Posted on December 20, 2017
Last week I got to take part in another Autism research study. I’ve done a couple of these before but that was before I was writing this blog and I just haven’t got around to writing them up. So far I’ve done two at Kent University; the second one involved seeing my brain waves, which was really cool (although the saline gel that made it easier to pick up my brain waves was not cool – it was gross). This one was at Sussex University and focussed on how people see, process, and remember colour. I was really excited about it since I seem to be very sensitive and responsive to colour. And even though I’ve been really struggling with my energy, I had a really good time.
I was there for about three hours. To begin with, I did a couple of tasks to assess my colour vision and a couple of Autism questionnaires. And later on I did an IQ test. These tasks aren’t used for a clinical evaluation but to provide quantitative scores so that you can compare all the data in the study. This makes the research more reliable because you’re not, for example, comparing two people with vastly different abilities. I’m not massively into IQ tests as an idea – my Psychology teacher used to say that the only thing a high IQ proves is that you’re good at IQ tests – but I did get a great deal of satisfaction out of completing one of the tasks that I’ve previously never been able to do.
The main part of the session was devoted to several different tasks involving colour. One had me putting names to different coloured squares of card, another involved manipulating the colours in various images to turn them grey, and a third required me to repeatedly choose which of two squares was bluer. When we were done, all of these tests were explained to me, what each one showed and how they would draw their conclusions. Had I not fallen in love with songwriting, I probably would’ve done Psychology at university and it’s something that I’ve really missed so I geeked out over it. It was really fun.
I get so much out of doing these research studies. It feels so good to use my Autism for something positive when most of the time, it’s something that I struggle against. I’m still wrestling with how that discovery has changed my life so to be able to channel it into something that will help people helps me. The other reason I like doing these is because all that’s required of me is to be myself as an Autistic person. I don’t have to moderate my behaviour, consciously or unconsciously, and that is so freeing. It’s also kind of empowering: it reminds me that I’m a productive person who can contribute, that I’m not less because I’m Autistic, that I can do good. It’s easy to forget that when you’re struggling with something overwhelming.
So it was a good day. I definitely recommend getting involved with these sorts of projects if you can. I often hear about them through my local Autism charities so search out the ones near your location if you’re interested!
Posted on December 16, 2017
Since I’m a songwriter first, last, and always, I thought I’d pull together some of my favourite songs this year as a sort of send off for 2017. So here goes, in no particular order:
- Sideways by Travis Meadows
I first heard this song last year when I went to Nashville for the first time (but it came out this year and I’ve played it a lot since then). I was there for the Tin Pan South songwriting festival and there were so many shows to go to but someone told me that, out of everybody there, I had to see Travis Meadows. So I did and I was blown away. In my opinion, he’s one of the greatest songwriters out there and I was transfixed by every song, as was everyone else in the room. And when I went back to Nashville this year, I made sure to get to his show. The chorus of this song speaks to me so deeply. You push something down and it comes out in ways you never expected and bitter thoughts do carve highways in the person you’re trying to become.
If I could buy myself a conscience that wasn’t broken
Mend every fence I drove my hard head through
Re-lock all the doors I wish I never opened
Unlearn the things I wish I never knew
And it came out through the bottle
It came out through my fists
It came out way too early
I wish it never did
Push it down, it comes out sideways
Push it down, it comes out sideways
Bitter roads turn into highways
Push it down it comes out sideways
- Hurt Any Less by Lauren Aquilina
This is another song that came out last year but I didn’t get around to listening to it until this year. During my teenage years Lauren Aquilina was one of my most listened to artists but that was a really tough time and I wasn’t super eager to jump back into all those associated emotions. I planned to listen to her album eventually; I was just waiting until I felt ready. And then I found out that she was playing a songwriters’ circle at my uni, the same one I was scheduled to play. It felt like the universe was telling me something so I listened to the album and fell in love. It sounds like the whole thing was written about the same person in one evening, to me at least. I love it. I love every song but I really love this one. Just because you’re doing the right thing doesn’t mean it doesn’t hurt. Also, I’m a sucker for half time drums. Since hearing this song for the first time, I’ve met Lauren, played a songwriters’ circle with her, and written a song with her, and she is as lovely as I’d hoped she’d be.
People break each other’s hearts
In their individual ways
You broke mine clean in half
When you let me stay
You made me feel so exposed
Asked for the feelings I held close
And I gave them away
I knew this was coming from day one
This was never love, it was chaos
I was right, but I’ve never wanted to be so wrong
- Nothin’ New by Kalie Shorr
I loved this song from the moment I heard it. It was the song I didn’t know I needed. Moving on is hard but songs like this one make it easier. Kalie is super sweet and played it for me when I finally made it to a Song Suffragettes’ show in Nashville. That meant a lot to me. I’ve managed to get to a couple of their shows now and they’re all amazing songwriters. I can’t wait to go back.
Sun’s always gonna set in the west
Lipsticks and convertibles look better in red
And the best songs are three chords and the truth
But that ain’t nothin’ new
‘Cause ever since the beginning
Since the world started spinning, oh
It’s just a matter of fact
Girls want boys that don’t want them back
I’m just being honest, don’t matter what you call it, oh
The sun still shines, the sky’s still blue
You don’t want me, and I love you
But that ain’t nothin’ new
That ain’t nothin’ new
- Second Wind by Maren Morris
I know this song came out last year but it’s been on repeat all year; me and my writing partner listened to this album in so many sessions, for inspiration and just because we love it. I saw her perform three times this year, at Country2Country and twice on her UK tour, and she was absolutely incredible. I even got to meet her and she is so, so lovely. She is one of my favourite songwriters and one of my favourite singers, probably ever. This is a song I listen to when I need a boost and it delivers every time.
An airplane’s only paper ’til it finds a breeze
But don’t you know that it’s the low that makes the high so sweet?
When they try to break, break, break you
That’s when you get your break, break, breakthrough
You can’t forget about me
While you weren’t lookin’ I was gettin’ even higher
Say what you want about me
Your words are gasoline on my fire
You can hate me, underestimate me
Do what you do cause what you do don’t phase me
Just when you think I’m at the end
Any second I’ma catch my second wind
- This Town Still Talks About You by Natalie Hemby
When Natalie announced she was releasing an album, I literally shrieked. I was so excited and the album exceeded all my expectations. It reminds me of hazy summers and nostalgia and Nashville. I was listening to it as I flew in when I went back in March and it’s now forever tied to those memories. I got to see her play a songwriters’ round while I was there and she played this song. I also got to meet her afterwards; she signed my songwriting book and I got to tell her that she is one of the songwriters I most want to write with one day. I’m heading back to Nashville in March… A girl can dream.
Oh, this town still talks about you
Like you never left
Hidden sounds in cracked sidewalks and the church pews
How could we forget?
You were so loved, you were one of our own
And it’s never been the same since you’ve been gone
Oh, this town still talks about you
- Devil In Me by Halsey
I loved the Badlands album so I was so excited for Hopeless Fountain Kingdom. It took me a while to get into the latter but I think that’s because there’s just so much in it; I was completely overwhelmed to start with. I think it’s the kind of album that you have to immerse yourself in to get the best listening experience. I love the rawness of the emotion in this song and some of the lyrics cut so deep. Because the production is so layered and so all encompassing in many of her songs, I think that people sometimes forget or get distracted from what a great songwriter she is; even the songs that I would call my least favourites on the album – emotionally, stylistically, whatever – still have my songwriter brain going, “That’s so cool! That’s so clever!” I love the way she uses little details to create such vivid pictures.
You said I’m
Too much to handle
You said I
Shine too bright
I burnt the candle
Flew too high
Gotta wake up, gotta wake up
Gotta wake up, gotta wake up
Gotta wake up, come back to life
Gotta wake up, gotta wake up
Gotta wake up, gotta wake up
Gotta wake up, come back to life
- Someone You Couldn’t Love by Charlotte Black
Charlotte is one of my very best friends in the world and she’s an awesome singersongwriter so there was no way I wouldn’t include one of her songs in this list. She’s released two singles this year and there’s another one in the works but this one holds special memories for me. I remember sitting in her room in Nashville, listening to her talk about this song idea she’d had, hearing the first draft in class, and then counting down the minutes to its release with her. It’s my favourite of hers because I relate to it so strongly, to the confusion and distress when someone abandons you without explanation. But it’s also about taking back the power and moving forward, bravely and deliberately. Since this song’s release, I’ve been more involved with her project, writing bits and pieces for her press releases and I feel so honoured and grateful to be on this journey with her.
He’s tired of my blue eyes and the chase
I became a fierce sea in his place
I’m thunder, he was the rain
I hold onto my heart as it aches
Warm up from the chill he creates
There’s more to me than this pain
People play pretend, they change
Their minds, we’re all the same
I didn’t plan on this, it’s fine, just go
Did I become someone you couldn’t love
Did I become something you couldn’t love
Couldn’t love, couldn’t love
Couldn’t love, couldn’t love, oh
Is there a part of me that was not enough
A part you found, a part that you couldn’t love
Couldn’t love, couldn’t love
Couldn’t love, couldn’t love, oh
- She Used To Be Mine by Sara Bareilles
Another ‘old’ one but I couldn’t leave this one out. This year, I hit the lowest point I’ve ever been and for a while, I was so depressed that I couldn’t listen to music. I’ve only had that experience a couple of times but it’s always excruciating. But when I start to come out of it, Sara Bareilles is my go to, especially this song. It sounds as fragile as I feel but it has the hope that I need to keep going. Many of Sara’s songs have marked important moments in my life, both good and bad, and I’m grateful for that (one of the best moments of my life was when she dedicated her song ‘Uncharted’ to me during a show). She is one of my all time favourite singers, one of my all time songwriters, and I’m endlessly inspired by her.
She’s imperfect but she tries
She is good but she lies
She is hard on herself
She is broken and won’t ask for help
She is messy but she’s kind
She is lonely most of the time
She is all of this mixed up
And baked in a beautiful pie
She is gone but she used to be mine
It’s not what I asked for
Sometimes life just slips in through a back door
And carves out a person
And makes you believe it’s all true
And now I’ve got you
And you’re not what I asked for
If I’m honest I know I would give it all back
For a chance to start over
And rewrite an ending or two
For the girl that I knew
- Broken Glass by Rachel Platten
I’ve loved Rachel Platten since ‘Fight Song’ so I was very excited for her to release more music (although I don’t think anything could beat out ‘Fight Song’ for the number one spot). When this song came out, I listened to it all the time, especially when I had to do something that made me anxious. It gave me a boost emotionally and made me feel invincible, much like ‘Fight Song’ did when I first heard it. I love the confidence and the surety in this song. Although ‘Fight Song’ had a similarly empowering message, something about it sounded like it had something to prove. ‘Broken Glass’ has moved on from that; this song doesn’t need to prove anything and I love that.
So I bet on me and my own heartbeat
When all the odds are piling
Like bricks around my feet
You know, you know it’s more than
More than just for me
You know it’s worth it
I still believe, yeah
I’m gonna dance on broken glass, on broken glass
And I’m gonna make that ceiling crash, that ceiling crash
So what? Still got knives in my back
So what? So I’m tied to the tracks
I’m gonna dance on broken glass
And here I go, ya here I go
Yeah here I go, here I go
And here I go, here I go
- Legends by Kelsea Ballerini
I get major songwriting envy when it comes to Kelsea Ballerini. I know that we all have different styles but damn, I wish I could write like her. I swear she manages to fit more words into a song than anyone else and that makes for a beautifully detailed world in every song. I love this one for its sense of acceptance, for its pure you-and-me-against-the-world-ness. I also love the way it blends pop and country together. I think there’s something really special about the way country writers write pop songs.
We were golden, we were fire, we were magic
Yeah, and they all knew our names all over town
We had it made in the middle of the madness
We were neon in a grey crowd
Yeah, we wrote our own story
Full of blood, sweat, and heartbeats
We didn’t do it for the fame or the glory
But we went down in history
Yeah, we were legends
Loving you baby, it was heaven
What everyone wondered, we never questioned
Closed our eyes and took on the world together
Do you remember?
We were crazy, tragic and epic, and so amazing
I’ll always wear the crown that you gave me
We will always stay lost in forever, and they’ll remember
We were legends
- Getaway Car by Taylor Swift
Of course there was going to be a Taylor song on this list. Taylor Swift is one of my all time favourite people. I was beyond excited for the new album and I fell in love with this song from the first listen. It’s like a full-length movie fitted into four minutes; the detail is exquisite. I love the journey, the emotion, the energy. It reminds me of ‘Out of the Woods’ from the 1989 album. I think it’s one of her best songs from a songwriting perspective and every time I listen to it, I hear more layers, both in the production and in the lyrics. I want to write a song that complex and cohesive one day. I also love the ‘Making of a Song’ video for this song because that’s how I write songs. I love how excited she gets when they finish writing the bridge; I’m exactly the same.
It was the great escape, the prison break
The light of freedom on my face
But you weren’t thinking
And I was just drinking
Well, he was running after us, I was screaming, ‘Go, go, go!’
But with three of us, honey, it’s a sideshow
And a circus ain’t a love story
And now we’re both sorry (we’re both sorry)
X marks the spot, where we fell apart
He poisoned the well, every man for himself
I knew it from the first old fashioned, we were cursed
It hit you like a shotgun shot to the heart
You were driving the getaway car
We were flying, but we’d never get far
Don’t pretend it’s such a mystery
Think about the place where you first met me
We’re riding in a getaway car
There were sirens in the beat of your heart
Should’ve known I’d be the first to leave
Think about the place where you first met me
In a getaway car
No, they never get far
No, nothing good starts in a getaway car
- Spring Will Come by NADINE
Not from this year but I only discovered it recently. I know Nadine from university and I love her music but this one is really special. I feel like it’s talking directly to me and encouraging me forward, and I know I’m not the only one who feels that way. When I listen to it, especially when I’m in the fragile place I am at the moment, it gives me hope and makes me feel like I will get through all the hard stuff. It reminds me to trust myself and I’ve really needed that.
You’ve wasted hours
Knocking on iron doors
Maintained your head and heart
You know, he can’t be yours now
Now run, my soul
From regrets too old
Be strong, be bold
Let new ways unfold
Now your cheeks turn back to colour
As you’re blinking in the sun
In time you will recover
I can see new life’s begun
Spring will come
There are so many songs I wanted to put on this list but if I wrote about all of them, we’d still be here at the end of 2018. So I’ll stop. But this has been really fun. I hope you enjoyed it too. What were your songs of 2017?
Posted on December 9, 2017
Christmas and Autism aren’t hugely compatible. Lots of bright lights, noise, high emotions, family, socialising… It can all get too much. It can be a really stressful time. So I’ve been thinking about the past few Christmases and the one coming up and how I can make it restful and comfortable but also enjoyable.
Make sure you have the medication you need – To run out and go into withdrawal (depending on the kind of medication you have) is awful anyway but it’s adding insult to injury to have to go through it during a time that is characterised by its joyfulness. So make sure you know the dates your doctors/pharmacy will be closed and make sure you have the medication to get through that time. Please. If you need any extra motivation, do it for me. You do not need to go through that.
Plan presents with friends and family – I get really anxious about receiving gifts. I always worry that I’m not reacting positively enough, that I’m letting the giver down. I worry that they’ll see a microsecond of anything other than joy and that will upset them. Another anxiety about presents comes from the times when I feel really far away and disconnected from myself, something I often feel at times of high emotion. When I feel like that, something like being given a present doesn’t impact me the way it would if I didn’t feel like that and that brings it’s own myriad of emotions: guilt, frustration, loneliness, etc. I feel like I’m being ungrateful and the lack of personal connection to whatever I’ve been given makes me feel very alone, like people don’t know me. I know that it’s my head messing with me but that doesn’t make the emotions any less real. To counteract those feelings, I’ve started discussing present buying with my family and friends. Asking for things can feel really, really, REALLY awkward but if I’ve learned anything, it’s that talking things through does help. So we talk about that and we talk about what I want and what they want, the more specific the better. It does take out the surprise element but I don’t really like surprises anyway and if you have anxiety, chances are you don’t like them either. For example, for my birthday, the biggest surprise was which poetry book I got from a particular writer. It made the whole day so much easier on my emotions.
Get as much information as possible – I make a point to know what’s going on as much as possible. For me, the biggest anxiety is food so when it comes to the important meals (such as Christmas Eve and Christmas Day – the ones where my family all get together), I make sure there will be at least a couple of things I can eat. I’m lucky because my family are very used to my struggle with food so they do take that into account when planning a meal and that means a lot to me. It makes a massive difference to my Christmas experience.
Space out social events – Obviously there are some things you can’t avoid but where possible, I try and space out the socialising to give myself time to recover and recharge. And knowing in advance allows me to prepare myself, physically, mentally, and emotionally. This makes it a bit easier to regulate my mood. Some things can’t be helped but my aim is to try and keep my emotions relatively even, rather than the tumultuous up and down that they can be, which is exhausting and upsetting.
Try not to beat yourself up about negative emotions – Something I also struggle with at Christmas is this feeling that I’m not enjoying myself enough, like if I’m not ecstatic I’ve somehow failed Christmas. I’ll look around at everyone and they’re all laughing hysterically at some ridiculous Christmas dinner activity (anyone else have those differently tuned whistles that you had to blow in a particular order to play Christmas songs?) but I feel like crying. I’ve had that experience a couple of times and it’s one of the most isolating feelings I can think of. It makes me feel so alone and disconnected from everyone and it’s horrible. I haven’t figured out what to do about this feeling yet but I think the first step is acknowledging it and accepting that it’s there. My plan is to try some of the things I listed in a previous post about connecting to the world around me. I’ll report back with whether it works or not.
Accept the anti climax – I often crash after Christmas and really struggle with the anti climax. That really drags my mood down. I’m hoping that spreading out the Christmas events will soften that a little and I plan to have some fun, gentle things to do to afterwards but again, I’m trying to acknowledge and accept it. I probably won’t be as calm about it when I’m in it; I’ll probably rage against it as is my default these days but I can but try. At the end of the day, that’s all you can do.
When you can’t get out of a stressful event, create a safety net – If there’s a stressful event that I have to go to, I plan as much as possible. I’ll scout out somewhere to retreat to or bring/find a friend who can rescue me if needed. I create a safety net for myself and often it’s existence is enough. It takes off the pressure.
Take the time to think about the sad stuff if you need to – At Christmas, I can’t help but think of the people who aren’t there, who are gone for whatever reason. I miss them, not necessarily more than any other time but in a more obvious way. They are not there at Christmas dinner, there’s a glaring hole in your shopping list, and there’s no present from them on Christmas morning. I think we do a disservice to ourselves and our emotions to push that aside, because it’s a holiday about joy or because it’s too hard. But if it’s something you want to do, you have to do it in a way that works for you. Sometimes it feels right to raise a glass at dinner and sometimes it’s right just to take a few moments to think of them. Sometimes it’s right to flip through photo albums and sometimes it’s right to cry about it. Grief and sadness aren’t things you can do to someone else’s formula. But I think it’s important to take the time to remember and acknowledge the sad stuff, in whatever way you choose.
Ultimately, it’s all down to communication and planning. Planning, planning, and more planning, as always. That’s what I’m learning. I hope this has been somewhat helpful and that you guys all have the lovely, safe Christmases you deserve.
Posted on December 5, 2017
Over the years, I’ve had periods of feeling really far away. It often overlaps with my bouts of depression but sometimes it creeps in out of nowhere and I feel completely lost, untethered from everything around me. It fades in and out like a fog, sometimes with no warning and often there’s nothing I can do to dissipate it or avoid it. It can be really scary, especially when it first started to happen, but at the same time, it’s like I can’t really feel that fear or any of my emotions. I’ve described it in different ways but they all describe the same feeling: feeling completely disconnected from myself. But I thought I’d include a few of those descriptions because they give more of a sense of how it feels:
- It’s like looking backwards through binoculars so everything seems really far away when it’s actually close. Sometimes I can almost see the black tunnels that would be the inside of the binoculars. This is the way I usually describe it; I think it fits the best.
- I feel like I’m five miles back inside my head. I can’t reach anything or anyone and it feels like no one can hear me, the real me.
- It’s like watching everything happen and feeling like it would continue as normal if I wasn’t there, almost like people wouldn’t notice if I disappeared. They’ll keep talking, leaving spaces for me and responding to what I would’ve said if I was there.
- Similarly, it can feel like I’m invisible, like people will look right through me.
- It feels like I’m stuck behind glass, like there’s glass between me and everybody else. I am physically separated from everyone. This is another one of my ‘favourite’ ways to describe it.
- A variation of that is feeling like I’m wrapped in cling film: separated from everyone but also trapped. It makes me feel like I can’t breathe.
- I feel disconnected from my life, my body, like I’m in control but it’s not mine. I’m moving my limbs but they feel oddly numb, thick and heavy and clumsy.
- One of my earliest memories of this feeling is feeling like I was out of sync with everyone else. That’s a very lonely and uncomfortable feeling.
- Sometimes it feels like I’m underwater. It’s like I’m surrounded by something other than air and there’s more resistance when I try to move.
- The most recent description is that I feel like I’m sleepwalking and can’t wake up. This one overlaps with how I feel when I’m really depressed so it’s not the most reliable analogy, if that makes sense. It fits both.
To be completely honest, I’m not sure what causes it, given the overlap of the different mental health problems I struggle with. This is something I have a lot of anxiety about, not being able to pinpoint where individual problems come from. Everything’s connected to everything else. Everything influences everything. But from my own reading, it seems to be common in depression and in Borderline Personality Disorder. It’s often a coping mechanism for stress or overwhelming emotions. The Mind website has a great page about this. My experiences line up best with the description of ‘Depersonalisation’.
I still haven’t found anything that does much to help it but there are a few things that give me a few seconds of relief, of connection. Usually, it’s about tapping into my senses. That seems to bring me back to the world a little bit. So things like opening windows, sitting in the sun, touching leaves or flowers, stroking a pet, having a cold shower or holding something cold… they don’t fix it but they do have a positive effect. Even if it’s tiny, they do create small positive spikes in my mood. They’re like stars in a suffocatingly dark sky. With this, it’s more about getting through it than trying to fix it. It’s about creating one moment after another to carry you through to the other side.
I want to add that I’ve also used self harm to ‘wake myself up’ from this. I’m not advocating it; it’s dangerous and damaging and really difficult to get free of. But if nothing else, I’m honest and it has helped. When I’m in a really bad place, I don’t want to hear that I shouldn’t do it because it feels like the only thing that helps but when it’s not quite so bad, I try really hard to find other ways to cope. I try the things I’ve listed or I try to distract myself. I don’t want to get too far from the point of the post so I’ll come back to this in another post but I felt like I had to include it here.
Friends and family have asked me what they can do to help and if I’m honest, I don’t really know. It can be hard to think about that when I’m just trying to get through it. But I do want to help them help me. At some point, I will write more about this, but I do find it really helpful when the people around me let me set the pace and decide what I can and can’t manage. Sometimes a push is helpful but in this situation, it isn’t. A sense of control grounds me a little bit. Plus, there are some things that are just really hard to manage when you feel like you can’t connect to your emotions. For example, I find it really hard to write songs and be creative when I feel so disconnected from everything. So being able to (and feeling safe to) adapt my activities does help. And talking. Talking it through, figuring out solutions, letting off steam. That really helps.
Posted on November 29, 2017
I’ve been really struggling with my hair pulling lately. It goes through phases: sometimes I can go several days without pulling and sometimes it’s like my fingers are velcro-ed to my head. Right now, I’m in the latter. I don’t know whether it’s linked to my mental health (which hasn’t been great) or whether it’s just so ingrained that maybe nothing can stop it. Either way, I’ve been tearing out a lot of hair recently.
When I was writing my original post about Trichotillomania, I rewatched this video. I had discovered Rebecca and TrichJournal very early in my hair pulling and it was incredible. I wasn’t alone! I felt understood and I’m pretty sure that that helped me to stop pulling the first time. Even though it hasn’t lasted and I’ve since started pulling again, I’m still so very grateful for that.
That first post didn’t seem the right place to include this video but I have wanted to post it because I related to it so strongly and out of all her videos, I think it so truly shows the distress that Trichotillomania can cause. It’s not just pulling a bit of hair out; it has profound effects on the person and their life.
A few quotes from this video:
- “My fingers are screaming to tear at my hair right now. In the past I’ve described them like magnets: they are attracted to my hair.”
- “I really, really want my hair to grow. And I’m really, really scared of losing it.”
- “Yes, I’m still pulling, because the pulling never stops.”
I’ve been watching Rebecca’s videos for about three years now. Apart from videos on Trichotillomania, she talks about mental health, hoarding, makeup, her life… oh, and her cats. They’re gorgeous. You can find her channels here and here. I really recommend checking out her videos.
Posted on November 25, 2017
If I could change one thing about myself it would be my energy levels.
I’ve struggled with fatigue for most of my life. When I was twelve, I suddenly got sick and missed a lot of school. I was nauseous and so tired that even walking upstairs was exhausting. I went to the doctor, had many, many blood tests, saw various specialists but no one could figure out what was happening. No one could find anything wrong. And yet I was still very unwell. The only clue we had was that the blood tests showed I had had Glandular Fever at some point. But that was it. Months passed and we tried lots of different approaches but nothing helped. I was managing a bit of school but it was only a handful of classes a week and even that exhausted me. I basically lived on the sofa, missing out on pretty much everything.
Just over two years in and someone suggested something called the Lightning Process. It sounded strange but I was desperate so we said yes. It’s a fascinating idea: changing the pathways in your brain to affect your body and your health. I went to the three-day training course but by the end of the second day, I knew something had changed. I felt completely different and it showed. I still had very low stamina but somehow I had more energy. It was like a switch had been flipped. I went back to school and although I did still struggle a bit, it was so much better than before.
Everything seemed normal until I was eighteen and doing my A Levels. The stress was overwhelming and before I knew it, I was drowning in exhaustion. Somehow, I made it through my exams but my mental health deteriorated to a point where I couldn’t start the next course I’d planned to do. I struggled with both anxiety and depression and my fatigue seemed – and still seems – to be inextricably linked. It’s not as simple as ‘I’m more tired when my mental health is bad’ but there is a correlation. Medication has helped and was one of the major factors in getting me through university but it’s still something I struggle with daily.
When I was diagnosed with ASD, I was told that fatigue isn’t unusual and sleep problems are common with Autism. Personally, I’ve struggled with insomnia but more often, I sleep long hours only to wake up as tired as when I went to sleep. It’s like sleeping is just a break between days; I don’t feel like I actually get any rest from it. I think that it’s also to do with how hard my brain is working all the time. Simply existing requires a lot of processing of information: my surroundings, what other people are saying or doing or feeling, sounds, smells, as well as my own reactions and emotions about all of those things. I have to actively process all of that and it’s exhausting. That’s a normal day. If something emotional happens, good or bad, it takes all of my energy to deal with that. To me, strong emotions are like fog and it can take days or weeks to work my way through it. Sometimes longer. I also live with a lot of anxiety, which has always done a number on my energy. That anxiety feels like a programme running in the background of my brain, using up my energy, physically and mentally.
It’s a constant struggle, a constant frustration. I know that I have less energy than the people around me but I can’t seem to change my expectations. I try over and over again to do the same amount as everyone else but I can’t sustain it. Sooner or later, I crash, completely exhausted. I’m getting better at managing my energy and building in recovery time but I can’t seem to stop myself raging against it. I can’t accept it. I feel a bit like one of those wind up toys that just keeps running into a wall. I want to do so much more than I have the energy for and that’s really, really hard to deal with. As is the long-term nature of it. You can’t just quit your life for a few days like when you get the flu or have a migraine. I’m not making light of those things – I’ve had and hated both – but the need to keep pushing forward despite feeling so exhausted and the anxiety about not making any progress wears me down in a way nothing else does. It affects every aspect of my life and it’s starting to feel like a part of me.
This makes it impossible for me to work. I’ve been extremely fortunate to get some benefits over the last few years but it’s still very, very stressful. I find it so difficult to adjust my thinking, to adjust to my new reality. I keep trying to meet the standards I’ve grown up believing I need to reach only to feel like a failure when I can’t reach them. The idea of even a part time job fills me with blinding panic because I know that I am physically incapable of doing all the tasks that would be required of me. Some days, even having a shower feels like climbing Mount Everest. I want to link to this Tumblr post because I think it explains the relationship between energy and the tasks you’re trying to do really well.
And it’s not just physical energy; it’s mental and emotional energy too. I get overwhelmed and burnt out really quickly, I think because I feel everything so intensely. A job that doesn’t account for that would have a devastating effect on my mental health and even though the world is starting to think about mental health and spread the message of putting you’re mental health first, I still feel incredibly anxious about this area of my life. I feel like having so little energy means I’m lazy. I feel like a burden for not having moved out, for not being able to be independent, for not having a job. Everyone I know has had jobs that they didn’t like and I feel like I’m entitled for wanting a job that I like and can do with the limitations I have. I feel like I shouldn’t want more than my neurotypical peers, like I should just get on with it and stop expecting special treatment. And yet, I know the limits of my mental health and of my body. These two sides keep clashing (which I’m sure doesn’t help my energy levels). It’s a horrible place to be stuck in and I can’t help but think that it’s connected to getting an Autism diagnosis so late: I grew up with the same external expectations as everyone else but a different internal capability. I know that now but it’s hard to hold onto that when the voices in my head are telling me that I’m just not trying hard enough. That one is a constant, in every area of my life.
I’ve often used being a Mac in a PC world as an analogy for Autism: most of the functions are there but they’re in different places or you have to find an alternate way of doing something. And I think it’s true here as well. When you run a programme that isn’t meant for the system you’re using, it doesn’t work as well. I think that’s a good analogy for being neuroatypical in a neurotypical world. I feel like I have not been designed for this system and so I don’t function as well as the people that have. Or maybe the system hasn’t been designed for me. It’s a chicken and egg situation. But you get my point. For whatever reason, I feel incompatible with my environment and that takes up a hell of a lot of energy.
I don’t really have any answers to this problem. I’m not even sure how to finish this post. This is something I struggle with daily and at the moment, I feel very worn down by it. I don’t want to spend my whole life planning in recovery time, replying to ‘how are you?’ with ‘tired’. I don’t want my life to be decided by my energy levels but I’m scared that it will be.
Posted on November 18, 2017
Living with depression is hard. Yes, I know, I’m stating the freaking obvious. But I want to write about something that doesn’t come up that often, in my experience at least. And when I say ‘living with depression’, I mean going through repeated bouts of depression over a period of time. I’m not diminishing the difficulty of going through an isolated experience; I just want to point out something specific to the continued one.
Being at your lowest is excruciating but it’s simple, when it comes to the complexity of emotions. Depression is overwhelming; it blots out everything. The world is one colour. But as you start to move out of that place, it becomes emotionally confusing. A lot of you is still depressed but there’s also a part of you that’s trying to move forward. And that conflict is exhausting. Your emotions are constantly clashing and that takes up so much energy.
I recently landed in the lowest place I’d ever been. I feel like I say that every time but I know that this was the worst I’d ever felt. I had a very emotionally traumatic meltdown – again, the worst one I’ve had – and ended up sitting in the middle of my local park, crying my eyes out at eleven o’clock at night. And it was that heaving kind of crying where it feels like it’s coming from a place inside you that’s deeper than physically possible. It was horrible and when I woke up the next morning, I was in such a deep depression that I couldn’t do anything. I literally couldn’t. I lay in bed all day, staring at the wall. I felt completely hopeless. I couldn’t see the point in anything. There was no point in trying to be happy, in trying to do anything, because the only real thing is misery.
It took days to start functioning again (move around, interact with people, eat, etc), but I was still firmly locked in that point of view. I couldn’t see the point of anything but the oppressiveness started to lift and other emotions started to creep in. I was able to smile again and sometimes I’d even laugh and that was really hard because I still felt so hopeless. It felt wrong. I didn’t feel ready to be okay.
I feel like I have two levels of mood, my surface mood and my inner mood. The labels speak for themselves but I want to elaborate a bit further. My inner mood is what I feel at the centre of myself (my automatic thought was to name it my ‘real’ mood but I know the surface mood is real too – please bear with me: words are hard!) and at the moment, that is depressed. If I had to choose one emotion to associate with myself, it would be a sad one, like depressed or disheartened. My surface mood reacts to outside stimuli: good weather, spending time with people I like, a new episode of my favourite TV show. Those sorts of things do create spikes in my mood. It can be really easy to brush those moments off because they feel so wrong when I’m depressed. But they’re both real and both deserve to be recognised. That’s why I like the two levels of mood idea. By having two levels, one emotional reaction doesn’t invalidate another. I can feel really depressed and kind of okay – even optimistic – at the same time. It’s too simplistic to think that we only feel one emotion at a time but when they’re so opposite, it just makes the whole thing more difficult, more confusing, more exhausting.
The only time the two seem to synchronize is when I’m really, really depressed. It sounds sad when I put it like that but right now, it’s the truth. I know that my surface mood can change so hopefully the inner mood can too. Hopefully I’ll reach a point where it’s not so low.