Wednesday, 21 December 2016
Get Ready for the Panto Snow White
Hi my name is Sophie, I'm 19. I have two cats Finn and Ashton.I love music, movies and I love going to concerts to see my favourite bands and singers. I'm also registered Visually Impaired, amongst other problems like my balance is not at its best. I also have hyrdrocephulas- I think thats spelt right! I am also an avid reader, ironic I know.
A thousand nights by E.K Johnston - A review
So I finished the book I spent most of 2016 on the hunt for. A Thousand Nights by E.K Johnston. That book. Its hard to describe so this review might be quite short. Thats not to say I didn't enjoy it. The opposite, I loved it. But its hard to sum up. I find reviews hard because although I can remember what happened and what the book was about. Being specific and remembering moments. Thats hard for me. But I will try.
Firstly this book is not like any book I've read before and I know I say that about the Blood For Blood trilogy by Catherine Doyle which is still true I haven't read a book like that. Its for different reasons. The writing in A Thousand Nights was so unlike anything I had read before. It just flowed, the nearest writer similar to the style is Laini Taylor. They both share this magical ability that the words on the page just flow. They flow lyrically and magically. Not like its a story, like its true. It really brings the story to life. The story just comes alive and flows, again, without it feeling contrite or forced. Or sounding corny. Its original. The story is unlike any I have read before. Its premise and the way its written. It took me a while to finish this book because you have to be in the right headspace to read it. Because its something you have to think about. Its told almost like its a myth; thats what it reminds me of. Myths.
So the premise is a girl, whose name we never find out which again adds to myth element. Takes her sisters place when the king of the land comes to choose a bride. King Lo Melkhin went on a desert trek one day and came out a different man, he goes to a different town, different region and takes a bride. But the bride he chooses never lasts long, they die not long after. To save her sister from that fate, she swaps places and becomes Lo Melkhin's wife. But something is different about her. She doesnt die.
Its a completely new idea. I loved how even though the ending was quite concise but it felt like it was completely explained. I'm going to say it again but the story flowed with a mythical aura to it.
When reading though, you have to be in the mood for it. And be prepared because its not how you expect a book to be. The way the story is, its kind of different and can take a bit of getting used to. Especially considering, you never find out peoples names, especially the main characters name, in the whole story. Its slow paced, lyrical, dense but fascinating novel.
The second book was released on Tuesday. It's called Spindle. Heres the description for the book on goodreads -
I have actually asked for Spindle for christmas, it shouldn't be as hard to find hopefully as this book was. I really enjoyed this book. I would recommend this book especially if you like a thousand and one nights. Or other retellings. I'm one of those people who if its done right I love retellings but there are some dodgy ones out there. But thats my opinion someone else might disagree.
I rate this book 3.5, obviously on goodreads I rated it 4 because I don't think you can do half stars. Well I don't think you can at least.
But yeah I hope you enjoyed this review. Its weird but I really struggle like I said with reviews I find it hard to remember what happened. I know what happened but to be able to write down and say what happened, its why I struggle with movie reviews as well. So much happens that I don't remember all of it. Then to write the bits around what happened my brain just can't take it! Working on it though.
Thanks for reading, hope you enjoyed it.
Sophie
Firstly this book is not like any book I've read before and I know I say that about the Blood For Blood trilogy by Catherine Doyle which is still true I haven't read a book like that. Its for different reasons. The writing in A Thousand Nights was so unlike anything I had read before. It just flowed, the nearest writer similar to the style is Laini Taylor. They both share this magical ability that the words on the page just flow. They flow lyrically and magically. Not like its a story, like its true. It really brings the story to life. The story just comes alive and flows, again, without it feeling contrite or forced. Or sounding corny. Its original. The story is unlike any I have read before. Its premise and the way its written. It took me a while to finish this book because you have to be in the right headspace to read it. Because its something you have to think about. Its told almost like its a myth; thats what it reminds me of. Myths.
So the premise is a girl, whose name we never find out which again adds to myth element. Takes her sisters place when the king of the land comes to choose a bride. King Lo Melkhin went on a desert trek one day and came out a different man, he goes to a different town, different region and takes a bride. But the bride he chooses never lasts long, they die not long after. To save her sister from that fate, she swaps places and becomes Lo Melkhin's wife. But something is different about her. She doesnt die.
Its a completely new idea. I loved how even though the ending was quite concise but it felt like it was completely explained. I'm going to say it again but the story flowed with a mythical aura to it.
When reading though, you have to be in the mood for it. And be prepared because its not how you expect a book to be. The way the story is, its kind of different and can take a bit of getting used to. Especially considering, you never find out peoples names, especially the main characters name, in the whole story. Its slow paced, lyrical, dense but fascinating novel.
The second book was released on Tuesday. It's called Spindle. Heres the description for the book on goodreads -
The world is made safe by a woman...but it is a very big world.
It has been generations since the Storyteller Queen drove the demon out of her husband and saved her country from fire and blood. Her family has prospered beyond the borders of their village, and two new kingdoms have sprouted on either side of the mountains where the demons are kept prisoner by bright iron, and by the creatures the Storyteller Queen made to keep them contained.
But the prison is crumbling. Through years of careful manipulation, a demon has regained her power. She has made one kingdom strong and brought the other to its knees, waiting for the perfect moment to strike. When a princess is born, the demon is ready with the final blow: a curse that will cost the princess her very soul, or force her to destroy her own people to save her life.
The threads of magic are tightly spun, binding princess and exiled spinners into a desperate plot to break the curse before the demon can become a queen of men. But the web of power is dangerously tangled--and they may not see the true pattern until it is unspooled.
I have actually asked for Spindle for christmas, it shouldn't be as hard to find hopefully as this book was. I really enjoyed this book. I would recommend this book especially if you like a thousand and one nights. Or other retellings. I'm one of those people who if its done right I love retellings but there are some dodgy ones out there. But thats my opinion someone else might disagree.
I rate this book 3.5, obviously on goodreads I rated it 4 because I don't think you can do half stars. Well I don't think you can at least.
But yeah I hope you enjoyed this review. Its weird but I really struggle like I said with reviews I find it hard to remember what happened. I know what happened but to be able to write down and say what happened, its why I struggle with movie reviews as well. So much happens that I don't remember all of it. Then to write the bits around what happened my brain just can't take it! Working on it though.
Thanks for reading, hope you enjoyed it.
Sophie
Hi my name is Sophie, I'm 19. I have two cats Finn and Ashton.I love music, movies and I love going to concerts to see my favourite bands and singers. I'm also registered Visually Impaired, amongst other problems like my balance is not at its best. I also have hyrdrocephulas- I think thats spelt right! I am also an avid reader, ironic I know.
Monday, 5 December 2016
A Streetcat Named Bob : a review
Finally I went and saw A Streetcat Named Bob. What a movie, I was sobbing through most of it. Good sobbing. This is my review and the messages behind the movie that I think are important.
So James Bowen (played by Luke Treadaway, he did it really well) is homeless and a drug addict. After having family problems, which seems to be a big factor in drug addiction and homelessness. He is currently on a methadone program, to come off heroine. But he mets up with a friend and well falls of track. Thats when we are introduced to his support worker Val (played by Joanne Frogart, downton abbey!) who tells him, look this is your last chance. Val manages to get James into supported housing and that is when the star of the show Bob, is introduced. That cat, I feel no one will understand the power that cat has and how much that cat has changed James's life. It was lovely to watch the movie and see how much James cares for Bob. He spent his last £20 on him for his antibiotics. I don't want to spoil the movie because everyone should go see it. One of two moments I want to touch on is when bob is scared off and James can't find him. I was sobbing. That is an emotion I as a cat owner never want to have to feel but so many do. It just showed how much Bob has an effect on James that more than worrying about himself and his drug rehabilitation appointments or anything else, he worried about Bob. Then when Bob came back, the relief and love that you could see was beautiful and again I cried. Sobbed. Another moment is before Bob gets scared off, a lady said to James she'd be happy to take him. Sometimes a person doesn't have much but an animal and that animal can be life changing. Also people called Bob names like vermin. When can we understand that cats are just as worthwhile and important as any animal. Cats are different to dogs and as soon as we stop comparing them its a start. Cats are very aloof at times but when you have their love, you have it in buckets. The amount of times stories have come across my Facebook page of people mistreating cats, as well as other animals, it makes my heart cry. Because look at James and Bob, not saying all cats will be like Bob but they can be amazing in their own right. Like when I got my cats they were, not strays, but easily could have been feral cats. They helped me with my depression, helped me with everything. Even if they don't quite love me like I do them. Animals are beautiful and can be partners for life. Sometimes they can be better than people.
Don't judge what people love because you don't know the reasons behind that partnership.
Another issue that this movie dealt with is homelessness. I can't say I know anyone who has been homeless. But everyone knows the person in their local town selling the big issue or in a corner on the street. Its shocking especially in big cities like London, Manchester, places like that. Then you hear stories of businesses putting spikes outside their business to deter homeless people from sleeping rough there. I was watching James, Bob and the cast of the movie on the one show and they were doing a segment on how homeless people are having to ride the night bus because they can't find somewhere to sleep that is somewhat safe. Can you imagine that, having to constantly be on alert for danger or someone trying to get rid of you or to take advantage of you. Another issue dealt with in the film is the issue of substance abuse. Which is a easy route to fall down if you are homeless. You want to blot out the pain of the situation. Its a grim situation. Which we could be doing a lot more to help. People aren't homeless from day one. Theres a spiral of events thats lead them to where they are. If we helped people before things get out of hand to the point where there are no options. As we see in the movie James had a serious drug problem and had tried before to get clean but it wasnt until Bob came along that he saw a reason to go on. Per se. Thats what people need, theres no point if nothings going to change. Its just a vicious cicyle unless you stop that pattern. If we helped people before they got to the stage of crisis. Whether it be through financial support, family support, something along those lines. Thats where mental health comes in. Mental health and homelessness are another big link. If we sorted out peoples mental health, people might be able to see the light at the end of the tunnel. They could imagine a brighter future. Thats depression. Not seeing a future, the outlook bleak. Im not saying I'm an expert on things like this but evidence is out there that there is a mental health and homeless crisis in there own rights. Put the two together and you have a dangerous combo. This may just sound like a lot of rambling, I hope it makes sense and doesn't offend anyone.
I also read that apparently there has been a spike in ginger cat burglaries. Why?! Bob is not any cat, not every ginger cat is like Bob. These cats are people's pets, their companions. If you want to house a cat and give it a loving home, be it ginger or not, go to a cat shelter where there are tons of cats that need a home. Don't take a cat that is just being a cat and already has a loving family. That can scare a cat and make it easy for them to get lost. Put yourself in that cats feet. Imagine if some random stranger came and took you away from your home environment. Also put yourself in the cats family's shoes. The worry and heartache of not knowing what has happened and where their cat is. There was a family who lost their cat back in september and I actually messaged them to show my support. Their heartbreak and worry. They posted that if anyone saw their posters they put up to take them down because they can't face the pain of doing that. I still can't understand the motivation to hurt a cat or any animal. It dumbfounds me it really does. Animals have every right to live as we do. We are no better than them.
I just hope the movie gets the message out that given the chance to change and the help anyone can take their second chance. It just took James a furry friend to realise his opportunity.
So do go see the movie, especially if you love cats because there are moments in the moment that are so relatable. You sit there thinking 'yep I know that feeling' or 'My cat does that'.
I loved it and I will be first in the queue when its released on dvd.
Thank you for reading
until next time
Sophie
So James Bowen (played by Luke Treadaway, he did it really well) is homeless and a drug addict. After having family problems, which seems to be a big factor in drug addiction and homelessness. He is currently on a methadone program, to come off heroine. But he mets up with a friend and well falls of track. Thats when we are introduced to his support worker Val (played by Joanne Frogart, downton abbey!) who tells him, look this is your last chance. Val manages to get James into supported housing and that is when the star of the show Bob, is introduced. That cat, I feel no one will understand the power that cat has and how much that cat has changed James's life. It was lovely to watch the movie and see how much James cares for Bob. He spent his last £20 on him for his antibiotics. I don't want to spoil the movie because everyone should go see it. One of two moments I want to touch on is when bob is scared off and James can't find him. I was sobbing. That is an emotion I as a cat owner never want to have to feel but so many do. It just showed how much Bob has an effect on James that more than worrying about himself and his drug rehabilitation appointments or anything else, he worried about Bob. Then when Bob came back, the relief and love that you could see was beautiful and again I cried. Sobbed. Another moment is before Bob gets scared off, a lady said to James she'd be happy to take him. Sometimes a person doesn't have much but an animal and that animal can be life changing. Also people called Bob names like vermin. When can we understand that cats are just as worthwhile and important as any animal. Cats are different to dogs and as soon as we stop comparing them its a start. Cats are very aloof at times but when you have their love, you have it in buckets. The amount of times stories have come across my Facebook page of people mistreating cats, as well as other animals, it makes my heart cry. Because look at James and Bob, not saying all cats will be like Bob but they can be amazing in their own right. Like when I got my cats they were, not strays, but easily could have been feral cats. They helped me with my depression, helped me with everything. Even if they don't quite love me like I do them. Animals are beautiful and can be partners for life. Sometimes they can be better than people.
Don't judge what people love because you don't know the reasons behind that partnership.
Another issue that this movie dealt with is homelessness. I can't say I know anyone who has been homeless. But everyone knows the person in their local town selling the big issue or in a corner on the street. Its shocking especially in big cities like London, Manchester, places like that. Then you hear stories of businesses putting spikes outside their business to deter homeless people from sleeping rough there. I was watching James, Bob and the cast of the movie on the one show and they were doing a segment on how homeless people are having to ride the night bus because they can't find somewhere to sleep that is somewhat safe. Can you imagine that, having to constantly be on alert for danger or someone trying to get rid of you or to take advantage of you. Another issue dealt with in the film is the issue of substance abuse. Which is a easy route to fall down if you are homeless. You want to blot out the pain of the situation. Its a grim situation. Which we could be doing a lot more to help. People aren't homeless from day one. Theres a spiral of events thats lead them to where they are. If we helped people before things get out of hand to the point where there are no options. As we see in the movie James had a serious drug problem and had tried before to get clean but it wasnt until Bob came along that he saw a reason to go on. Per se. Thats what people need, theres no point if nothings going to change. Its just a vicious cicyle unless you stop that pattern. If we helped people before they got to the stage of crisis. Whether it be through financial support, family support, something along those lines. Thats where mental health comes in. Mental health and homelessness are another big link. If we sorted out peoples mental health, people might be able to see the light at the end of the tunnel. They could imagine a brighter future. Thats depression. Not seeing a future, the outlook bleak. Im not saying I'm an expert on things like this but evidence is out there that there is a mental health and homeless crisis in there own rights. Put the two together and you have a dangerous combo. This may just sound like a lot of rambling, I hope it makes sense and doesn't offend anyone.
I also read that apparently there has been a spike in ginger cat burglaries. Why?! Bob is not any cat, not every ginger cat is like Bob. These cats are people's pets, their companions. If you want to house a cat and give it a loving home, be it ginger or not, go to a cat shelter where there are tons of cats that need a home. Don't take a cat that is just being a cat and already has a loving family. That can scare a cat and make it easy for them to get lost. Put yourself in that cats feet. Imagine if some random stranger came and took you away from your home environment. Also put yourself in the cats family's shoes. The worry and heartache of not knowing what has happened and where their cat is. There was a family who lost their cat back in september and I actually messaged them to show my support. Their heartbreak and worry. They posted that if anyone saw their posters they put up to take them down because they can't face the pain of doing that. I still can't understand the motivation to hurt a cat or any animal. It dumbfounds me it really does. Animals have every right to live as we do. We are no better than them.
I just hope the movie gets the message out that given the chance to change and the help anyone can take their second chance. It just took James a furry friend to realise his opportunity.
So do go see the movie, especially if you love cats because there are moments in the moment that are so relatable. You sit there thinking 'yep I know that feeling' or 'My cat does that'.
I loved it and I will be first in the queue when its released on dvd.
Thank you for reading
until next time
Sophie
Hi my name is Sophie, I'm 19. I have two cats Finn and Ashton.I love music, movies and I love going to concerts to see my favourite bands and singers. I'm also registered Visually Impaired, amongst other problems like my balance is not at its best. I also have hyrdrocephulas- I think thats spelt right! I am also an avid reader, ironic I know.
Monday, 14 November 2016
CVI Society Convention 2016
Hi so today is Saturday so that means I did my speech at the CVI Society Convention 2016. I think it went well. I think I may have plugged my blog a little too much, but I was so tired by the end of the convention and just because my memory is poor anyway, that I actually forgot who I actually gave one to! Like there were some people who I spoke to quite a bit so I knew I gave one to them but the people I only briefly met, they all sort of blurred into the same person.
As I think I have said before CVI is probably one of the most common types of visual impairments but it is not well understood because 1. Its the brain not the eyes and sometimes people don't believe its an actual condition. 2. Because its the brain, not everyone is exactly alike. Similar symptoms, for example you have a cold there is the symptoms of a runny nose and sore throat. But with CVI not everyone has the same set of issues and symptoms. 3. CVI is normally part of the problem. So for me I have CVI but I also have hydrocephalus and my other issues. So its for the most part never cut and dry.
I really enjoyed this convention. I met some lovely people and 3 young men who are around my age which is nice to see because I don't really know people my age with it. There were quite a few parents and professionals there too. I wanted with my speech to prove you can live with CVI. I feel quite grateful that I can't remember anything but having this vision. So I don't know what having full sight is. This is my normal. Like I said in my speech I know how life is short and you don't get any do overs. Life doesn't stop for anyone.
It was really nice to see professionals who get it, its quite refreshing considering I don't think my opthamoligist actually believed in CVI. I only really heard of CVI through my visual impairment teacher at the time, on her yearly visit, brought it up thinking maybe this is the answer. I learnt that visual impairment teachers can't actually diagnose CVI, an opthamoligist has to. Which to be honest I think is a little strange considering, in practise, that a visual impairment teacher will see the person using their functional vision and how they get on with daily life. Whereas the doctors only see a snippet out of someones life and it may be somewhere this person is very familiar with. I feel like those professionals who went, they're going to help so many families by taking the time to come to something like this. And taking the time to further their knowledge on CVI and what they can do better and to help people.
I met Janet who was really lovely and helpful. I couldn't organise it! When you think about it this is only the second convention the charity has done. There was wristbands, a raffle and even a Q&A.
So my speech slightly run over, after all my practising to keep it short and sweet but everyone didn't seem bored by the end which was good!
My mum and I stayed the night before because it was an early start. We got to Harrogate at about 2:30 after a few late trains and nearly missing the connecting trains. Then we did a bit of shopping. £63 worth in Lush. Let it be said I love Lush. We don't have one that near me so it called for it. I then brought a face mask, a cat sheet mask type one, my mum took a picture before we went to bed and we were in hysterics. Oh and I also bought A Streetcat named Bob. I really want to read it before the movie. At the same time as I was in Harrogate it was actually the premier for the movie so unfortunately I missed it. Bob and James were at the premier and so was Duchess Kate! I saw this book ages ago, I think around the time I'd got my cats but never thought to pick it up. I think I might do a separate post about why I feel so strongly positive about A streetcat named Bob.
Then we headed to the hotel and checked in and had a relax before we went down to the bar because we arranged to have dinner with Janet and everyone who had arrived the night before. We arrived at the hotel around 5:30 so we had a couple of hours to relax before we went to dinner. At 6:45 we headed down to the bar to meet Janet, as usual we either arrive really early or late. No in between. Then we met Janet and her husband, who were both really nice. There is a Facebook forum for the CVI society but because not everyone has a picture of them as their profile it was nice to put faces to names. Then more people started arriving, and we got chatting to people. I had a really nice conversation with, sorry if the name is wrong my memory is poor.
Then we went into the room where we were going to have our dinner, I didn't really like anything on the main menu but luckily the chefs were happy to cook me something from the bar menu. Then I started speaking to Tim, who is one of the trustees and was the tech person for the convention. I feel like the people I spoke to must have thought I talked a lot. Although I'll admit the days traveling caught up to me so not long after pudding, we went to back to our room. I'm not an early riser usually so I had to make a concerted effort to be up early as the convention started at 9:30 and I was on not long after.
So next morning I woke up early and we got ready and headed to breakfast. We also took a look at the room where the event was mainly taking place in. There were way more tables then I thought. My mum and I headed up to our room to get my speech and a moment to breath and then we headed down ready for the event.
I was on second after an opening speech by Janet. I was quite nervous, but I did it and people laughed at the funny bits. Which was what I was most worried about. So I did my speech and I think it went well. So then we had a few more speeches from professionals, like Professor Dutton, who I think was almost like one of those crazy scientists, in a good way. It was strangely fascinating because a lot of what he was saying made sense.
Then it was a break before workshop and my mum went to check out and I waited in the convention room. During that time I had quite a few people come up to me and complimented me on my speech and asked, or more me offering!, for one of my business cards which I had specially printed. Free promo for my blog and youtube. It was funny to hear that my speech was quite inspirational to people. My life to me has been normal and in that sense I'm glad I have no memory of seeing normal. I don't know the difference so when people say things like I'm inspiring I just think well I know no different than to just get on with things. Like I said in my speech, life doesn't slow down for nobody and we don't get no redo's. I know life can be taken away in an instant.
But I can also see that to these professionals and parents I am proof that don't always believe what the doctors are saying. Believe in your child. That every milestone is important and the only person who can limit them is them. That it may be a little harder to get to certain goals. But getting there will feel all that more victorious. Nothing is impossible and every achievement is to be celebrated. Not to say there won't be rough moments and dark moments but life is to be cherished and every life is valuable.
I think that made sense. Its hard to describe.
A cool moment was when one of the parents said her daughter wants to be in Wicked as well, who also has CVI. It made me feel less ridiculous for wanting that. I sometimes feel like this goal, to be an actress is ridiculous. Disabled people aren't that successful in it. I don't want to be defined by my disability. But I know disabled people are always going to be in the minority and we are always going to be portrayed as not being that successful or able to do it until someone comes and paves the way. Changes that and proves, I can play that role just as good as anyone else.
Then it was the first workshop of the day, by this point we had checked out of the hotel room so we couldn't go lie down. So since we felt a little stuffy, because it was warm in there. We headed to Harrogate town centre. Which was 2 minutes in a taxi from the hotel. I also bought myself a little treat for doing my speech. There was a Space NK. I know how luxurious. I call it a posh debenhams. It goes Debenhams, Selfridges then Space NK in poshness. I went in there the day before because I wanted to get a Becca highlighter and I didn't see it. I went in and asked and she showed us to the little counter, apparently I hadn't spotted it even though I walked right past it the day before. So I got the Becca highlighter in pearl, even though I asked for opal but I think now that opal might have been too dark for me. I also bought a Nars concealer. We only had about an hour before lunch break. So we went to get a costa takeaway but they didn't have my drink, peach lemonade and the caramel shortbread cake I have my mum just got a coffee. Then we headed back to the hotel.
We had lunch and I spoke to a lovely lady called Jen/Jan and spoke about my dream to be Elphaba and how her daughter works in acting/west end.
We then headed into the afternoon workshop and I wasnt sure what we were meant to do. Apparently
it was a Q&A for professor Dutton and Janet. They asked me a few questions before asking them to me to gain my opinion but to be honest I don't think I was that up to answering questions. I was shattered. I tried though. Then after the workshop there was a big Q&A and a raffle. Then closing speeches and then it was over. We had a chat with Janet, who kindly said her husband would take us to the train station. I got quite a few leaflets to hand out, I went to get my eyes tested on monday and I plan to take some leaflets in when I pick my glasses up. Yes i've got new glasses, they're quite funky.
We bumped into some of the people from the conference which was interesting as one of them was part of the national autistic society and is an expert in Autism. Which as my brother has aspergers is quite interesting. I noticed a interesting link between autism and sight impairment in general. Its quite interesting. Although there was a discussion at the conference of people being misdiagnosed as autistic when really they have CVI because some of the symptoms are the same for both.
Then we got the train to leeds, which all the trains we managed to get on alright. Then the train from leeds to home. We got home around 8:30 - 9pm. I had a chinese because I was starving then I went to bed. Mu dog Pearl was so excited to see us. My mum and I agreed we'll defiantly go next year, apparently it might be in bristol that area. We might all go as well.
I want to say a special thank you to Janet for inviting us, even though we would of come anyway. Thank you we had a really lovely time, it was lovely to meet people who are in similar boats as us. To relate to people.
Until next time,
Sophie
As I think I have said before CVI is probably one of the most common types of visual impairments but it is not well understood because 1. Its the brain not the eyes and sometimes people don't believe its an actual condition. 2. Because its the brain, not everyone is exactly alike. Similar symptoms, for example you have a cold there is the symptoms of a runny nose and sore throat. But with CVI not everyone has the same set of issues and symptoms. 3. CVI is normally part of the problem. So for me I have CVI but I also have hydrocephalus and my other issues. So its for the most part never cut and dry.
I really enjoyed this convention. I met some lovely people and 3 young men who are around my age which is nice to see because I don't really know people my age with it. There were quite a few parents and professionals there too. I wanted with my speech to prove you can live with CVI. I feel quite grateful that I can't remember anything but having this vision. So I don't know what having full sight is. This is my normal. Like I said in my speech I know how life is short and you don't get any do overs. Life doesn't stop for anyone.
It was really nice to see professionals who get it, its quite refreshing considering I don't think my opthamoligist actually believed in CVI. I only really heard of CVI through my visual impairment teacher at the time, on her yearly visit, brought it up thinking maybe this is the answer. I learnt that visual impairment teachers can't actually diagnose CVI, an opthamoligist has to. Which to be honest I think is a little strange considering, in practise, that a visual impairment teacher will see the person using their functional vision and how they get on with daily life. Whereas the doctors only see a snippet out of someones life and it may be somewhere this person is very familiar with. I feel like those professionals who went, they're going to help so many families by taking the time to come to something like this. And taking the time to further their knowledge on CVI and what they can do better and to help people.
I met Janet who was really lovely and helpful. I couldn't organise it! When you think about it this is only the second convention the charity has done. There was wristbands, a raffle and even a Q&A.
So my speech slightly run over, after all my practising to keep it short and sweet but everyone didn't seem bored by the end which was good!
My mum and I stayed the night before because it was an early start. We got to Harrogate at about 2:30 after a few late trains and nearly missing the connecting trains. Then we did a bit of shopping. £63 worth in Lush. Let it be said I love Lush. We don't have one that near me so it called for it. I then brought a face mask, a cat sheet mask type one, my mum took a picture before we went to bed and we were in hysterics. Oh and I also bought A Streetcat named Bob. I really want to read it before the movie. At the same time as I was in Harrogate it was actually the premier for the movie so unfortunately I missed it. Bob and James were at the premier and so was Duchess Kate! I saw this book ages ago, I think around the time I'd got my cats but never thought to pick it up. I think I might do a separate post about why I feel so strongly positive about A streetcat named Bob.
Then we headed to the hotel and checked in and had a relax before we went down to the bar because we arranged to have dinner with Janet and everyone who had arrived the night before. We arrived at the hotel around 5:30 so we had a couple of hours to relax before we went to dinner. At 6:45 we headed down to the bar to meet Janet, as usual we either arrive really early or late. No in between. Then we met Janet and her husband, who were both really nice. There is a Facebook forum for the CVI society but because not everyone has a picture of them as their profile it was nice to put faces to names. Then more people started arriving, and we got chatting to people. I had a really nice conversation with, sorry if the name is wrong my memory is poor.
Then we went into the room where we were going to have our dinner, I didn't really like anything on the main menu but luckily the chefs were happy to cook me something from the bar menu. Then I started speaking to Tim, who is one of the trustees and was the tech person for the convention. I feel like the people I spoke to must have thought I talked a lot. Although I'll admit the days traveling caught up to me so not long after pudding, we went to back to our room. I'm not an early riser usually so I had to make a concerted effort to be up early as the convention started at 9:30 and I was on not long after.
So next morning I woke up early and we got ready and headed to breakfast. We also took a look at the room where the event was mainly taking place in. There were way more tables then I thought. My mum and I headed up to our room to get my speech and a moment to breath and then we headed down ready for the event.
I was on second after an opening speech by Janet. I was quite nervous, but I did it and people laughed at the funny bits. Which was what I was most worried about. So I did my speech and I think it went well. So then we had a few more speeches from professionals, like Professor Dutton, who I think was almost like one of those crazy scientists, in a good way. It was strangely fascinating because a lot of what he was saying made sense.
Then it was a break before workshop and my mum went to check out and I waited in the convention room. During that time I had quite a few people come up to me and complimented me on my speech and asked, or more me offering!, for one of my business cards which I had specially printed. Free promo for my blog and youtube. It was funny to hear that my speech was quite inspirational to people. My life to me has been normal and in that sense I'm glad I have no memory of seeing normal. I don't know the difference so when people say things like I'm inspiring I just think well I know no different than to just get on with things. Like I said in my speech, life doesn't slow down for nobody and we don't get no redo's. I know life can be taken away in an instant.
But I can also see that to these professionals and parents I am proof that don't always believe what the doctors are saying. Believe in your child. That every milestone is important and the only person who can limit them is them. That it may be a little harder to get to certain goals. But getting there will feel all that more victorious. Nothing is impossible and every achievement is to be celebrated. Not to say there won't be rough moments and dark moments but life is to be cherished and every life is valuable.
I think that made sense. Its hard to describe.
A cool moment was when one of the parents said her daughter wants to be in Wicked as well, who also has CVI. It made me feel less ridiculous for wanting that. I sometimes feel like this goal, to be an actress is ridiculous. Disabled people aren't that successful in it. I don't want to be defined by my disability. But I know disabled people are always going to be in the minority and we are always going to be portrayed as not being that successful or able to do it until someone comes and paves the way. Changes that and proves, I can play that role just as good as anyone else.
Then it was the first workshop of the day, by this point we had checked out of the hotel room so we couldn't go lie down. So since we felt a little stuffy, because it was warm in there. We headed to Harrogate town centre. Which was 2 minutes in a taxi from the hotel. I also bought myself a little treat for doing my speech. There was a Space NK. I know how luxurious. I call it a posh debenhams. It goes Debenhams, Selfridges then Space NK in poshness. I went in there the day before because I wanted to get a Becca highlighter and I didn't see it. I went in and asked and she showed us to the little counter, apparently I hadn't spotted it even though I walked right past it the day before. So I got the Becca highlighter in pearl, even though I asked for opal but I think now that opal might have been too dark for me. I also bought a Nars concealer. We only had about an hour before lunch break. So we went to get a costa takeaway but they didn't have my drink, peach lemonade and the caramel shortbread cake I have my mum just got a coffee. Then we headed back to the hotel.
We had lunch and I spoke to a lovely lady called Jen/Jan and spoke about my dream to be Elphaba and how her daughter works in acting/west end.
We then headed into the afternoon workshop and I wasnt sure what we were meant to do. Apparently
it was a Q&A for professor Dutton and Janet. They asked me a few questions before asking them to me to gain my opinion but to be honest I don't think I was that up to answering questions. I was shattered. I tried though. Then after the workshop there was a big Q&A and a raffle. Then closing speeches and then it was over. We had a chat with Janet, who kindly said her husband would take us to the train station. I got quite a few leaflets to hand out, I went to get my eyes tested on monday and I plan to take some leaflets in when I pick my glasses up. Yes i've got new glasses, they're quite funky.
We bumped into some of the people from the conference which was interesting as one of them was part of the national autistic society and is an expert in Autism. Which as my brother has aspergers is quite interesting. I noticed a interesting link between autism and sight impairment in general. Its quite interesting. Although there was a discussion at the conference of people being misdiagnosed as autistic when really they have CVI because some of the symptoms are the same for both.
Then we got the train to leeds, which all the trains we managed to get on alright. Then the train from leeds to home. We got home around 8:30 - 9pm. I had a chinese because I was starving then I went to bed. Mu dog Pearl was so excited to see us. My mum and I agreed we'll defiantly go next year, apparently it might be in bristol that area. We might all go as well.
I want to say a special thank you to Janet for inviting us, even though we would of come anyway. Thank you we had a really lovely time, it was lovely to meet people who are in similar boats as us. To relate to people.
Until next time,
Sophie
Hi my name is Sophie, I'm 19. I have two cats Finn and Ashton.I love music, movies and I love going to concerts to see my favourite bands and singers. I'm also registered Visually Impaired, amongst other problems like my balance is not at its best. I also have hyrdrocephulas- I think thats spelt right! I am also an avid reader, ironic I know.
Tuesday, 4 October 2016
Waiting for it.
Hi today this is more a vent then a actual blog post. So I got the actual 'yes you are growth hormone deficient' talk. But what do you know i'm also a little low in Cortisol. Which is even more a blow because thats the one we didn't want for me to be deficient on because the possible side effects of taking hydrocortisone are long and not good if you have a clotting disorder. It also meant having a emergency medication for cases of emergency. Although the doctor was saying she would discuss with my doctor. Although when I then went to see my endocrinologist nurse, who is the same lady who run my glugacon test, was lovely and said that because I had gone without it so long without incident and it was only a little low there may not be a need for it or perhaps just to take it in moments of illness. Which then changed to just keeping an eye on it because taking growth hormone can make it go low so keep an eye on it and symptoms to make sure it doesn't go too low. But still the growth hormone replacement therapy is something that is defiantly happening as much as I would prefer it not. I mean it will hopefully make me feel better but still the thought of injecting myself everyday doesn't thrill me. So after our appointment with the doctor we went to talk to my endocrinologist nurse and we went through all the different devices. Which when we first walked in to the room I was secretly a little terrified. It suddenly became real. Where as before we knew about it but we only really knew what we had researched. Which is not the same as being in the room and your nurse going through the injection procedure. Its a shock to the system.
Then you hear about how sometimes when you start taking growth hormone it gives other deficiencies time to show up. So for the next 9 months I'm going to be under close observation by my doctors and my endocrinologist nurse. Well at least The body shop and the stock shop will be getting lots of business from me. I actually said to my mum, we'll be able to buy the stock shops christmas range. The stock shop has all those kind of things that you know you don't really need but you buy anyway!
Then today I found out someone from my school recently died, which I suppose is part of why my school is different then others. We are faced sometimes with the prospect that some of our classmates aren't going to reach adult hood or grow older. But its still a wake up call and a shock because I know these people, I've seen or met a lot of their families. They don't deserve this. I'm not a fan of social media tributes because, I'm just not. Its an even bitter pill to take because they had hydrocephalus, I mean they also had other medical issues but you realise the knife edge of life you are standing on. I'm not saying because I have hydrocephalus its life threatening because its not when its treated but when its not and its left undetected it can cause serious damage and sometimes death. Not saying that's why they died. It's just something we both shared. If that makes sense. Its times like this that you remember how fragile life is. It reminds of a line in Me Before You where Will's mum is saying how she can see all that he was, all that he is and all that he will never be. She sees his life but knows that it won't happen. You see all that these people could become, the life they would lead and deserve but know that it won't happen. Its part and parcel of my school but it doesn't mean it gets any easier.
These lyrics from Hamilton "The world was enough" kind sum it up in a sense.
Its the waiting that is doing my mind in. I know I am growth hormone deficient, I know about the treatment. But know I'm waiting for the supplies to come to start. It then gives you time to panic. Where as I know that once I start it, I should, hopefully feel so much better. I'm just waiting for that moment. I'm also sick of people telling me I'm brave. I mean I get most people would not stab themselves with a needle everyday. Well I'm sure they would if the situation pushed them to do it. I don't need pity, its not going to change anything. I'm already a charity case when people see me with my long cane or wheelchair. I want people to just understand. I had a minor meltdown the other day in a car park after a group I go to. Because everyone there was able to joke and laugh and their lives were not consumed by the thought of needles and self injecting and side effects and the possibility of other things being low and getting lower by taking growth hormone. It was all too much. I just want people to understand that yes it sucks, no I'm not really okay, I'm getting better. But I'm not scared or its not I don't want to have this treatment. Because I know ultimately that the benefits and how much better I should hopefully feel will out weigh the negative. It will hopefully give me a better quality of life. Its just the waiting for it to start.
But on brighter notes I read somewhere that Hamilton: the musical uk tickets are going on sale in November. Which I am so excited for. I know how in demand Hamilton tickets are so I'm crossing my fingers I get tickets. I've already made plans for it if I get tickets. My mum doesn't want to come to this one so I asked Chanel as I know she loves musicals and is interested in seeing Hamilton. Also I'm getting videos back up on my channel. My costume for the panto arrived, it fits and I even have a petticoat underneath to make the skirt fluffed up. Great description. But I just about fit through the door in it! I'm looking forward to the panto! Also as I plan to have this up Monday, I should have my Orphan Black Convention tickets. I am going with my mum and hopefully a family friend who also likes Orphan Black. I'm so excited for it. I dont want to tempt anything but people and the convention company themselves have said there is no point doing a convention if you don't get Tatiana Maslany, so they must have some hope they can get her! Another guest or two I hope they get is Kevin Hanchard, Maria Doyle Kennedy, Jordan Gavaris can you i
imagine that! Or Kristan Braun! Kathryn Alexandre would be pretty cool as she has pretty important role and I don't think she gets enough credit or recognition for it. Oh and Josh Vokey! Oh I'd love if Josh Vokey went because then I can ask about Denise! I know a lot of people want Tatiana Maslany and so would I, I mean can you imagine that?! I don't think I'd cope knowing she was going. I think I wouldn't be able to contain my excitement. But like I said I would love guests like Josh Vokey and Dylan Bruce and Ari Millen. Imagine if Evelyne Brochu was one of the guests? That would be incredible. I think I'd ask whats her secret to such amazing hair. Actually I'd ask Tatiana Maslany that as well because they both have curly hair and their hair always looks incredible. I need to know their hair secrets. I'm just happy to be going to a convention where everyone loves Orphan Black as much as I do!
Yeah I'll have to start a countdown to the convention.
But if you want to know more about adult growth hormone defieceny and what it affects, here is a pretty good guide that has a pretty good description of what being deficient in it feels like-
Thanks for reading,
hopefully it won't be long until my next post.
Until next time
Sophie
Then you hear about how sometimes when you start taking growth hormone it gives other deficiencies time to show up. So for the next 9 months I'm going to be under close observation by my doctors and my endocrinologist nurse. Well at least The body shop and the stock shop will be getting lots of business from me. I actually said to my mum, we'll be able to buy the stock shops christmas range. The stock shop has all those kind of things that you know you don't really need but you buy anyway!
Then today I found out someone from my school recently died, which I suppose is part of why my school is different then others. We are faced sometimes with the prospect that some of our classmates aren't going to reach adult hood or grow older. But its still a wake up call and a shock because I know these people, I've seen or met a lot of their families. They don't deserve this. I'm not a fan of social media tributes because, I'm just not. Its an even bitter pill to take because they had hydrocephalus, I mean they also had other medical issues but you realise the knife edge of life you are standing on. I'm not saying because I have hydrocephalus its life threatening because its not when its treated but when its not and its left undetected it can cause serious damage and sometimes death. Not saying that's why they died. It's just something we both shared. If that makes sense. Its times like this that you remember how fragile life is. It reminds of a line in Me Before You where Will's mum is saying how she can see all that he was, all that he is and all that he will never be. She sees his life but knows that it won't happen. You see all that these people could become, the life they would lead and deserve but know that it won't happen. Its part and parcel of my school but it doesn't mean it gets any easier.
These lyrics from Hamilton "The world was enough" kind sum it up in a sense.
" Death doesn’t discriminate
Between the sinners and the saints
It takes and it takes and it takes
History obliterates
In every picture it paints"
Its the waiting that is doing my mind in. I know I am growth hormone deficient, I know about the treatment. But know I'm waiting for the supplies to come to start. It then gives you time to panic. Where as I know that once I start it, I should, hopefully feel so much better. I'm just waiting for that moment. I'm also sick of people telling me I'm brave. I mean I get most people would not stab themselves with a needle everyday. Well I'm sure they would if the situation pushed them to do it. I don't need pity, its not going to change anything. I'm already a charity case when people see me with my long cane or wheelchair. I want people to just understand. I had a minor meltdown the other day in a car park after a group I go to. Because everyone there was able to joke and laugh and their lives were not consumed by the thought of needles and self injecting and side effects and the possibility of other things being low and getting lower by taking growth hormone. It was all too much. I just want people to understand that yes it sucks, no I'm not really okay, I'm getting better. But I'm not scared or its not I don't want to have this treatment. Because I know ultimately that the benefits and how much better I should hopefully feel will out weigh the negative. It will hopefully give me a better quality of life. Its just the waiting for it to start.
But on brighter notes I read somewhere that Hamilton: the musical uk tickets are going on sale in November. Which I am so excited for. I know how in demand Hamilton tickets are so I'm crossing my fingers I get tickets. I've already made plans for it if I get tickets. My mum doesn't want to come to this one so I asked Chanel as I know she loves musicals and is interested in seeing Hamilton. Also I'm getting videos back up on my channel. My costume for the panto arrived, it fits and I even have a petticoat underneath to make the skirt fluffed up. Great description. But I just about fit through the door in it! I'm looking forward to the panto! Also as I plan to have this up Monday, I should have my Orphan Black Convention tickets. I am going with my mum and hopefully a family friend who also likes Orphan Black. I'm so excited for it. I dont want to tempt anything but people and the convention company themselves have said there is no point doing a convention if you don't get Tatiana Maslany, so they must have some hope they can get her! Another guest or two I hope they get is Kevin Hanchard, Maria Doyle Kennedy, Jordan Gavaris can you i
imagine that! Or Kristan Braun! Kathryn Alexandre would be pretty cool as she has pretty important role and I don't think she gets enough credit or recognition for it. Oh and Josh Vokey! Oh I'd love if Josh Vokey went because then I can ask about Denise! I know a lot of people want Tatiana Maslany and so would I, I mean can you imagine that?! I don't think I'd cope knowing she was going. I think I wouldn't be able to contain my excitement. But like I said I would love guests like Josh Vokey and Dylan Bruce and Ari Millen. Imagine if Evelyne Brochu was one of the guests? That would be incredible. I think I'd ask whats her secret to such amazing hair. Actually I'd ask Tatiana Maslany that as well because they both have curly hair and their hair always looks incredible. I need to know their hair secrets. I'm just happy to be going to a convention where everyone loves Orphan Black as much as I do!
Yeah I'll have to start a countdown to the convention.
But if you want to know more about adult growth hormone defieceny and what it affects, here is a pretty good guide that has a pretty good description of what being deficient in it feels like-
Thanks for reading,
hopefully it won't be long until my next post.
Until next time
Sophie
Hi my name is Sophie, I'm 19. I have two cats Finn and Ashton.I love music, movies and I love going to concerts to see my favourite bands and singers. I'm also registered Visually Impaired, amongst other problems like my balance is not at its best. I also have hyrdrocephulas- I think thats spelt right! I am also an avid reader, ironic I know.
Sunday, 18 September 2016
Test results and a change.
Hi I did plan to post a video and blog post this past week but I didn't. Sorry about that. I went on holiday with my family and had a really nice time. Nicer than I thought I would! LOL!
*update it is the 18th September so my holiday was a few weeks ago now and it finally looks like we may be entering autumn/winter weather which I am thrilled about. I don't deal very well in heat. I mean I remember very clearly this time in primary school that I went to school and I had a headache and then I suddenly felt very sick and I couldn't get out of lesson to go to the bathroom quick enough so I was sick over my slope board and desk. All in front of the rest of my class. Although ironically my teacher told me that although I didn't feel well my work was really good. That memory sticks with me. I mean I got to go home early! Also it means that my dr has started up again and we are preparing to put on a panto. I know a christmas panto. We have scripts to learn and dances. I have a song. But its not just any old panto, its a disney all sorts panto so we all are stars there are no background parts. Its going to be really good so I'm hoping to update on here about the panto every so often.
Also I was invited to a whizz kids child in a chair day, which is were you are invited to come to a venue and they talk to you about your needs and things like that and how the piece of the equipment, in my case an electric wheelchair, will help me. Then you take the wheelchair home. Which was an experience because our local train station you can never quite guarantee someone will be there with the ramp to help us off the train which always gets me quite nervous but it was alright as someone was there with the ramp. Also did you know that st pancras station across the road from kings cross has a mac. It was a revelation to me, still waiting for the urban decay in kings cross to open, and I had a bit of a spending spree! Well I didn't get into this am dram group so I had some money to spare! I just wanted to thank everybody at whizz kids because I didn't expect for whizz kids to help me since I'm 18 but because I applied for it before I was 18 thats the loop hole in how I got my chair. But also I never expected the chair I got, its so much more than I expected and its just going to help me so much. I know I would never be able to afford a chair like that on my own, well at least not in the near future. Its amazing what they do and they don't just provide equipment, they help with work placements which I am hopefully going to enquire about. I just want to thank them so much. Here is a link to their web page to learn more about what they do and if they can help you! -
Also I can't remember if I mentioned this but I am speaking at the CVI convention in November so I've also been working on my speech. I'm really looking forward to it and to hear from people who are experts in CVI. But also people who know people and have CVI. But its also another thing to prepare for.
I know I haven't posted anything in awhile. Thats because I have been quite busy in terms of revising for my GCSE's, going to the whizz kids child in a chair in a day, then rehearsing for the panto. Rehearsing for the panto seems to be taking up a lot of my time because as you know I have memory difficulties and so memorising things like this is always going to be difficult so to help myself I rehearse my lines everynight with my brother George who is in the panto as well. I also have page markers to show me where my lines are and how far apart they are. Just added organisation. I also have my *much awaited* hospital appointment to discuss my treatment for growth hormone treatment and I know its not simple and they have to take time to find the right dosage for me so it could mean I have frequent hospital trips for the next year possibly. Writing and preparing my speech for the CVI convention. But I am going to try and be on top of all this and at least post once a month. Fingers crossed*
But as the title suggests I have had my test results. A few weeks ago I had test called a Glugacon test to see if I was growth hormone deficient and well when I got back from my holiday I had a letter that seemed to suggest my test results were in. So I rung the nurses who did the test. They rung back right in the middle of when I was volunteering in my local library for the summer reading challenge. I told my mum that would happen! So I managed to take a break to answer the call. Thanks to the lovely staff at the library. I am officially growth hormone deficient. I have an appointment to go back to see the doctor and to meet the Endocrinologist nurses to discuss treatment and the types of treatment. As the treatment is a daily injection of growth hormone, almost like diabetes because you use a epi pen type device. So its just to talk about things like that. But also it means I have to be careful in what I eat now. Being growth hormone deficit can affect your bodies fat deposits. It can give you high cholesterol. Which when you have a clotting disorder is probably not good. I watched this program this evening called 1 hour to save your life, its an amazing program to see people who should have died come back and survive. But there was this one person who had a heart attack and heart disease. It made me think, that could be me if I am not careful. It sucks to suddenly have to think about that but that is the situation we are in. Thankfully my family are also going to go on this lifestyle change with me. Also taking growth hormone can make it extremely difficult to lose weight, which when I take amytryptillian which makes me gain some weight anyway is difficult, is not easy when life seems to tell you you have to be a certain weight and size. So risk of high cholesterol and difficulty to lost weight. Whoopee! Not! lol
It kind of makes me angry to think my gp was the one to find this. Not any of my specialist doctors, who especially the oncologists knowing the damage brain cancer and its treatment can have on the brain did not discover this. It took my gp referring me for chronic fatigue to another doctor who then did a blood test that signalled that my growth hormone was not right. A simple blood test was all it took. It frustrates me that this could have been dealt with years ago and that it could be second nature to me. It damages your heart, your bones, your mental well being. To think my last few years of school could have been so different.
Apparently one of the symptoms is a sense of doom. Now I may give off the impression of a happy person with no worries. I am exactly the opposite, my psychologist described it as catastrypising. I worry over weird, stupid and uncontrollable things. Irrational things which even though I know they're silly thoughts I can't get rid of them. So to know it could be down to this growth hormone deficiency is eye opening to me and the fact that depression and anxiety are also symptoms also ring true with me. My whole life I have probably almost all the symptoms of the deficieny. My life could be so different.
Theres no guarantee that once I start the treatment that it will change my life completely. Obviously i'm hoping for some improvement but I am not expecting miracles.
Its going to be a complete change, I mean I got all this news one day after we came back from our holiday which was a bit of a feeling of deflation but at the same time relief. Sometimes the feeling of not knowing whats wrong is worse than knowing something is wrong and what it is. Knowing you were right that something wasn't as it should be.
Another symptom that has plagued my life and is part of being growth hormone deficient is fatigue. Fatigue has plagued my life. When I come back from identity I usually go to sleep because I'm knackered. I'm always tired and I have little to no energy. Its probably one of the symptoms that really affects my life. Its actually how I got to this point. My gp, who is probably one the best doctors I've ever had. Like I cannot credit him enough, referred me to the local endocrinologist that specialised in chronic fatigue, which is what they thought I had. The doctor we saw then did blood tests which revealed a low growth hormone and then my gp referred us to my main hospital for the right testing to definitively say I'm growth hormone deficient and so we started on this journey.
So thats where we are at and I won't really know more until I have my next appointment in the next week. I'm kind of looking forward to it but at the same time not because then it will be official.
But yeah.
In other news there may finally be a orphan black uk convention and I cannot contain my excitement. Also by monday Tatiana should, if all is right in the world, be an emmy winner! I mean she should win because her acting is amazing. I don't have many inspirations but she is one them. Especially as I want to be an actress and I would love to be as good an actress as she is. The layers to her characters are just unrivalled. But imagine if the convention goes ahead and Tatiana goes. I cannot cope with that idea. I think I'd be a bumbling mess. I mean I'd be a bumbling mess whoever goes!
Thank you for reading,
hopefully the next video/blogpost shouldn't be a long wait for,
until next time
Sophie
*update it is the 18th September so my holiday was a few weeks ago now and it finally looks like we may be entering autumn/winter weather which I am thrilled about. I don't deal very well in heat. I mean I remember very clearly this time in primary school that I went to school and I had a headache and then I suddenly felt very sick and I couldn't get out of lesson to go to the bathroom quick enough so I was sick over my slope board and desk. All in front of the rest of my class. Although ironically my teacher told me that although I didn't feel well my work was really good. That memory sticks with me. I mean I got to go home early! Also it means that my dr has started up again and we are preparing to put on a panto. I know a christmas panto. We have scripts to learn and dances. I have a song. But its not just any old panto, its a disney all sorts panto so we all are stars there are no background parts. Its going to be really good so I'm hoping to update on here about the panto every so often.
Also I was invited to a whizz kids child in a chair day, which is were you are invited to come to a venue and they talk to you about your needs and things like that and how the piece of the equipment, in my case an electric wheelchair, will help me. Then you take the wheelchair home. Which was an experience because our local train station you can never quite guarantee someone will be there with the ramp to help us off the train which always gets me quite nervous but it was alright as someone was there with the ramp. Also did you know that st pancras station across the road from kings cross has a mac. It was a revelation to me, still waiting for the urban decay in kings cross to open, and I had a bit of a spending spree! Well I didn't get into this am dram group so I had some money to spare! I just wanted to thank everybody at whizz kids because I didn't expect for whizz kids to help me since I'm 18 but because I applied for it before I was 18 thats the loop hole in how I got my chair. But also I never expected the chair I got, its so much more than I expected and its just going to help me so much. I know I would never be able to afford a chair like that on my own, well at least not in the near future. Its amazing what they do and they don't just provide equipment, they help with work placements which I am hopefully going to enquire about. I just want to thank them so much. Here is a link to their web page to learn more about what they do and if they can help you! -
Also I can't remember if I mentioned this but I am speaking at the CVI convention in November so I've also been working on my speech. I'm really looking forward to it and to hear from people who are experts in CVI. But also people who know people and have CVI. But its also another thing to prepare for.
I know I haven't posted anything in awhile. Thats because I have been quite busy in terms of revising for my GCSE's, going to the whizz kids child in a chair in a day, then rehearsing for the panto. Rehearsing for the panto seems to be taking up a lot of my time because as you know I have memory difficulties and so memorising things like this is always going to be difficult so to help myself I rehearse my lines everynight with my brother George who is in the panto as well. I also have page markers to show me where my lines are and how far apart they are. Just added organisation. I also have my *much awaited* hospital appointment to discuss my treatment for growth hormone treatment and I know its not simple and they have to take time to find the right dosage for me so it could mean I have frequent hospital trips for the next year possibly. Writing and preparing my speech for the CVI convention. But I am going to try and be on top of all this and at least post once a month. Fingers crossed*
But as the title suggests I have had my test results. A few weeks ago I had test called a Glugacon test to see if I was growth hormone deficient and well when I got back from my holiday I had a letter that seemed to suggest my test results were in. So I rung the nurses who did the test. They rung back right in the middle of when I was volunteering in my local library for the summer reading challenge. I told my mum that would happen! So I managed to take a break to answer the call. Thanks to the lovely staff at the library. I am officially growth hormone deficient. I have an appointment to go back to see the doctor and to meet the Endocrinologist nurses to discuss treatment and the types of treatment. As the treatment is a daily injection of growth hormone, almost like diabetes because you use a epi pen type device. So its just to talk about things like that. But also it means I have to be careful in what I eat now. Being growth hormone deficit can affect your bodies fat deposits. It can give you high cholesterol. Which when you have a clotting disorder is probably not good. I watched this program this evening called 1 hour to save your life, its an amazing program to see people who should have died come back and survive. But there was this one person who had a heart attack and heart disease. It made me think, that could be me if I am not careful. It sucks to suddenly have to think about that but that is the situation we are in. Thankfully my family are also going to go on this lifestyle change with me. Also taking growth hormone can make it extremely difficult to lose weight, which when I take amytryptillian which makes me gain some weight anyway is difficult, is not easy when life seems to tell you you have to be a certain weight and size. So risk of high cholesterol and difficulty to lost weight. Whoopee! Not! lol
It kind of makes me angry to think my gp was the one to find this. Not any of my specialist doctors, who especially the oncologists knowing the damage brain cancer and its treatment can have on the brain did not discover this. It took my gp referring me for chronic fatigue to another doctor who then did a blood test that signalled that my growth hormone was not right. A simple blood test was all it took. It frustrates me that this could have been dealt with years ago and that it could be second nature to me. It damages your heart, your bones, your mental well being. To think my last few years of school could have been so different.
Apparently one of the symptoms is a sense of doom. Now I may give off the impression of a happy person with no worries. I am exactly the opposite, my psychologist described it as catastrypising. I worry over weird, stupid and uncontrollable things. Irrational things which even though I know they're silly thoughts I can't get rid of them. So to know it could be down to this growth hormone deficiency is eye opening to me and the fact that depression and anxiety are also symptoms also ring true with me. My whole life I have probably almost all the symptoms of the deficieny. My life could be so different.
Theres no guarantee that once I start the treatment that it will change my life completely. Obviously i'm hoping for some improvement but I am not expecting miracles.
Its going to be a complete change, I mean I got all this news one day after we came back from our holiday which was a bit of a feeling of deflation but at the same time relief. Sometimes the feeling of not knowing whats wrong is worse than knowing something is wrong and what it is. Knowing you were right that something wasn't as it should be.
Another symptom that has plagued my life and is part of being growth hormone deficient is fatigue. Fatigue has plagued my life. When I come back from identity I usually go to sleep because I'm knackered. I'm always tired and I have little to no energy. Its probably one of the symptoms that really affects my life. Its actually how I got to this point. My gp, who is probably one the best doctors I've ever had. Like I cannot credit him enough, referred me to the local endocrinologist that specialised in chronic fatigue, which is what they thought I had. The doctor we saw then did blood tests which revealed a low growth hormone and then my gp referred us to my main hospital for the right testing to definitively say I'm growth hormone deficient and so we started on this journey.
So thats where we are at and I won't really know more until I have my next appointment in the next week. I'm kind of looking forward to it but at the same time not because then it will be official.
But yeah.
In other news there may finally be a orphan black uk convention and I cannot contain my excitement. Also by monday Tatiana should, if all is right in the world, be an emmy winner! I mean she should win because her acting is amazing. I don't have many inspirations but she is one them. Especially as I want to be an actress and I would love to be as good an actress as she is. The layers to her characters are just unrivalled. But imagine if the convention goes ahead and Tatiana goes. I cannot cope with that idea. I think I'd be a bumbling mess. I mean I'd be a bumbling mess whoever goes!
Thank you for reading,
hopefully the next video/blogpost shouldn't be a long wait for,
until next time
Sophie
Hi my name is Sophie, I'm 19. I have two cats Finn and Ashton.I love music, movies and I love going to concerts to see my favourite bands and singers. I'm also registered Visually Impaired, amongst other problems like my balance is not at its best. I also have hyrdrocephulas- I think thats spelt right! I am also an avid reader, ironic I know.
Saturday, 6 August 2016
Yalc 2016!!
Hi so I did it, I went to Yalc 2016! It went really well, I mean when we went into comic con it was a bit different but I really enjoyed Yalc 2016. I'm going to do a montage type video but I thought I would write a more in-depth post on here about it.
So Friday!
So we got there at about 11am and we, my mum george and I went to sign me up for some workshops. The Jeff Povey screenwriting workshop at 1pm and the Lisa Heathfield creative writing workshop. We also got our goodie bags and then we went to the first signings. I met Jenny Downham and Sarah Crossan. They were really lovely and I got a photo with each of them. I think I might of chatted too much but hey I do that when I'm nervous!
Then we went around the book and publisher stands. The amount of freebies we picked up was crazy, they were giving away posters, badges, postcards, samplers of books.
We then decided to venture down to the mania that is comic con. Now here is the first weird thing that happened. I was taking pictures of the floor and my mum said that there was a guy from one of my mum and George's favourite tv shows, the blacklist. So I tried to get a sneaky photo from afar, somehow they started waving their hands and my mum was telling me not to take anymore pictures but that soon transcended into him calling us over and taking a picture with us. It was really bizarre but my mum and george were happy, they said my dad would be jealous! It happened all to quickly that I didn't really comprehend how it had all happened.
We had a little look around the rest of comic con, my brother had a go at two virtual reality stands. They did offer me a go, I did say I could only see out of one eye and no 3d vision but they said I could still do it. But to be honest it didn't really interest me. I'd rather live in the real world!
So we headed back upstairs to Yalc so I could go to the two panels I signed up for. In the lifts they had people powering them, I don't know whether they had this last year because I do know last year there was a pallava over the lifts. The atmosphere when you leave Comic Con and enter YALC is very startling. It was a lot more relaxed and quite in YALC. A lot more laid-back. I much preferred YALC to Comic Con to be honest. And the people were just nicer if that makes sense, no offence.
So I headed to my first panel/workshop, Jeff Povey, whilst my mum and brother went back downstairs. Everyone else in the panel had notepads and pens or were getting pieces of paper to write notes. I just sat there like 'what do I do'. I just sat there listening whilst everyone else were heads down, writing notes.
Same happened with the next panel/workshop I went to, Lisa Heathfield's Creative Writing workshop. Again everyone was making notes. Although this time I did make notes, although I can't say my notes were very good. I have to take a bit of time to warm up with ideas. So when we had a bit where we had to write character answers to questions I really struggled because I wasnt in that mindset. Although the best thing happened at the end of the panel. It was a surreal moment. Now a week or two ago I tweeted Lisa Heathfield about how much I really enjoyed Seed. Fast forward 5 days ago I got a reply from Lisa. So imagine my surprise when I go to say thank you to Lisa for the panel and she says she recognises me from that very tweet! It was a moment of surrealness and a moment of surprise. So of course I ring my mum who is on her way back up to come with me to Lisa Heathfield's and Sara Barnards signings.
Now Lisa Heathfield has to be one of my personal highlights of the weekend, I had a really lovely chat with her, telling her that I too share a fascination with the idea of cults. The whole working of it and how one person can influence so many. Oh and we talked about how the hunger games movies didn't match up to the books. I mean finally someone who agrees with me, besides my family! I also joked about my multitude of career options, I mentioned being prime minister and when I looked in my book after the signing there was a lovely little message from Lisa saying how she thinks I would make a great prime minister! I also got a photo with her. She was just genuinely friendly and nice. Very talkative and just really nice.
I saw people over the weekend who promoted the fact they had a blog. And my mum was like why don't I do that. And I answered, I want authors to get to know me as me, rather than it look like I am after something. Be it a book or promotion. Not saying that is what people were aiming for but I want to talk to authors because I like the book, rather than it be for exposure. I hope that makes sense. Thats why, I didn't want to go to signings of authors that I haven't read at least one of their books. Because I'm a genuine fan of the author. I don't know whether that makes sense.
So I then went to the Sara Barnard signing, who was as well really lovely. Then we had a bit of a wait for the L.A Weatherly signing. I was going to go to the Samantha Shannon signing if we had time but we didn't and I wasnt too bothered because I haven't read any of her books and yeah! When I met them both they were lovely.
Also on the way out of YALC I brought a t-shirt which had the YALC logo on the front and had all the authors attending during the weekend on the back.
Oh and how could I forget, on the way out we passed the signing for Kristian Nairn, who played Hodor in game of thrones. I thought, screw it I'm going to ask for a photo. Whats the worst he can say ? No. But he was actually really lovely and the lady sat next to him took the photo and yeah. I met Hodor.
Then we headed to get our taxi and we headed back to the station to go home.
Sunday
Now Sunday, it was just my mum and I going and I had to get up at 6:30am. Yeah 6:30am. As the first thing I wanted to go to was, of course, the Catherine Doyle Creative Writing: from screen to page. Which was at 10am and we needed to get there earlier to sign us up for it. As on the Sunday there was a big cycling race across London. Meaning half the roads where closed, which is typical. It always seems to be when I'm going to meet Catherine Doyle theres always something in the way!
So we arrived at YALC around 9:20 so we signed up for the workshop then we had a look around the YALC floor. I had a look at the little brown book group, I believe that was the stand, I saw Carrie Fletcher's On The Other Side. Now I have recently started watching her youtube so when I saw her book I thought whilst its at a reduced price, it was £10 for a hardback and it was signed! Which is pretty good considering. Thats what I found, there was a waterstones stall that was selling full price books whereas if you brought books from the publishing stands you could get a paperback for £5 hardback for £10 and 3 paperbacks for £10. Which is almost like giving them away in book terms. We also looked at the new harry potter book. Harry Potter and the cursed child, my brother is really into harry potter and my mum didn't know whether he wanted that or some comics. They were selling it at waterstones for £20 which both my mum and I agreed was a bit much. There was a harry potter party in the afternoon to celebrate the books release at 12:01 that morning. So everyone was dressed up for it. So we headed to the workshop.
I found the workshop really interesting, my mum came with me and wrote notes for me. 2 whole pages. It was really fascinating to hear how scenes from certain movies influenced certain moments in the blood for blood saga. Like when she talked about a moment in the movie pochahontas influenced a scene in vendetta. The idea of self sacrifice and sacrificing yourself to save someone else. Putting them above yourself, that kind of heroism. When she was talking about it I knew exactly the scene she was talking about. I think this panel was really interesting because you could see her humour which is one of my favourite parts of the blood for blood saga. Also there was a bit of a sneak peak into Mafiosa, a red ruby ring, I'll try find a photo similar to it. Did I mention I need Mafiosa like yesterday!
Then was the signing. Guess what, she recognised me. Again it was a moment of surrealness and surprise. When people say they'll remember you, I never quite believe them because people are busy and sometimes people forget. So when she was like 'Sophie' I was like 'Thats me!'. Again along with Lisa Heathfield, my personal highlight. We talked about my blog and the book. I did mention I hope it doesn't end like romeo and juilet and well she stuck her hands in her ears to avoid spoiling things. I did say I'd cry a river. Now when we went to take a picture my phone decided to run out of storage and so I had to take it on my mums camera which wasnt the best but oh well. Catherine mentioned to keep up with the videos, she watched my vendetta review. She also read my blog reviews. I mean that means a lot to think these authors I look up to read this tiny thing is quite cool. All my efforts have paid off. Did I mention that Catherine Doyles P.A/Agent lady looked a lot like an american book tuber by the name of Kat. It was really weird!
Although something one person said in the panel really struck me. The phrase 'Deaf and Dumb'. It was used when someone was talking about their idea for a book. And I just wasn't comfortable with that. I don't think you should use that to describe someone. Because for one being disabled does not make you dumb, take Stephen Hawking. One of the cleverest minds on this planet and he is in a wheelchair and uses a speech machine. Would you label him 'Deaf and Dumb' No. You wouldn't. It is such a old dated word that doesn't really apply anymore, or ever. My advice to the person who said this would be talk to people with disabilities. Be it mental, learning, social or physical. Ask them whether they want to be called 'Deaf and Dumb' or any derogatory phrase. My niece is deaf, has cochlear implants and is very clever. Can lip read quite competently, can sign BSL amazingly well. Hardly uses her cochlear implants because she can just lip read and prefers that and signing. She is very vocal and is a happy little girl. She is only 5. I would not describe her as 'Deaf and Dumb'. If someone described me or anyone that I know with a disability as 'Deaf and Dumb'. Don't be astounded when I tell you where to go. I understand that phrase is commonly used by people with not a lot of understanding on disability and illness. Which is why we need more young adult novels about disability and illness. Highlighting the truth of it, not sugarcoating it but showing you life can be just as good as anyone else's life. People need more educating on it, with the facts. Maybe run things by actual disabled people. But then again they say if you can't find a book on what you want, that you should write it. Working on that one! Hope that doesn't offend anyone!
So then we went downstairs to try and find a comic for my brother. I sat and deleted a lot of my photos and when my mum gave up looking for the certain comic my brother wanted; we were left with a lot of time left until our taxi came so I said 'why don't we go back up and get another photo with Catherine Doyle since my storage issue is over since she is scheduled to be signing until 12:30' So we headed back up and we couldn't see her at her table but then my mum clocked her walking so, like complete stalkers we followed her to the chicken house stand and we got another photo. It may look a bit blurry but you can tell its us. I did say to her I promise i'm not a stalker I've just waited for this moment since missing out at Bath. I mean she did admit that she isn't in England all that often as she lives in ireland. Oh I also happened to mention I could go to signings in Ireland as I can get a dual passport as my grandparents are Irish. Yeah way to go to prove your not a stalker Sophie! Like I said she doesn't come to England all that much so I was going to make the most of this opportunity!
So we said goodbye to Catherine Doyle and we went to get our taxi to the station and we went home. We went to our local WHSmith to pick up Harry Potter and The Cursed Child for my brother. It was £10, half of the price it was at YALC. Yeah we were on a penny pinching mission as we didn't have too much money so we reserved our spending. Well I think I did pretty well. I managed to get a few books, a lot of freebies and my YALC t-shirt. I mean we also went to pret at the train station both days so. I had a tomato and cheese croissant, it tastes like pizza. We also went to the Slice Cafe at YALC which if anyone goes to it beware it is more expensive than most cafes but their croissants are quite nice. We also didn't go Saturday and we spoke to someone in the lift who said that around 70,000 people were there. Yeah I though Friday and Sunday was busy.
Also a theme I noticed at Comic Con was who people were dressed as. This year there was a clear theme of Harley Quinn from Suicide Squad and Ren from Star Wars.
I hope to go next year. I will probably only go Friday and Sunday again as that was enough for me. But maybe do something in London on the day in between. Maybe see a show, go shopping. Something like that. Definitely bring more money next year.
But yeah that was my experience of YALC 2016, if you want to know more, in terms of wheelchair access and just access in general of Comic Con then feel free to comment and I will get back to you.
I am working on a montage video with all the photos and then do a kind of haul of everything from YALC 2016 at the end. Should be up on Wednesday. As tomorrow is the big day, my big thing. I spoke to some of the authors at YALC about it and they were really lovely wishing me luck. I'll probably mention it in my YALC 2016 video because I'll film it either Monday or Tuesday.
I hope you enjoyed this blog post. I had a really amazing time at YALC 2016, met some amazing people who had really nice advice on writing. And were just really lovely in general.
If you went to YALC 2016/Comic Con 2016, how did you find it?
Thanks for reading,
Until next time
Sophie
So Friday!
So we got there at about 11am and we, my mum george and I went to sign me up for some workshops. The Jeff Povey screenwriting workshop at 1pm and the Lisa Heathfield creative writing workshop. We also got our goodie bags and then we went to the first signings. I met Jenny Downham and Sarah Crossan. They were really lovely and I got a photo with each of them. I think I might of chatted too much but hey I do that when I'm nervous!
 |
| They had the costumes from Suicide Squad on display. I want to see this movie but I've heard the reviews aren't the greatest! |
 |
| Sarah Crossan and I |
 |
| Jenny Downham and I |
 |
| My brother had a go at two VR things. To be honest I don't see the appeal! |
 |
| The book wall! |
Then we went around the book and publisher stands. The amount of freebies we picked up was crazy, they were giving away posters, badges, postcards, samplers of books.
 |
| Just some of the freebies I got on Friday! |
We had a little look around the rest of comic con, my brother had a go at two virtual reality stands. They did offer me a go, I did say I could only see out of one eye and no 3d vision but they said I could still do it. But to be honest it didn't really interest me. I'd rather live in the real world!
 |
| Total fluke but we met Amir Arisson from the blacklist! |
So I headed to my first panel/workshop, Jeff Povey, whilst my mum and brother went back downstairs. Everyone else in the panel had notepads and pens or were getting pieces of paper to write notes. I just sat there like 'what do I do'. I just sat there listening whilst everyone else were heads down, writing notes.
Same happened with the next panel/workshop I went to, Lisa Heathfield's Creative Writing workshop. Again everyone was making notes. Although this time I did make notes, although I can't say my notes were very good. I have to take a bit of time to warm up with ideas. So when we had a bit where we had to write character answers to questions I really struggled because I wasnt in that mindset. Although the best thing happened at the end of the panel. It was a surreal moment. Now a week or two ago I tweeted Lisa Heathfield about how much I really enjoyed Seed. Fast forward 5 days ago I got a reply from Lisa. So imagine my surprise when I go to say thank you to Lisa for the panel and she says she recognises me from that very tweet! It was a moment of surrealness and a moment of surprise. So of course I ring my mum who is on her way back up to come with me to Lisa Heathfield's and Sara Barnards signings.
 |
| Lisa Heathfield and I, who was so lovely and remembered me! |
I saw people over the weekend who promoted the fact they had a blog. And my mum was like why don't I do that. And I answered, I want authors to get to know me as me, rather than it look like I am after something. Be it a book or promotion. Not saying that is what people were aiming for but I want to talk to authors because I like the book, rather than it be for exposure. I hope that makes sense. Thats why, I didn't want to go to signings of authors that I haven't read at least one of their books. Because I'm a genuine fan of the author. I don't know whether that makes sense.
So I then went to the Sara Barnard signing, who was as well really lovely. Then we had a bit of a wait for the L.A Weatherly signing. I was going to go to the Samantha Shannon signing if we had time but we didn't and I wasnt too bothered because I haven't read any of her books and yeah! When I met them both they were lovely.
 |
| Sara Barnard and I! |
 |
| L.A Weatherly and I |
Also on the way out of YALC I brought a t-shirt which had the YALC logo on the front and had all the authors attending during the weekend on the back.
Oh and how could I forget, on the way out we passed the signing for Kristian Nairn, who played Hodor in game of thrones. I thought, screw it I'm going to ask for a photo. Whats the worst he can say ? No. But he was actually really lovely and the lady sat next to him took the photo and yeah. I met Hodor.
 |
| Yes this happened! |
Sunday
Now Sunday, it was just my mum and I going and I had to get up at 6:30am. Yeah 6:30am. As the first thing I wanted to go to was, of course, the Catherine Doyle Creative Writing: from screen to page. Which was at 10am and we needed to get there earlier to sign us up for it. As on the Sunday there was a big cycling race across London. Meaning half the roads where closed, which is typical. It always seems to be when I'm going to meet Catherine Doyle theres always something in the way!
So we arrived at YALC around 9:20 so we signed up for the workshop then we had a look around the YALC floor. I had a look at the little brown book group, I believe that was the stand, I saw Carrie Fletcher's On The Other Side. Now I have recently started watching her youtube so when I saw her book I thought whilst its at a reduced price, it was £10 for a hardback and it was signed! Which is pretty good considering. Thats what I found, there was a waterstones stall that was selling full price books whereas if you brought books from the publishing stands you could get a paperback for £5 hardback for £10 and 3 paperbacks for £10. Which is almost like giving them away in book terms. We also looked at the new harry potter book. Harry Potter and the cursed child, my brother is really into harry potter and my mum didn't know whether he wanted that or some comics. They were selling it at waterstones for £20 which both my mum and I agreed was a bit much. There was a harry potter party in the afternoon to celebrate the books release at 12:01 that morning. So everyone was dressed up for it. So we headed to the workshop.
I found the workshop really interesting, my mum came with me and wrote notes for me. 2 whole pages. It was really fascinating to hear how scenes from certain movies influenced certain moments in the blood for blood saga. Like when she talked about a moment in the movie pochahontas influenced a scene in vendetta. The idea of self sacrifice and sacrificing yourself to save someone else. Putting them above yourself, that kind of heroism. When she was talking about it I knew exactly the scene she was talking about. I think this panel was really interesting because you could see her humour which is one of my favourite parts of the blood for blood saga. Also there was a bit of a sneak peak into Mafiosa, a red ruby ring, I'll try find a photo similar to it. Did I mention I need Mafiosa like yesterday!
 |
| The ring was along the lines of this. |
Then was the signing. Guess what, she recognised me. Again it was a moment of surrealness and surprise. When people say they'll remember you, I never quite believe them because people are busy and sometimes people forget. So when she was like 'Sophie' I was like 'Thats me!'. Again along with Lisa Heathfield, my personal highlight. We talked about my blog and the book. I did mention I hope it doesn't end like romeo and juilet and well she stuck her hands in her ears to avoid spoiling things. I did say I'd cry a river. Now when we went to take a picture my phone decided to run out of storage and so I had to take it on my mums camera which wasnt the best but oh well. Catherine mentioned to keep up with the videos, she watched my vendetta review. She also read my blog reviews. I mean that means a lot to think these authors I look up to read this tiny thing is quite cool. All my efforts have paid off. Did I mention that Catherine Doyles P.A/Agent lady looked a lot like an american book tuber by the name of Kat. It was really weird!
 |
| Catherine Doyle and I #1 |
Although something one person said in the panel really struck me. The phrase 'Deaf and Dumb'. It was used when someone was talking about their idea for a book. And I just wasn't comfortable with that. I don't think you should use that to describe someone. Because for one being disabled does not make you dumb, take Stephen Hawking. One of the cleverest minds on this planet and he is in a wheelchair and uses a speech machine. Would you label him 'Deaf and Dumb' No. You wouldn't. It is such a old dated word that doesn't really apply anymore, or ever. My advice to the person who said this would be talk to people with disabilities. Be it mental, learning, social or physical. Ask them whether they want to be called 'Deaf and Dumb' or any derogatory phrase. My niece is deaf, has cochlear implants and is very clever. Can lip read quite competently, can sign BSL amazingly well. Hardly uses her cochlear implants because she can just lip read and prefers that and signing. She is very vocal and is a happy little girl. She is only 5. I would not describe her as 'Deaf and Dumb'. If someone described me or anyone that I know with a disability as 'Deaf and Dumb'. Don't be astounded when I tell you where to go. I understand that phrase is commonly used by people with not a lot of understanding on disability and illness. Which is why we need more young adult novels about disability and illness. Highlighting the truth of it, not sugarcoating it but showing you life can be just as good as anyone else's life. People need more educating on it, with the facts. Maybe run things by actual disabled people. But then again they say if you can't find a book on what you want, that you should write it. Working on that one! Hope that doesn't offend anyone!
So then we went downstairs to try and find a comic for my brother. I sat and deleted a lot of my photos and when my mum gave up looking for the certain comic my brother wanted; we were left with a lot of time left until our taxi came so I said 'why don't we go back up and get another photo with Catherine Doyle since my storage issue is over since she is scheduled to be signing until 12:30' So we headed back up and we couldn't see her at her table but then my mum clocked her walking so, like complete stalkers we followed her to the chicken house stand and we got another photo. It may look a bit blurry but you can tell its us. I did say to her I promise i'm not a stalker I've just waited for this moment since missing out at Bath. I mean she did admit that she isn't in England all that often as she lives in ireland. Oh I also happened to mention I could go to signings in Ireland as I can get a dual passport as my grandparents are Irish. Yeah way to go to prove your not a stalker Sophie! Like I said she doesn't come to England all that much so I was going to make the most of this opportunity!
 |
| Catherine Doyle and I #2 |
So we said goodbye to Catherine Doyle and we went to get our taxi to the station and we went home. We went to our local WHSmith to pick up Harry Potter and The Cursed Child for my brother. It was £10, half of the price it was at YALC. Yeah we were on a penny pinching mission as we didn't have too much money so we reserved our spending. Well I think I did pretty well. I managed to get a few books, a lot of freebies and my YALC t-shirt. I mean we also went to pret at the train station both days so. I had a tomato and cheese croissant, it tastes like pizza. We also went to the Slice Cafe at YALC which if anyone goes to it beware it is more expensive than most cafes but their croissants are quite nice. We also didn't go Saturday and we spoke to someone in the lift who said that around 70,000 people were there. Yeah I though Friday and Sunday was busy.
Also a theme I noticed at Comic Con was who people were dressed as. This year there was a clear theme of Harley Quinn from Suicide Squad and Ren from Star Wars.
I hope to go next year. I will probably only go Friday and Sunday again as that was enough for me. But maybe do something in London on the day in between. Maybe see a show, go shopping. Something like that. Definitely bring more money next year.
But yeah that was my experience of YALC 2016, if you want to know more, in terms of wheelchair access and just access in general of Comic Con then feel free to comment and I will get back to you.
I am working on a montage video with all the photos and then do a kind of haul of everything from YALC 2016 at the end. Should be up on Wednesday. As tomorrow is the big day, my big thing. I spoke to some of the authors at YALC about it and they were really lovely wishing me luck. I'll probably mention it in my YALC 2016 video because I'll film it either Monday or Tuesday.
I hope you enjoyed this blog post. I had a really amazing time at YALC 2016, met some amazing people who had really nice advice on writing. And were just really lovely in general.
If you went to YALC 2016/Comic Con 2016, how did you find it?
Thanks for reading,
Until next time
Sophie
Hi my name is Sophie, I'm 19. I have two cats Finn and Ashton.I love music, movies and I love going to concerts to see my favourite bands and singers. I'm also registered Visually Impaired, amongst other problems like my balance is not at its best. I also have hyrdrocephulas- I think thats spelt right! I am also an avid reader, ironic I know.
Wednesday, 20 July 2016
Glucagon Testing
Hi sorry for the radio silence on here. Its been pretty busy in my life at the minute so blog posts and videos have been put on hold. I'm trying to stay a float but its really hard. I have things coming up in july and august. Like I am volunteering for the Summer Reading challenge in my local library again. I enjoyed it so much last time that as soon as I saw it being advertised I signed myself up. The lovely thing this time round is that all the staff at my local library know me and know that I've been there done that. They're really nice. But I also have YALC which I, due to another thing straight after Yalc, I have decided that I am only going on Friday and Sunday. I'm also not staying in the apartment. This is why I shouldn't talk about my plans because they always change! So one of the things that I have had this month is a set of tests. As you may know I am currently being investigated for Growth Hormone Deficiency. So on Tuesday I went to my hospital for the tests. I had a test called a glucacon test. I thought I would do a blog post about it explaining what it is and any advice for people who may be having this test done.
So a glucagon test is to help diagnose a growth hormone deficiency and/or a cortisol deficiency. I had it done for both diagnoses. Cortisol and growth hormone deficiency. So I got to the hospital for 8:45. Yes I had to be there that early. I live about 45 minutes away from the hospital so we had to leave at 7:30 so that even if we hit traffic we should get there on time. Only just though!
So we went to the endocrine department. We met one of the nurses, I can't remember her name but she was really nice, made me feel really at ease. Because to be honest I was a little nervous.
I was then shown onto a day ward type unit. It was a room of three beds on one side and 3 chairs, you know the type you sit in to have a blood test with the funny arm rests. And it had an adjoining nurses station room. I was shown to my bed and then it began.
What happens when you have a glucagon test is you are injected with glucagon and then you have blood tests every half hour for 4 hours. So I wasnt allowed anything to eat or drink past midnight except for water, which was good as this was on the hottest day of the year.
So the nurses came to put a canula in my arm. Now I'm difficult with veins because 1. my left arm is not a viable option and 2. my veins are quite poor due to amount of needles being put into them over the years. So they put the needle in but somehow on the first try it slipped out. Squeamish alert if you don't do blood don't read the next line.
So blood started pouring out my arm, it was strange because i've seen things like that happen on tv and they make it sound like it really hurts but it doesn't.
To be honest if I wasnt looking at it I wouldn't have noticed. I mean it obviously wasnt a pleasant sight. I'm fine with blood tests but that was slightly uncomfortable! But second try and it was in. I've never had a canula in the crook of my elbow before so it was a new experience but it was quite uncomfortable so I had to have my mum help me a bit! So then they took the first set of bloods from the canula which made it so much easier than having to be poked by lots of needles. No thank you! I do have a bit of a bruise now though!
Then the nurse came and injected me in my stomach with the glucagon, she did warn that it might sting a bit. But a apart from a minor pinch I didn't really feel it until a bit later and that side of my stomach ached a little. Although she did say that might happen. I did feel quite faint and light and fuzzy headed after that but I do think that was down to my lack of sleep so I went to sleep and when I woke up I felt much better.
Now my mum and I had looked into the test so we knew that it would be a few hours just sitting around really so I prepared pretty well. I brought a stack of dvds, my books I got from wicked and my laptop with my headphones. Although once they started taking bloods every half hour the time flew. I kept talking about wicked and I managed to get one of the nurses to go see it. I watched a bit of orphan black. I watched the wizard of oz, I do love that movie.
When they took my blood they also tested my sugar levels. Although mine stayed the same the whole time I believe. So I don't know what that means. Then before we knew it the final set of bloods were taken and we were free to go. Our lovely nurse advised us to ring back in a couple weeks to get the results. We then went to burger king, yes my hospital has a burger king. Because I was advised to eat something and I read its good for it to be carbohydrates filled. I also got a starbucks drink, yes they have that as well! I got one of the new teavana drinks, the iced shaken blackberry mojito tea lemonade. To be honest it just tasted like really sweet blackcurrant. Me and my mum are more into Costa, their over ice peach lemonade is gorgeous, the only drink I order but still. I'm not really a tea or coffee drinker. My hospital also has a shop called the stock shop and they do lovely little trinkets and accessories for the home so I bought this really nice gold butterfly dish that I had my eye on the last time I went to hospital. It was on sale this time which made it even better. I also went in the body shop, yeah my hospital just has a lot of shops! I brought some of their shower gels. I love the body shops shower gels, I think I prefer them to lush to be honest. Lushs scents can be quite confusing and not clear what they are. They're a mixture of things. Whereas the Body Shops scents are quite clear in what they are if that makes sense. I got the pina colada shower gel, Mango shower gel, I didn't like the sprits version but the shower gel smells gorgeous and the Moringa shower gel. I have no idea what a Moringa is but it smelt nice. I also bought a tester size of the english rose hand cream.
I just happened to have gone to my local body shop the day before and bought a new tube of the installer primer and a small bottle of the honey mania shower gel. And a week ago I brought a new tube of the vitamin E moisturiser, I've gone through 2 previous tubs and I got a discount on it as they had changed the label so I got the biggest tub. Then we went to the car, we got a discount on the parking because we had an inpatient appointment. Then we went home.
I have a dexa scan as well this week which measures the minerals in the bones and checks for osteoporosis which is a side effect of growth hormone deficiency. So we are currently waiting for the results.
A few tips I would give for anyone who is going to undertake the test -
So a glucagon test is to help diagnose a growth hormone deficiency and/or a cortisol deficiency. I had it done for both diagnoses. Cortisol and growth hormone deficiency. So I got to the hospital for 8:45. Yes I had to be there that early. I live about 45 minutes away from the hospital so we had to leave at 7:30 so that even if we hit traffic we should get there on time. Only just though!
So we went to the endocrine department. We met one of the nurses, I can't remember her name but she was really nice, made me feel really at ease. Because to be honest I was a little nervous.
I was then shown onto a day ward type unit. It was a room of three beds on one side and 3 chairs, you know the type you sit in to have a blood test with the funny arm rests. And it had an adjoining nurses station room. I was shown to my bed and then it began.
What happens when you have a glucagon test is you are injected with glucagon and then you have blood tests every half hour for 4 hours. So I wasnt allowed anything to eat or drink past midnight except for water, which was good as this was on the hottest day of the year.
So the nurses came to put a canula in my arm. Now I'm difficult with veins because 1. my left arm is not a viable option and 2. my veins are quite poor due to amount of needles being put into them over the years. So they put the needle in but somehow on the first try it slipped out. Squeamish alert if you don't do blood don't read the next line.
To be honest if I wasnt looking at it I wouldn't have noticed. I mean it obviously wasnt a pleasant sight. I'm fine with blood tests but that was slightly uncomfortable! But second try and it was in. I've never had a canula in the crook of my elbow before so it was a new experience but it was quite uncomfortable so I had to have my mum help me a bit! So then they took the first set of bloods from the canula which made it so much easier than having to be poked by lots of needles. No thank you! I do have a bit of a bruise now though!
Then the nurse came and injected me in my stomach with the glucagon, she did warn that it might sting a bit. But a apart from a minor pinch I didn't really feel it until a bit later and that side of my stomach ached a little. Although she did say that might happen. I did feel quite faint and light and fuzzy headed after that but I do think that was down to my lack of sleep so I went to sleep and when I woke up I felt much better.
Now my mum and I had looked into the test so we knew that it would be a few hours just sitting around really so I prepared pretty well. I brought a stack of dvds, my books I got from wicked and my laptop with my headphones. Although once they started taking bloods every half hour the time flew. I kept talking about wicked and I managed to get one of the nurses to go see it. I watched a bit of orphan black. I watched the wizard of oz, I do love that movie.
When they took my blood they also tested my sugar levels. Although mine stayed the same the whole time I believe. So I don't know what that means. Then before we knew it the final set of bloods were taken and we were free to go. Our lovely nurse advised us to ring back in a couple weeks to get the results. We then went to burger king, yes my hospital has a burger king. Because I was advised to eat something and I read its good for it to be carbohydrates filled. I also got a starbucks drink, yes they have that as well! I got one of the new teavana drinks, the iced shaken blackberry mojito tea lemonade. To be honest it just tasted like really sweet blackcurrant. Me and my mum are more into Costa, their over ice peach lemonade is gorgeous, the only drink I order but still. I'm not really a tea or coffee drinker. My hospital also has a shop called the stock shop and they do lovely little trinkets and accessories for the home so I bought this really nice gold butterfly dish that I had my eye on the last time I went to hospital. It was on sale this time which made it even better. I also went in the body shop, yeah my hospital just has a lot of shops! I brought some of their shower gels. I love the body shops shower gels, I think I prefer them to lush to be honest. Lushs scents can be quite confusing and not clear what they are. They're a mixture of things. Whereas the Body Shops scents are quite clear in what they are if that makes sense. I got the pina colada shower gel, Mango shower gel, I didn't like the sprits version but the shower gel smells gorgeous and the Moringa shower gel. I have no idea what a Moringa is but it smelt nice. I also bought a tester size of the english rose hand cream.
I just happened to have gone to my local body shop the day before and bought a new tube of the installer primer and a small bottle of the honey mania shower gel. And a week ago I brought a new tube of the vitamin E moisturiser, I've gone through 2 previous tubs and I got a discount on it as they had changed the label so I got the biggest tub. Then we went to the car, we got a discount on the parking because we had an inpatient appointment. Then we went home.
I have a dexa scan as well this week which measures the minerals in the bones and checks for osteoporosis which is a side effect of growth hormone deficiency. So we are currently waiting for the results.
A few tips I would give for anyone who is going to undertake the test -
- Take a bottle of water with you - although you may not be allowed to eat or drink, you are allowed water
- Take entertainment - as much as once the blood tests start that they fly by its still 4 hours sitting around
- Research- I mean this is why I'm writing this so there is more information about this test for people undergoing it. Patient experiences so people know what is going to happen.
- Don't worry about the injection of glucagon, it really doesn't hurt all that much. I mean each person is different but its not a sharp scratch like a blood test.
- Oh side note when people describe a blood test/canula needle as a sharp scratch, that is a lie it is not the nicest feeling. it feels worse than a sharp scratch!
- Its easier to take blood with a canula than through multiple needles.
- Also don't confuse a glucagon test for a glucose test, although they are to get the same diagnosis. a glucose test is instead of glucagon its glucose. I also know that a glucose test doesn't have nice side effects.
I hope this has helped explain what a glucose test is and my experience of it. I think I went in thinking it would be worse than it actually was. It was probably one of the easier things I've had done. Apart from the canula in my arm it was quite relaxing. I mean I didn't even feel them taking the bloods really.
I hope you enjoyed this post.
Thanks for reading,
until next time
Sophie
Hi my name is Sophie, I'm 19. I have two cats Finn and Ashton.I love music, movies and I love going to concerts to see my favourite bands and singers. I'm also registered Visually Impaired, amongst other problems like my balance is not at its best. I also have hyrdrocephulas- I think thats spelt right! I am also an avid reader, ironic I know.
Thursday, 7 July 2016
Defying Gravity
Hi, so if any of you have seen my recent videos you might know I did something today that I have wanted to do for what feels like forever. I went to see Wicked! I have wanted to see this show since probably I got into Glee. Actually no before that I believe. I love the theatre, I love stage shows and musicals. So many times I've planned to go see it but plans always seem to fall through for different reasons. But not anymore. I have seen Wicked. And it was what I dreamed it would be and more. Obviously as you are not allowed to take pictures or videos of the performance I have only pictures of the set and the theatre of itself. Its been my biggest dream to see Wicked and one that I never thought I would ever get the chance to see this.
*some of the pictures I got*
The show itself, the set, the script, the songs and costumes. Everything was amazing. It added to the feel and atmosphere. The magical atmosphere. I don't want to make this a long post, a review of the show. I don't want to make it too spoilery either as not everybody has seen the show. But if you get a chance do go. Trust me.
I love how Wicked is this backstory on not only Glinda and Elpheba's friendship. But how things came to be in the Wizard of Oz. How Glinda became the good witch and how Elphaba became the Wicked Witch Of The West. But it wasn't just about that either. It had elements of animal cruelty, love and a truly villainous villain in Miss Morrible.
CAN WE JUST MENTION DEFYING GRAVITY!!! I was nearly crying, it was amazing and stunning and I just loved it. One of my family friends commented she remembered the last time she heard defying gravity sung by somebody, she cried. She was talking about me. Its cool that people still remember my singing, hopefully not so much my panic attack afterwards! But I had goosebumps it was so good, theres no way I could match that! A lot of the songs during the first half eluded to defying gravity and I was like its coming! Then when it arrived I wasn't quite ready. When popular was sung, which we also did in our show, I was alright singing along but when defying gravity and for good came up. I think I was so choked up that I was actually there watching it. And it was soo good!
*In no way do I condone the filming of this or anything, but I was struggling to find a video that showed you the spine tingling moment. Like how could I compare to that. It was amazing.
Fiyero and Elphaba, oh I do love them together. I think it was also because of the actors performance of the characters that also sold their love for each other. I think the song 'As long as your mine' has become one of my favourites. Oh Fiyero and Elphaba though. I can't get over them.
*Sorry since your not really allowed to film in the theatre, this was the only footage I could find. But I still love this song and they're so good, like the chemistry flowed.*
Incase you couldn't tell what my favourite part was, apart from Defying Gravity at the end of act 1. I love romance and true love conquering all. I rooted for these two! I love this show too much! The story of love and friendship against all odds.
Glinda, or as she used to be known Galinda, which was another little fact I learnt. She was funny, and witty. She was so good. Her morales and what she stood by, like her standing by Elphaba I loved. Her standing up to Morrible and revealing to the wizard about Elphaba,
I hope you liked my little talk about Wicked. If you can go see it, do. Because it is and probably will remain my favourite show. I'm already lining up going to see it again in a few months! Also If you can get the Grimmerie from the merchandise stand as it goes into detail about how Wicked came about. I also got the uk programe which I love. I'm just so happy I finally have seen the show that has always been on my wish list. That it was even better than my expectations. Heres the trailer incase you need anymore reason to go see this incredible show .
I have a new video, which I filmed before going to see wicked so see me so excited to see it!
Hope you enjoyed this post,
Until next time
Sophie
x
Scroll down and I get spoilery!
Spoiler alert-
That the Wizard is Elphaba's father.
And that Elphaba is not dead, and although it looks like Fiyero dies, they both are alive. Fiyero is turned into a scarecrow but Elphaba and Fiyero leave Oz together. And I guess live happily ever after!
*some of the pictures I got*
 |
| I was so panicked that the dragon was going to fly over the audience like they did in shrek. Thankfully not! It was so cool though! |
 |
| The dragon up close |
 |
| The map of the land of oz was beautiful. Just seeing that made me so excited. |
 |
| Yes I did get the program, it was quite reasonably priced at £7, I also got the Grimmerie and I bought the music book from my local book store! |
The show itself, the set, the script, the songs and costumes. Everything was amazing. It added to the feel and atmosphere. The magical atmosphere. I don't want to make this a long post, a review of the show. I don't want to make it too spoilery either as not everybody has seen the show. But if you get a chance do go. Trust me.
 |
| The costumes and makeup just add to to magic that is the show. |
 |
| I dont condone taking pictures in the theatre but look how amazing the stage is. The set is amazing and how they add a piece and it changes the entire dynamic of the stage. |
I love how Wicked is this backstory on not only Glinda and Elpheba's friendship. But how things came to be in the Wizard of Oz. How Glinda became the good witch and how Elphaba became the Wicked Witch Of The West. But it wasn't just about that either. It had elements of animal cruelty, love and a truly villainous villain in Miss Morrible.
CAN WE JUST MENTION DEFYING GRAVITY!!! I was nearly crying, it was amazing and stunning and I just loved it. One of my family friends commented she remembered the last time she heard defying gravity sung by somebody, she cried. She was talking about me. Its cool that people still remember my singing, hopefully not so much my panic attack afterwards! But I had goosebumps it was so good, theres no way I could match that! A lot of the songs during the first half eluded to defying gravity and I was like its coming! Then when it arrived I wasn't quite ready. When popular was sung, which we also did in our show, I was alright singing along but when defying gravity and for good came up. I think I was so choked up that I was actually there watching it. And it was soo good!
Fiyero and Elphaba, oh I do love them together. I think it was also because of the actors performance of the characters that also sold their love for each other. I think the song 'As long as your mine' has become one of my favourites. Oh Fiyero and Elphaba though. I can't get over them.
*Sorry since your not really allowed to film in the theatre, this was the only footage I could find. But I still love this song and they're so good, like the chemistry flowed.*
Incase you couldn't tell what my favourite part was, apart from Defying Gravity at the end of act 1. I love romance and true love conquering all. I rooted for these two! I love this show too much! The story of love and friendship against all odds.
Glinda, or as she used to be known Galinda, which was another little fact I learnt. She was funny, and witty. She was so good. Her morales and what she stood by, like her standing by Elphaba I loved. Her standing up to Morrible and revealing to the wizard about Elphaba,
I hope you liked my little talk about Wicked. If you can go see it, do. Because it is and probably will remain my favourite show. I'm already lining up going to see it again in a few months! Also If you can get the Grimmerie from the merchandise stand as it goes into detail about how Wicked came about. I also got the uk programe which I love. I'm just so happy I finally have seen the show that has always been on my wish list. That it was even better than my expectations. Heres the trailer incase you need anymore reason to go see this incredible show .
I have a new video, which I filmed before going to see wicked so see me so excited to see it!
Hope you enjoyed this post,
Until next time
Sophie
x
Scroll down and I get spoilery!
Spoiler alert-
That the Wizard is Elphaba's father.
And that Elphaba is not dead, and although it looks like Fiyero dies, they both are alive. Fiyero is turned into a scarecrow but Elphaba and Fiyero leave Oz together. And I guess live happily ever after!
Hi my name is Sophie, I'm 19. I have two cats Finn and Ashton.I love music, movies and I love going to concerts to see my favourite bands and singers. I'm also registered Visually Impaired, amongst other problems like my balance is not at its best. I also have hyrdrocephulas- I think thats spelt right! I am also an avid reader, ironic I know.
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