Posted on May 3, 2018
This week has been ridiculously busy and stressful and there have been many ups and downs. I’m feeling more than a little overwhelmed. I haven’t had much time to write and I’m not quite happy with any of the things I’ve already written; I wasn’t even sure I would be posting. But then I remembered this video. I’ve wanted to post it for a while so here we are. I’ve talked about Anna Akana’s videos before (I think she’s great!) but this one really speaks for itself. Just watch it. It’s worth it.
Posted on April 28, 2018
In my last session with my psychiatrist, we went over my experience of taking Lithium and decided that it was time to try something else. He actually said that he was impressed I’d held out so long so that’s something to be proud of. I think. I wasn’t trying to be a martyr: I’ve just had so many experiences of people brushing me off that I always feel like I have to have enough evidence to prove that it’s real. Anyway, he prescribed me Lamotrigine and because that can be taken with Lithium, I could switch without having to wait for the Lithium to get out of my system. So that was good. I’m getting increasingly frustrated by this process.
As always, this is just my experience. Please, please don’t ever mess around with your medication without the advice of your medical professional.
The first week was really tough. I swung sickeningly between hot and cold, had migraine-like headaches, felt nauseous and shaky and very anxious. I also felt the closest thing to depression that I’ve felt in a while. With the hope of the sleeping through the worst of the side effects, I had started out by taking it at night but straight away I found that it was affecting my quality and ability to actually sleep. I had several nights of barely sleeping until I changed to taking it first thing in the morning.
The main thing in the second week was the extreme fatigue. I slept long hours and found it difficult to wake up in the morning, then I struggled to stay awake but often fell asleep during the day. I was easily overwhelmed and felt anxious most days. The feelings of depression hadn’t dissipated either.
As prescribed, I increased the dose so there wasn’t much time for the side effects to settle. My sleep was still pretty disrupted. I slept restlessly but woke early and fell asleep during the day. I was still incredibly tired. I had periods of feeling very shaky and dizzy; at one point it was so bad that I couldn’t get out bed until the evening. I was still feeling anxious and depressed and although my concentration and motivation hadn’t been great up to that point, it became practically non-existent.
Again, I was sleeping a lot but still absolutely exhausted. I was also very anxious even though there didn’t seem to be a cause for it, which of course made the anxiety worse.
This week was my first week in Nashville so it’s hard to tell what was a result of that and what was a result of the medication. I was more anxious than I have been in months and it got to the point where I was questioning everything, even the things that I’m usually steadfast about. That was very distressing. The jet lag hit me hard and I was constantly exhausted, falling asleep in the middle of the day and still struggling to stay awake until a reasonable bedtime.
The second week of Nashville was a bit easier. I was still exhausted but the anxiety faded a bit as plans started to work out and produce results. That usually lessens some of the anxiety but there was still more than on a normal day and although I had one evening of feeling on top of the world (playing Song Suffragettes – see my Nashville post), I was still struggling to keep my head above the surface of the depression that felt like it was just waiting to drag me under.
During this week, I moved house, something I had been long (at the very least) apprehensive about. So, in the days before, I was anxious and unsettled and then the actual move was very difficult. I was almost too anxious to function and on the evening of the day we moved in, I had a meltdown for the first time in months. It was a horrible experience and for days after, I was fragile and shaky and emotional. I barely slept and even though I don’t eat much anyway, I barely ate at all for a few days. And at the end of the week, something – I don’t know what – triggered a new, suffocating wave of depression that really threw me. That was as low as I’ve been for a very, very long time. I was very depressed and kept bursting into tears; I felt like glass filled to the top with water that you only have to nudge slightly before it spills over. The smallest thing – nothing even – made me cry, or start laughing hysterically that then turned into crying. I was miserable and exhausted. In the midst of all that, we increased the dose but I honestly can’t tell what was medication and what was just life.
It took a while to get out of that depression, even just a little bit. And then I was back in the vague blankness that has been characteristic of my recent experiences with medication: it’s either anxiety and depression or nothing. There was a point when I thought that would be preferable to the extremes of emotion I’m used to feeling but now I know it isn’t. Feeling is everything; there is nothing worse than apathy. And that’s where I still am.
Another thing that I never even wrote down is that I’ve been experiencing muscle twitches, mostly in my legs. It’s not dramatic and it happens so infrequently that I didn’t even equate it with the medication until it had happened several times. It’s not an issue but I think it’s worth mentioning and something that I was concerned would get worse if we continued to increase the dosage.
But after speaking to my psychiatrist again, we’ve decided to try something new. Lamotrigine hasn’t been terrible but it hasn’t been good enough: my concentration and motivation are still terrible, I’m exhausted, and the anxiety and depression are still significant struggles. It hasn’t made anything worse but it also hasn’t made anything better, which is the point of them. So I’m trying a new medication. I know that Lamotrigine is there if I need to come back to it but I need something to hope for.
And a final note: if you’re struggling with medication, whether it’s your first try or your fiftieth, please don’t give up hope. This process is ridiculously long and complicated but when you find the right one, it’s so worth it. You can be you again but more efficient. And that is potentially it forever. You may never need to try another medication again. So this time – this struggle – is an investment. Try to hold on to that.
Posted on April 24, 2018
So I just moved house. It was not fun. I am going to write about it in more detail – I think the experience might be useful, maybe for someone trying to understand how change can affect a person with Autism – but I’m not ready to do that yet. It was really difficult and I’m still pretty emotional about the whole thing. Change is notoriously hard for people with Autism but I think the permanence of a change like moving house is particularly difficult. I definitely learned some lessons during the process so I thought I’d share them.
Some context before we begin: Not only were my family moving, we were separating into different houses, which was something I hadn’t been expecting. That was a real shock to me and made the whole thing even more difficult. But we’re still close and live close enough that we still see each other as much as before, which I’m really grateful for. Now I live with my Mum; I’m not ready to move out.
Right, here we go.
Prepare for emotions, yours and others – First, however you feel is okay. It’s a big deal. Whether you feel everything or nothing, it will take time to work that out. And just when you think you’ve dealt with all of that, it’s time to move and it all comes back. There were lots of tears on the day of the move, as well as the few days after. It’s emotional and stressful and exhausting: the perfect mix for someone to get upset. I think the only thing you can do is be gentle with yourself and each other and give people space when they need it.
Build in as much time as possible – Moving house is exhausting and emotional. And packing at the last minute just makes it worse. Giving yourself time allows you to be careful and methodical and it means you can take breaks if it gets too much.
Label the boxes – The destined room is not enough. By the time you’ve packed everything you own and transported it to your new home, you’ll have no idea where anything is. And every time you need anything, you’ll spend at least twenty minutes digging through all the boxes in order to find it. It will drive you up the wall.
Pack a suitcase – You know me: preparation, preparation, preparation. Make sure you have a bag of things you’re going to need for at least the first week. You might think that you can get yourself sorted in a couple of days but chances are you can’t and you really don’t want to find yourself out of things like clean clothes and make up remover. You don’t need that on top of the stress of moving. Also, remember to check the weather forecast before packing, just in case you find yourself caught unawares by a heat wave with only jumpers to wear like I did.
Try to create a safe space for yourself – Moving house is messy and if you’re anything like me, being surrounded by clutter for extended periods of time makes me feel very claustrophobic and panicked. So, both before moving out and after moving in, I tried to keep one area calm and somewhat neat to give me a space to decompress and recharge in. I wasn’t always successful at keeping it tidy but for the most part, it helped.
Set a reminder to put all your food in the fridge – The last thing you need is all your food going off and with a million things to remember, you’ll most likely forget something. Let that be something else.
QUESTIONS TO THINK ABOUT
How much help do you need?
Depending on your capabilities, you may need to enlist some help to move everything, whether that’s professional movers or friends and family or both. You really don’t want to get halfway through moving day and be unable to keep going so make sure to think carefully about what you need and ask for that help well in advance.
Do you need to be there on moving day?
This obviously depends on whether you’re moving with your family or by yourself: the demands on you will be different. In my case, my family knew how difficult the whole experience had been and so suggested going to see a friend while the removal people did their thing. They thought that the empty house would upset me but I felt like I needed to be there; it helped me say goodbye.
Do you need a clean slate or do you need to keep things familiar?
As already mentioned, change is often hard for autistic people so you might feel the need to keep things as similar as possible, such as furniture and when decorating. But on the flip side, many people with Autism feel emotions very strongly so a change might actually be the less overwhelming option. It wouldn’t be healthy to be constantly reminded of an upsetting event.
Do you need closure and if so, how can you get it?
I definitely needed to say a real goodbye. I’d lived in that house for fifteen years; I felt safe there and there are a lot of memories associated with it. For a long time, it felt impossible to leave. So, once I could consider it, I thought a lot about what would help me leave, knowing that I wouldn’t be coming back. So, on the last day, we took some pictures of me in my room and then I put a letter I’d written for a future resident under a loose floorboard. I can’t tell you why or how but that did help a bit.
ADVICE FOR FRIENDS AND FAMILY
If you’re telling an autistic person that you have to move, be clear. Give them all the information. Especially when there’s so much emotion, it can be hard to process what’s going on so anything that isn’t explicitly stated may get lost.
Give them as much warning as possible. Something like this is really difficult to process – there are so many emotions involved – and it came take time to absorb and make sense of.
So I think that’s everything. I hope this has been interesting and helpful. One last thing to add: I found this article recently that is more relevant to someone moving out of their family home and thought it was definitely worth including here.
Posted on April 14, 2018
So, as you guys know, I’ve been in Nashville and I just got back on Thursday. I’m working on a post all about the trip – partly because I just really want to write about it and partly because I think there is some stuff in there that could be useful to others – but that’s taking a while so, in the mean time, here is a little list of songs that I listened to while I was away, one for each day. Since I was there for the Tin Pan South songwriting festival, many of these songs haven’t been released yet or were performed by the original writers rather than the person that usually performs them. So, for the songwriters out there, I hope this will be interesting. Also bear in mind that, especially while the festival was going on, I was hearing between twenty and fifty songs a night so a lot of thinking went into these choices…
SUNDAY – ‘Love Is A Wild Thing’ by Kacey Musgraves (Written by Kacey Musgraves, Ian Fitchuk, and Daniel Tashian)
I hadn’t had a chance to listen to Kacey’s new album until I got on the plane and I just fell in love with it. She’d performed this one at Country2Country and I was so excited to hear it again. It did not disappoint and it’s one of my favourites of the album.
Even if you lose it, it will find you
There’s no way to stop it so don’t try to
Running like a river, trying to find the ocean
Flowers in the concrete
Climbing over fences, blooming in the shadows
Places that you can’t see
Coming through the melody when the night bird sings
Love is a wild thing
MONDAY – ‘Give It All Back’ by Jordyn Shellhart
I first heard Jordyn at a Song Suffragettes show (an organisation aimed at showcasing new female songwriters in country music) and I instantly fell in love with this song, with it’s energy, with it’s golden hope. You know when you’re listening to a song and it feels like your lungs are expanding, your head tilts up, and your whole body gets lighter? Yeah, I had that with this song. And then I was lucky enough to hear it in a Tin Pan South round later in the week.
If we got all we ever wanted
But it cost us all we ever had
Pinkie swear, baby, let’s shake on it
If it comes to that,
We’ll give it all back
TUESDAY – ‘Fight Like A Girl’ by Kalie Shorr (Written by Kalie Shorr, Lena Stone, and Hailey Steele)
This song has been out for a few years now but hearing it live is just another thing altogether and, of course, Kalie performed it when I saw her play at Song Suffragettes. I sort of forget how much I love it and then it just smacks me in the face and leaves me breathless. It’s such an anthem and I particularly love the lines about her Mum because I feel exactly the same way.
I’m little but I’m loud
Just wanna make my mama proud
And you can tell without a doubt that I’m her daughter
She raised me to believe
That I can be anything
So when you push me, I’ll just push back harder
WEDNESDAY – ‘Rainbow’ by Kacey Musgraves (Written by Kacey Musgraves, Natalie Hemby, and Shane McAnally)
I freaking love this song and have loved it since Kacey started performing it way back when. I was really disappointed when it wasn’t on her second album and absolutely ecstatic when it was on her third. And then Natalie Hemby performed it at Tin Pan South and I loved it even more, especially when she talked about the writing of it: it’s about how hard it is to recover from a traumatic experience or period in your life and how, even once you’ve come through it, it can be hard to recognise that. I really relate to that.
‘Cause the sky has finally opened, the rain and wind stopped blowin’
But you’re stuck out in the same old storm again
Hold tight to your umbrella, oh darlin’, I’m just tryin’ to tell you
That there’s always been a rainbow hangin’ over your head
THURSDAY – ‘Doin’ Fine’ by Lauren Alaina (Written by Lauren Alaina, Emily Shackelton, and Busbee)
This was a hard pick (honorary mention to ‘Between Me and a Bar’ by Alyssa Micaela because it’s freaking awesome and was a very, very close second to this song) but I connected to this song so strongly that it had to be this one. Emily Shackelton performed it during a Tin Pan South round and I fell in love with it straight away. This is my kind of anthem: not rainbows or confetti or fairy tales, but the moment when you realise you just might be okay after a really long struggle.
I’m doing fine enough to know that everyone’s a little broken
Fine enough to learn that hearts are best when they’re wide open
I still got fear inside of me
I’m not okay but I’m gonna be
For the first time in a long time I’m doing fine
I’m doing fine
FRIDAY – ‘History’ by Abby Anderson
Again, this one was a really, really difficult choice. Shout out to Ingrid Andress because all of her songs were amazing, especially ‘Ladylike.’ But, like the last one, I related to this song so powerfully that I had to talk about it here. As far as I can tell, she only wrote it recently so I’m not sure if it’s available anywhere yet or even if it will be. I really hope it will. It’s the song I’ve been trying to write my whole life.
It may be something that nobody sees
Something that we carry that will always be
If our paths don’t cross and we never speak
And the world moves on, believe you’ll be
A part of me, part of me
‘Cause we have history, history
SATURDAY – ‘First Last Name’ by Madison Kozak
I’ll stop saying this now but this was another one that I really struggled to narrow down. I was absolutely sure that I would choose a Nikita Karmen song because I was absolutely blown away by her in the first round (seriously, go and check her out) but then I heard this song and I couldn’t not write about it. Songs about fathers speak to me on a very specific level and this one just made me cry because it made me think about what our relationship might’ve been like. It’s a beautiful song.
He’s the son of a salesman
Short glass old fashioned
‘How’s your car been running, baby?
Call your mama when you get home safely.’
My hall of fame
He’s never missed a game
My first last name
SUNDAY – ‘Delicate’ by Taylor Swift (Written by Taylor Swift, Max Martin, and Shellback)
I listened to this song a lot on Sunday because I was performing at the Song Suffragettes round the next night and at the end of each show, the girls perform a surprise cover to finish. I was out of my mind excited to play that show so I listened to it on repeat to make sure I really knew it. Anyone who knows me knows that I love Taylor Swift. It wasn’t one of my favourites on the new album but the experience of learning it and performing it in that setting has made me absolutely love it.
Third floor on the west side, me and you
Handsome, you’re a mansion with a view
Do the girls back home touch you like I do?
Long night with you hands up in my hair
Echoes of your footsteps on the stairs
Stay here, honey, I don’t wanna share
MONDAY – ‘Brand New Heart’ by Lucy Scholl
I first heard this song last year when I saw Lucy perform at a Song Suffragettes round and I instantly fell in love with it. The chorus just spoke to me so clearly. I think it’s much better than the ‘I’m grateful you broke my heart because it made me a better person’ songs because, while it acknowledges the other person’s part, it’s about how she made that new heart, that new person. She hadn’t planned to play it at the round we were both performing in but I asked and she very kindly obliged.
Never thought I’d be so proud of these scars
Showin’ ‘em off like they’re a work of art
I took all the pieces that you broke apart
And I made a brand, brand new heart
TUESDAY – ‘Let Me Be’ by Savannah Keyes
Savannah played this song during the Song Suffragettes round and it’s been on my mind ever since. She talked about how she’d been out with friends and how they’d seen a shirt in a shop window, which had the words ‘eat less’ emblazoned on it. That example of how much pressure is put on girls inspired this song, which I just loved, as did my Mum. It was very powerful.
Let me be daring
Let me be kind and caring
A dreamer with a flower in her hair and
Let me be young and free
Let me be sweeter
Let me be an innocence keeper
A follow-my-heart believer
Let me be seventeen
Let me be
WEDNESDAY – ‘Oh What A World’ by Kacey Musgraves (Written by Kacey Musgraves, Ian Fitchuk, and Daniel Tashian)
And in a strange full circle of sorts, I ended up listening to Kacey Musgraves on the flight home. After the ten days I’d just had, ‘Oh What A World’ feels like a pretty appropriate closing track.
Oh, what a world, I don’t wanna leave
All kinds of magic all around us, it’s hard to believe
Thank God it’s not too good to be true
Oh, what a world, and then there is you
Posted on April 3, 2018
Happy Autism Awareness Day!
Having been posting all week, I’m not sure I have anything new or exciting to say today. Plus I’m really jet lagged and struggling after an allergic-like reaction that I had on the flight to Nashville yesterday. I’m not sure how many words I have in me until I’ve had at least another night’s sleep. But I wanted to post with all the links to those posts and throw in my two cents (I’m in America, geddit…) to the discussions going on all over social media today.
Remember that, regardless of the things you find difficult or are unable to do, you are important and what you do matters. We may not always live up to the standards imposed on us and we may not always be as good as we want to be but that does not mean that what we can manage doesn’t matter, whether that’s exam results, exercising, or writing songs. How you do something, with your unique emotions, thoughts, and experiences, will be entirely different to how any other person would do it. That’s special. You’re special.
I’ll see you all soon. And here are all the posts from this week, all aimed at greater understanding around Autism:
Posted on April 1, 2018
I know I touched on issues with food already this week but I thought I’d go into a little more detail so those of you who don’t experience this difficulty can get a glimpse into what it’s like. Food is a massive problem for me; it’s a daily cause of stress. Where am I going to be? Will there be food I can eat? If not, can I bring my own food? Can I get away with not eating or will people notice and point it out? It’s a constant loop and that is exhausting.
As I said in a recent post, I’m incredibly sensitive to the flavour of food; add even the smallest sprinkling of pepper to a meal and I can’t eat it. It overwhelms me and I just cannot eat it. Forget spicy food entirely. So I can only eat the simplest things: plain rice or pasta, unadorned chicken or fish, and so on. I practically live on fruit and vegetables. When there are lots of different flavours, I get overloaded. I can’t describe it better than I did in my sensory sensitivity post: “It’s like throwing a load of different coloured paints together: you don’t see all the different colours, you just get one new colour and it often isn’t a nice one.”
I’m also very sensitive to texture; there are very few things that don’t trigger my gag reflex. I’m sure all of you have experienced that at one time or another so you can imagine how desperate I am to avoid it. I remember a particularly bad experience with tofu; I’m actually shuddering just thinking about it. I have a similar problem with wet foods touching dry foods. It triggers the same response. So while my family – who are all fairly adventurous when it comes to food, at least from my point of view – flip through a library of cookbooks, I eat simple meals with ingredients that I can separate and I eat them over and over again.
Honestly, I don’t mind that. It’s safe. It’s comforting. It’s the pressure to eat ‘like a normal person’ that’s stressful. Going to restaurants and eating in public is a major anxiety: it’s very rare that there’s something on the menu that I feel able to eat and asking for something simple feels impossible. I find asking for anything difficult and drawing attention to this issue is something I try to avoid if at all possible.
As a child, I was labelled a picky eater and strongly encouraged to try different food. I know that my family and friends were just trying to help me: they were trying to prepare me for a world that would expect me to eat complicated food. But instead of it getting easier, it got harder. So eventually we reached this uneasy stalemate. But getting a diagnosis made a massive difference: it gave people an explanation, made them realise that it was something I couldn’t help. It took the pressure off in a big way. But as important as that is, it hasn’t fixed my problems with food. And as much as I struggle with it physically and struggle to get the right nutrition, it also has a big impact on my mental health.
People make assumptions when they hear how little I can eat. They think I’m being picky or deliberately difficult and see me as an inconvenience. I know that it’s not my fault and that it’s a valid reason to struggle but I find it incredibly embarrassing that I can’t eat like everyone else. I feel like it keeps me from really becoming an adult, especially when so much socialising revolves around the consumption of food and drink. It feels like a weakness; it’s something I’m ashamed of, which definitely feeds into both my body image issues and my depression, as well as my anxiety. When I get really low, as in dangerously low, food becomes even harder and I just lose the will to eat all together.
I vividly remember being about ten years old and reading a magazine article about a girl who had to have intravenous nutrition for medical reasons and I found myself wishing I could have the same, wishing I could not eat because it would be so much easier. And I still relate to that. I would give anything to be in control of this, rather than it have control of me. I wish I could choose what to eat, rather than navigate around the things I can’t. I wish I could eat according to my beliefs instead of having to worry about whether I’m getting enough protein or calcium or whatever (I would love to be a vegan, or even a vegetarian, and often feel guilty that I’m not but health wise, it’s ill advised when there’s already so little that I can eat). I wish I didn’t have to be afraid of blowing a sensory fuse, of getting completely overloaded, which can trigger a meltdown. I wish I could enjoy food. But I can’t and I’m scared I never will.