I can't do it

You can't do it? Let me tell you- you can. I believe in you, I truly do. You my friend, are a beautiful and wonderful human being, and I know you can do it. Whatever it is; telling your parents you're gay, climbing Snowdon, sitting yourself up in bed, or even simply carrying on to the next moment of your day. I know it seems impossible, like you're a the bottom of this scary dark pit where nobody understands what you're going through. Take my hand, go on, take it. Trust me, because I believe you have so much potential. You could be a doctor, a solider, an astronaut, a mother, father, bricklayer, friend, vegetarian, advocate, whatever you want to be. The only thing holding you back is yourself. You've had a rough start? So did a lot of people. You have low self esteem? Most of the teenage population does these days!

I'm not telling you your problems are invalid, and I know there are so many of you out there who are bruised and broken and hurting. Those of you who feel you have nothing left, nothing to give, no redeeming factor. Some of you will be feeling suicidal. Some of you will, like me, want to curl up into a ball and sleep until the pain goes away. Depression, anxiety, self harm, eating disorders; they've taken our generation by storm, and that's not okay. I love you guys, I love our world and I love young people. We are the future doctors, politicians, teachers and parents. We will be running this country before we know it. And I refuse to believe this is a lost generation, despite the media's constant slander. Crime, drugs, gangs, teen pregnancy, alcoholism and anti-social behaviour; these are just a few of the paths that some teens have no choice but to walk down. 

Do you know why they have no choice? Because we've already condemned them. That aggressive looking lad walking around the estate in a tracksuit, holding a can of cheap larger, unemployed and miserable; you've judged him already. Sentenced him to a life of menial work, if any, living off benefits with his pregnant teen girlfriend in a shoddy council flat. Surely we want more for these kids. And that's all they are; children. The minute anyone turns 18, they are forgotten by the system, and cast out to fend for themselves. They have no future, no hope.

You might be a middle class girl with her brand new iPhone, a loving mum and a doting daddy, but let me tell you, you're not free from this. Have you ever felt hollow and aching and empty inside? Anxious? Have you dieted to look thinner, or spent hours before school meticulously applying make up so that someone will notice you? Have you been hurt by the boy of your dreams, or maybe your best friend has stabbed you in the back yet again? Are you happy? Truly happy. Do you have hope for your future?

And maybe, just maybe, you think your life can't get any better. Everything has gone to plan, you're happy and content and the future looks bright for you. If that's you, then I am very happy for you, but the sad reality for many young people throughout our nation, they feel lost, alone, unwanted, judged and stereotyped. Society has painted all young people, especially those who've had a less than wonderful start to life, with the same brush of judgement and cynicism. We are the children of a conservative generation, a generation that opposes change, rejects redesign and protests against progress, (this is starting to sound awfully Lib-Dem) and it is up to us to take a stand for our future.

I'm here to tell you that there is hope. Hope lives within each and every one of us, and we can choose to raise and kindle that flame of hope, or try to stamp it out with bitter thoughts and angry deeds. Hope is the refusal to accept a situation as it is, and I know that there are many out there working to bring hope and love and joy into the lives of young people. In August last year I attended a Christian festival called 'Soul Survivor.' Whilst I was there, I heard a man named Patrick Regan speak on the subject of hope. It inspired me and really challenged the way I had been thinking for the past few years. 

Patrick is the CEO of a Christian charity called XLP (short for the excel project.) XLP works with young people and their families in schools and estates across central London, running after-school and lunchtime clubs, youth groups and taking their two youth activity buses around the different estates. Today, on a day-to-day basis, XLP has projects dealing with a wide variety of issues including drugs awareness, anger management and violence, poverty and fairtrade, prejudice and racism, sex and relationships, and image and identity. These guys provide hope to those kids who have never been given a chance to change their destiny. They do many other things including an arts showcase where young people are given the freedom to express themselves and the issues that concern them. Each year XLP takes on and trains up gap-year and degree students to work with these teenagers, sharing with them the hope they have found through faith. 

In October 2012, I journeyed down to London to the XLP open day. I was still able to walk a little but mostly I had to use my wheelchair. I even had to negotiate the tube in my chair- scary stuff! But I made it to the headquarters, eventually, and met Patrick and the team, heard them talk about the charity some more, about the gap-year course and everything else. I was so excited, I couldn't wait to finish my A-levels and apply for the gap year; I got on really well with the other members of staff and felt really peaceful and comfortable in London. I knew I could bring hope to the lives of these youngsters, and I felt a real passion burning in me for the estates of London.

However, as my illness have gotten worse, I've prayed and thought a lot about my future, my own hope. M.E. can last months, or it can last years. The severity can fluctuate massively, and I never really know what's around the corner. I've been bed-bound for almost two months now, and I feel like I'm losing my grip on my future. My passion is young people, seeing lives and hearts change, and I know that at the moment, I cannot do this as fully as I'd like to. I keep praying, and I give some of my income towards the charities work. I wish I could do more and I still believe and hope that one day I will achieve my dreams through XLP.

So, if you're still here and listening, well done! I believe in you, because I know that if you can believe in yourself, you can take on anything this world throws at you. It might seem impossible at times, and I know all too well the temptation to give up, but I promise you this; if you keep at it, you'll get there. So spread your wings, take a chance, do that thing you keep meaning to do, but haven't yet because you're not sure how it'll turn out. Laugh often, love deeply, cry when you need to, and have hope, because life is what you make of it, and I know you're a diamond in the rough.

Love, Alice.© Alice Daley 2013

1000 views: A pretty big deal for M.E.

Hello Friends,

I'm pleased to announce that I now have 1000 views on this blog! I am really proud of myself, and I want to thank you all for your ongoing support and promotion. I couldn't have got here without my Jacob; my carer and my lover. He's got his own blog, and very funny it is too! He rants on all things modern culture, with some more personal posts also, and if you'd like some laughs with a side order of insight, here's the place to go:

http://oldmanwolferants.wordpress.com/

I also couldn't have done this without my fellow poorly people, all those at AYME, and on the many ME support groups I am a member of. You help me out to no end, you're always there and have really helped me by reading and sharing my blog. In return, I will now share a few of theirs:

My friend Chlay: http://chlay.blogspot.co.uk/
My friend Imraan: http://heightenedsenses.co.uk/
My friend Donna: http://donnasmeview.blogspot.co.uk/
My friend Debbi: http://honeybeelilico.wordpress.com/

Recently I've played about with the format of the posts, sometimes having non-alliterative titles, or not adding a daily encouragement at the end of all my posts. I don't want to be limited by a certain layout, I just want to write. 

I'd like to do a special post for my 1000 views celebration, and I think that'll take the form of a video, so watch this space!

With love, Alice

© Alice Daley 2013

Disability is like having a Gorilla in your house

Acquiring a disability is a bit like getting home to find there's a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to "what you've got 'ere, mate, is a gorilla, and there ain't really a lot what we can do about them, see..." before sending you back home to the gorilla's waiting arms.

The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed. Your friends will get cheesed off because when you see them - which isn't often, because they don't want to come to your house for fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing.

There are three major approaches to the gorilla in your house.

One is to ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that's on top of you, it will have an effect on you.

Another is to try and force the gorilla out, wrestling constantly with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle. However, every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim victory, and tell the media that it's a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers just aren't doing it right due to sloppy thinking or lack of commitment  The 99 other gorilla-wrestlers won't have the time or energy to argue.

I have known people spend the best years of their life and tens of thousands of pounds trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won't get their pre-gorilla lives back. They'll be older, skint, exhausted, and constantly afraid that the gorilla may well come back.

The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss about ways to accommodate  or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.

People get really upset about this and throw around accusations of "giving up" and "not even trying". They even suggest that you enjoy having a gorilla around because of the attention it gets you (while ignoring the massive pile of steaming gorilla-turds in your bedroom every morning and night, not to mention your weekly bill for bananas). The best way to deal with these people is to smile and remind yourself that one day, they too will have a gorilla in their house.© Alice Daley 2013

Conversation and Confusion

Well I've not written anything useful in a while, and with my boyfriend beating me on stats for his blog, (which is brilliant by the way, check it out here for some real laughs!) I thought it was about time to write up something new, and slightly more M.E. related. This is the subject of social interaction, memory, brain fog, memory, and conversation, sparked my my friend Donna's first blog post, which you can read here.

When someone comes to see me, they see a pale, tired looking, but reasonably alert looking girl, propped up in bed with an armada of pillows and a smile on her face. That is, if their visit was planned and planned in advance, so that I've been given sufficient time to rest before their arrival, in order to look vaguely 'with it' and human. What they don't see is the immense effort I am putting in to every aspect of their visit, concentrating intently on their conversation, so that I can keep up, and 'mhmm' and 'yes' in the appropriate places. The last thing you want is to be chatting to someone who's just told you their rabbit was savaged by a dog, and reply with a smile and a 'good, good,' because you weren't following the conversation, because your brain is actually made of candy-floss. 

Another thing that is really hard about social interaction with M.E, is hiding your pain, so that people don't fuss over you, which for the record, nine times out of ten, makes you feel a whole lot worse. Pain is a tricky thing to handle, and when you're already on the strongest pain killers the doctor can prescribe you, you feel like a bit of a pansy wincing at every muscle spasm and bone ache you're pretty used to already. I tend to keep one of my hands under the covers, and squeeze the life out of one of my teddies if it hurts (poor Ted,) but there are many different coping strategies for controlling your pain when it is socially unacceptable to scream, although screaming itself is probably too much energy anyway. Breathing is a good one, taking long, deep breaths through your pain. Another thing that might help, is to tense up the part that hurts as you breathe in, and then relax it as you breathe out. One thing I will say, is that if you're with people you trust, don't be afraid to let them know you're in pain; it's all right, you don't always have to be the strong, 'together' one. After all, it's you with the severe, crippling illness. 


Aside from the embarrassment, however, brain fog can provide some much needed amusement. The silly things we do when we're not quite on the ball can often lighten the mood, especially if visitors are present. For example, I've once brushed my nose with a toothbrush, tried to flush my commode (though that was not in the presence of visitors) and have blown on my cereal on more than one occasion!
I also tend to muddle up my words; calling my boyfriend dad, asking for 'idiotic sports drinks' then correcting with 'ironic sports drinks' all the time meaning 'isotonic sports drinks!' And other fairly amusing things, which I cannot remember, due to brain fog.

On the subject of memory, I'd like to finish with this aspect of the cognitive problems an M.E. sufferer faces daily. I forget things, a lot. From trivial things like how many ready meals are left in the freezer, to more worrying things like who my boyfriend is and the time of year. Fortunately, these more serious episodes happen rarely, however they can be quite scary for myself and those around me. Though recently they've been on the increase. I fear I keep overdoing it each day, but I'm struggling with pacing myself, and leaving the tasks to be done to others. So, in lieu of this, I am going to rest now, goodnight.
Alice© Alice Daley 2013

Gratitude and Grace

This post is to say thank you. As humans, we don't say thank you enough, we're always focussed on the negative things and rarely express gratitude or even acknowledge the actions of others. We are self-absorbed beings, concerned only with our own lives and those closest to us, rarely thinking of others and always looking for gain. I've needed a lot of help recently, with one thing and enough, and never seem to think I've expressed sufficient gratitude  often using the word 'sorry' instead of 'thanks.' So here's to all of you out there who've helped me out in any way.


To my wonderful Jacob, my rock and my strength. Words cannot express how grateful I am to you for all you've done for me; the sacrifices you've made, the  hours and hours of caring and cuddles. Thank you for letting me try it myself before you step in to help, thank you for holding me whilst I cry. Thank you for  staying beside me for a full 56 hours when I was in hospital, thank you for making my dinner. Thank you for giggles and fun, thank you for walks in the park, thank you for holding me up so I could dance at my friend's party. Thank you for mopping up after me when I've been very ill, thank you for comforting me in the middle of the night. Thank you for everything you do and more, thank you for putting up with me when I'm over-tired, grumpy or confused, thank you for loving me no matter what, and you know the same goes for you.

To my mum and dad, thank you for always being willing to support me, even if you don't understand or agree with me at times. Thank you for loving me even when I've hurt you, though I never ever meant to offend. Thank you for raising me the woman that I am, and thank you for teaching me well. Thank you for introducing me to my faith in Jesus, and thank you for praying for me. I love you very much, never forget that, and I'm really grateful for everything you've done for me. 

To my siblings; thank you for loving me and looking after me. Thank you for showing me the ropes of life and always being there when I need you. Thank you for giving me lovely nephews and nieces; I adore them and will endeavour to be the best possible auntie to them, even whilst I'm sick. Thank you for having me to stay for weekends, taking me places, and being genuinely awesome people. I love you lots.

To my honorary siblings; you know who you are, thank you for being caring, kind, reliable and local. You are always there offering emotional and practical support when I need it. Thank you for giving me lifts, hugs, gifts and somewhere to stay, your selflessness means so much to me and I will do my best to repay you when I can.

To my close friends; Abi, Kim, Millie, Eluned and Debbi thank you for all your care and support, thank you for making me laugh. Thank you for being crazy and weird and awesome, thank you for making me smile when I'm down, and always being around for a chat and a hug. You've made me see that not all humans my age are idiotic, and that I am, in fact, a reasonably tolerable human being. Still, thank you for putting up with me- that's truly admirable. I hope and pray that we will stay in touch for a long time; I couldn't survive without youuuuu!! 

To my fellow poorly people and internet friends; where would I be without you eh? Thank you for your tips, advice, and long chats, they always leave me feeling understood and reassured. Thank you for stopping me going completely insane, and thank you for being my friends. 

To everybody else, those who I've forgotten or overlooked, I'm sorry. There are many good, kind hearted people out there, and if I were to name every one of you we'd be here all night and into 2014. Still, Thank you, and and may you be encouraged. You may feel your selfless, hard working attitude is being taken for granted, undervalued or simply ignored. Know this: that although people don't show it very well, they need you, they love you, and they do appreciate all you do. Lets not just set aside one day a year to thank our mothers, fathers, and whoever else deserves a bit of recognition, but instead say thank you more often.

Daily Encouragement

"Grace is the beauty of form under the influence of freedom."

"Acceptance of the unacceptable is the greatest source of grace in the world."

Grace is something I've never been very good at, I'm naturally clumsy and awkward. When I first became ill I kicked up a fuss, I refused to let the illness take hold and definitely did not 'go gracefully,' as it were. I continued to do all the things I'd done before getting ill, and would not accept the full extent of how disabling this illness could be. I crashed and burned and now I'm bed-bound, having help with washing and even eating. 

So, if you're in an early stage of a chronic condition, please have the grace to accept that you're ill, you're not how you used to be, and that it's okay to stop, rest, and say no. Your health is the most important thing; especially when it's so fragile. Don't let pride delude you into thinking that stopping when you need to is weakness, or giving in- it takes more strength to 'go gracefully,' than it does to kick and scream about it.

With love, Alice xxx

© Alice Daley 2013

Holidays, Hospitals and Hope

So over Christmas I went to New Zealand. I went with my parents which was interesting, but it was one of the best holiday's I've had. My sister lives in Auckland and has just had a baby, so we went out to see my nephew, baby Dylan. Here are a few of my snaps, with captions and stuff!

 This is Hot Water Beach, Whitianga. 

  This is Hot Water Beach, Whitianga.

  This is a palm tree in Whitianga.

  This is an exploding geyser near Rotorua.

  This is Hot Water Beach, Whitianga.

  This is Huka Falls.

  This is me sailing on Lake Taupo.

  This is a smoking volcano near Lake Taupo.

  This is our first stop on the awesome road trip.

 This is me and Twinkle, chilling in the campervan.

This is me and the lovely Rik, who I finally got to meet on my day trip to Wellington! Rik is one of my really good friends, despite us living so far away from one another, and so it was really amazing to see her in the flesh!

I am aware that this blog post gives little details of my holiday, and there are no pictures of my nephew. This is because I'm exhausted from my holiday and would like to sleep lots, and because I don't want to make Dylan's photo available to the public without asking. I loved the sunshine and I think that the vitamin D did me good whilst I was out there. However now I am on a bit of a crash.

I was recently admitted to hospital with severe stomach pain, vomiting and fever, they suspected appendicitis and I had an emergency operation to investigate. I did not have appendicitis, the surgeons found when they opened me up. Instead I had something much rarer, called Meckel's Diverticulum. It's a deformity one has from birth, and doesn't usually cause a problem, where the small intestine bulges a little to form a pouch like the appendix. When the pouch becomes inflamed, similarly to the appendix, there are all the typical symptoms. They have removed said pouch, and re-sectioned some of my bowel. I stayed in hospital 8 days, but now home, I'm recovering okay, though I've become entirely bed-bound now. Hospitals are hard places for people with M.E. ad they are noisy and mess up our routine, we're not allowed to take medication when we need it and not many people know about our condition and how ill we are.

Daily Encouragement

“Hope is the thing with feathers 

That perches in the soul 

And sings the tune without the words 

And never stops at all.” 

― Emily Dickinson

“Hope,

Smiles from the threshold of the year to come, 

Whispering 'it will be happier'...” 

― Alfred Tennyson

I've been feeling very hopeless of late, like every time I make an improvement, something comes along to kick me to the floor again. I have gotten increasingly emotional, stressed and generally not good. Stress is obviously not good for my illness, especially not for my non-epileptic attacks, which have gotten a lot worse. However, I've started making YouTube videos about M.E. and how it affects the lives of myself and many others. I've started a video blog series called the Pyjama vlogs which can be found on my channel here: http://www.youtube.com/user/ThoughtsFromAlice

However we cannot lose hope, because hope is all we have. Hope is a flickering candle in the darkness of turmoil. When all else fades away, people let us down, situations prove too much to handle. Cling to hope. Things will get better, inevitably. They might take turns for the worst, they might seem impossible, but eventually, things get to a point where they cannot get worse. Often, it's our own perspective on the situations we face that determines the outcome of said situations. Don't get me wrong, I'm not asking you to flit through the clouds on a beam of sunshine and fairy-dust, but don't while the hours away sinking ever lower into your own personal pit of despair. Trust me, I've been there and it's not pretty, and ultimately, it gets you no further up the happiness scale. Find someone close to help you see the lighter side of life, laugh often and love deeply.

Until then, take care
Alice xxxx

© Alice Daley 2013

Musings on Madness

So I kind of have a lot to say in this post. And very little of it is to do with M.E. It's things about life. This probably won't be well written, as I am brain-foggy, but it will be from the heart. Also, I am not a psychologist, and this is my opinion formed from my own experiences, it is not fact.

I think we're all mad. Genuinely. For the last few months I've been convinced that I am going mental, which is apparently a sign that I'm not going mental, but who cares? I cry, I scream, I have panic attacks and start shaking. There are times I don't recognise my own boyfriend, sometimes I scream and think he's going to hurt me, and occasionally I sit in the middle of the floor and cry whilst I cut my legs to shreds with a razor blade. Now this raised concerns, am I mad, psychotic or depressed? Do I have an anxiety disorder? What about my seizures, are they a mental health issue? I don't know. But there's one thing I will say, people react to trauma in different ways. Some people become emotionless, mechanical, and just seem to carry on with their lives, just with less vigour than they used to. Others scream and cry and throw things and generally create drama. Some people cut themselves, others starve or burn or hit themselves. Many people like to talk about it, many don't. Some people shut themselves off, become isolated and develop non-conformist habits. Other people seem to carry on leading a perfectly 'normal' life.

But this in itself raises questions. What is trauma? The online dictionary defines it as:
1. A serious injury or shock to the body, as from violence or an accident.
2. An emotional wound or shock that creates substantial, lasting damage to the psychological development of a person, often leading to neurosis
3. An event or situation that causes great distress and disruption.

Physical trauma, to my mind, changes meaning as we age. For example, a young child who falls in the playground, and grazes their knees for the first time, is entitled to cry as much as he likes, as this is probably the most traumatic thing that has occurred in his life so far.

(On a side note this is why doctor's "pain scales" annoy me.
Pain is relative to how much or little pain you've experienced before. That child would rate their knees as a 9 or 10 on the pain scale, simply because it's the worst pain they've ever felt. However an older child with something like appendicitis, would rate their pain as a 9 or 10, and the grazed knees as maybe a 2 or 3. Does that invalidate the first child's feelings of pain? Of course not, it is simply that the older child has had more experience of pain, and therefore is able to put things into perspective.)

So by physical trauma, I mean every pain or illness you've ever had. No matter how seemingly insignificant. You are entitled to your pain, and nobody else is justified to tell you that your pain is not how you say it is, just because theirs is 'worse.' In the same way, you are not entitled to belittle someone else's pain, because you're having a 'worse' time. This is something I truly believe in. 

Emotional trauma, again, can be any event that unsettled someone, from missing the bus, to the loss of a loved one, from losing your keys to being assaulted. Now I realise there seem hugely disproportionate, however, consider this scenario:

'Katie stepped off the bus, knowing she would be home alone tonight, she fumbled in her pockets for her house key. Empty. Panic washed over her, she felt sick and dizzy. Then she remembered the bag slung over her shoulder, and began emptying it frantically onto the icy front path. Her numb fingers started to shake as her key was nowhere to be seen, what could she do?'

How would you like it if you were Katie, and someone told you that you had no right to feel upset or panicked, because their grandfather has just passed away. Their trauma, as much as it is valid and deeply saddening, does not actually help you to feel better. You're still locked out of the house in the cold.
Emotional trauma is considered to be the most common trigger for 'madness,' and this is hardly surprising. Our brains are good at dealing with physical pain. Okay it hurts, sometimes a lot, and sometimes for a long time, but it's obvious to our brain what the problem is; the brain can think 'my arm hurts, better not move it' or 'my tooth hurts, better not eat toffees.' Our brain can protect us from further injuring our bodies, because it can recognise where and how it hurts. The brain however, is not so good at dealing with emotional pain. It struggles to compute feelings of fear, hate, guilt etc. It doesn't know what to do with these electrical impulses a lot of the time, and therefore we can behave irrationally. For some people, the effect of the trauma is amplified, for others, well the lucky sods seem to deal with it pretty well. I don't know why certain people act within the norm as a response to trauma, and others don't, but I believe since we are all uniquely crafted, everyone is truly different. (Yes, even you identical twins.)

I like the third definition of trauma the best. Any event or situation that causes you great distress and disruption can be considered trauma, as far as I'm concerned. Nobody lives a life that resembles skipping from cloud to cloud surrounded by sunshine, butterflies and pink ponies. Reality just isn't like that. The human race is screwed up, and we live in a screwed up world. It is sometimes an appropriate response to reality to go insane. Your trauma can affect you in so many different ways, and you're entitled to be effected by it, in whichever way it manifests itself. Though if you're able to channel the trauma into less destructive outworking's, it's probably not advisable you don't go around beating people up, and claiming that 'I had a deeply traumatic life, therefore I am justified to punch you in the face.' Combating trauma with trauma only makes the effect of your trauma go further. At some point I shall watch 'The Butterfly Effect' and write a blog post about this concept, but that's for another time.

It can be deeply hurtful to a person to tell them that their problems aren't 'big enough' to warrant help, or that you have bigger issues going on right now. However, it can be helpful to someone suffering in this way, to aid their sense of perspective with a gentle reminder of their own circumstances. Do not dismiss the issues they have, by simply saying 'just think more positively' or 'it can't be that bad.' Instead, support them, let them know that even though you may not understand what they are going through, you are available for them, and you care. Remind them of all the good and wholesome things in their lives; a loving partner, happy family, a good education, and many other things they may or may not have. I do not think there is anybody in this world that has nothing to be thankful for. Even if that something is simple hope. Hope that one day, things will improve.

Now we come onto a slightly broader, bigger question. What is madness? 
I looked at the dictionary definition of insanity, and found it somewhat vague. I also didn't agree that this is the worlds view on madness. None of us is the same. We all possess different quirks, and abnormalities. I used to have a friend who was convinced her teeth were going to fall out. Another of my friends is anxious about dying in clothes they wouldn't want to be buried in. I am scared of glass lifts, electric toothbrushes, and any horror movie ever. I don't like lemon cake or anything slimy, and when I see something cute my entire face implodes. These things make me different from some people. However, I am not the only person in the world with these characteristics. I might be the only person with this combination of anxieties and quirks, but I am not alone in them. Everybody feels like they're going mad sometimes. It's just the way we deal with the things life throws at us every day. 

Now I know there are diagnosis' and hospitals for those with mental illness and psychotherapists and all that, and I am in no way saying that they are irrelevant or unnecessary, some people have very specific and extreme needs, which obviously cannot be ignored. But what I am saying, is that you don't have to feel like there's something wrong with you if you deal with things in an atypical way. There's not. On another note which will become another blog post, not one of us is 'normal,' as the concept of 'normal,' is screwed up. If people aren't observably mad, chances are inside they're planning to murder their little sister's bunny, or something. Besides, I like overtly mad people, they are so much more interesting than those whom attempt to keep up the appearance of being like everyone else. Those sort of people bore me.

So my friends, stay mad. Don't feel you have to hide your insanity from me, wave it around your head, dance around naked with it tattoo'd on your belly, and don't worry, unless you see two men in white coats exiting a van outside your front door.. Then consider worrying a little, maybe.

Love you all,
Alice

© Alice Daley 2013

Hurting and Hapiness

Hey there guys.
Stuck in bed today, realised I hadn't blogged posted in quite some time! Sorry about that.
So today I've finally managed to get a doctor's appointment, with a doctor who was slightly more sympathetic than the others the last time's I've been to the doctors. I really need some answers now, I'm getting impatient, getting sicker, less mobile. It takes me half an hour to crawl to the toilet and back if I'm alone. If I go out I have to use crutches and more often than not my boyfriend ends up mostly carrying me despite the pain. I keep trying to go out, socialise and lead a normal lifestyle but it's just impossible. I started my second year of college last week and I'm scared I won't get to finish it. I have so many plans and dreams I have had to put on hold due to this horrible illness. I want to ride horses again. I miss that so much, so so much. I miss the freedom, the security, the wind blowing through my hair, the leather between my fingers. So cliché  I know, but it was my life. I rode 6 days a week, 2 hours each night and worked at the riding stables 10 hours each Saturday. It was all my free time, and it hurts to be unable to even go and see the horses at all. I am going to try and get up to the stables when I'm a little more mobile, but I'm scared it will just make me miss it even more. Last night, I wanted to go to sleep and not wake up again, the pain is just so unbearable at the moment. I can't use the crutches because my arms and shoulders hurt too much, but at the same time I can't walk because my legs are too weak. A lot of my friends are fed up with me, keep asking when I'll be better, and if there's anything they can do. Some are still asking "what's actually wrong?" a question I still don't have the answer to. If I say M.E. I have to explain it to them, and then explain that I've not been diagnosed yet because of the ambiguity of the doctors. My boyfriend is fantastic, but he's just got a job so he doesn't have all that much time for me any-more, and he wants to keep his social interactions up even if mine are minimal. I am so lonely at the moment, nobody seem's to bother with me any-more. My close friend Rebecca, who's taking me to the doctors, is moving away to university at the end of the month, then I'll be even more alone.

Daily Encouragement

I asked some of my friends, what is happiness?

Happiness is:

· Happiness is infectious - smile and the world smiles back.

· Happiness is being able to define happiness!

· Happiness is when what you think, what you say, and what you do are in harmony.

· Happiness is not something ready made. It comes from your own actions.

· Happiness is having a large, loving, caring, close-knit family in another city.

· Happiness is only real when shared. 

· Happiness is having someone to share it with.

· Happiness is rare.

· Happiness and contentment aren't always the same thing. Contentment is the rare thing. Happiness not so much. Depression aside I'm happy.

Happiness is the meaning and the purpose of life,
the whole aim and end of human existence.

So, what is happiness?

For me, happiness is feeling loved, safe, secure and having hope. Happiness is my cat Mana coming onto my lap when I'm down. Happiness is my boyfriend Jacob stroking my cheek, lulling me into safe, nightmare free sleep. Happiness is enjoying the little things in life. Happiness for me, is a choice. I can choose to be happy despite my circumstances. I am choosing happiness. Are you?

Love you guys, Alice xxxx

© Alice Daley 2012

Symptoms and the Sword

Morning All,
So today I'm going to talk about some of my symptoms and how they effect my daily life. Myalgic Encephalomyelitis is characterised through many different symptoms but the underlying one is total utter exhaustion all the time, exhaustion that doesn't get better with sleep, and that is always completely out of proportion to the level of activity one does. Mental and physical exhaustion, muscle fatigue and feel generally really unwell.

This chronic, severe and debilitating fatigue is not the same as the blanket term CFS, which doesn't really cover the range of really nasty symptoms that accompany those suffering with M.E. I can only talk from my own experiences, and the experiences of others with M.E.

Some symptoms I experience include:

• Seizures, these aren't very common amongst M.E. sufferers but there is evidence of some others experiencing this too. I am currently undergoing tests to rule out epilepsy but the seizures started about the same time I started getting sick with M.E. so I'm sure they must be related.
• Severe headaches, sometimes too bad to use a computer screen or even tolerate the smallest amount of noise or light, but more often than not they are moderate headaches which just last a long time.
• Stomach aches, and cramping pains in the lower abdomen. These often cause me to curl up into a tight ball and scream/cry/whimper until the pain subsides. If Jacob is here I'll get a tummy rub which can ease the pain a little.
• Ear, throat and glandular pain, not very severe comparatively but I do get pain and discomfort in these areas, sometimes lasting a few days.
• Sudden unexplained bouts of weight loss, in the last month I've lost about 6kg (about 13lbs) despite eating 3 good meals a day. However I've also been struggling with:
• Vomiting after meals, my stomach feels enormous after I've eaten, I feel uncomfortable and am often sick. I take anti-sickness tablets before I eat and this often helps me to keep my food down.
• Nausea, this can be very severe, to the point where I'm gagging on thin air. It's one of the worst feelings, and comes with hot flushes and dizziness, kind of like feeling travel sick, but much worse.
• Muscle pain and weakness, last but certainly not least, this is a really hard part of M.E., for myself and a lot of other people too. The whole body aches, but my worst areas are my back, hips and neck. Other joints such as knees or wrists experience pain and weakness on a fairly regular basis, and it means I have to walk long distances with a stick.

Daily Encouragement

“Sever the ignorant doubt in their hearts with the sword of self-knowledge. Observe your discipline. Arise.”

One problem many M.E. sufferers have to contend with is the doubts of others. Many are told that they're not really ill, it's all in their head and they can just snap out of it. Likewise, many of our friends and family get fed up of us being ill, with comments like 'oh you've still got M.E. then' and 'we all have a bit of M.E. sometimes..' and 'I get tired too.' Things like 'can't you just sleep for a week?' and 'you don't look ill.'

This is where knowing about your illness comes in really useful. Knowledge is the most powerful weapon against the doubters. Read up on M.E, join support groups and get in touch with others with M.E. Find a good doctor, and if your doctor doesn't believe you, change doctors.

Take care all, Love you! xxx
© Alice Daley 2012

Seizures and Strength

Hi Everybody, Sorry I haven't been around much these last few days. I've been in hospital since Sunday afternoon. Was rushed in with a prolonged and serious seizure, over 10 minutes. Thankfully Jake called the ambulance and they took me in and I was admitted, stayed until I was discharged today.

This is the lovely Jake, by the way, who looks after me immensely well, and stayed at my hospital bedside for 52 solid hours, until the hospital staff finally kicked him out. Everyone was amazed by his devotion and amazing strength.

I have tonic-clonic seizures, which means I feel light-headed and dizzy for a short time before the seizure, which starts with me losing conciousness for a few seconds, all my muscles tense up and I usually fall down or fall off what I'm sitting on. This is the tonic phase of the fit. Then comes the longer, more violent part of the seizure, whereupon I convulse uncontrollably, and sometimes I wet myself, bite my tongue or the inside of my cheeks. As you can imagine these fits are quite scary for anyone standing by. This is the clonic phase. After I stop fitting, I remain unresponsive, drowsy, disorientated and confused for 10-30 minutes. I loose the memory of about an hour or two before the seizure and usually have a pretty bad headache too.

So the hospital did a bunch of blood tests, a head CT, and an MRI scan, and they all seem fine, which is really good. But I've been diagnosed with non-epileptic attack disorder, there's no cure its just treated by avoiding triggers like stress and busy situations.

Daily Encouragement

“In the depth of winter, I finally learned that within me there lay an invincible summer.”

Strength is really important when handling M.E. Particularly emotional strength. Nobody else can do this for you, you have to learn to be strong for yourself, as people will inevitably let you down. Strength isn't about bearing under the strain of this illness, it's about learning to accept that you can't do it all, but not being beaten by inability to carry out tasks. I used to get really frustrated when I couldn't finish a puzzle, or make a cup of tea, or do up my buttons. I would scream out “I'M SO USELESS!!” and break down into tears. Now I am learning to be strong and graceful, and when I can't do something, I try to say “Maybe I can try a bit later, or tomorrow.”
Be strong guys, I love you all! xxxx© Alice Daley 2012