A real-life relationship

So it's coming up to a year that Jacob and I have been an item, and I realised recently that we have a 'real-life' relationship. But what do I mean by that?

When you first meet someone, and you realise that you like them, you will modify your behaviour accordingly. You'll accentuate what you see as your best traits and hide some of your less attractive qualities. You may be a little slap dash with the truth, embellishing anecdotes and such, to make you seem like a more desirable partner. Everyone does it, it's not something to be ashamed of; it is simply human nature. 

First impressions count for a lot and can lead us to have false expectations of a person, based on their initial character and behaviour. A woman who seems very loud in the club will be assumed to be a confident and strong-willed one, whereas that nerdy guy you meet in the library is expected to be quiet and awkward. When we 'fall in love' we try to act as perfectly as we can, and that can lead to the danger of our lover believing we are perfect, and feeling more than a little put out when we inevitably hurt them or let them down. 

But humans aren't perfect. We are all flawed beings, even your partner will do things that annoy and upset you, but being a couple is not about living up to one-another's expectations. It's about reality; and sticking together through all of the tougher stuff.

In reality, everyone argues, everyone disagrees, and everyone gets hurt, even by the people that promise they'll never hurt you. A relationship where you never have a single disagreement at all is a very unhealthy one, as it probably means one half of the partnership is dominant, the other submissive. 

Relationships are about give and take, winning some battles and losing others, but not getting caught up on who hurt who and when. It's about unconditional love, forgiveness and reconciliation. I may not be the most experienced in relationships, but I've learnt a lot over the past year, and I'm still learning. And I've noticed a few things that can make things go a little more smoothly.
So, what are my top tips for a real-life relationship?

1. Let stuff go every once in a while, isn't your relationship worth more than a petty argument?
2. Assert yourself if something really matters to you, even if you'd rather just submit for a quieter life.
3. Try to strike the balance between assertion and submission, pick your battles carefully so you can protect what's most important to you.
4. Don't be scared of arguments; they are healthy at times.
5. Always make up before going to bed, never let things fester overnight.
6. Don't get other people involved unless you're sure they're going to help the situation, this is between you and your partner.
7. If you can't work things out in a few days, try and get an impartial third party to hear both sides of the story.
8. A kiss and a cuddle makes all the difference, remind yourself of all the positive things about your relationship, rather than focussing on a disagreement. 
9. Be real with one another, you can't live your whole life under the pretension that you're both perfect.
10. Be lovely people!

Peace Out,
Alice xxxx

© Alice Daley 2013

Warning: contains strong emotional content.

I just can't take any more. This illness, this life. I don't know how to do things right, and when I try I screw up. I am so anxious, so unhappy, and the only thing that makes me happy makes others unhappy. I care about other people more than myself, but sometimes I wish someone would put me first. I know that sounds awful and I'm sure there are people who put me first and stuff but I just can't handle things right now. I need support more than ever and all I get from people is telling me how I've messed up, or that they can't deal with me. I need someone, who will always be there, through all the pain and everything. I know everyone's just human, and everyone needs a break, but I give people a break and they still ask for more. I don't understand what I'm doing wrong. I tell the truth, that I'm not okay. And people can't handle it. Would I be better saying 'I'm fine.' to everything, I don't know. At least then I'd be the only one getting hurt then. I get hurt anyway. I feel guilty for upsetting people, and I just don't know how to make things right. I am a bad person, and I hate myself. Because I know that tonight I will probably hurt myself because of someone who upset me. They didn't mean to, they were trying their hardest to help, but they had to go and now I'm left all alone with my thoughts. My thoughts will churn around in my head, they will grow and provoke me and hurt me. I feel so out of control at the moment. I don't want counselling, I don't want to be changed. I just want someone to accept me and love me as I am without changing me. I know I'm a horrid person but maybe I'm just better off alone, that way I can't hurt anybody.

I'm not writing this for support or sympathy. I'm not writing this to make people feel guilty about not being there for me, or abandoning me. I don't want anyone to read this and feel hurt, I just need to get the thoughts out of my head before I do something utterly stupid. I was told tonight that I am manipulative, that I use intense emotional cues to get my own way. This hurt me, because I have never been someone like that, and I didn't think I was like that. I have become much more intensely emotional since becoming ill, and that's put massive strains on all my relationships, but I thought people understood that a lot of the time it's the illness talking to me. I want to shut down and hide, to not contact the outside world at all. Maybe it'll be easier that way, maybe it will be harder. But all the same I just hope I can get through this, and not hurt any more people. I just want it to be okay, and I don't know what I can do to make it okay. I am exhausted, but I need company, I am desperately lonely and all I need is someone to talk to me. But I only want one person. They always make it better, they always make it okay. And now I feel like I've driven them away and it's all my fault and I don't know what to do. I'm sorry, ramblings over. 

© Alice Daley 2013

Blog Fog

This is an apology. I might not be blogging for a while, or at least not with the clarity and fluency that I usually am. My health has taken a turn for the worst and my brain-fog is wreaking havoc on my creativity. Stringing sentences together is exhausting and I've retyped this three times already. I feel like a huge let down for you guys because I really enjoy writing it's just too much at the moment. I'm going to miss you guys, but I know you'll still be here when I get back. Until then, take care. I hope you're all as well as possible. Peace out! Alice <3

  © Alice Daley 2013

It's kind of a funny story

So I watched a film this evening that really made me feel things that I haven't felt before. Well at least not for a long time. The film 'It's kind of a funny story,' tells the story of a depressed sixteen year old who admits himself into a psychiatric ward after having serious thoughts of suicide. Our protagonist (I learnt a new word today and felt the need to use it) Craig is admitted to the adult ward as the teen ward is conveniently for the plot line undergoing renovation. Surrounded by mentally ill patients who seem to roam free about the ward unless they are confined to bed like Muqtada, he is befriended by Bobby; someone who we never find out much about, but who is apparently depressed and has fits of rage as well. He also meets Noelle, a serious self harmer, who is witty as well as beautiful, who Craig obviously finds himself drawn to and falls in love with in a soppy scene on the roof of the hospital. (Nobody tried to kill themselves, though all through that scene I was waiting for one of them to attempt it...) Bobby, Noelle and the other patients work together to make Craig see that he can face life again, and he discovers new talents as an artist. 

By the end of the 101 minute film, everyone seems to be happy and dancing again and Craig starts his new life with a fresh outlook and a bright future along with his glistening new relationship with Noelle. Sickening, isn't it? All through the film I was feeling angry about what an unrealistic portrayal of mental illness it was. I know that's it's not the point, it was a comedy after all; a feel good film. But I was left with a bitter taste in my mouth, because unless you are living in a movie set, life really isn't like that. Depression is a long relentless slog, akin to towing a articulated lorry in a thunderstorm with a barbed wire harness around your waist and two broken legs. (Yes, I am getting better at analogies thanks to my Jacob whose rants are full of them!)
It isn't attention seeking, or 'just feeling a bit down,' it isn't romantic or kind or anything good. It is a medical illness, the same as diabetes or cancer or anything, and can be as debilitating as those. 

Depression isn't something that should be trivialised and made light of. Neither is self harm. Self harm, even in the 'attention seeking,' cases is a cry for help. Though not always consciously. I've self harmed for a good many years now and it's an addiction I am still learning to control. Personally I didn't self harm to cry for help, mine stemmed from a sense of needing to be punished whenever I wasn't good enough, which was all the time. I won't go into what caused this inferiority complex; It'll make a good post somewhere along the line. But there it was, and I loathed myself. I still do to a certain extent, although now I can appreciate that not everyone else hates me, even if I don't understand why. I scratched myself once with a hair clip, and it felt so right I just did it over and over until my arm was covered in scratches. It got worse and worse and I've got some pretty bad scars but the pain never left, it just grew stronger.

I just want to tell you, if you've cut before but especially if you've never cut before but thought about it, please don't. You are beautiful and precious and really, really, really not as bad as you think. And even if you are, a horrible loathsome person like me, cutting will make you feel worse. You get a quick fix, then the pain comes back but worse, and the next time you have to cut deeper because you feel so numb inside. Please, email me. Before you make that first burn, scratch or cut, email me. My email address is daleymaid@gmail.com and I will try to reply as soon as I can. You don't have to suffer this alone. I am here for each and every one of you. I love you.
Peace
Alice
xxxx

© Alice Daley 2013

An inspiration?

A lot of people have been telling me that they find my posts inspirational. I've received some envy from fellow writers that my statistics are doing quite well; nearly 3000 views now. I am really pleased for myself, of course, but I can't help but feel a bit guilty that others haven't shared in the pleasure of success. There are so many good writers out there, many of them much better than me, but I suppose I write things that people want to hear. I make people feel safe and good about themselves, I tell them it's okay to hurt and cry. Reading this blog is like getting a hug, it's reassuring and comforting; at least I like to think so, I certainly get comfort out of writing it. 

Others' writing may be more specialised, about certain topics or just a different style. But it's good quality writing, it's good to read and should get just as much traffic as my foggy ramblings. I don't feel justified in having this much success because I'm really nothing special. I just speak from my experiences  and from my heart. I'm not a counsellor, or a mental health professional, but I've survived a lot of pain, and I have a lot of empathy; sometimes too much. I can feel other people's pain, sometimes even more than they can. Suffering makes me hurt and I feel so powerless to help most of the time. 

But I'm going to keep writing if it helps people, because that makes it all worthwhile. If I can get through to one lonely, broken or unhappy person, and give them hope, then my work here is done. Helping people is all I want to do, but at the moment I can barely help myself. I feel like I'm falling again, back into the black slimy pit of depression. Depression is evil, and for me it's sort of worse than having M.E. I know a lot of M.E. sufferers do get depression as a result of their illness, after all becoming so severely ill can trigger a grieving process in itself. The loss of independence and health is so extreme, and for post people who get M.E. they are highly independent and hard-working people, I certainly was, and M.E. robs you of that. 

Part of my problem, however, is that before I was diagnosed as having M.E. I was diagnosed as having depression. Now I'm not sure whether this was a correct or incorrect diagnosis, but whichever it was, it really didn't help when it came to getting help for my M.E. which is completely separate from any depression I may or may not have had. Another problem here is that clinical depression and M.E. can have a lot of the same symptoms, but the treatment is the complete opposite. For someone with clinical depression, getting up and going out for a walk makes them feel much better. But for someone with M.E. that would make them feel a lot more ill and fatigued. 

That was partly when I noticed the change, aside from the riding accident and the Glandular fever type virus, was that my usual 'get up and go' attitude was making me worse instead of better like it usually did. Before M.E. struck, a walk to the park would lift my mood and my well-being, a ride through the woods tenfold. But after that, I tried to go back to the gym, I tried to exercise, get out of the house, do all the right things for depression. It made me so ill, but I kept going. I didn't want to be weak and I didn't want to let anyone down. It caught up with me in the end, I began having falls and faints, and just feeling terrible. I started having to take days off and it seems so quick that I've ended up pretty much bed-bound and very reliant on others to care for even my basic needs.

But with this rapid decline in physical health, my mental health has suffered a great deal too. I had to stop attending counselling because I was housebound, and still haven't found a counsellor who will come out to me. I've had to spend a lot of time alone, and with the current danger of me being alone, I've become very anxious. My separation anxiety from my boyfriend is doing neither of us any good and I'm slipping back into depression again. I've tried to fight it because the moment you admit to any GP treating you for M.E. that you're feeling a bit down they instantly label you psychosomatic and ship you off to the looney bin. (Well not quite that extreme but most doctors seem to think that a neurological illness like M.E. cannot coexist with a mental illness like depression, when in fact the former can lead to the latter.) 

I want to get my physical health sorted first, I have a severe, chronic, neurological illness that needs proper treatment; none of this silly CBT/GET nonsense. But if I mention the depression and anxiety to the doctor, he'll make that the priority and forget about my physical problems. It's such a battle getting treatment for M.E. as it is, so I refuse to give the Dr a foothold by telling him I'm feeling increasingly lost in my own head, like I'm at the bottom of a dark pit, and that any time I am alone I just cry for hours with anxiety and despair. I will sort out seeing the counsellor again, if they can make it out to see me. I have nothing against counsellors as long as they aren't CBT counsellors. 

I do not respond to CBT as it is too aggressive. I am very very fragile and don't react well to being told what I'm feeling is wrong. When I had CBT before, I was treated awfully and it made me much more unstable. I went in depressed and left suicidal. I vowed then to never trust CBT again and I never will. There are other types of counselling though, and they've helped me in the past so I'm willing to attempt it again, health allowing. 

I'm sorry this post hasn't been my usual fluffy self, I guess I just wanted to say that the reason I write such 'inspirational,' stuff is because like all of you, I'm going through a lot at the moment. I know what you're feeling and I'm here for you, because I love you, and I don't want to see you hurting.
*big hugs*
Alice xxxx
© Alice Daley 2013

Wibbly wobbly timey wimey stuff

Strangely enough this post is kind of about Dr Who. I'd never really watched much Dr Who as a kid, it just wasn't something I was in to- didn't watch much television full stop really. But with the new series starting and all, and due to the fact that the full set of the new (Christopher Eccleston onwards) series' are on my house-mate's LoveFilm, as well as my boyfriend being a fan, I decided to start watching them. So far I've really enjoyed them, skipping the few scarier episodes because I'm a wimp, I've watched up until the first few in David Tennant's first series. 

I'm torn between Eccleston and Tennant really, but they are all so different. My problem with Matt Smith isn't Moffat's writing, though that does irritate me; it's his apparent 'randomness,' which isn't all that random at all. He's a bit too awkward and excitable for my liking, but everybody has different preferences I guess. However I'm here to talk about time, more than anything.

We all have a past, a present and a future; that's kind of how life works. There's a quote that I first heard in Kung Fu Panda (though I don't think that's where it came from originally) which I really like:

'You are too concerned with what was, and what will be. There's a saying; yesterday is history, tomorrow is a mystery but today is a gift, that is why it is called the present.' 

My past is full of hurt and scars. So many things I've only told a handful of people, so many things I've told nobody. My past makes me sad and scared and hurt inside. But no matter how torn up it makes me feel, I can't go back and change it. Yes, it hurt at the time and the memories live on, I still get flashbacks and nightmares, and my past has a lot to do with my non-epileptic attacks, and my anxiety too. But there's nothing I can do to make it better, it won't go away and I have to learn to live with that. And that's okay, or at least it will be, with time. My friend Chloe is currently working through her own past, and documenting her progress in a really inspiring blog: Healing My Hidden Life

My future in uncertain to say the least. This illness can last between a year and lifelong. I'm getting worse every day instead of better, I'm going to finish college this year with 2 AS levels and 2 A levels, all of which are terrible grades because I've missed over half of this year and some of last year too. I am able to resit the year in September but what if I'm still too ill? I can't go back to college aged 30 can I? I want to get married, have children, have a career and a future, but at the moment I can't see past the end of the bed; literally. I feel like a big ball and chain around my boyfriend's leg, I'm holding him back from his full potential, and that's not okay with me. People keep saying 'it'll get better,' 'this isn't forever,' and the like, but the truth is, it might not. For some it does, but it's the uncertainty that's the hardest. In some people, it lasts 6 months, and others have died from it. 

I'm scared. I'm scared that I won't get better, and that because of the NHS's approach to treating M.E. (basically non-existent) that it'll take my whole future away from me. I don't want a lot, I don't want to be rich or famous or successful. The only thing that I want is to be independent, and to have a family of my own. I just wish a doctor somewhere could give me a piece of paper telling me how long it's going to last, and what I can do to get better. But M.E. isn't like that, it's different from case to case. I just feel like I've put my life on hold until I'm better, and that really sucks. I feel so lost at the moment, hearing all my friends plans for the coming year makes me feel so little. I'm reminded of how I felt when my big sisters left for university, left behind, never to 'grow up' like them. I've got my opportunity now, I'm an adult and yet I've been reduced to almost infancy by this wretched illness. I want my future and I want my health. It's not fair. But I can't worry about the future, as it's not happened yet. It says in the bible:

 'Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.' Matthew 6:34

And that brings me on the the present. Right now, I am laying on a sofa bed in my onesie, my eyes are aching and my nose is running; I've been sobbing for most of the evening. I'm exhausted but not sleepy, and sleep will not come. I know that when I fall asleep, I will have a nightmare, but right now I'm happy to be awake. I'm trying to write this and write something worthwhile for you all, at the same time I'm feeling guilty because my boyfriend's blog hasn't got nearly as much traffic as mine, despite the fact he is a much better writer than me and deserves more fame than I do. Speaking of which, you should really go check out his blog! It's great! Really funny and topical rants about the modern world: Old Man Wolfe Rants

So, we can't dwell on the past, and it's pointless to worry about the future. Make the most of your present, treasure it. Don't waste a moment, because life is precious, and you only get one shot at it; you aren't a time lord. Treat each encounter with those you love like you'll never see them again. Don't waste time on petty arguments and feuds, never hurt those you love, and forgive quickly. Life is short, too short for some, and your legacy will be in your character. Not how much you earned or what car you drove or how cool you looked, your nature; kindness, compassion, love.

Peace out
Alice xxxx

© Alice Daley 2013

Some of my scarier symptoms

Hello again,

Today I'd like to talk to you about some of the really scary bits of having severe M.E. These symptoms come and go, but often with no warning and can fluctuate in severity. I can find them quite unsettling, but I know that they'll go away again with time, and are usually a sign of me overdoing it. 

The first of these is paralysis. This is a fairly recent addition to the family of ailments that seem to plague my body, but in the short time it's been around, it's already made a bad impression. Most of the time it's just my legs but sometimes it can be my whole body, speech included. First I get pins and needles and shooting pains. The pain radiates from my neck and spine, down each of my limbs, leaving a trail of tingling as it goes. It doesn't leave, just gets worse; and as it worsens I lose the feeling and the movement there. I don't like it one bit, but it passes, eventually. Sometimes it lasts a few minutes, other times it can take hours. At times it comes on very suddenly with a sudden pain in my head, stomach or chest.

Speaking of chest pains, this is my second scary symptom. I am asthmatic so I have to be careful about these; have to decipher if it's my M.E. or my asthma and take the appropriate action. However, it can be awfully unnerving, I can get short of breath and sometimes it feels like my heart is beating oddly- I think that's called palpitations? I try not to let them worry me, as anxiety obviously makes all the pain worse. It does pass, eventually, but when it's happening it isn't pleasant. I find that breathing exercises can help to settle it a bit, though not all together. Very occasionally, they can result in me collapsing, but thankfully not too often. 

Collapse, that's another one. Sometimes I just get too weak to sit up and just flop sideways onto the bed or off whatever I'm sitting on. I also get acute dizzy and faint spells if I have to sit up for too long, or if I change position too quickly. It's kind of like being travel sick I suppose but about a hundred times worse, as if the vehicle making you travel sick was also spinning and travelling across the hyperspace barrier. Horizontal is the best position for me though sometimes I'm not sure where 'horizontal' is! Today the dizziness has been particularly bad, though that could just be that I've had a very long day and was sick this morning. Some people with M.E. suffer with postural orthostatic tachycardia syndrome, or POTS; symptoms of which include faintness, dizziness and fatigue. I'm unsure whether this could be causing my fainting spells, as the symptoms do fit quite well. 

One thing I really struggle with, is knowing when a symptom is new, or just an M.E. flare up. This can be really difficult with accidents or injuries, as some symptoms that suggest more serious injury, could just be M.E. symptoms. For example, severe headache, brain fog (confusion), nausea and dizziness are all symptoms of a head injury- however, they are also normal symptoms for me. Being able to tell the difference is sometimes very tricky, though I suppose it's better to be safe than sorry.

Take care friends, Alice xxx

© Alice Daley 2013

The light at the end of the Tunnel

I saw this picture on my Facebook feed yesterday, courtesy of Sonjia Galloway, and it inspired memories of my childhood. This is the tunnel at Chirk, it is long, damp and dark. When I was little, it was a regular spot for family walks, usually on a Sunday afternoon. We'd park a little way up in the car park, then walk across the aqueduct- which I never found too scary, though it was high. I quite liked looking down on the tiny sheep dotted in the field below. Then it was time for the tunnel. It opened like a large dark mouth, swallowing up the grey water and the light with it. It made me stop in my toddling tracks, and gaze in awe. The tunnel. It was so long and dark and wet, it echoed, and as my siblings bellowed and squealed, the silence became full of frightening sounds. Most of the time we'd take a torch, and as long as one of my sisters didn't run off with it, it lit up the little path, and for the most part there was a hand rail running alongside. We'd walk for what seemed like hours, and then eventually we'd be bathed in the cool Welsh sunlight once again. 

I think life trials can be a bit like that, like walking along a narrow bumpy path  through a dark, damp tunnel. Sometimes there are scary noises, sometimes the dank water drips right down your neck. And at times, it can be pitch black. You feel like it's never going to end, and you freeze; feet stuck to the ground, can't go forwards, can't go back. Can't see the light because you're so scared you have your eyes closed. Open your eyes. Focus on that tiny splinter of light, far away in the distance. Get up, stand tall, and just take one step. The path will hold under your feet, and if you keep putting one foot forward, you'll get there. The light will get brighter and bigger as you walk, closer and closer to the exit. The handrail; your friends and family, those who support you, will guide you forward, making sure you are secure and safe. And when you take that glorious step out into the sunshine, treasure it. Let it bathe you in its warmth, it's beautiful warmth. You might want to run or dance or sing in the light, because you've been stuck in the dark for so long. And you never know, around the next bend there might be another tunnel, but you know you can get through it, because you've been through the last one. You can turn back, and shout to the others still in the tunnel, that it's okay because there's a way through, and they'll get through too.

So, have hope, have faith, there is light at the end of the tunnel.

© Alice Daley 2013

A Band-aid on a Bullet Wound (part one)

Hello Friends, 

I'm here today to talk about the approach of the NHS on M.E. patients. I personally think that it's utterly ridiculous, inadequate and it makes me really angry. I went to the doctors today, and although he was more helpful, and finally agrees that I have a physical illness with some mental/emotional symptoms rather than a mental illness with physical symptoms. Which I consider a massive breakthrough. He wants to speak to the 'Enablement Team' where my occupational therapist is based, as she has a better picture of my condition than he does, which is fair enough. He is going to wait before trying any new pain killers as he thinks 'pain-modifiers' may be more effective. 

The term 'chronic fatigue syndrome' is the first thing I want to flag up. This umbrella term for several illnesses where persistent fatigue is one of (but nowhere near the only) the symptoms. Since the term came into common use by medical professionals, people with myalgic encephalomyelitis (M.E.) have been mistreated, misdiagnosed and even tortured in some cases, because of the apparent confusion between the terms M.E. and CFS. The problem with the term CFS is that it's like calling Alzheimer's 'chronic forgetfulness syndrome,' it's naming an illness, or group of illnesses after one of it's main symptoms, not taking into account the organic properties and many other, disabling symptoms. M.E. is a distinct neurological illness, rather than a medically unexplained fatigue state; as is portrayed by the term CFS. This bogus category doesn't just affect those with M.E. though; anyone who's had the misdiagnosis of CFS will be mistreated; people with MS, cancer, and many other illnesses where fatigue is one of the predominant symptoms. M.E. is to fatigue, what a nuclear bomb is to a match. 

When someone with M.E. is misdiagnosed as having CFS, the treatment (or lack thereof) they receive is inappropriate  and makes them a lot more ill, in some cases causing death. The two main treatments for CFS in this country are graded exercise therapy and cognitive behavioural therapy. Graded exercise therapy focuses on increasing the activity one does over time, regardless of your relapses, M.E. symptoms and limitations. Cognitive behavioural therapy focuses on changing your thought processes in order to 'break the negative cycle.' The problem with CBT is that it gives the impression that M.E. is a psychiatric illness, and that patients need to 'snap out of it.' I will write a more detailed blog post about how damaging CBT is to M.E. patients. 

I am too fatigued to finish this post, but I will write a part two when I have the energy.
Love, Alice xxxx

With thanks to The Hummingbird foundation for M.E. and Giles Meehan, their videos helped me write this.
© Alice Daley 2013