by Sue Wallman was about the daughter of a psychiatrist that runs the best facility for adolescent mental health problems in America, however, everything is not as idyllic as it seems… The second book I read was I have no secrets by Peggy Joelson. I loved this book, and needed to be written. It centres around Jemma, who is quadriplegic and has cerebral palsy. This also means she cannot communicate, but can think just as you or I could. This book looks at issues of psychological abuse, amazing mother daughter relationships and the importance of treating those in a wheelchair just as you would any other young person.

Orthotics, Poetry Launch and Revision

This week has been another busy one, although we are still waiting for funding, services seem to be clicking into place which is such a relief. I went to see the palliative care doctor this week. He suggested a drug that may be able to help a little of my pain. If you could all send your good vibes this way I would be really grateful – hopefully this time will be my lucky break and it will take the edge off.

I also went and had an orthotics assessment. This is where you go to see if any splints or supports may be beneficial to help pain. My condition is now affecting my joints, and I have been getting considerable amounts of pain in them. So, I went to Preston Hospital and saw the most wonderful Occupational Therapy team. I am beyond grateful to my local OT for referring me there because my goodness did they know their stuff! I have been given two splints for my feet to be used for a few hours at night. These splints straighten a muscle that I can’t remember the name of, and will prevent problems with said muscle in the future. I have also been given two wrist splints to wear when I am working. So, right now I am wearing two wrist splints. They have been a little difficult to get used to when typing, but are so worth it. Yesterday I edited a video and typed loads of emails, and had only a small amount of pain in these joints at the end of the day! Let me tell you, when joint pain has been keeping you awake at night it is definitely worth looking like you have fractured your wrists during the day time! I have also been given some splints called Oval 8’s. These are finger splints to prevent my fingers from hyperflexing. I didn’t realise how often I hyperflex my fingers without realising it! They have also really helped in pain reduction.

I went to Katie Hale’s pamphlet launch on Friday! It was such a lovely atmosphere in the Old Firestation in Penrith. I thought it would be freezing in there but it was actually really warm and I loved the set up of sofas. Katie read her poems beautifully, and I loved that she told us the intriguing backstories to the poems before she read them. When I first met Katie about a year and a half ago I remember reading her poems and thinking ‘how does she not have a pamphlet out?’. I am so over the moon for her that this has all finally happened! I read a few poems at her launch, along with fellow Dove Cottage Young Poet Emily Asquith, and sat back soaking in poetry all evening. It was fab.

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I am still loving making YouTube videos. I made one this week talking about some amazing poetry collections that I have read recently that have got me completely overexcited for the poetry festival as the poets I mentioned are coming! You can watch it by clicking HERE.  We are now nine days away from the poetry festival, and tickets are selling quickly so if you want to come to an event booking would be really sensible.

We are having an adapted bathroom done in our house. It has been going on for a fair few weeks now, and mum and I are really ready for the wet room. I have been fainting nearly every single time I have a shower. Hopefully the wet room will help with the situation, but the house is completely upside down while the contractors do their last bits. Mum and I went out yesterday just to sit in the library and get on with a little work because it was driving mum mildly crazy. I haven’t seen the bathroom yet but mum says it is lovely and will be fabulous when completed.

I have ramped up the revision this week, my exam is at the end of the month. The only problem with revision and a poor memory is that not much of it is staying in my brain. I can only do what I can do, I suppose.

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

 

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.