October antics….

Apologies for not writing in nearly a month! I shall do my best to blog as often as I can, but illness and sleeping has been the focus of my days recently.

This weekend was the TSSS conference. And yet again I had another amazing year. I arrived on Thursday, had two naps on Friday, and slept all day Saturday. Dad had ordered me a new self propelling wheelchair to get around in, as I still cannot stand for more than a few minutes without my face going red or white, feeling dizzy, my hands and feet tingling and my head exploding. For the last few months I had been reluctant to use my clunky hospital style chair, and have paid for it on more than one occasion… I've still not learnt! I think the worst thing about using a wheelchair is psychological. Suddenly, my "invisible" illness is "visible". Having spent many years explaining to obnoxious passers by that I have a neurological condition, who have been known to say 'you must be joking!' to mum when she points to the disabled badge in the car, it's weird to suddenly be known from just a glance that you are disabled. Being able to control the chair myself was a big thing, but the biggest thing was allowing myself to accept it. Yes, I needed a chair to go long distances. No, it didn't mean I was lazy, or taking advantage of having one. But it reinstates in my mind that I am 'ill', that my condition has deteriorated. I am holding on to the fact that it won't be forever, and I am certain that I will be back to walking before I know it.

I rather love my onesie

In the meantime, I'm looking for ways to jazz my chair up (sparkles and colour), and any ideas are welcome!!

On the the Saturday Night of conference I managed to go to the evening meal and disco. This years show was 'The Addams Family - AKA The Turner Family.' And seeing those girls blossom on stage has to be one of the best feelings in the world. This year I wasn't able to participate in the performance, but sitting back and watching the teens, women, parents, ladies, juniors, everyone who went on that stage, blew me away. It enabled me to reflect on just how far the TSSS family has come, and my pride went through the roof. It takes a lot of courage to sing, dance and act in front of an audience of 300, and I applaud each one of you. Well done.

Wednesday Addams Style! <3

My beloved Granny Ford died on Thursday. She was a feisty woman, as those of you who have read mums blog will know, and I will miss her very much. She taught me to knit, (at age 9), and in the last few months spent many lovely days out at blooms, knitting shops, and kenilworth. I inherited her vast collection of knitting needles (I do not think I shall be needing any more!), her beautiful stamp collection, and a jar of assorted old fashioned buttons. They will ALL be put to good use.

GF reteaching me to knit

Gorgeous buttons, stamps and knitting needles!

And finally, a bucket list update. I got my first manicure on Wednesday last week! Spa day next I hope.

I do love sparkles!

Leibster award

This award is given to newbie bloggers by other bloggers, and although being new in this community can be scary and overwhelming, it has definitely confirmed my passion reading and writing, and whether the content is good or bad makes no difference because you learn from everything! This award allows you to nominate 10 people, new to the blogging community, and answer a set of 10 questions, and in turn they nominate 10 more people and ask 10 more questions. And so it continues.

I was nominated about a week ago by the wonderful Sophie-Ellie- thank you so much! Please check her out, she's a book, beauty and lifestyle blog, and I always enjoy reading her posts. Sorry it's taken me ages to post this, this week has been rough and manic.

I'll try and keep my answers quick, and not ramble..

1. Are you an animal lover? If so, what animal/s do you love? If not, why not?
I most definitely am a crazy cat lady! I have a feline called Mog, a black and white beauty.

2. If you could get a free holiday to any destination, where would you go and why?
USA! The sights, sounds and broadway is where I want to be. I love getting caught up in busy, hectic places. 

3. What do you think is the best thing about blogging and why?
Meeting new people with the same interests as you, stretching your own limits and learning about yourself. 

4. What do you think is the worst thing about blogging and why?
Thinking of relatively interesting things to write about, and also the amount of time it takes for me to type and finalise a post!

5. How many make up products do you use on your face for an everyday look? (count them up!)
Currently, none! Besides moisturiser and vaseline, I am barefaced and have never used foundation (unless I'm in a stage performance). Usually, because I'm usually on bed rest, there's no need!  

6. If you were on a date with someone yummy and famous e.g. Gerad Butler or Ryan Gosling, where would you want them to take you and why?
I am a sucker for romance, something like watching the sunset on the beach with a picnic and getting to know each other would be perfect. It's somewhere we can be silly and create amazing memories, but also have meaningful conversation as the night goes on. 

7. What is the most beautiful thing you have ever seen? E.g. a mountain view.
The sunset on a beach holiday this year. (See a prominent theme emerging?!) My family and I were in Devon and we had a barbecue earlier in the evening. We played games and I read, it was lovely. 

8. What is the best present you have ever received and why?
Interesting question! When I had my very first brain surgery in 2011, my best friends from my local pantomime group put together a handmade scrapbook full of pictures and get well soon messages. It's my most treasured possession, full of memories and was a very thoughtful gift. 

9. Do you read? If so what's your favourite author?
Thats like asking 'Is the sky blue?' and 'Who's your favourite child?' I cannot answer. If I had to though, I think it would currently be between Jodi Picoult and John Green, and that's the closest I'm going to get to a decision.  

10. Do you love Christmas or are you a Scrooge?!
I love it. Besides birthdays, its the best time of the year. 

My questions to you are: 

1. If you were a literary character, who would you be and why?
2. Are you spontaneous or a planner? 
3. What is your recipe for creativity?
4. Write the first sentence of your autobiography.
5. What was the last goofy thing you did?
6. What 3 words would other people use to describe you?
7. What one thing would you rescue from your house if it was burning down?
8. Are your nails painted right now?
9. What was the last interesting conversation you had about? 
10. Whats your favourite snack food?   

I'm very new to the community myself, so I will only nominate a few other people I have stalked their book blogs and think they're brilliant. Always looking for new blogs to follow so please comment and I'll have a look!!  

1. Crystal  
2. Cherelle   
3. Charlotte
4. Emma  

Review: You Don't Know Me, by Sophia Bennett.

Everyone wants 15 minutes of fame. Meet Sasha, Jodie, Rose and Nell, best friends, they get theirs. They record silly, cheesy music videos in their spare time... but someone steals the phone the films are recorded on, and suddenly they find themselves entered into the biggest music competition in the country. They get to sing together in front of millions, it seems like a dream come true…. but then, the producers say one of them must go.
Surely no girl would drop her best friend for a competiton...
Unless…

Having to very quickly make a decision can cloud logic and you become impulsive, so I understand why Sasha dropped her friend to be on TV. She's a very believable, relatable character, and the book is written from her perspective.

Well, fame wasn't exactly what they thought it would be….

The main theme of this book was the contrast between friendship and bullying. It taught me that whatever hardships you are made to go through, something positive will come from it, however little that may be. Sasha is badly bullied because of the decision she makes, but she wouldn't have learnt to pour her feelings into songwriting if that hadn't been the case. In the same respect, if I hadn't gone through difficulties, I wouldn't have learnt to pour my feelings into art! Cyberbullying is a common issue a lot of children go through, and 'You Don't Know Me' shows that it does get better, with the help of her friends, Sasha overcomes the nasty messages sent to her. However I would have liked the idea of adult involvement to feature more, as it's not often teens can sensibly stop bullies by themselves. The book also shows what it means to be loyal, and also how devastating the consequences of sending a nasty message online can be. It's very easy to press 'anonymous' and send a quick, cruel message to someone, but it's just as easy to track where it came from.

There are many plot twists throughout, which my Mum preempted before I did, keeping me racing through the book in 2 days. It makes you realise that there are always two sides to every story, and you shouldn't ever judge someone from what you "hear" from other people. However, despite all the drama, the final chapter of the book was heartwarming and very convincing. It successfully reinstates Sophia's message, and I was really pleased with it.

I would definitely recommend this quick and easy story for teens, especially because a lot of the book is written through online messaging, making it modern and more identifiable to this age group.

This was my first Sophia Bennett book, and I shall definitely be adding her other work to my TBR list! Thankyou to Chicken House for sending me a review copy of this book!

Review: My Sisters Keeper by Jodi Picoult.

I am a big lover of Jodi Picoults books. Her dramatic plot twists and captivating writing style keeps me hooked until the very last word. I give this book four stars, I was disappointed with the writing style, but found its content and theme fascinating, and it is an incredibly unique, thought-provoking topic, not something just anyone could come up with. 

My Sisters Keeper is a reference to the bible. Caine has just murdered Able, both of which are sons of Adam and Eve. God asks Cain where Able is to which he replies "I am not my brothers keeper", i.e I do not know. This parallels the story of the Fitzgerald family, Kate has leukemia. Her sister, Anna was born with a purpose, to be spare parts for her sister, and save her life. But Anna decides she’s had enough, and hires a lawyer to sue her parents for the rights to her own body. She will no longer be her Sisters Keeper.

The writing in this book was very heavily detail-orientated. It's obvious that Picoult spend many, many hours researching firefighting, astronomy, cancer and all matter of other subjects, for which she should be highly commended. I found the topic of medical emancipation and cloning to be very interesting, however I found it had all been put across in a rather rambling way. I couldn’t quite understand completely Campbells entries especially as they were too technical, and found my attention slipping. 

As the book was written from many characters perspectives, I found myself flipping sides, unable to come to a clear decision until the very end, a clever tactic in such a controversial book. I understood Saras reasons for using Anna to save Kates life, and at times found myself thinking that Anna was ever so slightly selfish for not thinking of Kates wellbeing. However, at times her mum, Sara, came across as hysterical and only thinking about Kates wellbeing, for example when she wouldn’t let Anna go to residential camp in case Kate went into relapse. Toward the end, though, once I realised it was Kates wish to be let go, I sympathized completely with Anna. I felt that she should have told the truth from the beginning, then she wouldn't have come off quite so self-centred. 

The decision of whether or not to use the body for medical purposes, however old the donor might be, lies with them alone. It’s not up to the parent, and the sick child would never be upset or feel betrayed if she decided not to go ahead with it. Being chronically ill myself, once I found out it was Kates wish not to receive the kidney, there was a very easy answer. Of course if I was a mother of a sick child then I might have a different view, any parent would do anything to keep their child alive, whatever the cost. Its very difficult to give equal attention to children when one is chronically ill and the other isn’t as dependent on you. The patient feels guilty for taking all their parents time and effort, so when the opportunity comes to take the pressure off the sibling, of course they'll take it. And parents are going to fight it, they want their child alive, it’s their job. But just how far do they go?

I think Picoult was clever in not including Kates perspective until right at the end. I would have liked things to have moved quicker, a lot of detail cut out, and a much more concise story. I also found the sub plot of Campbell and Julia falling in love was unnessesary, I felt it was clichéd and irrelevant.

Although the ending was unexpected, I was disappointed by it. I felt like the whole purpose of the story was that Anna wanted her voice was heard in a place where she felt like she was invisible. I wanted Anna to finally be heard, but the ethical and moral aspects of the story were completely abandoned. I feel Picoult took the easy way out in the end.

This is one of the rare moments where I actually say that I much preferred the movie than the book. I really find it much more touching. I didn’t cry at the book as there was too much technical jargon, but I did at the film as the ending had much more impact.

The book made incredibly grateful for my own sister. She does an awful lot for me when I’m sick, and she has to deal with not having her voice heard, and all the attention going on me, but until something brings it up, (like the book ‘Wonder’ by R.J Palacio), you don’t think about the effect it has on everyone else. I know she’d do anything for me, but I would never want her giving up her childhood for me.

Travelling the world

Everyone has the dream list of where they would love to travel. Here's my top 5.

America

1. North America - New York and Broadway are obviously the top place I must visit, and then I would have to go to Disney World Florida, Orlando Sea Resort, and Las Vegas too. The hustle and bustle, the glitz and glamour, the sights and scenes, all the things I love about a city.
2. Antarctica - An incredibly unique, once in a lifetime holiday. Yes, it would be cold and super expensive, and medical supplies are limited, but ever since I heard you could visit in a Geography GCSE class, I've wanted to go. The peace and tranquillity there, and in December and January the Penguin chicks hatch, and with all the wildlife and greenery (it's not all white frozen land!) it would be breathtakingly beautiful.  
3. Australia - The heat, the beaches, the sand and sea, being there for two weeks would be an ideal break. Melbourne especially - wildlife, peaceful islands, beautiful scenery, and swimming with dolphins… I think so! 
4. Paris - I would love to climb the Eiffel Tower, and sit in a french restaurant or coffee shop with a book and watch the world go by. I think a shopping trip here would be in order as well!
5. Nepal - My grandparents from my Mums side come from here. It's a poor, poverty stricken place, and I would really like to see where my heritage is from. They live their lives so differently to us, My great grandfather owned a tea plantation in Darjeeling, and my great grandmother was a tea picker there! When they retired, they had the choice of moving to either Australia, Canada or England, and his best friend lived in Rugby so that's why we're all here! 

Antarctica 

Today I'm grateful for

• Mums Sunday roast!
• Organising cinema trips out - Planning a social life!!
• Writing letters - there's nothing more satisfying.
• The internet - for letting me stay in touch with friends when I can't leave the house.
• My friends (Holly!) for making me cry with laughter.

The Spoon Theory

Living with with chronic illnesses is difficult. I have to make decisions that most people wouldn't think twice about. There's an name for people like me, we're called spoonies. It's unusual, but I'm going to try and explain 'The Spoon Theory', and what a day in the life of Meg is like.

Imagine you're me. I give you a bunch of spoons. These spoons are like energy, and healthy people have endless amounts of spoons, whereas I have less. I don't control how many I get, or how quickly they go. Every conscious action I make costs a spoon. So, first thing I do when I wake up is gage how well I slept, how I felt yesterday, what my pain score is today, and whether or not I've got anything planned for the day. Based on this, I estimate how many spoons I have. On a good day, I go downstairs for food, medicine and water, because otherwise I have absolutely no chance of functioning. 2 spoons gone. I decide to have a shower, and wash my hair, that's another spoon.

The day goes on, I'm always counting spoons and always making sure I have enough. By the time it gets to putting clothes on I've usually used 4-6 spoons and I need another 2 definitely for lunch and dinner, plus one spare, so I plan my day based on what I have left. Whether it's going out (5 spoons not in wheelchair, 2 spoons in), reading (1 spoon), art or sewing (2 spoons), or having someone round (1-2 spoons) When I don't have enough spoons, I crash, flare up, and usually spend days in bed recovering, building up my reserve of spoons again. I could borrow tomorrows 'spoons' if needs be, but it means tomorrow will be harder as I won't have enough.

I always have to make sure I keep an extra spoon or two in reserve because I never know when I'll need one. Maybe my tablets are in the cupboard, I'm home alone and I need to get them. Maybe the cat litter needs cleaning out. I could get a cold, or infection and need lots of spoons to fight it.

It's taken me a long time to learn this theory and put it into practice, but I've had so many more good days because of it. Going out a bit less, thinking more about how I fill my days, running up and down the stairs less, means I can actually leave my bedroom on worse days, I can actually get dressed because I've saved spoons.

So, please don't waste spoons. If you're healthy, please appreciate the blessing that you have a never ending supply of them. Do things that are important to you, that enrich your life. Have meaningful conversations. Don't take it for granted. You never know when it could be taken away. 

Today I'm grateful for:

• That feeling of accomplishment when you finish a book
• The feeling of excitement when you start a new book!
• Music
• My large supply of painkillers and anti sickness
• Oreo Cadbury chocolate!

I wish I could bake a cake made out of rainbows and smiles….

Who doesn't love a Mean Girls quote?

Last night, I dreamt I saw rainbows. Not just one, but four. 
"The rainbow implies that your troubles are almost over. Good will come out of your issues. Just hang in there."

Very appropriate, I thought. Even though an end to my headaches completely isn't in sight yet, I know that there will be something positive come out of this rough episode, even if that's just a better appreciation for pain relief! I am still waiting and waiting for a referral to see my new Neurosurgeon, but all you need is one shred of hope, hope for treatment, hope he can help, hope for relief, hope he's nice, hope something works. Let me quote The Hunger Games.

"Hope. It is the only thing stronger than fear."

I made the very tough decision not to go back to college this year. I'm looking at it as taking a break for my health, not giving up on my dream. I will return to acting, just not right now.

I have been given an opportunity to do something new different with my life. I would never have read as many books, started doing art, been able to curl up on the sofa and enjoy DVD marathons, I probably wouldn't have got my cat and have time to have long snuggles with her, and even spend time deciding how I want to decorate my bedroom, if I hadn't been ill. I take life one day at a time, otherwise it's overwhelming. Sometimes the best things happen when you don't prepare! 

Today I'm grateful for:

• Snuggles with Mog
• DVDs!
• My Parents
• Art
• Dreams - both the ones you have at night and during the day.

As Mad as a Hatter..

One of my all time favourite roles to play was Alice in Alice in Wonderland. She was curious, liked to dream, and was so fun to perform. But I am closer to the character than you would think. 

Alice and The White Rabbit - March 2012

Not many people know I have Alice in Wonderland Syndrome….

Imagine sitting in an exam, and time actually going super quickly. Well thats what happens to me. Whenever a room is silent, time feels like its speeding up and my brain goes fuzzy. I can't focus and I feel like I'm spinning, it's incredibly disorientating and quite frightening at the time. I can feel people moving around me, there's a buzz in my ear, and I feel sick. It can last from a few minutes to continuing for weeks afterwards.

Also, most commonly at night, when my eyes are closed but I'm not asleep, I get the very strange feeling of my body growing, shrinking, and generally distorting itself. My legs could feel like they're 10 feet long, sometimes my head feels massive, or I could be smaller than a mouse. So really, I get the best of both worlds, I get to feel tall, and be short in real life! And I can well and truly say I applied method acting for my Alice performance!!! 

Me!

I don't remember the first time it happened, and I couldn't describe the sensations that were happening to me when I was younger, I believed it was relatively normal to have perception and body disturbances. But when I went to the doctors with migraines and regular severe stomach cramps at age 9, AIW syndrome came up and I remember Mum asking if I had ever felt like I 'grew or shrunk'. She went on to describe perfectly how I'd been feeling, even though I had never said anything. I was so surprised, and she explained to me that it's an actual medical condition, and I began on migraine treatment. It's been something I've had for as long as I've had Turners.

It's one of my strangest conditions, and is definitely more prominent when I have Really Bad Headaches. To combat it, I tend to have the TV on constantly, or listen to music and sing along loudly if I'm home alone so there's no silence, and at night I like to listen to audiobooks. It's difficult balancing wanting silence for the pounding headache, and wanting noise to avoid feeling Alice-y. With this and tinnitus (ringing in my ears!) I have bad insomnia, sleeping at night is difficult, but proper relaxation and focussing on something else is key. 

Don't forget to:

 

Top 10 books

I am an avid reader, as most of you will know. My shelves are filled with every genre from romance, to Young Adult dystopian, to horror, crime, pretty much anything I can get my hands on.

"I do not have a book buying problem".. Says the girl who's brought 8 books in the last 2 weeks and is planning on buying just one more….

Today I shall share with you the Top 10 books I've read in my lifetime that you have to read…. bare in mind that asking me to choose my favourite books are like choosing my favourite children, and that I'm terrible at keeping plots as secret...

10. The Sheltie Series by Peter Clover. I read this series when I was around 6-7 years old, and these were the books that made me love reading. There are literally a hundred Sheltie books and I read (and re-read) as many as I could get. The loveliest stories all about Emma, and her shetland Pony, Sheltie.

9. One Day by David Nicholls. A wonderful love story revolving around Dex and Emma (popular name apparently!), on the 15th of July, from 1988 when they meet for the first time. They must go their separate ways, but what happens the same day next year? The year after that? And every year that follows? Full to the brim of romance, but Not for those who like smiley happy endings.

8. The Curious Incident of the Dog in the Night Time by Mark Haddon Christopher has autism. He understands maths and science, he just can't quite get humans. When his neighbours dog dies, he decides it's his duty to find out who the killer is, but what else will he learn along the way?

7. My Sisters Keeper and The Pact by Jodi Picoult. Two very different books, from a very talented author. If you've watched the film of My Sisters Keeper, I really recommend you read the book, as the endings completely different, and although I personally don't like it as much, I think it's an excellent take on the story. The Pact follows the story of two families, the Hartes and the Goldes, and their two children who grew up best friends, no one was surprised when Chris and Emily began dating. They aren't prepared for the call from the hospital, announcing Emilys death, and the police begin to investigate whether this was a suicide pact gone wrong, or murder. It's really up to you, the reader, as to what you believe the final verdict is.

6. Slated by Teri Terry. A Young Adult dystopian novel, Kyla has been Slated. She has no memory of her past life at all. The government claims she was a terrorist, and say she's getting a second chance. But she wants the truth, and no-ones giving it to her. I really, really love this book. A fairly thick book, (about 500 pages), and a sequel on my 'to-read' shelf, it's one you can really get your teeth into, and engulf yourself in her world. I don't really know what about it makes me like it so much, but the story has stuck with me over a year after I first read it.

5. Wonder by R.J Palacio An expertly written book following a young boy called August, with a facial disfigurement as he starts school for the first time at 10 years old. This book made me appreciate how easy my life was in comparison to some, and made me want to hug everyone, it's a very upbeat, light, heartwarming book. It was also so interesting to read the entries about August from other children's perspectives.

4. The Fault in our Stars by John Green TFioS should come with a warning: 'This book will make you cry.' A very sad story following two young people with Cancer. This is one of those books that only comes round once in a lifetime, and is so well written, but not for people who don't like happy endings! I recommend pretty much ANY book by John Green...

3. Elsewhere by Gabrielle Zevin. Would recommend for everyone. The story revolves around Liz Hall, a 15 year old girl. In Elsewhere, people don't get older, they get younger. In Elsewhere, there are beaches, warm, breezy air and it's peaceful. Elsewhere is where Liz ends up after she dies. A wonderfully heartwarming story about the afterlife.

2. The Hunger Games Trilogy by Suzanne Collins. In a world where North America is called Panem, and the states called districts, 12 boys and 12 girls are pulled together in the annual Hunger Games, a brutal fight to the death.. I won't go into specifics as it's a very complex book, but it's well publicised with the films being release, most of you will at least have heard of this!  If you haven't read the book, I urge you to watch the film and I promise you'll be hooked. Unless of course kids killing kids isn't your thing… which is probably most people, but it's not as gruesome as it seems.

1. Harry Potter by J.K Rowling. Hours of magic, spells, potions, witches and wizards, where can you go wrong? If you haven't read them, you haven't lived. (Jacob Weaver)

There are so many more books I could have written about, so if anyone wants any more recommendations please ask…and also, share with me any books I haven't listed, I'm always updating my to-read list!!

My inspiration journal

Cutting and sticking is one of my favourite things to do. Its relaxing, and I can do it when I have zero concentration. Meet my glue book! 

Whenever I read any magazine or catalogue, I always end up cutting out every image that appeals to me, whether its a colour I like, words, a hairstyle, a dress, a pretty pattern, anything really that grabs my attention. I put them all in a folder, along with pretty postcards I get, stamps, tissue paper and colour samples. Some of this stuff will be used for art journaling, some saved for paper crafting, but a lot of these things will end up in my 'inspiration book'. 

When I have a large enough selection of images,  I get my blank spiral bound notebook, and decide my theme for that particular page. I usually sort images by colour, pattern, or item, but there are thousands more ways to organise them. I spend a while getting the pictures in just the right places, leaving white between the images so I can doodle if I want!  Then they all get stuck down...

Everyone has different ways of getting ideas, whether kept in their head, seen on tv, or written down, and this is one of my ways. I much prefer physically seeing things, and even though I love pinterest, nothing beats the feeling of flicking through a physical book, bursting with colour and pictures. It's easy to keep, and with less materials needed than art journaling, its ideal to pick up when you just have a short amount of time, or have no energy to get all the paints out!! Maybe not everyone has my compulsive need to collect, cut, organise and stick pictures as I do, but this has definitely become one of my favourite notebooks…. 

Would love to see other peoples inspiration journals if anyone has one/makes one?!

Today I am grateful for

• My Granny
• Cutting and gluing!
• Organising to go to the HP studio tour on Saturday!
• Mog
• Raising nearly £2000 at the fundraising extravaganza on Saturday!
• Having such amazing friends.

The Bucket List

Inside this notebook is a list of everything I wish to do/make/see/achieve in my lifetime. I first started writing this on the 3rd February 2013, after being inspired by the movie 'The Bucket List'…

1. Visit America
2. See the ball drop on New Years Day in Times Square
3. Be an extra in a movie
4. Be on the front page of a newspaper
5. Audition to be on the west end
6. Get in a taxi and yell 'Follow that Car!' 
7. Take kissing pictures in a photo booth 
8. Spend a day watching disney films
9. Fall in love
10. Get married
11. Have children
12. Go on a road trip
13. Play messy twister
14. Get a Starbucks Coffee with my name on and Instagram it
15. Donate my hair to make a wig for a child with cancer 
16. Walk on the beach at midnight
17. Learn to play an instrument
18. Get completely drunk
19. Own 10x pairs of heels
20. Become an organ donor
21. Volunteer at Birmingham Childrens Hospital
22. Skinny Dip
23. Do yoga 
24. Raise over £2500 for charity
25. Raise over £5000 for charity
26. Cook Mum dinner with no help
27. Do something special for my parents
28. Watch the sun set and rise on the same day
29. See a Broadway show
30. Read the complete works of Shakespeare
31. Send a message in a bottle
32. Save a life
33. Change a life
34. Learn to juggle
35. Spend a day baking
36. Make a tye dye t-shirt 
37. Create melted crayon art
38. Bake a rainbow cake
39. Finish my Wreck this Journal
40. Kiss someone at midnight on NYE
41. Watch 5+ movies in one night (not day!) 
42. Witness a birth
43. Learn British Sign Language
44. Learn to do the splits
45. Read all the books on my bookshelf
46. Own a polaroid camera
47. By a baking cookbook
48. Dye my hair
49. Eat a pint of ben and jerries by myself
50. Have a scary movie marathon
51. Visit Disney World, Florida
52. Learn to knit
53. Audition to be in a sitcom
54. Be as half a good mother to my children as my mother is to me
55. Meet TSK
56. Watch a TSK show live
57. Go to the HP studio tour
58. Try butterbeer
59. Own a pair of designer heels 
60. Take part in a flash mob
61. Go to a movie by myself
62. Finger paint 
63. Say yes to everything for a day
64. Watch a meteor shower
65. Go on a blind date
66. Donate blood
67. Visit Australia
68. Own a beautiful second hand classic bike
69. Teach my baby BSL
70. See the mona Lisa
71. Fly first class
72. Own a pet
73. Have a house with a reading room/ library
74. Win an acting award 
75. Try s'mores
76. Jump into a pool fully clothed
77. Make a glitter jar
78. Complete a sketchbook
79. Own all the Keri Smith books
80. Finish a journal
81. Finish an art journal
82. Finish my WTJ 
83. Finish The Pocket Scavenger
84. Write a novel
85. Write a short script
86. Finish my novel writing notebook
87. Finish a complete colouring book
88. Call hogwarts on 07814 524077
89. Own a pink sewing machine
90. Leave a waiter my number on a napkin 
91. Dance outside at midnight
92. Have a massage
93. Have a manicure
94. Have a pedicure
95. Stargaze
96. Start a book club

Good days/bad days...

Recently, I've been having more and more flare ups that are so bad that I'm usually sick with the pain, and then just sleep all day and all night. Yesterday was one of those days. I knew it was going to be rough as I was teary all morning from the effort of just getting out of bed and getting washed and dressed. I tried to read, go into the kitchen for a change of scenery, but was snappy and frustrated all morning. I'm never angry at people, I am only angry at the pain… and my sister usually happens to be in the same room as I am, so unfortunately she gets the brunt of it. Sorry Daisy! 

After a long time with a chronic illness, I've found I have a selection of things that make bad times more bearable. One of those things is my Mog. It's amazing how instinctively animals know how you're feeling, and she was the only thing that made me smile yesterday. Purrs are medically known to reduce blood pressure, reduce stress, and relax you, and that's definitely true. 

The day we first got Mog

Mog's a fluent reader of course..

Other little things that make life easier/perk me up when I have a bad day

• Porridge, with peanut butter and bananas
• Comfy pillows
• A cold facecloth on my forehead
• Lots of water or summer fruit juice
• Plenty of painkillers
• Dvds

I've learnt, after a long time, that its okay if the only thing I did today was get out of bed. If I didn't leave the house, thats fine! If it takes strong painkillers to get rid of the pain, then that's what I need to take. There is no point in feeling guilty about being 'unproductive' some (well, most!) days… because  health always comes first... It's taken me a long time to learn that, but I think it's finally kicked in. Worrying doesn't get you anywhere. Instead of focussing on what I can't do, I focus on what I can do.

Fundraising Extravaganza!

This Saturday, at 7:30pm, a group of my best friends are taking to the the stage at Dunchurch Village Hall, in an evening of song, dance, music and drama, all in aid of the TSSS.

Every year I take part in a local pantomime, latest performances being Alice in Wonderland and Sleeping Beauty, where I have met some of my best friends. A few weeks after the final show had taken place this year, Suzy and I were talking about what we were going to do next, and somehow came up with the idea of directing and performing a whole charity showcase. So… we began organising, booking, casting, and getting funding. 

Suzy and I

Boy, we had no idea what we had gotten ourselves into. A 17 and 19 year old directing a bunch of your best friends in a showcase where everyones doing something different…. we learnt a lot lets say. For the first few rehearsals I'd managed to get myself in hospital, so Suzy was brilliant in pulling everyone together and getting the vital ideas we needed to take the first steps to putting on a show. Excitement quickly began rising as proper rehearsals began, scripts handed out, and songs and monologues chosen.

Holly also came up with the idea of going on a sponsored walk for more funding, so on the 22nd June 2013, everyone walked 10 miles for Turners. They're all mad. I obviously sat in the car with Mum, driving alongside them for a while, and played very loud, inspirational music out the window to them to boost morale… I was very proud of them all for finishing. We celebrated with cakes and sandwiches, and somehow most of them also managed to pluck up the energy to be manic on the park equipment at Draycote Water…. I don't know how they did it. 

The mad lot, getting ready to walk 10 miles! 

A few more hospital admissions later, I realised it wasn't fair on the others if I was still acting in the show, my health wasn't great, I'd missed so many rehearsals and I was unsure if I'd be actually able to perform on the night, so I quickly cast understudies and took a back seat, watching over the rehearsals I could attend, meeting up for updates and getting texts from a rather stressed Suzy!! She became chief director/organizer/do-gooder, and the show wouldn't be happening if not for her… Even with many ups and downs in rehearsals, (including breaking chairs from the church hall in a rather vicious game) I knew it would come together in the end… 

We also managed to get in touch with Helen Dulcamara, an experienced director whom I know as I worked with her when I was in 'The Crucible' and 'The Prime of Miss Jean Brodie' at Rugby Theatre. We got her involved, and she helped polish individual performances and pull the show together, which we are very grateful for. She also gave us the idea of involving the local dance school, CATS, and have the children from there performing, which I'm so looking forward to watching. 

The wonderful cast (nearly everyone!)

With a final dress rehearsal on Friday night, I can't believe its so close! From an idea concocted in my living room months ago, to what it's become today…. So many hours of hard work has gone into this show, and there are only 20 tickets left, so if you haven't already, I suggest you book them ASAP, as there's no guarantee they'll be there on the night!! Email: tsss-fundraiser-enquiries@hotmail.com to book. They cost £5, and ALL profits go to the Turner Syndrome Support Society, a charity incredibly close to my heart, as you all know.

Enjoy watching the teaser trailer, and be prepared, its going to be a fab night! 

https://www.youtube.com/watch?feature=player_embedded&v=0CBhO5TiewM

Wales Wales Wales!

So, The Cubitts managed to go on an actual day trip yesterday....
Waking up at 6:30am (I had forgotten that time existed - I definitely looked like an extra from the Walking Dead...), we packed the car with a picnic, and headed off to the beach in Wales. It was gloriously hot and sunny, we all got some much needed Vitamin D, and I read half a book overlooking the sparkly sea.

Dad was in charge of pushing me around the cobbled streets in the town, and I probably would have had less of a headache walking than being in that rickety wheelchair! I picked up some cross stitch kits, a craft I've never done before but am looking forward to starting. I also bought a new book... Not that I haven't got a whole shelf and an e-reader full of new novels to read already... But who can resist the temptation a second hand bookstore? Not me anyway. Books let me escape to other worlds, even when I have to stay where I am.

It was lovely to get out, and I was flat out asleep as soon as I got home, exhausted but happy.

Which one of us has HAD brain surgery, and which one of us NEEDS brain surgery?!

Today has actually been an ok day, pain wise. I've been attempting to make friendship bracelets, and covering my earphone wires with embroidery thread so they don't tangle (pictures will be up soon), and Daisy also made me a smoothie, which was deeelish. I'm going back into college on Thursday, to see if it's okay for me to restart my Performing Arts course. As most of you know, I was in and out of hospital so much last year that I didn't attend college for more than a few months in total. Obviously, that means I didn't complete the year, so will need to restart it again, and in the last few months I've been so sedentary with headaches and dizziness, that I don't know whether I will have the physical stamina to participate fully. However, if I don't do Acting this year, I will do a less intense textiles or art course instead, and when my health gets back on track, I shall of course return!

I think it's so important to appreciate the little things that happen everyday, so I am going to document  things I am grateful for, daily, whether in my journal or blog, and I really encourage you to do the same. In the last few days, my list goes as follows:

• Mums incredible Sunday roast
• Anti sickness medication
• Being on the beach with my family in the heat
• Having colour in my cheeks finally, so I don't look ill
• The smell of a 'new' second hand book
• Smoothies
• Daisy for making me laugh with her completely random videos she's recorded (Check my Facebook if you haven't seen them!)

Fish and Chips from the chippy tonight, with a side of painkillers, anti sickness and the DVD 'Driving Miss Daisy'… 

<3

Welcome!

I’m Meg, and I’m 17 years old. I love acting, reading, art, textiles, tea, cosy jumpers, and my cat. I’ve always been small. But once upon a time, I was tiny.

Me aged 7 (left) and younger sister Daisy

I was born with a condition called Turner Syndrome. This is a chromosome abnormality, which only affects girls. Two main features of Turners is short stature and infertility. I took daily growth hormone injections when I was younger to boost my height, which were a pain in the bum - literally, until I learnt to do them myself in my legs. After 5 years, I grew from 3ft 9 to 4ft 11 – one of my proudest achievements.

I was later also diagnosed with hydrocephalus and idiopathic intracranial hypertension, a condition that causes too much fluid on my brain, squashing it and giving me pretty much constant headaches. To try and drain the fluid and stop the headaches, I had a shunt fitted in 2011 . This is a tube from my brain to my stomach to drain some of the fluid – my very own plumbing. And I occassionally become a real life teletubbie- to monitor the condition I sometimes have had to have a bolt fitted onto my head, with a small wire going into my brain, which is connected to a monitor.

 

First Shunt Surgery 2011

ICP bolt - with my beautiful Mama

Since then I’ve also been diagnosed with P.O.T.S, a condition which affects my life in the way that I get very lightheaded and dizzy when I stand up, as my heart rate increases pretty dramatically. Treatment so far has been lots of fluid and salt – medically advised to have lots of mcdonalds chips!

Being a teenager with chronic illnesses means I live your life differently to most other people my age, but it doesn’t mean I don’t live it to the full. I have good days, okay days, and bad days, but I spend a lot of time resting at home. I used to thrive on being busy, going everywhere and doing absolutely everything, however, with Doctors recommendations, recently I’ve slowed my life down, but that doesn’t mean I’m sitting alone in my room watching rubbish daytime tv every single day (although I have watched more than my fair share of deal or no deal!). I have begun to find my creative side, and really enjoy drawing, painting, sewing, knitting, and making things, and have found its just as satisfying as going out. Taking it easy means I can lay in bed on my bad days and knit, with a few new movies and a cup of tea, or on good days I can sit downstairs and have friends over, or go out shopping in my wheelchair for a few hours! Having multiple health issues have given me an appreciation for life and has made me realise what’s actually important to me.

The Turner Syndrome Support Society is a vital support network for my family and I, offering friendship and understanding. They hold open days and conferences, which mean we have the opportunity to meet other families who are touched by the condition. Two years ago, I was asked to become the teen representative for them, meaning I embody every teenager with TS in England. It is an honour, and I decided to take this as an opportunity to give something back to the society raising not only funds, but awareness of this rare condition. My support system is vast, and their willingness, enthusiasm and ideas have made all the difference. Every penny raised for the society is much appreciated, if anybody wished to donate, my justgiving page is justgiving.com/meg-cubitt. Thankyou!

Me and my wonderful Turner girlies 

This is not a story warranting sympathy, but of optimism and hope.  I hope you’ll enjoy reading about my daily life, as I enjoy living it. <3