The Difference Good Carers Make

Hello there,

Yes it's been AGES since I last blogged, but I've been vlogging. Will stick a cheeky link in to the vlogs and my Youtube Channel.

So much has happened and I'll maybe post writing about it but probably won't because it's tiring and stressful. But I have something I really feel I need to write about. And that's good carers. I strongly believe that caring isn't a profession someone should go into because they need a job or money. Caring is a very sensitive and responsible role, and should be taken very seriously.

Over the last 4 years I've had a fair few different care agencies and probably over 100 different carers. Over the last week or so, a new care agency and carers have changed my life. And I'm not exaggerating in the slightest, they have changed my life for the better so much. My attitude to care the last few months have been dreading my care calls, going without just to get carers to leave early, and forcing myself to do way more than I have the energy to.

Now I know I can expect my carers at the times they say, I will only ever see one of three people (sometimes two of them) and I feel 100% safe and comfortable with them. I don't mean 99%, I mean 100% where I don't have to hold back anything. Where I can be myself, talk to my carers like old friends, whilst also having high quality care, executed to the best standard.

I have carers that go more than the extra mile, carers that care holistically about my well being, physical, mental, emotional, spiritual etc. Carers that don't clock off at the end of a long shift and forget you exist. Carers that are happy to be on call 24/7, but know where to draw the boundaries.

Quality care, executed not only with paramount standards, but with a laugh and a joke too. Carers that want to know who I am, that want to hear my story, and that want to share their lives and stories with me. Carers that are assertive and can advocate on my behalf, carers that truly know what it is to care.

I'm so incredibly grateful for them, and they honestly mean the world to me. I can say with confidence that my new carers have saved my life. Thank you Sarah, Dani and Abi from SLR Care.

Alley x

© Alice Daley 2016

A Place to Start

I’m at a point now where I either feel suicidal or I feel nothing at all. I feel like I’m drowning but I don’t have the willpower to try to swim. I’m overwhelmed and exhausted, but I don’t have the strength to put a stop to my miserable existence. So I’m stuck in this limbo like some sort of lost solider, tripping over the barbed wire of no man’s land, looking for a way out. Stumbling aimlessly around, trying to make sense of the world. I feel like a useless friend as I don’t have the energy to take an interest in the lives of others, even though I want to. I expect people to read my miserable ramblings but don’t have the energy or inclination to read their well written, witty, insightful and intelligent pieces. I let everyone down on a daily basis. I’m so wrapped up in my own world that I can’t cope trying to interact with people and situations I can’t control. My anxiety is paralysing in the way a rabbit caught in the headlights is stricken with fear. My depression is paralysing in the way a heavy blanket presses down on your whole body, and each movement feels like you’re trying to move through concrete. Mentally I flit from panic to catatonic and back again. Nothing makes me feel alive anymore. Even when I know there are urgent matters to be attended to, I cannot stir myself from my lethargy.

The most difficult thing about this is that I have a Chronic Illness which is characterised by lack of energy. Most of the time the most simple thing is exhausting, but these days I can’t tell whether it’s due to my depression, my Myalgic Encephalomyelitis or a combination of the two. I expect the latter, but it’s so hard not knowing whether I need to rest due to being physically unwell, or I need to push myself to do something due to being mentally unwell. I want to lead an active lifestyle; that are the most frustrating thing; I want to be a normal, functioning member of society. But I’m not. I’m chronically sick, and mentally ill, and every second of every day is a battle to survive for me. I don’t like being thought of as lazy or unmotivated because that’s the exact opposite of who I am. I’m a driven, motivated, hardworking person who wants nothing more than to be able to be fully on top of every aspect of my life.

I’m a control freak, and this is evident when I can’t accept help with things. Because I know if I do something myself, it will definitely be right. This way, I refuse help and exhaust myself, actually creating more work and stress for everyone in the meantime. My social skills are pretty much none existent and the thought of actually trying to get better at those skills is petrifying because it feels totally unattainable. My ASD traits have become so much more pronounced, and it’s so hard to even fake being relatively normal these days. I want to go out and not have a panic attack because I’m by myself in the middle of a shop. I want to cope with a bus being late without having a meltdown. I want to cope with plans changing without instantly assuming the person changing the plans hates me. I want to be less self-absorbed and more outward looking. I want to be better.

And that’s a great place for me to start. I want to be better. I have no idea how I’m going to do it, but at least I have that passion and drive to actually want to improve. I’m not sure how I’ll go about it, and I’m exhausted even thinking about all the work I’m going to have to put into becoming a better person. But I’m willing to try, and I think that is the first step. I’m going to do my absolute best to be better at life. There will be days when all I can do is cry and become a duvet burrito, and that’s okay. But there will also be days when the small victories will pay off and I’ll be overjoyed with how far I’ve come. I’m going to give it my all, and that’s all I can do.

© Alice Daley 2015

Happiness

Honestly, I think right now I am happier than I have ever been before in my life. I don't mean in the moment happiness, that comes and goes as quick as the wind changes. But widespread happiness, that seeps into every little corner of my little life. Joy. Happiness that isn't based on circumstance or health or situation. But let's say it was...

I have a best friend for the first time in a long time, someone who is my absolute soul sibling. I couldn't imagine my life without them, and they keep me going when times get tough. Although we met online through a mutual fandom, we have met in real life now a few times, and each time we meet we get closer. I can tell them anything, and have even imposed my love of hamsters onto them! We have been through an awful lot of bad stuff together, and kept each other going throughout. It's the first relationship I've had where things feel mutually dependant and it's awesome, as I never thought I'd have another best friend.

I have salvaged a relationship that meant a lot to me from tatters. The relationship had become unhealthy for both parties and took an unexpected turn at the end of the summer when both of us had breakdowns. Now our friendship is back on track and so much healthier than before, and the weight of caring for me has been lifted from one person's shoulders, and spread across a larger range of people. I had an amazing day with them today, and I was so happy that our friendship was strong enough to survive what we went through. This person knows me inside out and back to front, has cared for me for many years, puts up with my silly antics and is just generally my favourite butthead.

Not to mention my amazing animal rescue buddy and fellow spoonie, who although I have only met a handful of times, is one of my closest friends. This person grieves with me, laughs with me, cries with me, and gets stupidly excited about little things with me. They have been there on many a pain-filled sleepless night, or stayed up with me whilst I nursed a sick animal, and I've done the same for them. They have shaped my life in ways they don't even know, and I'm so blessed to have them.

I have a group of amazing friends around me, every time I log into messenger there's a message waiting for me or someone online to talk to. I have my crazy animal friends and fellow animal group admins, I have my amazing and inspiring spoonie friends, I have miscellaneous friends I've picked up on my journey, and they're all absolutely amazing. Friends I've lived with, friends who've picked up the pieces after I've fallen apart. Friends who send me cute animal pictures when I'm down, just friends. Friends are an alien concept to me and initially I was suspicious that they were all just an elaborate ruse to pick on me. I love you all so much.

I am living with an amazing family who love me so much and I love them. It's a hectic house full of people and animals and kids and stuff, and I love it. Each member of the family makes me smile, from the smallest to the oldest. I feel so welcome and loved here, and being here is helping me adjust to living in community successfully. Yes there have been many failures and difficulties, but instead of just kicking me out at the first sign of difficulty, they have supported me to overcome the problems that I struggle with. I don't know what I'd do without them.

That brings me onto my church family. I am delighted to be back in a church after a horrible experience in a different church which put me off the idea for many months. Church family is so amazing, it helps me feel loved and valued, it helps me practically when I need it, and it brings me closer to God.

As well as this, my relationships with my blood family are the strongest they've ever been, I can have conversations with my parents without crippling anxiety. I am better at staying in touch with my sisters and no longer dread seeing my brother. I love my nephews and neices to bits, and I'm so glad I've overcome my issues surrounding family, as they all mean so much to me.

I could go on and on about how amazingly blessed I feel. I could write reams and reams all about university, my beloved animals, and much much more. I'm a very blessed individual who needs to spend less time moaning and more time being thankful and grateful for the amazing things in my life.

© Alice Daley 2015

The problem with people

So my friend and I spoke yesterday at great length. And we realised that for all my life, I've been the centre of my world, because it's been me against the world. Animals have replaced people because I haven't had people, and thus my social skills are really immature. This is also a symptom of Aspergers Syndrome, which I am waiting for an official diagnosis of.

I guess the difference now is that I do have people, I live in a house with 10 other people, and I've become part of their family. But I'm not used to this, I'm not used to people, and social interaction. And they're not used to someone who doesn't understand social interaction.

For example, people have noticed I don't really talk to people unless I'm asking for something, and I talk about myself a lot. Until this was pointed out I had no idea.. So I am making an effort not to do that, but it's really hard, especially with depression and anxiety, because your own thoughts seem to consume you most of the time.

I understand that I need to be more outward looking than inward looking. And I am learning, slowly but surely to do this. However it's going to be a slow process, and I will slip up, but I'm trying, I really am.

And I don't think people realise what's going on behind the scenes. My anxiety is such that much of the time, I'm too scared to leave my room. This means I only tend to if I need something, which gives the impression I only come out to ask for things, which is true in part. But the other side to this is that I need a lot more than most people, especially most people my age. I would say my needs are similar to a small child, in terms of security, understanding, compassion, physical assistance, and mental reassurance. Every activity of every day is a struggle for me; eating, washing, dressing and so on. Sometimes even going to the toilet takes so much energy that I have to sleep it off for a few hours. I spend a lot of time in my bed, asleep or resting, but this feels so unsociable.

Another thing I've noticed is that I'm much less tolerant than most of the people here, especially when it comes to noise and small children. But this is not me being difficult or purposely intolerant, it's called Sensory Overload. I struggle to cope with a lot of sounds, and they make me feel upset or anxious. So if there's a lot of sounds, or other sensory stimuli that I can't cope with, I isolate myself.

This is also a result of hypersensitivity. It's one of the symptoms of M.E. and I really do struggle with it. I try to be social, but spending time in a social space is exhausting for me, as there's always noise and other stimuli.

I know that I need to learn to cope better with these things, and I am trying incredibly hard, but it's going to be a long slog. I want to be able to cope better, and to interact better with people, but I don't think many people really appreciate how hard it is.

But I also understand that it must be hard for those around me. I don't feel safe when I'm not in control, and a lot of the time, when there's people involved, I'm not in control. This means that I come across as needy, irritable, intolerant, and generally an annoying person to try to interact with. And I get how hard that is. I'm a closed book a lot of the time, and it used to be a defence mechanism. Even though I know now there's nothing to defend against, the remains of my past life still cling. I am still guarded, I am still constantly imagining everyone to be against me, and I am still broken.

I'm in the process of learning to heal, and learning that actually I can cope with people and social interaction. That not every conversation has to be fraught with anxiety and therefore filled with self-centred babble. I am having to learn how to be a person.

I know that I'll get there, and I want to keep trying, but I just wanted to acknowledge how difficult these simple things are for me.

I hope if you're going through similar things, that you will join me on my journey to a better understanding of the world and the people in it.

© Alice Daley 2015

Wheelchairs, Seizures and Accidentally Angering Gorillas

Ready yourself for a slightly longer post than usual, I had a lot to say...

When you see me in the street, pootling along in Wilbur, my electric wheelchair, you might wonder to yourself “What’s wrong with her?” You might especially wonder this if you see me stand up, with help, and go into a shop (if it’s particularly tight, I can’t get around in the wheelchair.)

Disabled people are expected to be what others expect them to be… if you use a wheelchair, it’s expected that you’re paralysed and cannot walk at all. This is not always the case; there are many wheelchair users who may be able to stand for transfers, or walk a little way. Some may even be able to walk on their better days, but need to use a wheelchair for their worse days. Some may be temporary wheelchair users due to sickness or injury. Everyone has a story behind why they need to use a wheelchair, and each person’s story is as valid as another.

I want to tell you my story, in the light of what’s happened in the last few days. I've been really sick, and oddly, I write better when I'm really sick (in the patches when I'm well enough to write, that is.) I've been in the Local Accident and Emergency Department with an increased number of seizures, and last night the paramedics were called due to me having more seizures, which I didn't regain consciousness between, and which got longer and longer. After deciding that another trip to A&E would cause me to become more ill, the paramedics agreed that I should stay at home, with the people around me keeping a close eye on me. I slept solidly for a few hours, as is common after seizures, and then awoke to a night of torment. It is 6:42am as I'm writing this and I've been awake since around 2:00am in severe pain, with muscle spasms, nausea, dizziness, fever, night sweats; the works. Thankfully my friend David gets up around 6:00am for work, and therefore was able to give me some morphine not too long ago, which has made things a little more bearable.

The thing that’s flung me into this latest relapse? Simply that I just wanted to feel normal for once, I wanted to help out around the house, and I wanted to have fun. I didn't climb a mountain or host a disco, or even try to be completely normal (I still used Wilbur to help me get around,) but I just did a little more than spending each day in bed or on the sofa. I helped to cook dinner, to serve my friends, to look after my friend’s little boy Tom who is 4 ½ and absolutely adorable. Nothing big, but enough to wreak havoc on my body. I don’t know how long it’s going to take me to recover from this relapse, I don’t know if I'm going to be able to start college on Tuesday, or even at all. From a few simple days of trying to have a life again, my whole future hangs in the balance, and I'm scared.

My Gorilla is unpredictable, sometimes I don't even know what's made him angry. I never intend to anger him, but sometimes I have so much fun that I forget to accommodate him and this makes him angry. Sometimes his rage comes straight away, and other times he seems to bottle it up until he explodes into a terrible tantrum. He'll beat me and throw me across the room, he'll dance a jig on my back whilst I'm asleep, he'll trip me or push me to the ground, or shake me violently. The only way to placate him when he gets like this is to lie in bed with him and rest. He is like a petulant child who won't sleep unless you lie down with them, and then, just as you think he's dropped off and you start getting up to leave the room, he wakes up and demands you stay there with him. Even when I give in to him and go to bed, he will still find ways to hurt me, he might wrench my joints so they feel awkward and uncomfortable, or set my skin alight as I burn up into a fever. Perhaps he will sit on my legs until they become numb and partially paralysed, or maybe he will delight in using my head as a punch-bag until I'm sick. The fact of the matter is, if I ignore the Gorilla, he gets very angry indeed. Whereas daily Gorilla management by way of adequate rest, tends to mean he's less malicious for the most part. Gorilla taming tip of the day; don't pretend you don't have a Gorilla and ignore him.

It wasn't meant to be like this. By now I should be halfway through a degree, or training with the horses, or getting married. Every day I feel a sense of deep loss, of what this illness has bereft me of. I cry my heart out because I am heartbroken by my broken body, and I know that as a result of this, and other factors, I have a broken mind too. Depression and Anxiety lurk in the background, waiting for me to have a moment of weakness; wearing me down day by day. No matter how hard I try to ‘think positive’ or ‘just get on with it’ or ‘have more faith’ or man up’ or ‘push through it’ or ‘get better,’ things don’t change. And that’s not because I don’t want them to. I wish, with every fibre of my being, that I would recover from this, that I would get my life back, that I would be the person I've wanted to be, that I used to be. I am grieving my old life, my healthy life. The life where I could ride until sunset, study hard, read a book over a weekend, just do things that ‘most anyone my age could do.

But I can’t get hung up on what could have or should have been, on the ‘what if’s’ and ‘if only’s,’ because I have to deal with what I have in front of me. I have to make the best of the hand I've been dealt, and learn to do things differently. I've got to realise that although I want to do everything most 20 year old’s can, that I need to prioritise what’s most important, and schedule rest into my days. I have to tell myself that if I help around the house, but make myself so ill that I need help with everything for weeks, then I've actually created more work that I set out to help with. It’s going to be difficult because I'm a naturally intuitive and helpful person, and I'm so grateful for the people around me, that I just want to say thank you by helping them out, especially as I can always see when things need to be done, and I get agitated if I'm not able to do them. I feel like I'm being lazy, watching or even instructing others to work. It’s not in my nature to sit and do nothing, and so resting for me is incredibly difficult. I think I need to find a TV series that I can get the box set of, so that I can schedule rest for the amount of time an episode is. Obviously sometimes I'm so poorly that watching something is not restful, it’s actually an activity in itself that saps my energy, but I find it near on impossible to rest without anything to do at all, unless I'm asleep. I become restless and agitated, and I start thinking about all the things I should be doing, and begin to feel extremely guilty for resting when there’s work to be done. However, I need to learn to overcome this, as if I don’t listen to my body and rest, I become very ill, which creates more work for everyone in the long run. I guess I need to view resting as a helpful activity which contributes to the household’s well-being, as with proper rest, there should be fewer trips to A&E, less seizures etc.

I use a wheelchair because after a few steps, I am ready to collapse due to weakness, exhaustion, low blood pressure, dizziness, and pain. I know there are some people that will be thinking ‘the more you use the wheelchair the more you’ll need it,’ and I'm sure for some people, that is the case. Over-dependence on walking aids can result in a loss of muscle tone and fitness, which in turn can mean that a person needs to use these walking aids more and more. When I was bed-bound for 9 months, I completely lost my muscle tone and have never really fully regained it. However, I do as much as I can, when I can, to not be dependent on Wilbur. On very rare good days, I might be able to not use him for a simple trip done mostly by car. But on most days, walking more than a few steps at a time around the house will either be impossible due to collapse, or result in very harmful payback such as seizures and/or partial paralysis. It is plausible, that if I were to not use my wheelchair, that I would be able to survive. However, without him, even the simple things would become so very hard. I would probably spend much of my time being bed-bound, and if I used my limited energy just for the process of getting from A to B, once I got there I would be so ill, I wouldn't be able to do whatever I'm supposed to be, and may get stuck there as I wouldn't have the energy or strength to get back. So don’t look down on me because I use a wheelchair despite not being paralysed, wheelchair users are all different, and all have a different story. It’s not up to you, me, or anyone else to judge that person on their level of ‘need’ regarding their wheelchair. I know that 99% of people wouldn't choose to use a wheelchair, I certainly didn't, and the minute life without him becomes a feasible option, he’ll be gone faster than you can say ‘It’s a miracle.’

If you’re a wheelchair user, or use any other aid, and are subject to dirty looks, people making comments that you’re too young to need aids, or even judgement from other people who think their reason for needing something is more valid than yours, I understand. I've been through it and it’s horrible. When it’s strangers on the bus, you can perhaps brush it off as ignorance, but I know what really hurts is when the people you thought would understand the most, ridicule you because of their own hurts and insecurities. If you've experienced this, I just want to tell you that they’re wrong. I know that you’d never in a million years choose to be sick, or to need a wheelchair or other aid. They have no right to judge you unless they've lived your life, and even then they shouldn't judge you. We spoonies have enough people up against us without us lashing out at each other with judgement and harshness. There should never be any one-upping along the lines of ‘I'm sicker than you.’ It’s unhelpful, it’s childish, and it achieves nothing except making people look like muppets. We should support one another, and care about each other, send messages of love and encouragement rather than ones of spitefulness and hatred. And if you've been subjected to this kind of judgement and bullying from anyone, my heart goes out to you. If someone is going to treat you in that way, you don’t need that kind of negativity in your life, especially if you’re chronically ill. You don’t need to waste your spoons on people who think you’re a malingerer or a liar. Your experiences are valid, I love you and I believe you, hang on in there, you brave, strong little beans.

Alley-Cat xxx

© Alice Daley 2015

A letter to those of you who are healthy (and to everyone else...)

To those of you who are healthy (and to everyone else),

Be kind to your body, don't fill it with toxic substances or unhealthy food. Be grateful for your body, and don't ever abuse it or take it for granted. Go outside as much as possible, drink in nature, run, laugh and shout. Dance in the rain, skip without checking that nobody's looking. Do everything you set your heart on, travel to new and exciting places, spend time with the people who matter. If you've always wanted to learn to kayak, or have plans to go camping with your pals, do it! Squeeze every last drop of vigour out of life, live each moment to the fullest.

Call a friend you've not seen for a while, plan something fun with them and do it. Don't spend the entire time texting other people, enjoy the company that you're in. Aside from the obligatory selfie, just revel in spending time with another human being who is as exciting and intricate as yourself. Laugh together until your bellies hurt, make memories worth having.

Decide to learn something new, a new talent, skill, even a new language. Drink in as much knowledge as possible, and enjoy the process of learning. Meet others who want to learn about the same thing, those with a common interest, and talk to them. Once you've started learning, practice, and then as you get better, show off! Not in an arrogant way, but make sure you're not one of those people who knows how to do something but never does. You're an incredible being, and your brain is so unique and amazing, use it.

Explore nature, even just in the area around where you live. Go to your local park, or even get on a bus, and get off when you see somewhere suitably interesting. Discover birds nests, learn what animals are local to where you live, learn the names of plants and birds, appreciate what a beautiful place this world is. Breathe in the fresh air, take in the smells of manure, cut grass, and pine forests, enjoy the freedom that you can only feel when outside.

Forgive people. Life's too short to hold grudges against people; try not to make any enemies. You'll never get along with everyone, but try, as best you can, to live at peace with everyone. Don't base your values on what you hate, but on what you love, be kind to those you meet, and where you can, spare a little of what you have for those who do not have as much as you. Do beautiful things with beautiful people, and appreciate everyone around you, from the bored looking girl at the supermarket checkout, to the doctor who might one day save your life, they all have their part to play in this, the ultimate ecosystem.

Do these things for yourself, but more than this, do them for people like me who yearn for days, weeks, or in some cases years to be well enough to go outside. Who end up in tears because they can't help those around them with simple things like doing the washing up. Some of us don't know what it is to be well; we were born sick... I can't speak for that portion of us, but I can imagine they've spent their whole lives longing to be able to do what you can do. For some of us, we remember our old selves, almost as another person. We remember being like you, but we feel a sense of loss when we think of ourselves back then. We desperately want to be well again, and our hearts are broken on a daily basis when we remember how much we can't do.

Do these things for me. Use your legs to climb mountains, because mine can barely climb out of bed. Use your arms to hug those you love, because mine struggle to hold a knife and fork. Use your eyes to appreciate the beauty of nature, or to read a good book, because after a few lines of reading my vision goes blurry. Use your brain to learn and drink in knowledge, because I often struggle to even string a sentence together. Use your body to make this world a better place, because I need some allies in my quest with working bodies. I'm asking this of you, because whilst I'm sick, I need you to live my adventures for me, and maybe one day I'll be well again, and we can go on adventures together.

I love you
Alley-Cat xxx

© Alice Daley 2015

Some thoughts on Self-Harm

A blank screen can be really daunting, which is why I’d like to just ramble for a little while, and tell you about some of the changes in my life. I've now moved in with my friends the Scott’s who are a family of 11; it’s an amazing environment full of mad people and animals. I’d been staying with them for a while and they then asked if I’d like to live with them. After weighing up the pros and cons of both living in a family environment and living alone in my bungalow, the decision was pretty obvious. Being surrounded by Christians in a safe environment has done wonders for both my physical and mental health.

Talking of mental health, I had a bit of a blip a few weeks ago and attempted suicide twice in a fortnight. Both times I recovered well and I'm now on the road to recovery, with a lot of help and support from those around me. Today I want to talk to you about self-harm, and so if you’re easily triggered by such matters, I suggest you don’t read this post.

I was trying to describe self-harm to a friend of mine a while back. I thought long and hard and eventually decided that he (self-harm) wasn't like a playground bully, who pushed you over and stole your lunch money. He was more like a two faced friend who manipulated you into doing things you don’t want to do. One day, he will act like your best friend, and then the next day perhaps he would ask you to do something you’re uncomfortable with. But, because you don’t want to lose the friendship, you go along with it, and before you know it, he has complete control of you. You might not recognise or realise that he’s using you like a puppet on strings, but you have a feeling something’s not quite right. You feel like you’re in too deep, and if you upset the balance now, the whole world will come crashing down. It’s just easier to do as he says. You feel like he is just a part of your life now, and imagining life without him seems impossible, and just when you feel you can cut the ties, he entices you back in with false promises and lies. You feel like a fly trapped in a spider’s web, pushed into a corner with no escape, you become resigned to the fact that self-harm will always be there in the background, around every corner, waiting for you. You start to kid yourself with thoughts like ‘If I was in a different job, self-harm would leave,’ or ‘If I had the car I wanted, self-harm would leave,’ or ‘If only I was a stronger person, self-harm would leave.’ You start hoping for your circumstances to change, and sometimes they do change for the better, yet he remains with you, your constant companion; your addiction. You might try to get away from him, run away, hide away, and you might be successful, but you feel like one wrong move, one throwaway comment from someone, one dirty look, and he’ll be right beside you again, luring you into his traps, undoing all your hard work. You begin to feel like you've got no hope. You feel powerless, helpless, and hopeless.

I'm writing this to tell you that there is hope. It might not seem like it at the moment, but I believe in you with every part of my being. Self-harm is still a part of my life, I'm not saying this from a position of authority or superiority, simply as someone who is going through what you’re going through. Someone who is starting the process of recovery, with the help from a whole bunch of people, someone who is saying we’re in this together. I believe we can, little by little, live without self-harm in our lives. I believe that, with the right support from those around us, we can look forward to a life of freedom ahead of us. I believe that my Jesus will help me to live life to the full, as it says in John 8:36 ‘If the Son sets you free, you will be free indeed.’ I wouldn't feel right writing this post without a bit of input with regards to my faith and how much it’s helped me with the underlying issues that have caused my self-harm. I believe that God hand crafted my body, that I am fearfully and wonderfully made, and so to harm what he made, what he gave me, is insulting and ungrateful. If you made the person you love most in all the world a gift, spent a lot of time, energy and effort on it, poured love and care into it, and you saw them deliberately damage or break it, how would that make you feel? It breaks God’s heart when I hurt my body, and I know that I should look after it.

You are amazing, you are strong, and I believe you can do this. Self-harm is a really difficult issue, but it’s not impossible. I'm on this journey with you, and I believe you can do this. I love you all so much, and the thought that any of you would feel so unhappy you’d want to hurt yourself makes me just want to hug you and never let you. Stay strong you lovely, lovely beans, and hold on with me. Together, we can make self-harm a thing of our past.

Alley-Cat xxx 

© Alice Daley 2015

She

I've written little pieces about four of my friends who also have M.E. and who inspire me every day:

She speaks with her brush, her hands steady though her heart is trembling. The pain behind those quiet eyes is intense, yet what she creates is beautiful. Every day is a day on the battlefield against her body, yet she fights every day with such grace. She is a tree-fairy, a girl of the forest; she steps lightly amongst her friends. They know what it is to stand like a stone, battling the elements, shading those weaker than themselves. She is the whisper in the wind, the colour in the sky, the laughter of children. Her soul pours onto canvas after canvas as it’s such a vast sea of radiance and love. She is full of love, but also full of sickness. Each hour is fought with bravery, each paralysis terrifying, each day a victory. She is a beautiful soul, who shares the beauty within herself with many with her brush.

She is a feather, dancing in the wind, clinging to the trees, laughing with the breeze. She is a brave knight who fights her dragons every day; she is fiercely courageous yet quietly gentle. She is the sun kissed hair of children; she is paw prints in the show. Her pain is indescribable, her loss immense, her suffering tragic. Yet her life consists of making others smile, showing those dear to her that she thinks of them often. Her imagination is another realm; it is exciting and full of adventure. Her dream world sometimes leaks through to this one, in glimpses of beauty and love. She is a beautiful soul, a child of the earth and the sky, and whenever you see a feather, she is with you in spirit.

She is a mad cat lady, she’s funny and kind and sends people cards, she gives away old possessions for free and likes to wear clothes from Nomads. She’s gentle and loving, but she’s still got the spark of her punk days twinkling in her eyes. She’s adventurous and inventive; she creates beautiful crafts, and heart tugging music. She isn’t afraid to be honest about what this illness has done to her, she’s brave and funny and an amazing friend. She’s down to earth and yet has her head in the clouds; she is loved deeply and widely. She’s not bitter, but accepting, she is nurturing and comforting. She always knows when to let someone know she’s thinking of them by sending them cat stickers.

She is beautiful, she’s brave and she doesn’t know it. She has a house full of creatures that live in the lap of luxury. She’s stronger than she knows and faces this illness daily with a quiet confidence that she will last another day. Although she struggles, like we all do, she always has time to look out for others, and sends happy mail to those she keeps in her thoughts. She’s intelligent and bright, she’s spirited and kind, and she loves all people, and is accepting of all she meets. She’s a joy to know and has the most beautiful smile.

Alley-Cat xx

© Alice Daley 2015

It's only a mug

The one problem I have with my depression is when the smallest thing can trigger me into a downwards spiral of feeling rubbish. Today it was a mug. I know, a mug. Let me begin with an anecdote from my time on a psychiatric ward in Gloucester…

The hospital in Gloucester had a very active occupational therapy department where patients could cook, go to the gym, and learn arts and crafts. One day I was invited to do mug painting and thought I would go along because I had nothing else to do. I decided to make a ‘The Fault in Our Stars’ themed mug and it turned out pretty good. It very quickly became my favourite mug and I used it a lot.

A few months back a friend accidentally dropped my TFiOS mug and broke the handle, he glued it back on but I’m too scared to use it as a mug again in case it breaks. So I decided to buy a couple of new mugs from my friend who makes them. I bought an M.E. mug and an Aspie (Asperger’s Syndrome) mug. The Aspie mug had my name on it and it very quickly became my favourite mug.

Today, whilst putting the washing up away, I noticed it was ruined. Whoever washed it up last must have been a little heavy handed with it and had scratched off most of the design. It wasn’t their fault; they weren’t to know that the design would come off so easily. I’m really gutted.

But the point is that something little like that can really throw me off, it’s put me in a really low mood this evening and that’s not okay. I don’t like the fact that these little things bother me, I don’t want them to, and I’m not consciously letting them bother me, they just do.

Still, it’s only a mug at the end of the day.
Alley-Cat

© Alice Daley 2015

I don't know where to start

So a year has passed since my last blog post and oh my days so much has happened. But I'll fill you in on the basics, if I go into too much detail I'll be here until next year!

So, firstly housing:

• I moved in as a lodger with a Christian family last September. For one reason and another it didn't work out and therefore firstly my mouse, Isaac had to be adopted by my good friend, and then I had to find somewhere to live in January this year.
• So I moved in with my friend Sam, and it was going great until his landlord decided he wanted to sell our house. So by the April I was looking for somewhere to live again!
• Finally, on the 17th April 2015 I moved into my own adapted bungalow! It's in a little sheltered housing complex in a nice village with public transport access to most places I need to go, it's lovely to finally have somewhere I can call home.
  

Secondly, health:

• My health has been very up and down over the last year. 
• In January I made the very difficult decision to purchase an electric wheelchair, as I was finding using my manual wheelchair very difficult. Wilbur Wheelchair has changed my life. I am now much more independent and able to do things.
• Mentally I've been quite unstable, having been passed around between CMHTs and the Crisis Team, I have thankfully avoided another stay on a psychiatric ward. Today I have a meeting with the Crisis Team and the local CMHT for a handover, so that's a really positive step.
• In my adapted bungalow, I've had a lot of equipment to try and make day to day living possible. This includes a hospital bed, a commode, a swivel bather, a raised toilet seat, a Supa kettle (after I severely scalded myself) and some other bits and bobs. It's made things so much more manageable.
• As well as this I've been given 10 hours per week of care, and have employed my close friend Jacob as a Personal Assistant. We're pushing for more hours but it's so great to have some help with the basics.
  

Thirdly. animals:

• Now, I've already said that I had to rehome my Mouse Isaac due to issues with my landlady. Thankfully in my bungalow there are no such issues so I've been able to start a small animal sanctuary.
• I'm full to capacity at the moment with 7 rats, 10 mice, 3 hamsters and 2 outdoor bunnies.
• I will do proper introductions in a different post and I'm thinking about starting a side blog called 'Alley's Animals.'
• I'm also going to be studying a foundation degree in September, in Animal Science with Animal Health Management, so I'm really looking forward to that.

  

  Top Row Left to Right: Emily Mouse, Marley Mouse, Billie Mouse (RIP), Hazel Hamster, Ash Hamster, Ginger Hamster.
  Second Row Left to Right: Kira Mouse, Skye Mouse, Felix Mouse, Jeff Rabbit, Rupert Cat, Dixie Rabbit.
  Third Row Left to Right: Bellatrix Rat, Arwen Rat, Gabby Rat, Tess Rat, Benjy Mouse, Marius Mouse.
  Bottom row Left to Right: Peace Rat, Hope Rat, Joy Rat, Eponine Mouse, Cosette Mouse, Fantine Mouse.

So, I'm going to sign off here for now, but I'm looking forward to starting blogging more regularly again. Lots of love and Toodle Pip,
Alley-Cat xxx

© Alice Daley 2015