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