A few of my favourite things

Hey guys, so I'm not feeling up to much emotionally, but I thought I'd share with you some of my favourite books, films, bands and things! I've got really varied tastes, but I'll dabble with a bit of anything, as long as it's not scary! If you like any of the things I mention, tell me, and if you have anything to recommend, let me know! I'd love to hear from you.

“Sometimes, you read a book and it fills you with this weird evangelical zeal, and you become convinced that the shattered world will never be put back together unless and until all living humans read the book. And then there are book which you can't tell people about, books so special and rare and yours that advertising your affection feels like a betrayal.” -The fault in our stars, John Green

'The fault in our stars' is my all time favourite book, it's such a beautiful portrayal of illness; chronic and terminal, and also romance. Green touches on some raw nerves with such delicacy and charm, that you have to read on. This story warms your heart on one page, then rips it out on the next, the emotions are so tender and true. Yet there's a spark of humour and lightness to it- it's not a heavy read. I've been listening to it on audio book almost every few days, and I think it's simply the best.

Another book that I've found great to read recently had been 'The woman who went to bed for a year' by Sue Townsend. This is a brilliant novel that hilariously de-constructs modern family life. With the characters developed sensitively and many common family issues tackles with a lot of tact and grace, I really enjoyed reading this book whilst on holiday in New Zealand- I bought it at the airport. When Eva's twins head off to university, she climbs into bed and stays there for a year. It's such a honest tale, and I really enjoyed reading it as it was funny too, making me laugh and cry on the same page.

I've also been introduced to some new music of late; my friend Patrick sent me a link to a song by a band named 'Templeton Pek' and I really love the sound they make, it's classic English rock but somehow it feels fresh and new. I think they're really talented and although they are reasonably well known in Europe, the British 'pop culture' means that they're overlooked in our country. Such a great up-and-coming band shouldn't be ignored! (If anyone wants to buy me their new album, 'signs' I will bake you cookies!)

Recommended by the Author of 'The fault in our stars' John Green, I listened to some of Ruby Day's music. This London teenager is so amazingly talented, I cannot stop listening to her. This song in particular, 'doubts' really spoke to me as the lyrics say so much of what I feel. I really hope she makes it as a top singer/songwriter.

'I guess it's just one of those nights, where I can't get out of my head. I guess I'll be all right, I should probably just go to bed.

But the future scares me I'm not gunna lie, 'cause although I'm bright I'm not smart enough to try- for fear of failing when I've really done my best.

And I've come dangerously close, to giving this all up. I stare into my tea like the answer's hidden in a flipping cup. So put that record on again, I'll confess this to you like we're old friends, but we're not.'

Another song that really hit home was one I found as backing track on a parkour video (yes I watch people jumping off buildings and stuff for fun- don't judge me) and it's 'Modern Leper' by frightened rabbits. The lyrics again and the style of the music was so powerful. These words remind me of how I felt with Jacob sometimes.

'Well, is that you in front of me?

Coming back for even more of exactly the same.

You must be a masochist to love a modern leper on his last leg.

Well, I am ill, but I'm not dead

And I don't know which of those I prefer,

because that limb which I have lost-

well, it was the only thing holding me up.'

On a more positive note, I have some of my all time favourite films to share with you. The first of which being 'The Aristocats.' I just find it so cute, I mean who doesn't love Disney?! Thomas O'Malley is so cool and Duchess is so prim and proper, and with my love of all things feline- who can blame me for loving this?

I really like watching kids films, especially when I'm poorly. Jacob introduced me to Studio Ghibli, a Japanese anime film company, and when I watched 'My neighbour Totoro,' I fell in love with the characters and the animation style. I like other films by them too, such as 'Howl's moving castle,' and 'The cat returns.'

Onto TV shows now and I have to admit I am a sucker for medical dramas! I have no idea why though seeing as I really really hate hospitals- they're terrifying. I first got into the BBC's Casualty when I was fifteen and then found out about 'Holby City' which is a mid-week drama set in the same hospital. My favourite character; Tara Lowe- a first year doctor with a brain tumour and a wit as sharp as any razor, unfortunately died during an operation to reduce the size of the tumour, and I actually cried- sad I know! But when you're so isolated with a chronic illness, book and television characters become your friends- they are a part of your life that doesn't change, and who don't abandon you because of your illness or disability. 

So now I've bored you to death with some of the stuff I like, I have a couple of announcements to make. I will not have internet at my new place, which although disappointing might give me some time to work on some stuff that I've been meaning to do for ages. However- have no fear! I will still be blogging once a week, on whatever regular day I can manage to get over to my parents old house and use the internet! (I think it'll probably be Friday) I'm moving today so a little apprehensive, but hopefully it'll all go well and I'll update you soon!

Much loves, Peace out!
Alice xxxx
© Alice Daley 2013

Heartbreak, homes, and hospitals.

So I appreciate I've somewhat abandoned the blog for the past week or so, sorry. I've had a really awful time, involving being admitted to hospital, having a serious panic attack in the hospital on the day of my anniversary with Jacob, Jacob breaking up via Facebook with me two days later on the grounds that he can no longer handle my illness, me deciding to move back in with my parents if they can rent somewhere with downstairs bedroom/bathroom, and generally huge changes.

As you'd expect, these events have caused a huge M.E. relapse and so I'll most likely not be posting very often on here because doing anything more than about 10 minutes wears me out. Needless to say, I'm not in the best of moods, or the best of health. My world has been shattered, turned upside down, and the broken remains thrown into the sea. 

But I will come through this, I have survived much worse things, and I know I'm strong enough to cope. Well, with the support of my wonderful friends and lovely family, I will get through this. I'm sorry if I don't talk to you, or open up to you, it's nothing personal, there's just a few people I want to talk to and lots of people who I'd rather not. It's not your fault, I just can't really handle much right now.

Expect my blog posts to be reasonably awful for some time, I do apologise but the blog is only as good as the blogger and right now your blogger is going through the mill somewhat. I love you guys loads, stay strong. Alice xxxx
© Alice Daley 2013

It's M.E. awareness day!

*ANNOUNCEMENT*

30 posts, 10 months, and 5000 views!

I'm so unbelievably pleased as today is M.E. awareness day,
and I've hit 5000 views, which was my goal, my deadline being today!

So thank you all for your ongoing support and readership, it really makes me so pleased, and lets me know that the energy I spend on this blog is worth it.

*ANNOUNCEMENT*

So let's get on with the M.E. awareness day post shall we?
Firstly, I've made a video, specifically to raise awareness of severe M.E. the 25% group. The sound quality isn't great as my speech isn't always very good but it's not very complex or hard to watch so I'd really appreciate it if you all watched it:

And in true M.E. fashion, I am unable to finish what was going to be a spectacular post as I've taken a huge turn for the worst. Great. Sorry.

Well folks, I love you all lots,
Happy M.E. awareness day,
Alice
xxxx

© Alice Daley 2013

Alice's top 10 things that can make surviving severe M.E. a little bit easier!

Hi guys, this is a fairly picture heavy post, but I wanted to share with you some of the aids I find helpful living with severe M.E. Not all of these will be relevant or helpful to all of you, but I'm hoping there will be something here for all of you.

A whiteboard can be really useful if you need to communicate with someone but do not have the energy to speak, for example carers or family members. Of course, you have to be able to write and for some this is harder, but if you find speaking an issue then a whiteboard is great. Plus they can be fun for simple games such as tic tac toe and hangman.

Many people with M.E. suffer with insufficient temperature regulation, I certainly do; having a high fever at night or feeling too cold but still sweaty. I find if you can cope with the noise from a fan, it can be really helpful to keep you cool, and to keep the air moving around the room. Wearing thin layers of clothing can help too, as you can easily add or subtract layers to keep yourself comfortable.

The only problem I have with the 'grabby stick' or 'easy reacher' is that I often don't have the grip in my hands to operate it. However, if you still have fairly good hands but can't sit up to reach something, then it's really useful.

If you're bed-bound like me, a commode is essential. Some of you may need to use the bedpan, but for those of you who can transfer with help and sit up for a few minutes the commode will be very useful. One with wheels can be useful too especially if you don't have a wheelchair to use indoors. You can ask you occupational therapist and they should provide one for you.

This is something else that the occupational therapist can provide for you if you are predominantly bed bound, and they also do seat cushions if you're in a chair for a lot of the day. They stop you getting sores on your pressure areas, though it's still important to move every so often if you're able, or ask your carers to roll you over.

So I usually use my hydrant (like a bottle with a long tube and a valve on which syphons liquid through thus illiminating the need to suck) but if you can't lift a cup and you're looking for a cheaper alternative, I recommend using straws. However, if you struggle to suck, as I sometimes do, you may ask a carer to spoon liquid into your mouth, though this takes some getting used to.

My eye-mask and sunglasses are two of my best friends! For those of you who are light sensitive, and those of you with insomnia, these are indispensable!

Or ear plugs if you can't handle the pressure of something on your head, or you're not as sensitive. I tend to use mine if there's any building work or lawnmowers going on, or if I'm having a bad sensitivity day.

Hot water bottles are really good for easing pain, particularly stomach cramps and back pain. However they can be dangerous, as they are filled with hot water, so wheat bags you microwave are sometimes more useful, though I cannot handle the smell of these.

Good family and friends make all the difference, as well as supportive carers, and decent medical health professionals. Many of us with M.E. can lose relationships through this illness; lack of communication, disbelief, frustration and such, but keep hold of the friends that stick by you through everything, they are treasures.

I hope this has helped a little, and given you some ideas you may not have had in the past. Tomorrow is M.E. awareness day and I'll be writing a special post as well as uploading a video to my YouTube account: Thoughts From Alice which I'll include in tomorrow's post.

Love you,
Alice xxxx

© Alice Daley 2013

Launching 'Thoughts from Alice'

Hey there guys, just a quick update to announce the launch of my creative blog 'Thoughts from Alice' This is a blog where I can share my more creative work with you; my poetry and writing. I'm not the best poet in the world or a world-acclaimed writer, but seeing as many of you enjoyed the poem 'At the edge of the water.' I've set up a special blog just for my writing. I really hope you enjoy reading my work. I've posted a couple of poems already!
Love Alice xxxx
© Alice Daley 2013

Roller-Coaster

Hey guys, So I started writing a blog post the other day and it read as follows:

'So recently I've been feeling angry and apathetic; emotionally burned out, and starting to loathe the human race as a whole. Don't get me wrong guys- individually I love you, but collectively? Not so much. Humanity has become so stupid over recent years, and without insinuating some huge superiority complex, I think my boyfriend and I are among the few remaining people of our generation who aren't actually idiots. I'm going to sound terribly arrogant in this post, and I apologise; it isn't my intention- I'm as bad as the next person in reality, though sometimes I feel like a completely different species.'

I realised how resentful and bitter I sounded once I'd read it back, and truth be told, my emotions have been all over the shop recently. I have a lovely evening last night with my boyfriend and it's left me in a great mood, but I'm so changeable. One minute I'll be happy and laughing, the next, in a pit of despair, usually triggered by a spike in my symptoms. I've also been feeling really poorly the last few days. I think I've somewhat overdone it of late but I'm struggling to pace properly. I'm still in the boom and bust routine and finding it really hard to break.

I found this video today, and it broke my heart. This girl speaks from the heart, but from the heart of any person with chronic illness, and especially my own at the moment:

'Being continually ill and continually sick and fighting every day, because your body is in so much physical pain... I'm exhausted, and I've put on a happy face for most of the time that I've been sick, because I think that if you decide that you can be strong and decide that you can be positive, then you can make it through...

You have this hope for so long, that things are gunna get better, that you're gunna wake up in the morning and there's gunna be some cure to make you feel better and to make all the physical pain and all the emotional pain go away, and there's not. There's absolutely nothing to do to cure this. How unfair is that? 

Not only is that just so unfair, but it sucks! Because I don't wanna be sick. I don't wanna wake up in the morning and know that it's gunna be a hard day. Again... I've been unable to be so strong and just be positive. And so instead of letting people in and letting them be there for me and help me I just continually push them away because now I'm just angry. I was supposed to be healthy and I was supposed to get better and I was supposed to be fine. And I'm not.

And it's so tremendously hard, to be so sick. I don't know how to explain to somebody who isn't sick, knowing that you're gunna be sick forever is the worst feeling ever. And knowing that there's really not a lot that can be done for you is the worst thing ever. And then to feel like you're hurting others around you because you're going through so much, so much that you can barely even explain. How do you explain to somebody that you hate your body? You hate what it's done to your life and you just wanna be healthy. How do you explain that to somebody? How do you make somebody understand how difficult this is to go through? You can't.

And it's so hard, to be sick forever. I don't know what's been with me lately but I've been angry instead of positive or a fighter, I've just been angry. And I think that's probably fair, cause at some point I deserve to be angry but it's so painful. Emotionally, physically and it just is too much to handle sometimes. I wish that I could tell all of the people that I've probably hurt that I'm so sorry. And to all of the people that have been there for me that I appreciate your help so much, because if it weren't for people like you in my life then I wouldn't still be okay. So thank you so much for everything you've done for me. Thank you for being supportive, probably when you didn't know what to say- I wouldn't know what to say to me.

I'm totally gunna make it through this, and I'm gunna make it over this hump, and I'm gunna get to a healthier place and a better place. I'm gunna get to a point where this is all just a part of my life that I went through. Maybe not totally, but I'm gunna try. I'm gunna really try and get there. So if those of you who know me personally, can you just stick it out that'd be really great. Your love means more to me than I can even explain, your friendship, and the care and happiness that you bring to me helps give me hope, because some days I don't know that I'm gunna make it through.

So lesson of the day, if you know someone who's sick, give them a hug and tell them they're beautiful. Because everything they're going through is probably a lot more than you know. Show them you care, and show them how special they are to you, because most of the time it's what helps keep me going.'

I asked in my questionnaire about what having M.E. felt like and this is my favourite response:

'A roller-coaster ride with slow motion parts. Boredom and sadness interspersed with high speed drama. Most of the time I have no speed control, or control of anything at all, including my brain, my pain, my plans.'

This life, this illness, it's a roller-coaster ride. And you know what? I wanna get off so badly right now. But I've gotta hold on, I've gotta keep fighting, even if the last little bit of fight has all gone out of me. And so do you. Because people love you, and people need you. I know you can do it.

If you need to talk to anyone about how you're feeling, don't hesitate to email me: daleymaid@gmail.com.

Peace,
Alice <3 xxxx

© Alice Daley 2013

I need your help!

Hi guys!

So M.E. awareness week is coming up and I want to make a video or at least a decent blog post for May 12th (M.E. awareness day) and I'd like your help making it please!I'm planning on filling the video/post with quotes from people with M.E. because I think a bunch of facts doesn't always do very much. I'm going to be focussing on the 25% group as that's where I fall but if you're less severely affected I'd love to hear from you too.

So parents, relatives, carers, sufferers and anyone else, I'd like you to answer me some questions:
1. What does M.E. feel like?
Not just a list of symptoms, but an honest description. 
2. How does M.E. affect your life?
This could be giving up education or a career perhaps.
3. How does M.E. affect your relationships?
Do you socialise, have you lost family or friends?
4. What is the worst part of having M.E. for you?
Maybe a particular symptom or a big lifestyle change you've had to make.
5. How can someone else help you?
What things can people do to make this horrific illness a little easier for you?

There are no right or wrong answers and I think 5 questions is plenty for you to be going on with and you can write as much or as little as you want, but I'd really appreciate responses to this!
(if you don't want to comment on this post feel free to email me at daleymaid@gmail.com)

Thank you in advance, 
Alice
xxxx

© Alice Daley 2013

The Zoe Challenge

Hello friends, I hope you are all as well as possible,

Well last weekend I went to a ball with my friend Dean, a charity ball to be exact, to launch something I'm really excited about; the Zoe Challenge. I've not posted about it until now as I was utterly exhausted from the outing, and have been really poorly since the weekend. 

But what is the Zoe Challenge  I hear you ask?
In about a week, four men including Emmerdale's Tom Lister (I have no idea about soaps but apparently he played Carl King who got his head bashed in with a brick...) are cycling from Riga, Latvia to Southampton, UK in just 20 days. Covering approximately 100 miles every day, together they will push their bodies to the limit, crossing through six countries and cycling in challenging and gruelling conditions. They are doing this cycle ride because of Zoe. Zoe was trafficked from Latvia into the UK for the purposes of sexual exploitation. In our country she was repeatedly raped for profit. After months of investigation, Hope for Justice found and rescued Zoe. Now she’s living in freedom.

From the Hope for Justice website:

Zoe was asked to come to the UK from Eastern Europe by a friend who said she could arrange a job for her in a hotel. Zoe was excited about the opportunity to come to the UK and on her arrival she was picked up by a man and a woman and taken to a hotel. Then she was handed some underwear and told to put it on. Zoe was confused and said she hadn't come to the UK for this kind of job but she was threatened, violently assaulted and told she was in debt to the couple. She was raped on multiple occasions and forced to work as a prostitute.

Zoe’s hopes quickly turned to horror as she realised that she had been trafficked. 

Moved from town to town in the UK and then sold to another trafficker, Zoe was too terrified to escape. The traffickers had told her that if she tried to leave they would come after her family. At one point a police officer even spoke to her but she was too scared to tell him what was really going on. The traffickers had told her that they ‘owned the police’. Zoe said that no good thing had happened to her in the UK.

Hope for Justice found Zoe and rescued her from this devastating situation.

She was immediately placed into after-care to allow her to recover and now she’s rebuilding her life. Good things are now happening to Zoe in the UK. She now has hope and we, here at Hope for Justice, have hope for all the girls not yet found.

Freedom is priceless- I know what it feels like to be trapped. Not to the same extent as the victims of this horrific crime, but the terror was much the same. When I was rescued from my trap, the feeling of freedom I experienced was phenomenal. It is the most indescribable feeling in the world, I felt light, I felt like singing and dancing, and we can bring that same freedom into the lives of men and women as old as 59 and children as young as just three months old, who have been sold and abused, for profit.

You might be thinking 'hang about, wasn't the slave trade abolished in 1807 by Wilberforce?' or even 'well that stuff goes on in poor countries but what's it got to do with me?' You are very wrong. Human trafficking is one of the fastest growing crimes in the UK. If you're one of my local readers, you'll be shocked to know that there have been cases of exploitation in Wrexham, Chester and even Shrewsbury. This is not a distant crime in a third world country, this is on our doorsteps! I could throw more statistics at you, but instead I want you to watch this:

Zoe's Story from Hopeforjustice on Vimeo.

You can find out more about Hope for Justice and the Zoe Challenge on their websites:
http://hopeforjustice.org.uk/
http://zoechallenge.com/

You can donate by visiting The Zoe Challenge Just Giving Page or you can text ZOEC55£10 to 70070 to give £10 or text ZOEC55£5 to 70070 to give £5.

Thank you for supporting this really amazing cause. You are helping to rescue princesses.
With so much love,
Alice xxxx
© Alice Daley 2013

The edge of the water

I wrote this poem one beautiful summers evening whilst sitting on a rickety old jetty on lake Taupo, New Zealand.

The edge of the water is calm,

The edge of the water is tranquil,

The edge of the water is my space,

To look, to listen, to think.

The water birds gently glide past,

The boats cruise by with ease,

Making waves in the cool water;

Ripples on the glass.

I sit at the edge in the quiet,

I lie at the edge in the still,

I rest at the edge in the silence,

In the warm, summer evening.

I ponder the meaning of life,

I think a billion thoughts,

I write out a thousand words;

These things in my head.

Down here I forget my toils,

Down here I forget my pains,

Down here I forget my struggles,

And I breathe deep.

The edge of the water is calm,

The edge of the water is tranquil,

The edge of the water is my space,

To look, to listen, to think.

© Alice Daley 2013