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.
Category: anxiety, autism, body image, food, mental health Tagged: actuallyautistic, asd, autism, autism awareness, autism awareness week, autism diagnosis, autism resources, autism spectrum disorder, autistic, autistic adult, eating, food, food sensitivity, health, senses, sensitive, sensitivity, sensory, sensory overload
Posted on February 17, 2018
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.
Category: anxiety, autism, depression, event, medication, mental health, music, tips, Uncategorized Tagged: dizziness, fatigue, gig, gigging, health, ill, illness, medication, music, nausea, performer, performing, shakiness, sick, sickness, side effects, singer, singersongwriter, singing, tips, tired
Posted on February 10, 2018
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.
Category: anxiety, bpd, emotions, mental health, therapy, writing Tagged: actuallyautistic, asd, autism, autism spectrum disorder, autistic, autistic adult, borderline, borderline personality disorder, bpd, emotional, emotions, feelings, health, journaling, medication, rest, therapy, tips, tired, writing
Posted on December 24, 2017
A while back, my social media feeds were flooded with posts about being grateful and appreciative and thankful. Yes, it was Thanksgiving. I live in the UK and I find it a bit of a weird experience seeing so much celebration and festivity in my online world and have none of that reflected in the world around me. But I do think it’s important to take the time to feel grateful for what I have and I always feel especially grateful at Christmas so I thought I’d write a short post about some of the things I’m grateful for, some big, some small, and some strange.
My family, my friends, my people – This year has been a particularly difficult year but if it’s taught me anything it’s how incredible the people in my life are. Time and time again, they’ve come through for me, supported me, and encouraged me and I couldn’t be more grateful. A few years ago, my relationships felt a bit all over the place (especially my friendships: old ones were separated by university and new ones were still tentative) but this year, I feel like I’ve fallen in love again with all the lovely people in my life, from the people I talk to online to my friends (both from university and from before) to my closest family. And I’m trying my best to make sure they know it.
My therapist – My god, I’m so grateful for my therapist. Not a day goes by that I don’t think about how lucky I am to have her. I can’t even put it into words. Having someone I can trust with anything and everything is incredible (although it’s very scary for me to feel so reliant on a person). I’ve told her things I never thought I’d tell anyone and she’s helped me through things I never thought I’d get through. I can’t thank her enough for all she does.
My animals – I’ve already written about my animals so I won’t ramble on too much but they deserve a mention here. They bring me such joy and help me so much with my depression and anxiety. I’m so, so grateful to have them in my life.
My final year at university – My first two years of uni were really, really hard. They were a real struggle. I learnt a lot and I met some great people but the bad stuff going on often overwhelmed the good stuff. But third year was a blast. I loved it. I had a great group, some great tutors, and I wrote some great songs. I also built some great friendships. I think the best way to describe it was that I was finally feeling in sync, with everyone else but also with myself. I was working on all the things I wanted to work on, I was working with some awesome people, and I was getting some really good responses. It felt so right. Leaving was really hard but having such a great last year means I look back on the whole experience positively even though there were some really hard times.
My health – My health is a struggle and it’s something I wrestle with daily but I am so grateful that it’s not worse. I don’t think it’s helpful to compare your health situation to others’ because someone else’s experience doesn’t mean you aren’t allowed to feel and struggle with your own. I also think it’s unhealthy to focus solely on the positive and repress your feelings about the negatives. But I do think that it’s important to keep a sense of perspective. I’m grateful for all the things in my body that do work. I’m grateful that I do have days where I can walk the dog, go out with my friends, and stay out late. I’m grateful that my mental functioning seems to be getting better. I’m grateful for how resilient my body is. I need to learn from that.
The benefits I receive – I want to write a more in depth post about benefits and the process of getting them because it really can’t be explained sufficiently within this post but I really wanted to include this because I am so very grateful to get the benefits I do. It’s something that just removes one layer of anxiety and that’s such a big deal. I’m also really grateful for the Christmas bonus. I haven’t had a Christmas where I’ve been on benefits so far and the extra £10 with the recent payment just made me so happy.
Clear skin – My Mum laughed when I told her that I was putting this on the list but I am so, so grateful that, for the majority of the time, I have clear skin. It was something I was so insecure about as a teenager. Looking back at the photos, it doesn’t look too bad but I remember so vividly how upset I’d get over it so I’m grateful for every day I look in the mirror and see clear skin. I don’t take it for granted.
Redbull – Redbull should sponsor me. Seriously. I’m actually drinking Redbull as I write this. I only discovered it recently (I’d had to avoid caffeine while taking my previous medication) and it’s been a very exciting find, especially while I’m struggling so much with low energy levels. It gives me such a boost; it makes me feel like a normal, functional human being, not like one who has to constantly assess her energy levels and emotional state. It’s like the fog of fatigue rolls back and I can actually feel all the other emotions, like excitement and joyfulness. I’m aware that I shouldn’t drink it too often but while I’m following every other avenue to improve my energy, it’s a really good back up plan for when there’s something I need to do.
Agents of Shield – Another one that isn’t life changing but oh my god, I look forward to every new episode. I love it. It’s definitely my favourite TV show. For a long time, I avoided everything superhero-related because it just made me miss my Dad but almost ten years on, it’s something that feels really special. I can imagine the conversations we’d have, the debates over how the storylines played out. I can almost hear his voice down the phone, talking me out of a panic attack by saying, “Think of Daisy. What would Daisy Johnson do?” It used to hurt but now that world makes me feel close to him. On a different note, I love it because I find watching it makes me feel empowered. It reminds me that, superpowers or not, doing good – being a hero – is about the choices you make. It’s a weekly reminder to try to do better and to be better. Plus Chloe Bennet (who plays Daisy) is just freaking awesome. The whole cast is.
Taylor Swift – Yes, I am grateful for Taylor Swift. People have made fun of me for liking Taylor Swift for as long as I’ve been a fan but I honestly do not care. She is a fantastic songwriter and I love her music. I’m grateful to have a new album this year but the thing I’m really, really grateful for is who she is as a person. Since announcing the new album, she’s met literally hundreds of people who’ve always wanted to meet her; she’s made hundreds of people’s dreams come true, not for financial gain, not for the publicity, but because her fans matter to her as much as she matters to her fans. How lovely is that? I think that’s amazing. I’m also grateful to her for using her platform to spread awareness about sexual assault, as I am grateful to every person who has done the same. We are not obligated to share our traumas; our only obligation is to ourselves and our healing. Sharing difficult experiences and opening yourself up to the opinions of others is so brave and should never be undervalued. Her level of fame makes any potential fall out worse but it also means she made a huge impact: the RAINN hotline saw a 35% increase in the number of calls they received after she won her trial. She has so much power to affect people’s lives and she strives for that impact to be a positive one. So yeah, I’m grateful for Taylor Swift.
I could keep going – there’s a lot I’m thankful for – but I’ll stop there. I’m wishing you all a safe, happy, and healthy Christmas and I’ll see you on the other side.
Hey! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as a number of other mental health issues. I’m also a singer-songwriter so I’ll probably write a bit about that too.