When Things Get Really Bad

Since I last posted on here, literally all I’ve done is survive.

After putting up last week’s post, I went to therapy, which just about wrecked me. It was really hard going. I don’t want to get too into what we talked about and what I’m currently struggling with because I’m really struggling with it and I’m still figuring out how to put all of it into words. But I think the gist of it is important to include: I’m struggling with ‘feeling’ autistic, like I’m never going to be able to function the same way as everyone else. I don’t know how to cope with a thought like that. And that has really triggered my depression, in a massive way. I feel like I say this every time, but it feels like the worst place I’ve ever been; but maybe I say it every time because each time takes more out of me.

It looks so small and simple when I write it out like that. But in reality it’s powerful enough to overwhelm everything.

I left therapy feeling absolutely drained. I didn’t know how I was going to get through the day, get through the week to the next session. But somehow I did, one minute at a time. This week has been about survival because sometimes that’s all you can manage – I feel like I’m standing on the very edge of the black hole that is my depression and it’s taking all of my focus to not get pulled in. So while I feel like I’ve achieved nothing, I’ve actually achieved everything. At least that’s what I’m trying to tell myself.

So I thought I’d write down what I do when I’m in this place, where the only thing I can do is survive:

Each day, I get up at seven and go to the gym to swim for thirty minutes. I always want to do more but through trial and error (usually error), I’ve found that this is the amount I can do and still kind of function. If I push on, I end up falling asleep during the day and screwing up my sleeping pattern or I end up in a place where everything makes me cry. So I’m trying to be sensible and build it up slowly.

I get home and head for the living room. I curl up on the sofa, turn on the TV and continue the rewatch of whatever TV show I’m watching (currently The Mentalist). I’m not really watching; it’s more about having familiar, comforting background noise so that the scary thoughts can’t get in. Then I find something that will distract me from all the overwhelmingly difficult things. The activities that work best for me are playing piano and printing, cutting, and sticking pictures from Tumblr into notebooks. And sometimes reading a book works, if I have the concentration to actually read.

And I use those things to get me through the day. I spend time with the animals in my house. I’m lucky enough to have a Mum who works from home so that I can have someone with me when I need to have someone with me. I try to eat well.

And then I go to bed not too late and start all over again.

It’s a hard thing to get my head around and I’m aware that I’m very hard on myself. Because even though I genuinely believe that sometimes all you can do is survive, I find myself getting desperately upset that I’m ‘not doing anything.’ I feel like I’m not trying hard enough – in my mental health, in my music, in my life – and that I should ‘push through it.’ And it’s so hard to think that when I feel so overwhelmed by my depression.

And, outside all of that stuff, someone I care about is in hospital and no one really knows what the outcome is going to be. So I’m trying to manage all the anxiety around that too but it’s like trying to stand on ground that’s constantly shifting.

I think that, if I keep writing, I’m going to end up going in circles: ‘it’s okay to focus on surviving’ to ‘I should be trying harder’ and back to ‘it’s okay to focus on surviving’ and round and round and round. So I’m going to stop here. But regardless of all my anxieties and negative thoughts, I know that it’s okay to focus on surviving. And I hope you know that too.

Taking A Self Care Day

Within an hour or so of waking up, I knew I needed a self care day.

I’d started the day at the gym, swimming in the outdoor pool. It felt good to do but by the time I got out, I was feeling really anxious and fragile. I thought about it and talked to my Mum and decided that I needed a day to look after myself. I needed a little break from life, from all the big, hard stuff.

It was never going to be a particularly busy day. I had planned to do a couple of things in town but there was nothing urgent and I felt really low on social energy. Sometimes it’s worth pushing through, worth practicing opposite action, but sometimes it just makes more sense to focus your energies elsewhere. So I cancelled that stuff and headed home.

On my way, I popped into the supermarket and bought some treats for myself. I’ve been pretty good about eating healthily recently, which I’m really proud of given my issues with food. But we all need unhealthy stuff sometimes and that day was one of those days. I also bought some new notebooks, which always cheers me up.

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Once I was home, I headed to the living room and drew the curtains. I’ve never had white curtains before but I absolutely love it: you can draw the curtains and shut out the world but there’s still good natural light. It’s a little bubble in which I feel safe. I changed into my favourite T-shirt, put on a Harry Potter film for background noise, and got to work on the emails I’ve been avoiding. I was avoiding them because they were stressful but ignoring them only created more stress so I needed to address that. I just needed the right environment – a calm environment – to feel able to do that. And I felt SO much better afterwards. I also got caught up with my diary and my photo albums, both of which are my self care staples.

Another thing I was really worried about was my cat. She was spayed not that long ago and I just had this anxiety that the wound wasn’t healing properly. My Mum was taking our dog to the vet so I asked her to take Lucy with her. I have serious anxiety about going to the vet (probably from when we had to have my previous cat put down) which does need addressing but that wasn’t going to happen in a day and I didn’t want Lucy to suffer because of it. The vet checked her out and gave her a clean bill of health, much to my relief.

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It’s also a really good time to try and practice good habits, healthy habits. I’m trying to build several things into my daily routine (not that I really have a daily routine), including drinking the recommended amount of water, practicing my instruments, and making sure I do something creative. Without a day to stop and take stock of my life, it’s easy to get into a really frenetic cycle that just gets faster and faster until I inevitably crash. So, for me, it’s important to stop.

So there you have it. This is what I do in a self care day. Obviously it’s different each time because of what’s happening in my life but, for me, a self care day involves several things:

  • Calming my environment
  • Addressing anxieties
  • Assessing my routine and my habits
  • Feeling safe and comfortable

Sometimes that means curling up in bed with my cats and my favourite TV show and sometimes it’s replying to all my emails and so on that have built up. Sometimes it’s like an aesthetic instagram post with fluffy socks and candles and sometimes it’s ugly with tears and frustration. We all do it differently and we all do it differently each time. Self care is a very small title for a very big idea.

Travelling As An Autistic Person

Travelling is hard work for everybody. It’s exhausting and stressful and frustrating. But add in sensory issues or anxiety or whatever it is you struggle with and it can be a traumatic experience. Since we are now in the summer holidays and prime travelling time, I thought I’d put together some things that I found helpful to do as an autistic person who struggles with anxiety. I would like to point out (again) that there is a maddening lack of resources (and even simple testimony) for or from the point of view of autistic people. I spent hours searching for something but there was next to nothing; all the advice was for parents of young autistic children. Of course that information is important but it’s very demoralising to an autistic adult – essentially being compared to a child – especially one who was diagnosed late and has had to work so hard, often unaided, to manage their difficulties.

PLAN AHEAD – I know, this is my advice for everything, but it really does help. Struggling with unexpected change is a common trait in Autism and while planning can’t prevent all of those changes, it can make a huge difference. It can also give you a confidence boost, knowing that your actions have prevented a certain amount of anxiety.

SPEAK TO A TRAVEL AGENT – Being able to hand some of the responsibility off to someone else can be really helpful, especially if you have limited energy. You have to prioritise the tasks and if there are people who can help, that is a valuable resource. These people are also more likely to know the ins and outs of booking flights and accommodations etc and will therefore be more equipped to help you get what you need and want to get the most out of your trip.

CHOOSE YOUR ACCOMODATION CAREFULLY – Having somewhere where you can have time out and recharge is so important when travelling. We all have different sensory needs and different things we can tolerate so choosing a place to stay is really important. For example, staying with other people (people I don’t know) causes me a lot of anxiety so when we look through Airbnb, we look at places that allow us to be the sole inhabitants. It won’t be the same for everyone but if you can identify what you need, you can hopefully find somewhere to stay that can be a restful place rather than a stressful one.

WRITE A LIST OF EVERYTHING YOU’LL NEED AND HAVE SOMEONE CHECK IT – Having a list makes packing so much easier and having someone check it for you just reduces the chances of making a stupid mistake like forgetting your pyjamas. Because that really isn’t something you need to deal with when you arrive wherever you’re going. Also make sure that you’ve got any medications or medical equipment that you need because those can be particularly difficult to get hold of, especially if you’re in another country.

PACK AN EMERGENCY KIT IN YOUR CARRY ON BAGGAGE – On the off chance that your bags get lost along the way, pack a change of clothes, some medication, etc in your carry on bag so that you can at least get up the next day and work out a solution.

BRING YOUR OWN FOOD – You’d need to check with your airline but there are certain foods that you can take in your suitcase that won’t cause you any problems while travelling. That means that, at the very least, you’ll have something to eat when you get to your destination. But in my case, it gave me a staple food that I knew I could eat in case I couldn’t find anything I could tolerate. It took away some of the anxiety, for which I was grateful.

PREPARE SPECIFICALLY FOR THE FLIGHT – Apparently, we’re flying in this hypothetical. Many people have fears associated with flying and while I don’t have any magic words of wisdom there, there are a couple of tricks to make it slightly less difficult, especially if you have sensory issues. Take sweets to suck on and relieve the pressure in your ears. Wearing a mask over your face can help if you’re worried about bad reactions to everyone’s germs in one confined space, as well as chemicals from perfumes etc. I’ve also found that a playlist of familiar music helps with the constant noise of flying. And wearing comfortable clothes: you’re most likely gonna look awful when you get there anyway so why bother with anything more than a T-shirt and leggings.

BUILD IN TIME OUT AND DON’T FEEL GUILTY FOR IT – Easier said than done, I know but burning yourself out in the first couple of days doesn’t make for a good trip. So try to take breaks between things and listen to your body: if you need to rest, rest. It will make the whole trip more enjoyable and worthwhile if you do.

As of now, I think that’s all I’ve got. But if you guys have any tips that you’ve found helpful, please let me know!

Moving House When You’re Autistic

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.


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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.

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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.

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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.

To Gig Or Not To Gig

What with the medication and the side effects and the day-to-day consequences of my specific Venn diagram of issues, I have been feeling incredibly unwell over the last several months. It’s been really tough: I’ve been dealing with nausea, dizziness, weakness, shortness of breath, shakiness, and so on. Having spent so much time and effort convincing people that a mental illness is actually an illness, that it isn’t less important just because the symptoms are inside your head, I think it’s easy to forget that these problems also have physical symptoms. I’m guilty of it too and I’m not very good at accepting that reality. But I’ve had to of late. Or, at the very least, try not to give myself such a hard time over it.

But this week I had my first gig in a really long time and I was going to do it, come hell or high water. The hardest thing has been not being able to do the things I love the most, namely singing and songwriting. That makes me a kind of stir crazy that I’m not sure I can put into words. So I did my absolute best to make sure I was ready, in both the health and music sense, and I thought I’d share some of the things I did in case they’re useful to anyone else.

Make sure your expectations are realistic – In the last six months, I’ve been offered a couple of gigs that I knew I just couldn’t do, regardless of how much I wanted to do them. I just wasn’t well enough. But this one was perfect: a short set, a relaxed atmosphere, lovely and supportive people… It was a really good opportunity to do this thing that I love so much without too great a cost to myself.

If it feels right, let those in charge know – I don’t think this is always necessary but when you know it could affect your performance, it can be a good move. It’s my default position to be open and honest and because I write songs about my experiences with mental health and Autism, they find out soon enough anyway but I’m also aware that people can jump to incorrect conclusions when they hear the word ‘Autism.’ So there are pros and cons but it’s something to consider.

Practice in small doses – There’s no getting away from the fact that you need to practice to be ready to perform well at anything. But it doesn’t have to be a huge, daunting black cloud that swallows up your day. I hadn’t been doing much consistent practice because I just felt so awful but I managed to build in fifteen minutes a day. It felt pathetic given that I used to be able to sing and play for hours but I’m trying to just acknowledge the thought and then put it aside. Even fifteen minutes was leaving me shaky but it gave me back some of my confidence and even though I don’t have another gig for a while, I am going to try and keep to this. It gives me more than it takes away.

Physically prepare your body – Make sure you’ve slept enough, eaten enough, and drunk enough water. These can be hard; I’ve struggled with all of them. But try to remember why you’re forcing yourself through it and do your best. It puts you in the best possible position to perform well which is, after all, the goal. Hopefully that motivation is enough.

Do whatever it is that gives you a boost and if you can’t do that, avoid the things that bring you down – I usually listen to music to inspire and energize me before a gig. They’re not necessarily happy songs but they are all high energy or high intensity. That helps me get into the right mindset to perform and that usually overrides whatever I’m dealing with physically.

If you need to stop, stop – I’ve been to multiple gigs where acts have had to call it quits mid set because of a terrible cold or whatever and every single time, the only thing anyone says is how impressed they are that the person got as far as they did. That may not always be the case but would it be better to push through and end up face planting onto the floor when the dizziness turned into fainting? No, it would not. Do what you can for as long as you can and then gracefully retreat.

Now I can’t prove that these things helped but I know they didn’t hurt. The gig went really well and it felt so good to be performing again. A couple of days later and I’m still tired and shaky but if that’s the price, I’m more than happy to pay it. For the first time in weeks, I feel like I’m in sync with my life; my anxiety has dissipated and I actually feel calm. That’s not something I can say very often.

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When You Feel ‘Too Much’

As I’ve said before, I struggle with how powerful my emotions can be. When I’m happy, I feel like every cell in my body is glowing; when I’m upset, it feels like my chest is collapsing; when I’m angry, I feel like I could destroy buildings, and when I love someone, if I could take on all their pain myself, I would do it in a heartbeat. These feelings can completely overwhelm me, making it impossible to think rationally and I’m often left absolutely exhausted afterwards. Occasions like these are closely linked with my autistic meltdowns but they also do occur separately. Over the last couple of years, I’ve gotten better at managing this so I thought I’d write down some of the ways I do this (of course there are still times when something emotionally difficult just comes out of nowhere but we can’t control everything so we work on the things we can).

Allow myself to feel everything – I think it’s so important to actively feel and process your emotions. Ignoring my emotions does me no good. So I let myself feel them and let them settle and usually then, I can feel what the right thing to do is.

Prepare for events I know will be emotional – When I know an event is going to be stressful or upsetting or emotional, I seriously think about how important it is that I attend. If I don’t need to go and I can see that it is going to negatively affect me, I do consider not going. There’s nothing wrong with protecting your mental and emotional health. If I either need to go or think it’s the right thing to go, I make sure that I’m prepared for it. I make sure I have everything I need, I plan the elements that I can (like travel arrangements) to minimise stress, and I do some of the other things on this list. I also factor in the number of people. Big crowds of people can really stress me out so it is something I consider when deciding whether or not to do something and then how I handle it.

Create a safety net – Again, when I know something (an event or period of time) is going to be stressful, I take certain precautions. I’ll arrange an escape plan ahead of time in case I need it or I’ll arrange to have someone I know with me. Most of the time, I’m fine but that’s usually because I know I’ve made these plans and so I’m not worrying about what will happen if something goes wrong.

Build in time to recover – I am easily exhausted, especially at the moment, so I allocate time before and after an event to make sure that I’m as rested as I can be before it and then to give me recovery time after. I struggle with the reality of this: I get very frustrated about tiring so quickly and wish I could jump from one event to another like many people I know can. But even when I’m raging and swearing about this, I do it because I know objectively that I need it.

Writing or journaling – I’ve written about this before but I’m such a believer in writing down your emotions. For me, it gives me somewhere to put them so I don’t have to carry them around with me. I can leave them where they are and move on. It also makes them more manageable because I’ve put words to them; they’re no longer an intangible mess overwhelming me.

Therapy – Talking about how you feel is invaluable and having someone who is professionally trained, someone outside of it all who can look at what’s happening objectively is even better. I’ve been going to therapy for three years now (three years today in fact!) and having that safe space where I can talk about anything is so important to me. I wouldn’t be where I am now without it. I might not be alive without it.

Specific amounts of medication – Certain medications I have taken have had a little leeway about them and my psychiatrist trusts me to use my judgement with them. For example, when I know I’m going to need as much energy as I can get or have really needed some sleep to recover from something, I have increased my sleeping medication temporarily to make sure that I sleep well. Of course, this is something you only do with the guidance of your healthcare professional.

It does still happen. I do still get completely overwhelmed by how I feel but I am better at managing it. I guess these things just make the experience easier on me and everyone else, and less stressful than they were before. Despite all of this though, the strength of my emotions is something I really value about myself. Everything matters. I care with everything in me. It’s hard but ultimately, I wouldn’t want to be any different. Life is bigger this way.

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Backwards Binoculars

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.