Fame and Identity (oh my gosh 1500 views!)

Wow guys!
So I'm averaging out at about 100 views per day, which is crazy! I want to say a great big thank you for all your support and positive feedback, for someone with such low opinions of herself, this has given me a much needed confidence boost :) I hope to be writing more posts, and will try for a new one every/every other day, health dependant. However, for now my well of ideas has run dry. If you've got any ideas of your own I'd be more than happy to write about them, be that a symptom you need some help with or just an aspect of life that's getting you down. I'm here to provide personal, positive insight to all of you out there who are battling this condition, or just need a bit of cheering up, or just want to know how I'm getting on.

Today I want to talk to you about the concept of an 'M.E. identity. I borrowed this from my friend Bree, and she explains her pixie 'Tiffany' really well in this video:

(Yes I like using videos now, deal with it.)

And I decided to create my own M.E. identity. In an earlier post, 'Disability is like having a Gorilla in your house,' I referred to any disability or chronic illness as having a unpredictable and awkward pet gorilla to look after 24/7.
I wasn't sure if I could draw gorillas, though I had a pretty good go. I named her Glenda, and she is my M.E. identity, I think. I don't have the right colours to colour her in yet, but when I can afford it, I'll buy some more felt tips and bring her to life.

Before I created Glenda, however, I drew Wilbur the whale. He turned out pretty good and was my original M.E. identity. I might still use him, or switch between the two, or use Glenda for my physical symptoms and Wilbur for my mental/emotional symptoms. I may not use either of them, they may become characters in a children's book I plan to write. Who knows? All I know is that I've missed being able to draw, and I'm happy I've been able to do some more drawing recently.

"Wilbur will now be who I blame for any awkward situations arising from my various illnesses. Wilbur is selfish, controlling and generally a pain in the bum. Wilbur the whale was originally going to be Glenda the gorilla, but I can't draw gorillas, and whales are just as inconvenient to have sleeping on top of you etc."

So, I'd encourage you, if you can, to make your own M.E. identity, and blame them for all the inconvenience your illness causes. It's a fun activity to do, and if you 'can't draw,' there are plenty of colouring in pages online you could print off and use!

Peace out,
Alice xxxx© Alice Daley 2013

The notion of 'I'm fine.'

Hello friends,
Now I don't know about you, but I find myself using the phrase 'I'm fine,' at least ten times a day, sometimes more. Not quite as often as I use the word 'sorry,' but still pretty often. This little phrase can get you into, or out of, a lot of trouble with friends, family, spouses, doctors, colleges and just about any one else. They are effective yet dangerous.

The first problem with these two little words, is that they can have so many different meanings. These meanings can vary depending on whether you're male or female, young or old, and what sort of mood you're in. I'm going to stereotype now so do forgive me...
For the average teenage girl who's just gone through a breakup, 'I'm fine,' probably means 'I'm falling apart inside but I don't want to talk about it. Hold me, bring me chocolate and fluffy things.'
For the average middle aged bloke, 'I'm fine,' means 'I'm fine.' As far as I'm concerned men are much less complex than women, they generally mean what they say. 
Other meanings of 'I'm fine,' could include:

• I'm not fine at all, but I don't want to worry/upset you
• I'm so-so, but I don't really want to talk to you, go away
• I'm fine, just too tired to think of a more positive response
• I'm not fine, but please leave me alone
• I'm having the worst day, but if I tell you you'll think it's your fault
• I'm far from fine, but I'm putting on a brave face for the world's sake
• I just want you to hold me, because when I'm in your arms, everything's okay again
• I'm not fine right now, but I will be
• You don't really want to know how I am, you just asked to be polite
• I'm fine, no really, I am
• I can't remember what fine feels like any more
• Whatever's going on with me is something I can handle, I don't want to bother you
• Stop worrying about me, I'm fine

So you can see where the confusion lies. I think this is a fairly British, not too modern thing. Stiff upper lip and all that; we see admitting to our weakness as being weak, where in actual fact, it takes a lot of guts to open up.

The second problem here, is that we expect other, flawed human beings, to decode our tone and body language, understand exactly which 'I'm fine,' we mean, and act accordingly. Then when they don't, because guess what? Your best-friend/mother/boyfriend/milkman/dog cannot read your mind, and may, from time to time get things wrong, you get upset because 'NOBODY UNDERSTANDS ME!!'

You're right. Nobody can understand you, because they aren't you. They've not lived your life, felt your feelings, experienced all the things you have. They have a different genetic make up to you, different fingerprints, different families and friends. You will never fully understand them, and they will never fully understand you. You might get close, or so you think, you'll learn each other's thought patterns and mannerisms, but let's be honest, none of us truly understands ourselves, so how can we expect someone else to?

Now I'm Christian, and although I don't believe that waving it in other people's faces does any good, it is an important part of my life. So if you're not 'religious' feel free to scroll on by, but I want to share with you something that I believe is beautiful. I have one friend, who understands me 100%, better than I could understand myself. They know each and every thought before it leaves my neurons, they know the number of cells in my body, and have lived life beside and inside me. They feel my pain as deeply as I do, know my deepest secrets. They are always there, never let me down, never leave my side. That person is Jesus Christ, who died this very day, nearly 2000 years ago, to save us from ourselves. He is my best friend.
This song describes it perfectly:

Well I appear to have gone off on a tangent, but an important one at that. If you want to know more about what I believe, get in touch with me; I'd be more than happy to share with you.

Anyhow, the point is, that we can't go around wearing the mask of 'I'm fine,' expecting everyone to see behind the mask. Maybe we want people to see, maybe we don't, and regardless of what we want, some people will see, and others won't. Of those that see, some won't respond in case you didn't want them to see, and some will worry endlessly, fussing over you, trying to make it okay again when really there's nothing they can do. Treasure the people with insight, those that see behind the mask, those that knock the walls down or climb over them. 

And if you see someone struggling behind a brave face, ask them if there's anything you can do, don't force your presence, some people just want to be left alone, but let them know you're here for them and although you can't understand what they're going through, you know how much life can hurt, and you want to support them no matter what. Don't be disheartened if they push you away, they don't mean to offend, give them some space but don't abandon them. There are some people in this life who you may have to close the door on, for your own sake or the sake of your loved ones. That's okay, I promise you, nobody has just one person they can turn to, and you must always protect yourself first.

When you ask someone 'how are you?' try to be genuine and not superficial; if you have the time to ask how they really are, then ask. If you're asking out of politeness, and everyone does, don't worry. They will meet someone further down the line who will have the time and resources to help. You cannot be everybody's hero, stay true to those you're close to, and only help if you've got the strength and coping strategies to handle it.

I'm not sure how much sense this blog post made, but I hope you get my notion. It's okay to not be okay, and it's okay to tell others that you're not okay.
Stay strong friends, with love,
Alice
© Alice Daley 2013

Depression and Doctors

Hello friends,

Cheery title for this post. 

I want this to be a place I can just air my thoughts without too much care for the ill effects, but I'm still a little nervous about that. There are so many things that people don't know, that people don't want to know about me. Things that I should or shouldn't have said or done, but equally things that happened to me that I couldn't change or control. I have deep hurts.

Recently I've been getting worse, psychologically anyway, as well as physically. I've been having flashbacks, stress triggered seizures, and wild mood swings that leave me chatty and content one minute, then angry and tearful the next. It's been really hard, I feel like there are about 60 different people in my head all shouting different things at me. It's hard to know what's reality and what's in my head; very distressing.

My boyfriend's been great with me, despite a bit of tension at times where I get upset and unreasonable and he shouts at me. However, sometimes after having a seizure, I don't remember being horrible and once he understood how messed up and out of control I've been feeling, he apologises and we have cuddles to make it better. I couldn't ask for a kinder, more understand man at my side. He's stuck with me through so much, through nights of tormented pain, days of tears and darkness and every other horrible thing that's happened to me. He's tolerated me lashing out at him when I didn't recognise him, crushing his fingers whilst in severe pain, spoon feeding me, holding my convulsing body in his arms. He's still beside me. This amazes me every day; that he loves me enough to stay at my side through all this pain and hurt. I thank God for him in my prayers every night.

"I am seriously fed up of people letting me down. Look, I know I've not been the best friend recently- I've been stuck in bed for most of the time and stuff. But I try, and what I can do, I do without fail. I'm not tooting my own trumpet, of course not, but I am a little miffed by how most people I know seem to have forgotten me.

My Jake does a lot, an awful lot, more than he should do, and more than he can handle. But who else is there? And then during the moment when I really need him, like REALLY, REALLY need him, he's too tired or busy to be of any use. Argh! I'm so wound up and frustrated at the moment. I'm getting more ill each day due to excess stress, over doing it, and a multitude of other things. But I have no choice, things have to be done, and I seem to be the only one capable or bothered enough to do them!" -This was part of a separate post but I decided to just inject it into this one. Since I wrote this, some of my friends have gotten in touch and might be coming to stay for a few days, which is nice.

I am a doer. I always have been, hard-working, motivated, and competent. I am hopeful and like to think I'm somewhat of an optimist, though at times when everything's going to pot I tend to panic and get emotional. This illness has taken so much from me and left me feeling very vulnerable and really down.

Still, not to worry. I've got a double appointment with my GP on April 2nd, with my boyfriend and good friend Debbi present. We're hoping to get some useful stuff out of him, and I spent the best part of today writing out a document detailing my issues and what we want from the doctor, including:

• Pain Killers

I need some long term, effective pain killers as taking paracetamol and codeine long term isn’t good for you, and my asthma problems means that NSAIDs trigger attacks. I would also like some advice on what medication is best for migraines, as I’ve tried a few OTC treatments to no avail. 

• Sleep advice/medication

Insomnia and night time fevers make sleeping difficult, as well as increased pain and malaise at night time, but some advice would be appreciated.

• Neurologist referral

I think a neurologist would be able to help with the weakness, paralysis and seizures.

• Dietician referral

I am losing weight and really need help with eating, what to eat and how to keep it down, also with some other digestive difficulties, as again, none of the OTC treatments seem to work.

• Asthma nurse appointment

Just to make sure I’m on the right inhalers, and to crack down on having less attacks.

If any of you have any advice on how to deal with my GP, as he is very unsupportive, and does not believe in ME as a physical illness. We're hoping to change this on Tuesday, but any tips would be really really helpful.

With love, Alice
xxxx

© Alice Daley 2013

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