A little free time, VCR tapes and cinema

This week has been an appointment free week (we will ignore today, I have two today!). It has been such a blast of fresh air but busier in most ways. We’ve been doing all of the jobs that have been stacking up. It feels like I work in an office and I’m working through the stack of work dumped on my desk while I’ve been away. This stack mainly consists of revision, which I have been working on, just apparently not quickly enough. It’s kind of rubbish having bad concentration levels, I’m not lacking in the motivation needed, but I have to revise in 20- 30 minute slots otherwise nothing really goes in. It’s annoying because I work really hard! It’s thought to be caused by everything I have going on and associated lack of sleep.

Mum and I managed to break away and go out for short bursts this week. It’s the first time in ages (I’m talking months and months) because my mum has her own issues with her health. We went shopping in Lancaster and it really felt like old times again. It wasn’t the fact we were actually partaking retail therapy, we barely spent anything, it was the fact that we were together and laughing again. We also went to see Lala land at the cinema, which I enjoyed more than I was expecting to. I loved the beginning and the end, but found the middle a bit slow, I did the nod and was nearly asleep. For anyone who has seen it, have you got that piano tune stuck in your head? I love it. Very beautiful.

In a spare hour I found tucked inside my diary I decided to finally get my VCR to DVD software out, and start the mammoth task of converting all of the footage of when my brother and I were tiny into a more modern format. We have a dual DVD and VCR player, considered very modern as DVDs started appearing – now, not so much. I found it quite an emotional experience. It was strange seeing myself running around carefree, and stuffing loads of toffee popcorn into my mouth with a desert spoon at my Great Granny’s eightieth birthday party. It has actually given me quite a bit of perspective. I was born with this neurological condition that I have, but can you imagine if it was as far advanced as it is right now when I was that young? I would have been a little girl who couldn’t run around Happy Mount park, go in the water park or eat ice creams. The reality is that there are so many parents out there that have to follow their toddling kids around with their feeding backpacks, who put feed pumps underneath prams, who watch other children and wish their child could do the same. Yes, my situation is pretty bad, but when I got really poorly I was sixteen, not six. It has shaken me up a bit to think about that.

This last week I listened to “Scarlet says” by Scarlett Moffat on audible. It was written before she won the I’m a celeb jungle. She’s hilarious, I love her on Gogglebox, and although I don’t always agree with her opinions she had me giggling quite a lot. She takes you through the process of a classic night out for her (spoiler: getting very, very drunk) and talks about her life and friends. It’s been a nice light listen while I’ve been so busy! I got it for £1.99, but I won’t buy it full price. She narrates it herself, I love it when authors read their own books because they know them inside and out. The only thing that I didn’t like were the lists dotted throughout the book. Perhaps the editor thought the book was a few pages short and needed some padding…

An alternative service to Audible, and available with both Cumbria and Lancashire libraries is Borrowbox. You enter your online details for your library card and there is a huge selection of audiobooks and eBooks to choose from. It’s saved me from spending my monthly Audiable credit on a really recent release (Small Great Things by Jodi Picoult) so I am really happy. There are loads of books on there and I’m quite excited to use this alongside my Audiable subscription.

Oh well, I’d better stop procrastinating and get my brain back in to gear. It’s been a nice distraction, but I’m afraid I’m going to have to get back to the revision som

Bad book ending, fatigue and furniture

This week has been a nice week. Minimal appointments (only one with a surgeon), some free time (unheard of!) and a feeling that things are moving in the right direction in regards to my care.

I’ve been at school a few times in the last week. It’s quite strange, because I’m only there a few days a week it feels more like an outing or workplace than how school used to feel. School used to feel like it was my whole life, and all my time was used up with it. School felt tight knit and a bubble. I’m keeping on top of my work (miracle) and am enjoying my courses. I wish a levels weren’t so pressured because they are really interesting in their own right.

For the book lovers out there, I’ve put a picture of my new bookcase below.img_1610

It’s what I spent my Christmas money on, so I now have a home for my notebooks and poetry books. Next door I have a small shelf of fiction. I just love it. It definitely shows that adulthood has firmly got a grip on me because I haven’t been so excited about anything in such a long time. Yep, excited about furniture…

I went to my first ever session of Barrow Writers on Saturday, a group run by Kim Moore. I have so many poems on the go now I’m feeling slightly overrun! They’ll all be dealt with and done in time, and it’s a wonderful position to be in. I had an amazing time in that retro community hall. I always feel like you reveal your soul when you read the things you’ve written out to a group. I always have to explain what has happened to me etc. but this group were totally chilled out about it, they took the anxiety out of revealing all. I was beyond exhausted, but also happy at the end of the day.

That actually leads me on to my next topic “Pacing”. I have seen a endriconologist who says that in his opinion I do not have chronic fatigue syndrome, but do have chronic fatigue. The difference between these is that a gentle increase in activity would just make me even more exhausted due to everything that goes on with my body, rather than having the effect of building me up. However, the management for this is called “Pacing” and is the same for both things. This means that if you know you’re having a busy morning, take the afternoon to rest, or if you’re having a busy day e.g. writing on Saturday take some time out on Sunday. If you don’t do this you end up in a loop of “Boom and Bust” – using all your energy on one day then having none for other days. (Note: I’m not a doctor or anything but this was what I was told to do by my consultant).

I went for a flying visit to Westwood books in Sedbergh last week. Their poetry section is incredible and reasonably priced. I got some collections which I am excited to read. They also had lots of wonderful present ideas. Worth a visit – even if you’re not making a trip to Sedbergh have a travel through!

I’ve had a fitting for a supportive office chair with foot plates (which I am very excited about) because sitting in a normal chair really pulls my stomach, especially when my legs dangle. It’s going to mean I can actually sit at my desk with reduced pain and just write. It’s something I have missed so very much. I should be getting it in the next couple of months.

I listened to another book on Audible this week, thanks to the Daily Deal I managed to get through The Rosie Project by Graeme Simsion . I’m going to spoil this book because I’m so angry about it, so if you’d like to read it please stop here. The plot, until three quarters of the way through, was logical and very well thought out. However, Don (protagonist) is told by Rosie that he’d need to be totally different and become much more flexible in life (the reader is hinted to that he has some kind of undiagnosed autism or aspergers syndrome). So Don makes changes. He completely changes himself to be the person Rosie wants him. When he’s made these changes she finally allows herself to fall in love. The End. The problem I have with this book is that it suggests you should change for other people, particularly if you have something different about you such as a disability. It suggests that conforming is the only way to make someone want you. It upset me, because up until that stage it had been an incredible book which I thought had an amazing grasp on the complexities of emotions with such a condition. I guess not.

Audiobooks and writing reflections

This week has certainly been eventful! Five appointments consisting of: one visit to Kendal PCAS (Primary Care Assessment service), one GP visit, one community nurse visit, one Multi- Disciplinary meeting and one gastroenterology appointment. I went back to school yesterday after Christmas – that’s how many days off I’ve had to have. I’m feeling back to my usual self – my abscess has gone down considerably and my virus has gone.


I’ve just finished listening to “Let them eat Chaos” by Kate Tempest. I bought the book and then listened to the recording of it on Spotify. It was an all encompassing experience. I’d recommend setting aside 50 minutes that you know you aren’t going to be disturbed in, plugging in some decent headphones and turning the volume up just loud enough so that you can’t hear what is going on around you. Wow. Stick with the first poem (I wasn’t overly keen) because the following sequence is worth it. I rarely read sequences, I often find them a bit disconnected from one poem to the next – but this was wonderful. Do be warned that what she does deviate sometimes and you have to skip around the pages sometimes. Following it along and listening to it was like being at a live performance – even in the back of car. Her other collections/albums are on there as well so I will DEFINITELY be listening to them, although they didn’t have accompanying books when I looked on Amazon.


I’ve boxed away my 2016 notebooks. Every day since April 10th 2016 I have written at least a recount of my day, and on most days I have either worked on ongoing poems in there or written a new one. It has really improved my writing and got me motivated to write so much more than I used to. It just seems natural after writing an entry to continue on writing. I’ve not missed a single day – and I’ve used lots of notebooks as you can see!


Finally, I have discovered the joys of Audiable. Personally, I can struggle to read at the end of my day – or in any part of it – because I am tired all the time, even from the moment that I wake up. I am currently listening to a book called “So you’ve been publicly shamed” by Jon Ronson. He talks of people who have made HUGE misdemeanours and have been roasted online, primarily through Twitter. The people concerned are mainly people who have said things on Twitter that are hugely offensive, academics who have been discovered as creating facts or quotes or involved in what society would consider unordinary activities. It looks at how their lives have changed in the aftermath, and how an online reputation follows you around. He looks at ways people try to manage this reputation – and I won’t spoil the book but there are lots of ways of manipulating what appears on Google search results. It’s a wonderful book. Audiable is meaning that I am getting more literature in my life because on top of this I am reading as much as I was before.

Waiting rooms, Friends and New Year!

I haven’t had the best of weeks, the truth be told. On top of my infection (we’ve been to hospital twice more this week…) I have a viral illness which is making me feel really poorly. It’s strange, and something I’ve never really read about before. It’s been suggested that I haven’t had a temperature throughout all of this because my body’s autonomic functions (I always remember these as the things your body does automatically e.g. blinking, digesting etc.) aren’t functioning correctly. It’s been very hard to define what has been the infection and what has been the viral illness. It’s hard to define what are my current everyday problems and flare ups, and what is something different because my body presents symptoms so weirdly.

I have to say that both Kendal and Lancaster acute services responded extremely well – especially given that I am “Complex Needs”, and tried their very best to do everything for me. The departments were all extremely busy and all the staff were dashing around. I didn’t see any take a break – and at tea time a nurse went around and asked everyone if they would like something to eat, or if anyone needs assistance eating. I know that this obviously isn’t applicable to me – but when you’ve been on a ward and seen a young lady unable to reach the food at the end of her bed, attempting desperately to reach it, and then it being thrown away, things like that are so very important. Taking the time out to help people with basics is an important part of the job – you never forget the staff that lend you the ward hairdryer, give you a bit of hand cream or go the extra mile for you.

Despite being discharged from hospital at 5pm on New Year’s Eve I got changed into a copper sparkly dress and went and sat in Paloma’s Cocktail bar in Kendal to see the new year in with two of my best friends. Both the food and cocktails looked incredible. I had talked with the Manager on Facebook beforehand, and explained that I couldn’t eat or drink and would just be sat there like a gooseberry – and they were wonderful. They tucked my wheelchair away and made me feel like a normal human being. I sat with the girls and we just sat chatting and laughing. It was great. I still felt rough, but I was desperate to go. It’s been something on my bucket list (no, I’m not dying, I just want to start living a bit more) for ages, and now I have officially seen the New Year in with my friends away from anyone’s home. I think I’m an adult! Haha.


I haven’t made any traditional New Years Resolutions because they have kind of been made for me! I can’t drink less alcohol (T-Total) or eat less cheese (Chee-total), but I have decided to try and do every single experience I possibly can, and to try and read at least a chapter of a book a day. I think they’re achievable.

I’m reading Girl Up and racing through it. It is an empowering book that talks about the issues women can face. It has covered sexist comments, “Girling up” as opposed to “manning up”, the dangers, pressure and fakery on social media, and sex. We are taught the biology of sex in schools, not how it translates to our lives. I would recommend this book to anyone aged 16+ full stop. Men should read it too, this is not a guide for girls it is a guide for everyone. In one chapter it asks you to go through some of the emails you have sent recently – how many times have you said “sorry”, “If you wouldn’t mind” and “I’m afraid”? Sometimes these things are appropriate, but I found that I’m very apologetic for often no real reason.