Posted on July 28, 2018
I have now been taking Amitriptyline for about six weeks so it’s probably time to take a step back and get some perspective. I usually look at it week by week but this time, that doesn’t really make sense. The effects (and side effects) have been fairly consistent…
I’ve been feeling overly emotional ever since I stopped taking the Venlafaxine and that hasn’t changed with the addition of Amitriptyline. Everything makes me cry, from difficult decisions to TV storylines. And sometimes I cry for no reason at all. After twelve months of feeling incredibly disconnected from my emotions, it’s pretty overwhelming. I’ve described it as similar to turning an old tap: it’s nothing, nothing, nothing and then suddenly, it’s spilling everywhere and I’m emoting all over the place. It feels very extreme and I don’t seem to be able to control it.
But having said that, I am thinking more clearly. Up until very recently, I’ve been struggling to think, to write, to engage at all. I’m not sure I can really explain it: it’s so deeply rooted in feelings rather than words. It’s not really measurable. It’s kind of like trying to run through water: it takes so much energy to achieve so little. And once you get out of the water, moving is so easy and it’s such a relief. I’m so relieved to be able to think again. I don’t feel like I’m back to normal (and I’m still struggling in the songwriting department) but the fact that I can even write this out is a big deal.
One weird consequence of changing medications is that I want to eat all the time. I really hadn’t expected that. When I stopped taking the Venlafaxine, I was eating about one meal a day: I didn’t have much will to eat and the medication made me incredibly nauseous. And now, the urge to eat is there at all times. There have been days where I haven’t been able to concentrate because all I can think about is food. It’s causing me a lot of anxiety: firstly, because it’s a pretty extreme change (and I am NOT good with change) and secondly, because eating doesn’t satisfy the urge. I eat and it’s still there. It’s so frustrating. I’m not quite sure what to do about it.
My depression hasn’t lifted (yet?) but it has definitely shifted and in the reshuffle, my anxiety has come back in full force. I’m anxious all the time. Before, it felt like I was too disconnected from everything to really feel any anxiety but now, it’s almost overwhelming. I feel like I’m constantly running from it, filling my day with distractions to keep it at bay. But then, at night, it takes over. It’s made me anxious about going to bed and there have been more than a few occasions where I’ve accidentally stayed up all night in my attempts to distract myself. The anxieties themselves aren’t new but usually I’d only have to deal with them one at a time whereas now it’s like they’re all present all the time. It’s exhausting and scary and draining.
So it’s neither a miracle nor a disaster. And it’s better than the Venlafaxine. Other than that, I don’t know. I’m feeling very overwhelmed at the moment.
Posted on July 21, 2018
Over the last twelve months, I’ve barely been performing at all. I just haven’t been up to it. My depression has been completely overwhelming and has only been compounded by trying to find a new antidepressant, what with all the side effects: at one of the few gigs I have done, I was getting so dizzy that I couldn’t stand up long enough to play three songs. So it’s been a struggle. But in the last few weeks, I’ve had two gigs – and two gigs that I really wanted to do – and so I’ve had to figure out how to do everything that that involves while still struggling the way I am. It was hard work and the heat didn’t help but I managed to do them and do them reasonably well all things considered.
The first performance was part of Brighton Soup. For those of you who haven’t heard of it, it’s a community event where four people (or organisations) pitch their ideas to improve Brighton and Hove. Everyone votes and the pitch with the most votes gets the money from the ticket sales to make their idea a reality. They invited me to play at their next event and it turned out to be such a special experience. I was so moved by all of the pitches and the general spirit in the room.
I was really anxious about performing – more than I have been in a long time – and my hands were actually shaking. I find that very disconcerting, not being in control of my body. I took a deep breath and tried to imagine it flowing through my body, imagine everything settling. That helped a bit, as did trying to really feel every line of each song as I sang it.
Before this unplanned break from performing, I felt fairly confident on stage and although I did get nervous, it all but disappeared the moment I started singing. It took longer this time but, by the time I finished my four songs, I felt like myself again. I’m not sure I could explain the process – from shaking mess to confident performer – but I could feel it happening and that, in itself, helped with my anxiety.
The second performance was at Disability Pride in Brighton. I got to play last year (despite technical difficulties, it’s still one of my favourite performing experiences) and I was SO excited to get to play again. It’s such a special event.
It turned out to be a pretty challenging gig. The acoustic stage was inside an inflatable structure, which needed a generator to remain inflated. The generator was so loud that I couldn’t hear myself at all. I was reassured by multiple people that it sounded great from the audience’s perspective, but I still really struggled with it. Had this happened a year ago when I was performing fairly regularly, it wouldn’t have bothered me as much because the more you perform, the more it gets into your muscle memory. So, if you’re struggling to hear yourself, you can rely on other parts of your body to judge how the performance is going: how your voice feels in your throat, for example. But during this ‘break’ from performing, that muscle memory has faded and so I was relying heavily on hearing myself. So it wasn’t as easy as it could’ve been. Plus it was stiflingly hot and I’ve always struggled with heat.
But having said all of that, it was one of the most supportive and most generous audiences I’ve ever played for and I felt so, so lucky to be there. I wish I could’ve given them a better performance. My sincerest thanks to everyone who made the event possible; I literally can’t put into words (I’ve been staring at the computer screen for an hour) how much it means to me.
The last few weeks have been a bit of a rollercoaster, but one that I’m really grateful for. I’d sort of forgotten how much I love performing but this has really helped to remind me.
Category: anxiety, event, music, tips Tagged: anxiety, anxiety disorder, asd, autism, autism spectrum disorder, autistic, autistic adult, brighton, brighton and hove, brighton soup, disability, disability pride, disability pride brighton, gigging, music, performing, singer, singersongwriter, singing
Posted on July 18, 2018
Not long ago, I read an article in the Guardian Magazine and I really wanted to share it with you guys. Hannah Jane Parkinson writes about her experience with mental illness, the conversation around mental health, and how we can make real change happen. She doesn’t pull any punches, which can make it hard to read, but that’s exactly why it needs to be out there because even though we are making progress around mental health, there’s still a long way to go. And that’s what this article is about. I really recommend reading the whole thing (you can find it here) because I just cannot do it justice without posting the entire article.
The whole article is important but here are some of the most important points:
“We should normalise the importance of good mental health and wellbeing, of course. Normalise how important it is to look after oneself – eat well, socialise, exercise – and how beneficial it can and should be to talk and ask for help. But don’t conflate poor mental health with mental illness, even if one can lead to the other. One can have a mental illness and good mental health, and vice versa.”
A very important point as it’s so easy to blur the two together.
“Like the rest of the population, I instinctively love the NHS, from the junior doctors to the consultants to the community psychiatric nurses. But, really, if you asked me right now? I hate the NHS. I hate the thin film of skin on its bones. It is incompetent and ailing. I used to blame the system. Mostly it is the system: those never-ending cuts and closures; the bureaucracy; the constant snafus of communication; the government’s contempt for staff.”
This is such an important issue to talk about. I feel exactly the same way. I love the NHS and I’m so grateful that it exists: it has literally saved the lives of several of my friends. I would fight to the death for it. But when it comes to mental health and mental illness, it’s incredibly lacking. I saw so many people who either couldn’t help me because of how the system works or wouldn’t help me because they didn’t understand, or even know of, what I was struggling with. And I know many people who’ve had the same experience. It’s a really upsetting, difficult situation and there’s no simple solution.
“The truth is: enough awareness has been raised. We – the public, the health professionals, the politicians – need to make our words and actions count for more. First, the Conversation needs to be more inclusive when it comes to rarer conditions, and to people whose voices are less loud. Second, we need to recognise that posting “stars can’t shine without darkness” on social media might piss someone off in the midst of desperation and that, actually, anxiety can be a normal reaction and is different from general anxiety disorder, a serious condition. That feeling down is not the same as depression.
Then, action. Donate to Mind; volunteer as a Samaritan. Vote for politicians who aren’t going to decimate our National Health Service or who support policies that lead to greater incidences of mental health problems (because it’s not just physical; society and environment plays its part).
What does the government need to do? Hire more staff, and then more. Enough staff to provide a service that meets individual needs. That means better working conditions and pay, and not piling all funding into a single type of therapy or care path. Clinical commissioning groups need to spend money earmarked for mental health on mental health. Prescription charges for long-term conditions should be reviewed. Funding and research must be increased.”
One of the things that, I think, sets this article apart from others I’ve read is that it includes concrete steps that we can all take. So often, articles talk a whole lot about how we need to create change but then they finish without actually telling us how to do it. I finished reading this article and felt empowered, like I could actually make a difference when, usually, the situation makes you (or, at least, it makes me) feel overwhelmed and hopeless.
These are some of the big points made in the article. But as I said, go and read the whole thing. It’s a really important piece of writing.
It’s taken me a really long time to write this out because the article talks about issues that make me really emotional and because there are so many quotes that I could pull out and talk about. While our experiences of mental illness are very different, there were so many things in this piece that I related to, this one maybe most of all:
“So I am a newspaper journalist – for now. But I don’t know how long for because the illness might grip itself around me so tightly that it cuts off everything I love and hold dear, and my ability to lead a normal life.”
Thank you, Hannah Jane Parkinson, for writing such an important, moving piece.
Category: mental health, response Tagged: hannah jane parkinson, mental health, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental health in the media, mental illness, mental illness awareness, national health service, nhs, response, the guardian, the guardian magazine
Posted on July 14, 2018
At the beginning of the year, I set myself a handful of goals for 2018 and as we’ve just hit July, I thought it might be wise to have another look at them to see how or whether I’m achieving them. There’s been a lot of hard stuff so far, which has pretty much dominated my life so I’m not super optimistic about my progress but let’s have a look…
WRITE MORE SONGS
Technically I have done some writing so I have achieved this but I feel like I’ve achieved it in the worst way possible. I’ve been struggling so much with my concentration, my motivation, and my general cognitive ability that writing has been gruelling at best. Throw in the recent period of struggling to actually put sentences together and you can imagine that I haven’t been getting very far. It’s hard to feel good about the songs I did manage to write too. So, all in all, it’s been a bit of a mess, but I’m cautiously (VERY cautiously) optimistic about this new medication. At the very least, coming off the Venlafaxine has allowed my brain to start functioning again. It’s overwhelming at times – it feels like a firework display in my head and I’m desperately trying to look at everything before it disappears – but it’s a thousand percent better than the alternative.
Yes! Yes, yes, yes! Invisible is out! My very first single is out in the world. It’s been very surreal and weird and I thought I’d feel less stressed once I had music out in the world, but nope. Even more stressed. Anyway, I did it. I (with the help of some very awesome people) jumped the first hurdle. That’s a big deal. Now, on to the next hurdle.
FIND THE RIGHT MEDICATION
Well, I found a lot of wrong ones. That’s all I’m sure of right now. Hopefully the new one will be the right one.
BECOME MORE INDEPENDENT
This is a tricky one because I’ve been mentally (and so physically as well) worse than I have been in a really long time. So it’s not really been the right time to try and be more independent; I’ve had a hard enough time being functional at all. But having said that, there have been a few things of note. I have been slightly more adventurous with food: I’ve been trying new things, which has always been a struggle for me, so that’s progress. I also discovered the Deliveroo app (I know, I’m way behind the times), which has helped me to be less dependent on other people. I’m not sure it’s exactly the same thing as being more independent but again, it’s progress. And finally, I found an app that makes sorting cabs easier. I have been so desperately low on energy recently that I’ve been relying on my Mum and her car so having that app has made things a bit easier.
WORK ON BEING HEALTHIER
Who knows with this one… When I was taking Phenelzine (and eating badly at university), I gained a lot of weight, all of which and more I’ve lost over the last nine months or so. That, I think, has mainly been due to the nausea I’ve been experiencing as a side effect from various medications, as well as my depression affecting my appetite and will to eat. I’m aware that that’s not the healthiest way to do it but it is what it is. I wanted to get back into a rhythm at the gym and do more swimming but I just haven’t been able to; I haven’t had the energy and I haven’t felt up to being surrounded by noise and people and life. Honestly, I have no idea how this one is going to for the rest of the year. I’ve spent the last six months or so in survival mode, trying to make myself eat the bare minimum, so motivating myself to be healthier hasn’t even felt possible.
READ MORE BOOKS (MORE THAN FIVE)
I feel quite good about this one. Although I’ve really struggled with my concentration and motivation over the last six months, I have rediscovered how much I love reading, which is so, so nice. I’ve read six books so far (what?!) and now that my brain feels a bit clearer, I’m really looking forward to reading more. I even have a list!
IMPROVE MY MUSICAL SKILLS
I have made zero progress on this one. I have just been too unwell to do anything about it. Plus, after the house move, I no longer have a piano, which obviously makes practicing the piano harder…
GO THROUGH MY POSSESSIONS
As I said when I set this one, I was in the process of moving house so I was going to be forced to do this and I was. I donated at least a third of my clothes to charity, quite possibly more, and threw out a fair amount that was practically worn out. I’ve bought my own desk (the one I had was borrowed), and replaced my bed: I HATED (and had hated for a long time) the one I had and the new one is much more practical with drawers underneath for storage. So I’ve definitely achieved this one and there’s more to go: there isn’t enough space for all my stuff in my new room. Throwing away things that I’m emotionally attached to (or have been in the past) is really hard for me so it’s been a big deal but I’ve done well so far and feel good about it going forward.
So, overall, I think I could’ve done worse and, of course, there are still six months left of the year. That’s plenty of time.
Category: book, depression, food, medication, mental health, music, treatment Tagged: actuallyautistic, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, books, depression, medication, mental health, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental illness, mental illness awareness, moving house, reading, singersongwriter, songwriter, songwriting
Posted on July 11, 2018
From the age of about two years old, I’ve been going to a little town in Norfolk almost every year on holiday. While I was in school, we – me, my parents, and our dog – would go during the October half term but in recent years, we’ve been going in the early summer, before the schools break up. We stay in a caravan less than a ten-minute walk from a stunning sandy beach and I absolutely love it.
Some people find it strange that we always go back to the same place but as far as I can tell, there are two basic types of holidays: going to explore and going to relax. Both have their pros and cons. This is definitely a relaxation holiday. It’s familiar and calm and beautiful. It’s a bubble away from reality where I can just be, in a way I can’t at home. And, of course, familiarity and Autism go together like fish and chips. We also ate a lot of fish and chips…
I’ve been back from Norfolk a few days and I just really wanted to write about it. After having had so much change with the house move, the changing of medications, and the decision to keep my cat’s kittens, it was really nice to be somewhere so familiar and safe. And as much as I love the cats, I really enjoyed having some dedicated dog time with Lucky. Because he’s now so arthritic, we have to be careful to not over walk him (his enthusiasm far exceeds his physical ability so he’s not much help there) but we manage a couple of trips to the beach, which he loved. He can’t really run anymore but there was a fair amount of skipping, one sure-fire way to know he’s enjoying himself. It’s very cute.
The beaches in Norfolk are just beautiful. The closest beach, the one we jokingly call ‘our beach,’ is particularly close to my heart. Every year, I step onto that beach and everything just clicks into place. It’s subtle but I suddenly feel like my head’s a little clearer, like I can breathe more easily. Something inside me settles. It’s like I leave a little piece of myself there, that I miss all year round, and then, when I get back, it’s an overwhelming relief. I’ve spent some glorious evenings on that beach.
It was ridiculously hot all week so I spent a lot of time inside with all the windows and doors open. I’m really not good with heat. It’s something I’ve heard from quite a few other people with Autism; I wouldn’t be surprised if there’s a link, given the hypersensitivity that often comes as part of being autistic. Anyway. It gave me the opportunity to do a lot of writing and catch up a bit with my diary (if you’ve read this post, you’ll know that my writing can be quite compulsive). That felt really good. I also rewatched some of my favourite films and played chess. The latter is something I haven’t had the concentration to do for months so that felt like a victory in itself, much more exciting than actually winning at chess.
Being there doesn’t eradicate my anxiety entirely but it does a pretty good job of dampening it. Sometimes anxiety feels like this constant vibration that I can’t stop, can’t take a break from. But in Norfolk I can. I still get anxious about specific things but that relentless vibration momentarily ceases. And that’s such a relief.
Posted on July 9, 2018
Posting on a Monday?! What?!
I know my posting schedule has gone out the window recently but I really want to share a couple of videos with you guys.
I’ve talked about Claire Wineland and her videos before and I’ve had this one bookmarked for ages. Claire is twenty-one years old and has Cystic Fibrosis (lots of useful information here). She’s spent most of her life raising awareness about CF and created her own non-profit organisation to support those with CF and their families. She’s incredibly wise and eloquent and even though we’ve had very different experiences of life and of health, I really relate to a lot of what she says. She’s inspired me a lot.
Just over a month ago, she was put on the transplant list for new lungs and she made a video where she talks about how that feels and what it means. And while she’s talking about transplants and new lungs and things that many of us don’t have direct experience of, the way she talks about living is universally relatable. And important.
“Transplant, for me, isn’t really just about getting new lungs. It’s not about being healthy, it’s not about fixing myself. For me, transplant is about what it means to choose to live, not in an ignorant way. I don’t believe that once I get lungs and once I’m better that everything else is gonna be better. I don’t believe that it’s gonna save me or fix me or make me any more of the person that I wanna be. I think that getting new lungs, for me, is like a representation for what it means to choose to be here, on this planet, and to just choose to try, to try to show up and be conscious and to be aware of ourselves and try and actually give something of ourselves, to not spend our whole lives just resentful of being alive, because it’s so easy to be resentful of being alive and I get it. I completely get it. It’s so hard not to fall in the trap of seeing that every single thing you choose to do in life, no matter which way you go and what you choose to do, there’s always just gonna be this… this innate pain in life, you know? There’s always gonna be someone or something that’s gonna come and yank the rug out from under your feet, no matter how healthy you are, no matter how rich you are, no matter how perfect your life may seem, or how much you’ve worked for what you have. There’s always something right around the corner that is going to come and make a fool out of you and that’s life. And it’s terrifying. And one of the things I’ve found that’s the most difficult about choosing to get new lungs is just… It opens up this well of want in me. Like, I want to be alive and I want to have the time and I want to have the energy to actually make something of myself, give something, like, make something I think is genuinely valuable, not just something to make myself feel better… I want to actually give something… and that’s really scary, because once you want something, then it opens you up to just that huge fear of failing. Like, the moment you admit that you want it then you have to admit that you don’t want to fail and you have to look at how painful it would be to lose it. So there’s just so many different layers to this. Like, it’s not just about lungs.”
The stuff about wanting to live and how scary that is really hits home for me at the moment, at this point in my mental health journey – I hate describing it that way because it sounds so quaint (and depression is anything but quaint) but I haven’t found a better word for it yet. Depression can make living feel like a struggle at best and unbearable at worst and I’m just coming out of the worst I’ve ever experienced. And knowing that someone in a different country, in a different situation, with a different life experience feels the same fear that I do… knowing that is comforting. It makes me feel less alone and it makes me feel part of something bigger than just me.
“It’s all very human, and it’s all very real, and it’s all very scary. And I have no idea what’s gonna happen.”
This video and these quotes have been in the back of my mind and on my list to write about for a while now. I just hadn’t gotten around to pulling this post together until Claire posted her most recent video on Saturday night.
I feel for her, so desperately, especially when she talks about how there’s so much more she wants to do. I can only imagine what this is like for her. It makes me so angry and upset that anyone should have to go through such stress while already dealing with such difficult circumstances: illness, treatment and medication, hospital stays, and so on. The gofundme link is here, in case you want to donate or share.
I just wanted to share her videos and her words with you guys. Her perspective on life and living has given me a lot to think about and hopefully it’s the same for you.
And Claire, just on the off chance you see this, thank you. Thank you for your words, thank you for making me feel understood even though you’ve never met me. Thank you for making me laugh and for making me cry. I’m grateful to be able to help, even if it’s in a tiny way and in a tiny amount. I have no doubt that you will continue to do incredible, important things.
Posted on July 7, 2018
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!
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 mental health issues. I’m also a singer-songwriter so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.