Overall good things with a sprinkling of bad

Hello! I thought I would try and get back to a Wednesday for one final time. If I can’t do that this time then I will just upload one day a week when it suits me the best.
The last few days have been slightly rough in that there are arguments going on at board meetings that I cannot attend about my care. It deeply concerns me that as we speak there are boards comprised of medical AND non- medical people who are looking at my case and deciding what aspects to fund and not fund. Doctors along with all of their training struggle to understand my condition, so how is a non medical professional supposed to assess my needs? A little sneaking suspicion of mine is that they aren’t supposed to at all and they are put on boards to watch the costs. Maybe I have just been made syncial by these months and months of waiting for a decision.
I went and had a wonderful massage and manicure the other day. There is a young lady who comes to the Hospice that I go to in my own time and paints nails. She was SO lovely, so I told my mum and we decided to go as her birthday treat. I currently have very, very sparkly nails in shellac that I am hoping will last a while. The business is called Bellisima Beauty, for any of you living in the North West. She offers affordable and one to one service and is fab!
I had a very surreal and life affirming moment a few days ago. I follow Paper Swans poetry press on Facebook. I, along with a few other young poets were featured in their latest publication of ‘The young poets anthology’. Two of my poems were featured. Now, they posted a few days ago about what the Poetry Society Autumn review had to say about the anthology, and they used one quote from all of the poems in the anthology — mine! They quoted a line of my poetry. I sat in the car for a minute, silent and shocked, and then surprised my mum quite a lot by rambling on and on about it.
Mum and I are heading away for a night away. The ‘boys’ (my dad and brother) went awa wild camping for a night last weekend, so naturally mum and I thought it was our turn ! We have booked a Groupon and got a very cheap room. We are in need of getting away from it all quite a bit at the minute. The appointments are stacking up and we are getting a lot of stressful phone calls. We are so excited. The boys will be left looking after the house while we are away, which means the History channel (that never really has any history on it, usually just programmes like ‘swamp wars’) will be on loop.
My brother gets his GCSE results as this goes live! I don’t know how he has done yet as I am scheduling this post. Good luck to everyone today, but just remember that the results you get today are not the end of the road. As long as you can say you gave your all, who is any exam board to grade you? If you are feeling sad, make sure you take a step back and do some basic self care – like painting your nails, reading, lighting a scented candle. Give yourself some headspace before deciding what to do next.
I have been struggling a lot with pain in my wrists over the past few days. I have been wearing my splints and keeping topped up on painkillers. It’s all a part of my EDS 3, but worth mentioning. My fingers have been very painful as well, so I have been wearing my still relatively new Oval 8 splints an awful lot.

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!

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.

 

Numerous novels and a bit of a rough time

It’s been quite a tough week. I had my second operation on Friday to try and find where my tube was in my system because I have been vomiting/ draining feed. I had only been managing two to three hours sleep a night at that stage, and so when they gave me the sedation I fell asleep! When I woke up I was told that my tube had always been in the right place. The reason I am telling you all this is that it is physically ‘impossible’ to reflux feed back from your bowel. Unless your name is Hannah Hodgson and you have a ultra rare form of intestinal failure. We are thinking that my very peculiar bowel had a bit of a shock when I was in theatre because of the pain medication and anaesthetic. We are hoping it will all settle back down to normal soon. I know for many of you this is a little too much information – but somewhere in the world there might be someone like me who has had this weird reaction and is looking for reassurance, just as I am. I have been very lucky that my subcutaneous fluids have been in place this week, as I would have been dehydrated and admitted to hospital without them.We have talked to my consultant and he agrees I am doing the right thing, slowly reintroducing my feeds. I need to stay nice and quiet for the next few weeks and hopefully things will calm down.

It has been a restful time, consisting of a little school work and decorating my notebooks. Yes, decorating my notebooks. Washi tape and stickers make me very happy at the best of times, so this is a great excuse to spend hours making the pages pretty.

I have had PLENTY of time to get my claws on the books I have been desperate to read. This week I listened to the audiobook on A Monster Calls by Patrick Ness, which I loved and was extremely heartbreaking. It focuses around Connor, a Yew Tree and his mothers cancer. I loved it. The book has incredible narration, to the extent that I can still hear the narrator saying phrases days later in my minds eye. This is the first book that I have read by Patrick Ness. He also wrote the Monsters of Men trilogy which I was recommended when I was in Year nine, but was daunted by the size of the books.

I have also read a very lighthearted book by Jen Campbell called ‘Strange things customers say in bookshops’.It only took an hour or so to read, and I never laugh at books, but with this one I did. Jen works as a bookseller herself, and went around asking booksellers for their anecdotes – and there were a number of ridiculous ones. I have ordered the sequel which arrived yesterday. I am itching to start it!

I am currently reading ‘One Hundred Names’ by Cecelia Ahern. Another great book (I have had a very fortunate reading week) I don’t want the mystery within it to be unravelled or the story to end. I am emotionally attached to Kitty, the main character, who is a disgraced journalist and is working on a story on the behalf of her friend who has passed away.

I met Cecelia Ahern this week! She came into school and I went in for an hour to listen to her talk. She was wonderful and signed the all of my books (there was about eight…) that I own by her. She came in to discuss her two YA novels, ‘Flawed’ and the sequel ‘Perfect’. I have read Flawed, as I mentioned in a post about a month ago, and it is honestly one of the most original dystopian worlds I have read.  I’m going to leave it here for this one, I have a super exciting project to announce alongside this very soon…

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My week: first half wonderful, second half awful

As some of you will already know, this week has been very eventful for me in some very positive but also negative ways. I finally had the second attempt to remove my buried bumper, which has been a constant source of pain for me since last July and has meant I have had to pass on NG tube for drainage daily. It was successful! I am totally relived, because the next step would have been to cut into me from the outside, which is a big operation. However, in removing this bumper my feeding tube had become dislodged. This means that as I am writing this I am feeling pretty terrible and am draining / throwing up a lot of what is being pumped in. I am down to have another endoscopy, this time under sedation and not GA, to try and get it back in the right place. It has been a very emotional few days and I am so lucky to have such supportive parents who have been there for me the whole way.

After my General Anaesthetic my POTS was really bad, almost comically bad. With POTS syndrome when you go from sitting to standing or do another trigger you heart beat increases from its normal rate by 30-40 beats per minute and your blood pressure goes really low. In recovery all I did was move my head and it went up by 40 beats per minute. It took three times as long to get me recovered from the op as it did to have the actual op! I am at home, pretty sore but doing okay. Mum is doing a wonderful job of intensively looking after me (as usual) and I am just looking forward to getting back to a little normality.

On Friday I performed at Lancaster spotlight as a part of their ‘listening to youth’ project. I had such a fun time, the audience were wonderful and incredibly kind. I got lots of very encouraging feedback as well, which is always great to get. I performed first as I get tired, and then sat back for the rest of the evening watching the other amazing acts perform. I’m not just saying they were amazing either, they were incredible. One of my new friends performed a very thought provoking piece on how we have trivialised words such as ‘depressed’ and ‘ocd’ to mean sad or liking something tidy, despite being serious illnesses. She has certainly made me think. There were also other acts than poetry, there was a comedian and musician as well. At the end of the evening a local band called Karena performed. In the car on the way home we were flabbergasted that they were performing here and not in Manchester. I loved their set and want them to bring an album out ASAP!

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I would like to thank Ron, Sarah and Chris for running the workshops that led up to this performance. I wish they could continue! I have made a couple of firm friendships with very creative and talented people.. My confidence while performing has also gone up hugely. I now enjoy performing my stuff and don’t feel very nervous at all, which is something I never thought I would say!

On Saturday I went to see the amazing port Jackie Kay perform live at The Hothouse in Morecambe. She was incredible. Having read her autobiography Red Dust Road I was so excited to see her, and she did not disappoint. She was hilarious and read some really good stuff. I was talking to a lady afterwards who wondered if Jackie had just read the best extracts from her book – but I explained that they had simply been extracts. That’s how consistently high the quality of her writing is. After the performance I met her. She is one of my favourite poets that I have met, in that she was so personable and genuinely interested in my life and interests. She was very patient when we took photos as well, as my phone decided to make the photos blurry and only got a good one on our ninth attempt!

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Operation date, festival and electric wheelchair

Exactly one week ago, Kim Moore and I went to the Words by the Water festival to see a couple of performances. One that stood out to me was A.L. Kennedy. She was an amazing personality on the stage, and came to life while talking about her work. She was extremely quick witted – to the extent that I started taking a couple of notes containing her advice, something that I have never done when seeing a writer before. Her most recent book is an absolute monster (as she pointed out on stage it is pretty hard to tour with), many hundreds of pages and many tens of hours would need to be dedicated to reading it. She talked about the importance of being able to imagine other worlds and other systems of government. If we can’t imagine other ways of living, we become happily swept along with a system that may not be fit for purpose. She also highlighted that writers and other artists are often the first to be killed in dictatorships for the very reason that they can make people see the need for other systems. A sobering thought.

I enjoyed that day with Kim so much that I went to the festival again, this time with my mum. We went to see Alexander Masters talk about the book he had written about a person whose one hundred and forty eight diaries had been thrown into a skip. He learned about the person through the entries and wrote about his discoveries as he went. I am trying my hardest not to reveal a single detail about the person he uncovered, because that would spoil the book. Unfortunately, the host of the event was a little over excited and revealed things I really wish she hadn’t, including the main revelation within the book. I could tell the author was feeling pretty upset as she revealed each little thing. Alexander obviously cares deeply for the character he found within the pages of those diaries as he choked up when talking about them. It has made me wonder what may happen to my diaries one day. I’m currently on journal number fifteen.

I finally got my electric wheelchair yesterday. I have been waiting well over a year to receive it, but it is finally here! I am going to keep using my scooter for school, but at home I am going to have my wonderfully small new chair. No more dragging shop railings or product for me! It also has the function to climb small curbs, although I have to confess I did have a fear of death while trying it out. The man showing me how to use it hated the function as well, I think. If your wheels aren’t completely straight back then you get tipped out. If you don’t come at it from directly from the front you tip. I hate that function, it may come in use sometime though, although I’d rather go an extra 100yds down a road to be honest. The scariest thing about it was is that in order to desend the curb you have to come at it backwards (!) and as a result end up facing backwards into oncoming traffic (!!). I am ridiculously over the moon to finally have this wonderful piece of kit though, its going to change things.

I got my operation date in the post early this week. By the next time I write I will have had my operation. I hope I am at home recovering. I’m more scared about whether I will be let home or not than about the actual operation or the amount of pain I will be in. I can’t wait for the anticipated (hopefully, I learned about getting my hopes up from the last attempt…) result, which is that I will no longer have to pass the tube on my face every night. That would be amazing. The skin where I put the dressing to fix the tube to is very raw, and my nose is getting quite sore. I can’t wait to have it done and just move on with my life.

See you on the other side!

Subcutaneous fluids and fairies

This week started with something that hasn’t been done in my community nursing setting for many years. I started subcutaneous fluids, something usually used in end of life care, but being used in me to improve ongoing quality of life. The subcutaneous layer of fat is just below the skin. A small needle can be inserted under the skin and some fluid put in to this small layer of fat. I am currently having about half a litre a night through my skin! It’s very strange, but works. My mouth doesn’t feel as sore as usual. We don’t know how long I’m going to be able to stay on them, as this depends on my skin or ‘sites’ (there are only a few subcutaneous areas of fat in the body) will last, but I am enjoying the benefits while I can. The only drawback is that it makes one limb swell for a while until the liquid is absorbed, it doesn’t hurt and this is normal for this treatment. I have waited months and months while protocols etc. have been sorted out, so I am so relieved to finally be trying them.

 

It was World Book day last Thursday, and I dressed up as a fairy. Specifically Libby the story writing fairy (the nearest thing I could find to a poetry fairy) from the rainbow magic series. I was in the group of children who got the first ten Rainbow Magic Fairy books, which were based on colours e.g. Ruby the red fairy. Now there are over two hundred versions of these books, from the Royal Wedding fairy to the Doctor and Firefighter fairies. World book day was a huge success, we had visitors in school and did loads of fun and relaxed activities. It was my favourite World book day ever, and my last one at my current school.

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I took part in my first Lancaster Spotlight workshop on Saturday. I met such a lovely group of really talented young people who were like minded. We performed poetry and learned about editing. We worked in groups and looked at individual poems. I feel really lucky to be a part of this group.

 

We went to see my Gastroenterology consultant yesterday. He is great and really helps with the numerous bumps in the road that we face as a family. There is no specific umbrella term for the conditions I have, no predicted course or time scale. It is amazing to have a consultant who is ready for anything –  and I threw him some curve balls yesterday. You need a consultant who likes a challenge and genuinely wants to see you be as well as you can be. He has been hugely supportive of my schooling, regimes within community nursing and letter writing regarding things such as respite care. He understands that in order to have a proper life I need help, and that is okay.

 

I have been reading a book called Flawed by Cecelia Ahern. Wow. I am absolutely loving YA fiction at the moment. It is based in a dystopian world where your moral decisions are judged by The Guild. If you make a failed business investment, mismanage money or do anything morally questionable you could be branded by a hot iron and classed as ‘Flawed’. Flawed people have to live very basic lives. The Guild have been in place to try and rid society  of all flaws and to make society perfect. It’s an amazing book, and there is no way I would limit this to Young Adults. It is one of those books you sit down to read a chapter of and end up reading six. I think the dystopian universe has been really overdone since the Hunger Games, and I’ve chatted to others that agree. However, Ahern has brought a fresh approach to this genre and I can’t actually wait until the next book. Luckily it is out in the next couple of months.

Finalist and Spellbinding

I am travelling down to Huddersfield today. No, not for an appointment, but because I am a finalist in the Huddersfield Literature festival Poetry is Courage competition! As I am a finalist my poem will be made in to a poster and displayed at thirty venues around Huddersfield. I wrote a poem on the theme of Anxiety. I wouldn’t say that I’m an anxious person at all – but I, as everyone, have my moments. The other day, for example, when I was out with my mum on my scooter, I crashed into the door of a lift and couldn’t free myself and then the doors kept on starting to shut and people were staring and arghh! I then talked to a friend who suffers with really awful anxiety and watched some videos on YouTube about anxiety. As my poem details, people may feel they have to rebuild themselves every night in order to go out again the next morning.

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On Saturday I went along to the Spotlight young writers try out at Carnforth Railway station. I performed a selection of my more recent poems, and got such a lovey response from Ron and Sarah. I am so excited that I will be working alongside them in two workshops, and then performing at Lancaster Spotlight on the 17th of March. I have my pre-op a week or so before the Spotlight performance, so for once I am hoping there isn’t a swift turn around after pre op… we shall see anyway. It’s an amazing opportunity and I am very pleased to be a part of it.

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It has been half term this last week, so I have been reading a few books really quickly. I can’t actually tell you what books I am reading as they are part of the Spellbinding shortlist for 2017. Spellbinding is a reading challenge which is run by Cumbria Libraries. There is a shortlist of books for primary and secondary schools. As a library official at school I am helping to run our club this year. I have read four of them now. There has only been one so far which I haven’t enjoyed – and considering these books are aiming to please young people of different ages, genders and walks of life I think that is very impressive!

Night out and All the Bright Things

It’s been quite a busy week, but we spaced it out so that my body could keep up! On Saturday I went out on a night out into town with one of my best friends Rhianna. We went to a pub where the music was so loud we couldn’t hear each other talking. It was great, and definitely something I want to repeat. I know this sounds silly, but I loved it because it felt so teenagery (I know, not a word, but it is now) and right.
The thing that people don’t see are is all of the preparation that went in to that one incredible night, and how it made me poorly for two days after. Before going out I had to have an equivalent of four of five hours extra feed, so that I could go out on water. That wrecked me from the start. I then got up and dressed, did my meds, packed and went out. In quite a bit of pain if I am completely honest with you. I went out in my wheelchair, and it didn’t mean we had any less fun. Both the bouncers and the incredibly drunk were very nice, something I wasn’t expecting if I am completely honest. One slightly weird thing that came about was a row of very drunk people kissing and shaking my hand? Very odd. There was three of them. Congratulations on behalf of the drunk, we are proud of you for being out while sitting down on a chair that has wheels? Anyway, they meant well. You know you have a bloody good friend when she drags a chair next to you on the dancefloor and chairdances next to you. She made me feel so normal. Thanks again you wonderful person! Despite Rhi having a couple of drinks she didn’t crash the wheelchair once (although I nearly broke my toes against door frames a couple of times. Haha!). I was beyond exhausted and felt very poorly when I got in. I took off all my makeup and passed my NG tube into my stomach. I started draining a bit of blood. Swaying in my wheelchair to a bit of music caused me to have a small bleed. I think my body is actually allergic to the concept of being a teenager. It wasn’t anything major and mum helped me with the rest of my routine to get to bed. An hour of so later I was ready for bed. Reading this you may think I would never want to go out and do that again – but you know what, despite all of the pain I had an amazing night and would definitely do it again.

In other news, the Kendal Poetry Festival has now got full funding! I am so excited about this years festival and its inclusion of young poets. Being the Young Poet in Residence last year has given me confidence in my work and made me push myself forward for things that I probably wouldn’t have done before. I now really enjoy performing, and actively seek out the opportunity to watch others perform, largely due to this festival. I am beyond excited. Block off the 16th to the 18th of June 2017!

I have just finished a Young Adult fiction book called All the Bright things by Jennifer Niven. I haven’t read any YA books in ages, but picked this one up because so many people were raving about it. Oh my goodness, I can see why! I wouldn’t say this book is a YA book in a traditional sense, yes the protagonists are seventeen, but the subject is one that needs addressing so much more often in fiction generally and the story is so complex iI am sure it would sell on adult fiction shelves. The book focuses on Violet and Finch, Finch has obvious mental health difficulties from the start. The chapters alternate between Finch and Violet’s perspectives. It shows him as a 3D character – yes, people who are struggling with their mental health feel more than one emotion, they can love and care for others, their illness is not a selfish thing. Jennifer Niven was incredibly well researched when writing this book – and it seriously shows. It’s a devastating and eye opening read. The best book I’ve read in ages (I say that all the time, but seriously, I think this time I have found my favourite).