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!

 

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!)

 

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!

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.

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.

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.