Another Year, Another Introduction

Hello Hello!

So it's time I tried to restart this blog... again! This time I really hope to be more successful at keeping up to it. In the 6 years I've had this blog, it's had droughts and floods of posts, and I've had times where I've been too sick or uninspired to write. My health is a roller-coaster still, times in hospital seem to loom at every corner, but I'm improving in some ways too. I no longer have a feeding tube, for example. I have less small animals than I used to, but now have 4 wonderful cats. Things have moved on in all our worlds, and that's okay. The passage of time has made me older, wiser and generally sicker.

However I now have excellent support, new equipment, new friends, a closer relationship with my mum and my own adapted bungalow. I've found a lovely local church, and I have a wonderful group of carers who make life so much easier, and despite multiple mental heath issues, I'm content and generally happy with life. I'm not sure what this blog will be about this time around, but I do want to write again; it makes me happy and others seem to enjoy reading my efforts.

Until my next post, have a great day!

AlleyCat xx

© Alice Daley 2018

Autism

I'm going to be talking about my autism in this post and how I feel about it. I was diagnosed with autism in 2016 aged 21 and I'm going to talk about how having a late diagnosis affected me in a few different ways. I was diagnosed with Autism Spectrum Disorder or ASD and in this post I will either refer to it as 'autism' or 'ASD.' I will also refer to 'neurotypicals' which simply means people without autism. I may also talk about 'stimming;' this mean 'self stimulatory behaviour and includes things such as flapping the hands, banging the head or rocking. I also use 'assigned male/female at birth' instead of male or female when talking about certain things relating to people's biological make-up rather than their gender identity; an effort to make sure this post is trans-inclusive (being non-binary myself.) I'm proud to wear the label of 'autistic' and prefer disorder first language (I want to be referred to as an 'autistic person' rather than person first language 'person with autism.') My ASD is an integral part of who I am and I wouldn't be the person I am today without it.

I had a lot of traits of autism growing up; hand flapping, head banging, special interests, struggling socially, connecting more with animals than people etc. I had problems with certain textures and I was bullied badly at both primary and secondary school. I didn't understand how to socialise with neurotypical children and this was a very difficult time for me. I engaged in self-harming behaviours from the age of 12 and still struggle with them to this day. As I understand it, my parents did notice these behavioural difficulties but were unable to put two and two together, as well as not wanting me to have to live under a label. I appreciate this but also feel my childhood could have been different had I been diagnosed earlier. Whether this difference would be positive or not, nobody can know. We are where we are now and that's what we've got to work with. I'm very grateful for my parents and how they brought me up to 'pass' as neurotypical but now I've gotten my diagnosis I don't feel the need to disguise my autism for the comfort or convenience of others.

Bringing me onto my next topic; Applied Behaviour Analysis or ABA. Some schools and practitioners believe in 'treating' autism with this method of therapy. Developed in the 1980s, ABA is based on rewarding 'acceptable' behaviours and training 'unacceptable' behaviours out of children with ASD, in order for them to 'pass' as neurotypical. Some ABA practitioners even claim they can cure autism; which is, of course, impossible. I wasn't given ABA therapy but I do believe it's wrong, or at least, would've been wrong for me. Autism is the essence of who I am, and if it comes along with a bit of hand flapping and certain sensitivities, then so be it. I feel that the focus of ABA is to make the child more acceptable to society, whereas I feel the real issue is making society more accepting of those who are different.

I learned to get by in the world by mimicking others and watching them to work out what was acceptable and what wasn't. I still got it wrong regularly and was seen as the 'weird' kid who didn't understand how to be friends. I got on well with my school work achieving As and A*s at GCSE, but aside from that, school was a miserable place. Even now, though I no longer suppress my autistic characteristics, people regularly tell me that I don't 'look' autistic. I find this a really difficult thing to answer to, as of course I know and see how my autism affects every aspect of my life. I think the traditional 'Rain Man' character of ASD portrayed in the media has a lot to answer for. Autism is a wide spectrum and we're not all like Sheldon Cooper. Those assigned female at birth often have more difficulty getting diagnosed as the traits they show are different and not always as obvious as those assigned male at birth. This is a general rule and in no way how it works for everyone.

ASD has affected my life in lots of ways. Prior to my diagnosis I had several inpatient stays in psychological units with severe depression, self harm and suicidal thoughts and attempts. I was having issues with lights and sound, I was going into my own head for hours on end, sometimes I was completely unresponsive to external stimulus. I couldn't make eye contact and had severe anxiety attacks. I went non-verbal at times and was unable to speak, having to communicate either through gestures or writing things down. I would hit myself all over my body but especially me head and cut myself deeply and I was very distressed when things changed or my routine was disturbed. I took several large overdoses with the intention of ending my life. Having autism alongside other mental health conditions often causes them to be experienced more intensely and severely. Autism provides a great deal of focus and therefore if focussed on self-destructive pathways and behaviours it's harder for someone with autism to break that focus and change their routines and behavioural pathways. From my experience, treatments such as cognitive behavioural therapy don't work as well in those with ASD and this can be a challenge for mental health services. I've also heard that eating disorders are more common in those with autism, due to our perfectionist nature. I had several potential diagnoses queried including personality disorders before finally getting my ASD diagnosis a few months after my most recent admission for mental health in February 2016.

Since my diagnosis, and other improvements in my situation, things have been much better. I still have many traits of autism but they don't have a negative impact on my life as much any more. Autism gives me so much and I love that. It makes me verbose and passionate and focussed and determined. It means that I can organise and schedule and make sure things are done to time. It means I'm deeply empathetic and feel the emotions of others as if they were my own. I'm kind, loyal and compassionate, and I partly have my ASD to thank for that. I still stim and I hate labels in my clothes, I need advance notice when plans change and I can still go non-verbal when anxious. I do have the occasional meltdown and if you want eye contact I'm not the right person. But ask me about hamsters or polymer clay and I can tell you everything you need to know and more. I'm one of the most loving people I've met and I see past people's differences and accept everyone without judgement.

I recently got a tattoo of a puzzle piece celebrating my autism. I might be a bit funky and wiggly around the edges, but there are perfect people out there and in my life who fit right into my wiggles like puzzle pieces do. And for me; that's amazing. The scared little child who had nobody to play with has grown up into an adult who loves their friends and always has someone to talk to or hang out with. I've formed deep friendships (predominantly with other people on the spectrum) and reconnected with family members. I've embraced who I am and let myself be as autistic as I need to be. Gone are the days of embarrassment or shame because I have a stim toy with me or I wear ear defenders. I am Alley; I'm autistic and proud.

AlleyCat xx © Alice Daley 2017

A letter to Bo

'I'd rather end my life than wait any longer'

That was a phrase I wrote today. I'm in a hospital right now and well, it's not been easy. That's not really the ins and outs of this though.

I thought I'd try to just zone out and watch some netflix to just chill my head, which this morning was in a total mess. I watched the last few episodes of The Big Bang Theory, and then I saw 'Bo Burnham's Make Happy' show on the netflix home page.

Now I'd heard the name before, in Charlie's song to Hayley G Hoover 'I know I'm not Bo Burnham but I hope I'll do' so I thought, well if Charlie knows who he is he cannot be that bad.

I was totally blown away with emotion, laughter, tears and all. I found a spirit that despite the shit things going on right now, I could feel comfortable for a little time. I realised that the Arts are responsible for so much, be that Bo Burnham or Stephen Fry or KT Tunstall or any performer and creator out there, most of them have created through some really tough shit. And it's when I feel at my most creative too. Perhaps I'll come off the antidepressants soon, it seems to help my head. Or maybe I just have a few times when I feel like this a year, and something.

I'm a muppet because I'm listening into a phone conversation across the ward, and have lost my train of thought. Basically, I think experiencing the desire to end your life makes you a much more... Rounded person, it gives you the ability to cope with life, in an ironic way.

Thank you so much Bo, a lot of what he says I really resonated with and he's so.. real. Even when he's admitting when he's being fake. I guess I just relate to his muddledness and ability to laugh at himself. My train of thought is being a little weird so I'm gunna listen to the show whilst I type to maybe remind myself what I love about it all.

The main thing is that I have been feeling so down lately and like ending my life, especially given recent circumstances. I'm not well at all and am going to have to rehome the vast majority of my animals.

Listening to Bo Burnham just made me feel much less alone. I think it's kind of that sense that he says all the 'existential crisis'y things that we're thinking. Like he made a point about not understanding the war in the middle east and I was like 'yes thank god it's not just me.'

The other thing was that I guess, he puts things into perspective. I'm really just feeling like I've found a kindred spirit.

'I love the idea of you!'
'Stop participating!'

I guess it's just like, I know that so many people feel so shitty and alone and performers like Bo make us feel like someone else understands. I'm so so grateful and I want to be one of those people.

My health sadly isn't up to caring for many animals any more. I've known this for a while but refused to admit it to myself. Someone once told me 'You can't have this many animals and be as sick as you are.' And they were right. The problem was, that I thought it meant I had to get better. Turns out I had to reduce the animal numbers instead. That's controllable, my health is not.

But I really want to donate a lot of my time and energy to performing like videos and stand up comedy. I guess I've been scared to be a creator of content because I feel like I've got nothing to offer the world. I've been physically, emotionally and mentally burnt out for a long time, and the removal of some of the animals is going to make it much easier to work on the rest of 'me.'

So I guess maybe this is an epiphany. Maybe it's not, maybe tomorrow I'll still feel shit but right now I've got some sweet relief from a really distressing time. I want to write, I want to perform, I want to share my life with people so they know the feeling I felt today. I'm inspired to make the world a better place for people, as well as animals. I want to self care, I want to study, I want to get better, I want to help people feel less shit about their lives.

I absolutely just feel so refreshed and even though I'm still vomiting a lot, feeling rough as hecky. But mentally I have clarity and inspiration that I've not had in a long time. So I'm going to start creating again. I'm not sure what and I'm not making myself stick to a schedule or medium. I'm going to be me, free, and yeah.

So I'm still gunna want to kill myself sometimes, Stephen Fry probably still does, but he creates. He seeks a lot of respite in performing and so do I. I think Bo is the same. I could write reams on his show, which I've watched basically back to back (yay autism) and I might do. But for now, I'm feeling weirdly contented.

Peace and Love

AlleyCat xx © Alice Daley 2016

A is for... About Alley

Hello Folks,

Decided to revive the old blog, and thought it would be good to give you all an update/introduction as to my current situations! I'll also be proposing plans for this blog but don't expect me to stick to them, my health is erratic as ever!

So, the boring stuff first, diagnoses and health issues;

• Autism Spectrum Disorder (also known as ASD or Asperger's Syndrome)
• Clinical Depression (but 145 days self harm free!)
• Generalised Anxiety Disorder
• Myalgic Encephalomyelitis (also known as ME or misdiagnosed as CFS)
• Ehlers-Danlos Syndrome Type 3 (also known as EDS3)
• Asthma
• As yet to be diagnosed Seizures (present as epilepsy tonic-clonic but we've ruled out epilepsy and psychological/somataform conversion disorders)
• Postural Tachycardia Syndrome (verbally diagnosed, awaiting official letter)
• Irritable Bowel Syndrome (again no investigations yet for IBD type stuff)
• Gastrointestinal Issues (awaiting GI consultation)
• Chronic Pain from Riding Accident in 2012 (as well as from ME and EDS)
• Bladder Dysfunction

All this gubbins means I am a 90% wheelchair user (only standing/walking on extremely good days and even then only a few steps) and require carers twice a day to help me with personal care, meal preparation and essentially see to my basic needs. I have a lovely 1 bedroom bungalow with a wet room and level access (once they finally build a proper ramp! Using a temporary one for now.) I have to self-catheterise about 3-4 times a day, as I cannot urinate properly, and am taking a whole bunch of pills, liquids, powders and patches to keep me semi-functional. I have a profiling bed with padded sides, a folding manual wheelchair and a large electric wheelchair that has leg raisers, tilt and recline and much more, and I tend to use that outside of the house (inside the house it's just too big.) I used to be very healthy (aside from EDS stuff which I didn't realise was EDS stuff) young person, so the last four and a half years have taken a lot of adjusting too, but I think I'm there. I also apologise if there's anything missing from this, it's 02:15AM! 

Now, onto some more interesting stuff about me;

• I'm an Animal Science student just going into their second half-year
• I'm asexual and panromantic, meaning I feel little-no sexual attraction to anyone, but romantically I fall in love with anyone of any gender orientation
• I have an amazing sweetheart Robin, we've been together 7 and a half months now, they're incredible and keep me going through the rough times
• I adore the singers KT Tunstall, Mary Lambert, Beth Prior and Kimya Dawson, and I'm so excited to meet KT next weekend!
• I love hippy things- wall hangings, tie dyed stuff, loose clothes, incense etc. My house is filled with all sorts of gorgeous hippy items
• I have 6 nephews and 2 nieces and I love them with all my heart, I'm so lucky to have so many wonderful little people in my life: Ethan, Harvey, Ollie, Rachel, Dylan, Lewis, Aimee and Zachary. Obviously I have siblings, 3 sisters and a brother, all of whom have 2 kids each
• I only live about half an hour away from where I grew up, but I like it here
• I'm so grateful for my friends who always manage to put a smile on my face
• I love painting my nails but I never have the patience to reapply it every few days!
• This year I went to my first Pride Event, and my first Festival in years; LFEST (that's right, it's a bunch of lesbians in a field, what more could you want.
• I'm genderqueer, meaning I identify as non-binary. My pronouns are they/them and although I usually look femme, I can regularly fluctuate between identifying as a guy, a girl, both, or neither. I'm lucky in the sense that it doesn't affect me too badly mentally, thank goodness.
• My sweetheart and I have a running extended metaphor that I'm a mermaid and that's why I can't walk/function so well on land (also in water but that's besides the point.) 
• I like to consider myself a creative person, my Myers Briggs Test results are: INFJ and I'm about 70% Hufflepuff and 30% Ravenclaw (yes I'm that sad) So technically a Huffleclaw. 
• I love Casualty and Holby city, they're my guilty pleasure, but I also love The Great British Bake Off, The Great Pottery Throwdown and other TV shows of that nature, as well as a lot of comedy, panel shows and stuff like DIY SOS, and social/crime documentaries.
• My favourite food is Pizza, and my favourite drink is either Lactofree Chocolate Milk or Red Grape Juice. I love chocolate and cheesecake and all the bad things, but also granny smith apples, berries, salad, peas, sweet potatoes, carrots and lots of other fruit and veg so it balances itself out right? 
• I love hugs but only on my terms, I talk too much and am a little too self-absorbed, I have many flaws but as long as they aren't hurting anyone, that's just me...

So that's all the introductions needed for tonight, I hope to be blogging daily at most and weekly at least, but my health is so erratic I may miss a few days/weeks. I plan on choosing a letter per month and running the full alphabet (will take me just over 2 years) to give me something to strive to achieve.

AlleyCat xx

© Alice Daley 2016

My Sweetheart calls me a Mermaid

So my sweetheart said something really rather poignant the other day. And it's stuck with me:

"You're a mermaid, yeah? Yes, maybe the land isn't the best environment for you and yes that means you need some help with things. But it doesn't mean you're useless!"

Now. There are many different ways I can relate to being a mermaid; I'm a mythical creature with luscious hair and an unhealthy obsession with glitter. But I think the main one is that I feel out of place, all the time. I know that this world isn't quite right for me and I get the feeling I belong somewhere else. That goes for both physically and mentally.

Physically I have the challenges a mermaid would face on land- I struggle to walk, fall a lot, and other unhelpful things. I need a wheelchair to get around pretty much full time now, and sometimes I can't even get out of bed to use that. Imagine having been suspended in water your whole life and you emerge into the air and you feel totally off balance and wobbly because it's so different. That's what it feels like in my body. I feel constantly unsteady, dizzy, out of it. Yes I can hold an articulate conversation but you can bet your butt I am concentrating on speaking like crazy.

Mentally I have different challenges. You see, mermaid culture is so different from human culture; we were never taught social norms or niceties, we engage in deep talk, not small talk. Humans are scary and complex and very difficult to handle; they're easy to upset and hard to trust. And it's not that I, as a mermaid, am purposely doing things to upset people, I'm just trying to find my way in a world of legs and clothes other than clam bras.

This post I realise is kinda crazy but hey, it's 4:20am and I feel like writing.

Alley-Cat



© Alice Daley 2016

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