Trying To Get Tickets To The ERAS Tour As A Disabled Person

Posted on August 27, 2023

TW: Mentions of ableism, severe depression, suicidal thoughts and ideation.

Us international Taylor Swift fans have been waiting for The ERAS Tour to come and visit us for months and finally, we have dates! (Through some bizarre twist of fate, the announcement, the registration, the extra dates announcement, and the opening of resale tickets all occurred while I was at therapy, so I don’t think it would surprise anyone to learn that I rescheduled the sessions that were booked for the days of the actual ticket sales – thank god for my very understanding therapist).

So the tour is coming – possibly the most exciting event of next year – but before I could be excited about that, the ticket sales had to be navigated. And given how horrific the US sale had been, I was – at the very least – very apprehensive. I hoped that, after the previous fiascos, this sale would be smoother but, having witnessed the anxiety and misery and disappointment, I couldn’t help but worry that this sale would be just as bad, with the added hurdle of trying to get accessible seating.

Having pre-ordered the Midnights album during the period in which it granted you a code for tour dates, I had access to the ticket sales a week earlier than the ticket sales for which you had to register. That was definitely helpful, in some ways at least. In the week leading up to this first sale, my Mum and I spoke to the Wembley accessibility people several times, trying to get the most accurate information about getting tickets through them. My Mum had to actually make the calls since making a phone call is something that is a real struggle for me as an autistic person, especially when the phone call has high stakes or I have anxiety about it (I can handle other forms of communication – I just can’t gather enough information from just a voice to keep up a conversation in real time and the anxiety of screwing up just makes the processing worse and the whole thing snowballs until I become non-verbal or descend into a meltdown). So Mum made the phone calls and we tried to get the clearest picture we could, but the information changed with every call and, on the Friday (with the tickets going on sale on Monday morning), they still weren’t sure of anything. They were really only certain of one thing: they were very, very aware of how high the demand was, part of the reason why they were so reluctant to commit to any of the information they did have. It was very stressful and I spent the weekend consumed with anxiety over whether or not I would be able to get tickets to even one show, having hoped to go a couple of times with different friends and family members. The dread I felt at the thought of not getting to go was paralysing.

Most people don’t seem to understand the intensity of my emotions. Technically, it could be part of being neurodivergent or mentally ill but it’s always just felt like part of me: it’s me, hi, I feel everything at 500%, it’s me. I feel every emotion with my whole body; it’s just always been that way. And people have always been weird about it (especially when it comes to loving Taylor actually – I’ve been mocked and harassed for years for being a fan of hers, often for reasons that completely baffle me). It hurts – and that hurt is very intense too – but I’d always rather love things, regardless of what people say. Taylor and her music (and seeing her live) are and always have been so important to me, getting me through hard times and bringing me such life affirming joy; as hard as it can be, it doesn’t surprise me that the thought of not getting to see her live after waiting so long feels like a lifeline being cut.

Monday morning, I woke up so anxious that I couldn’t eat. I couldn’t do anything. When the time came, when the online queue and phone lines ‘opened,’ Mum rang the accessibility number. It rang and rang until it went through to an automated message before hanging up. We tried again. And again and again and again. We kept getting the same message and we were still calling when the queue moved from the first of the Wembley shows in June to the first of the Wembley shows in August in the early afternoon. We were still calling as the clock inched towards five and the closing of the phone lines. I’d been sitting with Mum, unable to do anything and on the edge of the meltdown all day. I was exhausted, in pain, and swinging between misery and rage, in tears over how awful the experience was. It was (and still is) so desperately distressing that it seemed literally impossible to get a ticket for accessible seating, to access the concerts as a disabled person. It just felt – and feels – like yet another part of the world telling us that we’re not worth the effort, that we don’t matter as much as everyone else. It’s a deeply hopeless feeling. And as if the situation wasn’t hard enough on its own, I’ve been struggling with suicidal thoughts and impulses for a while now and between the dwindling possibility of getting accessible tickets and the crushing display of ableism, those thoughts were only getting louder and more difficult to block out.

Tuesday was more of the same, just with an awful day and awful night’s sleep under my belt. Mum and I were glued to the sofa again, calling over and over and over. Morning turned into afternoon, another show disappearing. Wembley Stadium had tweeted a response to the criticism on social media: “Due to unprecedented demand waiting time for Taylor Swift | The Eras Tour Disabled Access is longer than normal. For those unable to wait on the phone we have a call-back system.” Seeing that filled me with the urge to throw my phone across the room: when we’d spoken to them, the ‘unprecedented demand’ was the only thing they had known about. I wanted to scream.

The night before, a friend had suggested looking at Twitter to see if other disabled fans had posted about having a similar experience. I didn’t remember her suggestion until the afternoon but once I did, I went searching and found my experience repeated over and over. On one hand, it was reassuring because I wasn’t alone but on the other, here was this huge number of people who weren’t able to get tickets because Wembley’s accessibility department wasn’t doing its job. I spent the afternoon tweeting back and forth with this group of people: trying to find a better way, sharing different phone numbers that different people had had success with, updating each other on our progress, sharing the successes and the miseries and frustrations. One fan, Faith Martin (she wrote a great piece for Metro about what the experience was like was disabled fans), spent an amazing amount of time trying to help people get tickets, long after she got tickets for herself; I really appreciated her support and encouragement. (I’m sure there were other fans doing this, helping other fans for other UK venues but Faith is the person I saw doing this, the person who helped me.) Having that little community in such a fraught time was comforting; I’ve never had anything like that before.

Eventually, just before the lines closed for the day, we got through and were finally, finally able to get tickets. When my Mum hung up the phone and triumphantly announced that we had tickets, I collapsed back onto the sofa and burst into tears. I was overwhelmingly relieved but also totally overwhelmed by the exhaustion and anxiety making my hands shake, by the excruciating pain in my limbs, back, neck, and skull. But most of all, I was just completely overwhelmed by how hurt I felt by the ableism of the process (especially compared to the ease of the online general ticket sale), by how little my very existence meant to them even though I was paying them for the space I would be inhabiting. God, you know it’s bad when you’re paying to take up space and still no one cares because of the ‘inconvenience’ you present. I was pleased – of course, I was – but all the other big emotions were drowning it out. I knew I’d be thrilled later on, once I’d recovered from the unbelievable stress of those two days.

And it’s true. It took a couple of weeks to fully return to my day-to-day state but now that I have, I am really, really excited. But having said that – and I know I’ll say it a lot over the next year – I still feel hurt by how Wembley handled it all, how they treated their disabled patrons. I’m hurt and I’m angry and if there was anything I could do that would affect any change, that would be more than me simply shouting into the void, then I’d do it. Without a second thought. But if there is, I have no idea what it would be. So here I am, sharing my experience about, if only to remind people that this sort of thing – and worse, of course, much, much worse – happens every day. Even the processes set up supposedly to help us are failing us, and worse, hurting us.

I’ll leave you with what I tweeted after I got my tickets: “I knew that getting #ErasTour tickets would be hard but I didn’t expect the level of ableism. By making it so much harder for us, they’re essentially telling us that we aren’t as important as everyone else, that we don’t matter as much, and that was deeply, deeply upsetting.”

And here are some of the articles that have been written about this, including the experiences of several disabled fans. (Note: please don’t read the comments sections of these articles because the dismissive, ableist bile coming from people – most of whom are totally missing the point – is honestly painful and there is no reason to subject yourself to that if you don’t have to.)

(1) (2) (3) (4) (5)

Category: about me, anxiety, autism, chronic fatigue, chronic pain, depression, emotions, family, heds, meltdowns, mental health, music, special interests, suicide Tagged: ableism, ableist, accessibility, accessible seating, anxiety, asc, asd, autism, autism spectrum condition, autism spectrum disorder, autistic, autistic adult, bullying, carer, carer's ticket, chronic fatigue, chronic fatigue syndrome, chronic pain, companion ticket, concert, depression, disability, disabled, disabled access, eds, ehlers danlos syndrome, emotional rollercoaster, enjoyment, eras tour, eras tour 2024, eras tour london, exhaustion, fan, fans, fatigue, fibromyalgia, fun, heds, hypermobile ehlers danlos syndrome, institutional ableism, joy, live music, mental illness, mum, music, pain, phone calls, recovery, rest, safety, special interest, stress, suicidal ideation, suicidal thoughts, swifties, taylor swift, tension, therapy, ticket, ticket sales, tickets, twitter, wembley, wembley stadium

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I Believe In Nashville

Posted on April 17, 2022

Apparently I’m incapable of doing things halfway: I went from barely leaving the house to going on an almost three week trip to the US. The songwriting festival, Tin Pan South, was starting up again and I’ve been going every year since 2016, to write songs and network and just learn from the best songwriters in Nashville. I was utterly terrified – about the COVID risk, about how even a minor bout of COVID could affect the trip, about all of the uncertainty and anxiety that I was going to feel every day without having a true safe place to return to and recharge, etc – but I felt like I had to go. My Mum and I were as careful as we could be: we wore masks pretty much all of the time (being autistic makes that hard but I did the best I could) and we went through so much hand sanitiser. I was practically showering with it. I cried pretty much every day (whether from anxiety, stress, or exhaustion, I don’t know) and I was on my knees by the end of the trip but it was amazing and a lot of really cool things happened.

BOSTON

We flew from London to Boston, which was relatively simple – my anxiety aside. I’d already burst into tears at least twice before we actually left the runway. I was very anxious about COVID (and there were so many things that already made me anxious that now had an entirely new context because of COVID) and about flying (it’s not my favourite thing) and I think I was just really overwhelmed by everything ahead of me. The flight felt ridiculously long and while I was relieved to be back on the ground (and eventually into the hotel where we could take the masks off after wearing them for so long), I was immediately overwhelmed by being abroad, by all of the differences. Getting to the hotel room and being able to just collapse was a great relief.

Months earlier, I’d bought tickets to the Bleachers show where they’d be playing their album Strange Desire from start to finish in the hope that I’d be able to combine it with the Nashville trip – the date was, after all, pretty close to when Tin Pan South usually took place. So I chanced it and by some stroke of luck, it worked out and we made our connection in Boston with a day in between to go to the concert. I had no idea what the disabled accommodations were going to be like but, on the whole, the venue and staff were great, which made the concert possible for me and it was incredible.

I still don’t know if I can describe the concert, beyond saying how amazing it was. Charly Bliss were a really fun opener and I’m very excited for them to release the new songs they played; those were the ones that I really got into. And Bleachers were just fantastic. Jack Antonoff in particular was just like an endlessly ricocheting ball of adrenaline; I barely got any photos of him that were in focus because he was just in constant motion. It was so incredibly special to hear songs like ‘Wild Heart,’ ‘I Wanna Get Better,’ and ‘Like A River Runs,’ all of which I love so much. It still feels kind of unreal, like I can’t quite believe I was really there.

The next day, we struggled up – I felt completely wrecked by the concert – and caught our flight to Nashville.

NASHVILLE

When we got to Nashville, we took a couple of days just to rest and to allow me to collect myself. I was exhausted and a few days holed up in my Airbnb – where I didn’t have to worry about wearing a mask or the risk of COVID – was absolutely needed. And while there are always things to see and exploring to do in Nashville, we’d decided to keep our excursions to our highest priorities; we wanted to minimise the risk of exposure to COVID so that we could do all of the things that we really, really wanted to do.

So those first few days were spent chilling out, watching TV, catching up with my diary, and listening to Maren Morris’ new album, Humble Quest. I think I’ll forever connect it with Nashville now. Between listening to it as I flew into the city and watching her Amazon Prime show that first weekend, the album’s setting will always Nashville.

The show was great and I cannot wait until she comes back to the UK. I’m already in love with this album.

SONG SUFFRAGETTES

My first show back was a big one: Song Suffragettes’ 8th Anniversary show. Usually a Song Suffragettes show consists of five girls and they go around three times, performing three songs each (in total), before closing the show with the cover song performed together. But for this song, there was the first round of five girls who each performed twice plus a cover, a break in which THE Nicolle Galyon interviewed THE Kelsea Ballerini, and then a second round with five more girls who each performed twice as well as a cover song. It was a long but very excellent show.

The first round consisted of Ava Paige, Autumn Nicholas, Kalie Shorr, Ava Suppelsa, Lanie Gardner, and Mia Morris on percussion (she also played a song in this round – a rewrite of Fountains of Wayne’s ‘Stacy’s Mom’ from the point of view of Stacy, which was hilarious). They were all great but, as I think is the case with every songwriters’ round, there were some that resonated with me more than others. I’ve known and loved Kalie for years so I always know she’s going to be my favourite (if you haven’t listened to her music, please check her out – she’s very special) but I didn’t know the others and found I particularly enjoyed Ava Paige’s songs too. I also loved the cover they did, ‘abcdefu’ by GAYLE, and I’ve had it on repeat ever since (along with ‘Humble Quest’ by Maren Morris).

After the cover, they cleared the stage and set it up for the Nicolle Galyon and Kelsea Ballerini interview. They are both just such cool people and have achieved some incredible things; it was very inspiring. Nicolle asked some really interesting questions and Kelsea shared a lot of fascinating, inspiring, and encouraging stories and advice. And then they played a couple of songs that they’ve written together – ‘i quit drinking’ and ‘half of my hometown’ – as well as telling the stories behind the writing of them. It was a really, really cool experience and I feel very lucky to have been there.

The second round was made up of Emily Brooke, Caroline Watkins, Lauren Hungate, Madeline Merlo, Peyton Porter and, again, Mia Morris on percussion. I particularly liked Emily Brooke; I’ve seen her before and I really like her music. And they all told great stories about what inspired the songs.

It was an amazing show and experience and it was a great reintroduction to Nashville. I also got to reconnect with the people I know at Song Suffragettes (and those who I’ve spoken to online but not met) and that was really, really nice. I was kind of scared that, after three years away, the previous years of building relationships might have ended up meaning nothing but that completely wasn’t the case and I’m really grateful for that.

TIN PAN SOUTH

As I said, Tin Pan South is the big reason for coming to Nashville and I had some amazing shows on my list. There were some very tough choices too, great rounds that I struggled to choose between. But I think I made the right choices, for me, for this trip.

I could write about every single show in a ridiculous amount of detail but then we’d be here forever. So here are my highlights of the week…

Caylee Hammack – I first saw Caylee years ago and she was so good that I became a fan on the spot. She’s fantastic, both as a singer and a songwriter; I loved her songs then, I loved her album, and I loved the songs that she played during the round. And she’s hilarious. She’s also absolutely lovely: we spoke before and after the show and she was just such a sweetheart.

Nicolle Galyon – One of the rounds I went to was the Songs and Daughters round, made up of writers from Nicolle Galyon’s female focussed label, Songs and Daughters. Nicolle was fantastic (although I wish she’d played ‘We Were Us’ but then she does have a huge list of amazing songs to choose from) and even though, I’m kind of in awe of her, I did have a short conversation with her after the round and she was really lovely.
Madison Kozak – Madison was on the same round as Nicolle Galyon. I first saw her years ago and fell in love with her and her song ‘First Last Name.’ She did play that one, which made me very happy, and I loved every other song she played on the round; I can’t wait for her to release them.

Emily Shackelton – I’ve been a fan of Emily Shackelton for years so I was very keen to see her live again. I love her songs and she’s got a gorgeous voice; I’m so excited for her to release new music soon. I got to speak to her briefly after the show, which was really nice. I hadn’t gotten into the groove of talking to new people again (remember, COVID aside, I’ve just come off three months plus of being home alone while I tried the ADHD meds) so I felt kind of awkward and like I’d forgotten how to do the whole social thing but she was kind and generous with her time and I really appreciated that.

Kalie Shorr – The whole round made me laugh harder than I ever have at a Tin Pan South show and Kalie was just hilarious. I loved every song that she played and I loved the stories she told about them so that even the songs I already knew felt different because of the new insight. She’s a brilliant writer: she’s funny, smart, and empathetic, which makes for some really unique and just beautiful songs. I first met her in 2016 and we’ve talked on and off over the years but it’s usually through social media since we’re on different continents so it was really nice to connect and have a real conversation face to face.

Natalie Hemby – Natalie is one of my favourite Nashville people. She’s one of my songwriting heroes, she’s a wonderful person, she’s hilarious, and she doesn’t take shit from anyone. She was on her last song, I think, after a stunning round when she gave me a shout out in front of the whole audience and all of the ridiculously amazing and deeply respected songwriters on stage. She introduced me and said some really lovely things, which was just so sweet of her. (She actually invited me to sing too but my Autism brain short circuited due to the sudden change of plans and I couldn’t do it. I don’t think I could’ve told you the lyrics to literally any song at the moment, including songs I have personally written, let alone the song she was playing at that moment. I’m trying not to kick myself for it – it’s just how my brain is.) We got to catch up afterwards, which was really lovely. She really is the sweetest.

Notable mentions to both Jeffrey Steele and Chris DeStefano – Both of these guys put in amazing performances that I couldn’t not mention them. It’s funny because they’re so different from each other but they are both such compelling performers, performing very different but incredible songs.

AUTISM AWARENESS WEEK / DAY

It was World Autism Awareness/Acceptance Week and World Autism Awareness Day while I was away and, knowing that I’d be busy in Nashville, I’d prepared a series of posts to put up on my blog. I also posted this on Instagram:

OTHER FUN THINGS

While I didn’t do a whole lot more than go to shows, I did do a few things that are specific and special to Nashville…

SEEING FRIENDS – Over the years, I’ve made a handful of friends in Nashville and I’m still nurturing new relationships. I didn’t get to see everyone that I would’ve liked to but I did get to see some of my songwriter friends, some of my friends at NSAI, and some of my friends at Song Suffragettes. With three years since my last visit, it was really, really lovely to reconnect with all of these people and hopefully I’ll get to see the others next time or via technology in the mean time.
PANCAKE PANTRY – Chocolate Sin from Pancake Pantry is one of my favourite things to eat so I was very excited to finally get back to Pancake Pantry after so long. It was even better than I remembered and I had to remind myself to eat slowly enough that I could breathe. It’s not often that I enjoy food that much so it’s nice to experience that, something which I assume other people experience more often.

THE CANDLE BAR – I love my candles from the Candle Bar and I’ve managed to stretch my last one over three years by being very stingy about using it so I was very excited to get a new one. But then we got there and that particular fragrance wasn’t on the shelf. I was in the middle of feeling overwhelmed by what I should choose instead – none of them were really grabbing me the way my favourite does – when my Mum asked about it and they said they’d be putting it back on the shelves the next week but could pull it out for us since they had it ready to go. That honestly made my day. The pink pepper grapefruit candle is the only candle that I’ve ever really loved and since Mum loves it too, we made two to take home with us. I’m very excited to be able to burn them a little more liberally again. The woman who ran the session was lovely and full of fun information about candles and the candle making process and I just had such a good afternoon.

COMMODORE GRILLE – It was on my first adventure in Nashville that I discovered the Commodore Grille’s excellent chocolate brownies and it was on one of the few trips out to eat that we went out and got one. Well, one each. It was so good and I’m so glad we were able to find the time to do it.

SONG SUFFRAGETTES

I did manage to get in a second Song Suffragettes show while I was in town, which I was very grateful for. This round was made up of Jillian Dawn, Sam Bowlds, Olivia Faye, Elana Jane, Paige King Johnson, and Mia Morris, Mia being the only one I knew previously. They were all great – they always are – but I think my favourites were Jillian Dawn and Paige King Johnson; their songs just spoke to me more deeply than the others did for some reason.

On the whole, the travel had been good. I had disabled assistance at all of the airports and until the trip home, that was great and had made the whole flying ordeal a lot easier. But on the return trip, everything kind of went to hell and it was a bit reminiscent of ‘a series of unfortunate events.’ I almost had a meltdown on the flight from Nashville to Dallas because of a mix up with the seats, which was horrible.

And while the Dallas to London flight was okay (I mean, it was long and cold and uncomfortable but nothing went wrong), everything went wrong from the moment we landed, from problems with gates to confusion with the disability assistance to the freaking coach home. And by that time, we were both so tired (and I was so overwhelmed and stressed out) that I was definitely moments from bursting into tears. But we did eventually – eventually – get home.

It’s been about a week since I got home now and I’ve been a bit of a mess. The jet lag hit me hard, on top of my exhaustion from the trip itself, and my mental health hasn’t been great. I guess I’m just feeling really overwhelmed, like all of my feelings have been turned up to eleven (I mean, even more so than usual).

Category: anxiety, autism, chronic fatigue, covid-19 pandemic, emotions, event, favourites, food, heds, holidays, mental health, music, sleep, special interests, video, writing Tagged: bleachers, boston, boston ma, candle bar, candle bar nashville, candle making, caylee hammack, charly bliss, chris destefano, chronic fatigue, chronic illness, chronic pain, commodore grille, concert, covid-19, disabled, disabled access, emily shackelton, exhaustion, face mask, face masks, festival, humble quest, jack antonoff, jeffrey steele, jet lag, kalie shorr, kelsea ballerini, madison kozak, maren morris, mask, masking, masks, nashville, nashville songwriters association international, natalie hemby, nicolle galyon, nsai, paddywax candle bar, pancake pantry, pandemic, pandemic 2020, pandemic anxiety, singersongwriter, singersongwriter life, song suffragettes, songwriter, songwriters, songwriters festival, songwriting, strange desire, tin pan south, tin pan south 2022, travel, travelling, waaw, world autism acceptance week, world autism acceptance week 2022, world autism awareness day, world autism awareness week

Experimenting With Melatonin

Posted on March 22, 2022

After the Temazepam didn’t make a dent in my insomnia, my GP prescribed melatonin and finally – FINALLY – I started getting some sleep again. And in the nighttime hours. I started out at 2mg but almost straight away, I found it almost impossible to wake up in the morning so we reduced it to 1mg with the blessing of my GP.

As is always the case with posts about medication, supplements, etc, this is just my experience. Please don’t start, change, or stop taking anything without the advice and support of a medical professional.

WEEK 1

So it definitely helped me get to sleep more quickly. I went from lying awake for hours – for most of the night – to falling asleep in less than an hour. It wasn’t always quick but it was a lot quicker than it had been (part of that could have been due to a flare up of my chronic pain though).

Almost straight away, I was struggling to wake up in the mornings. I would wake up and fall asleep again over and over; I couldn’t seem to stay awake and that meant I wasn’t getting up until late morning or early afternoon. After a couple of days, I went from 2mg to 1mg but it didn’t seem to make any difference. I mean, I appreciated being able to sleep again but suddenly I was sleeping more than twelve hours, which was just problematic in a different way.

Again, almost right away, I was finding myself increasingly sleepy in the day. That was another reason to reduce the dosage but that didn’t seem to make any difference on this either. I was back to drinking Red Bull pretty much every day – not a habit that I want to return to but I was just too tired to come up with an alternate solution and just wanted to make it through the day. My eyes were always tired and I struggled through the day, trying to do things, trying not to fall asleep. And that was with the caffeine (I’m starting to wonder if caffeine has any effect on me at all at this point). It’s hard to know whether it’s the Moclobemide, melatonin, or just the accumulated lack of sleep but I really, really don’t want to spend my whole life feeling tired and sleepy because MAOIs are the only medications that work.

WEEK 2

It was taking me a while to get to sleep – I couldn’t get comfortable (yay, chronic pain); I couldn’t relax; I couldn’t unwind – but it was still so much better than before I started taking the melatonin. I was still getting to sleep a lot quicker than I had been. I do keep going to bed too late, which is a habit that frustrates me, but I’m trying to be better about that.

I was sleeping restlessly, waking up a lot, which wasn’t super restful. Waking up was a struggle: I’d fall asleep, wake up, fall asleep, wake up… I just couldn’t wake up. I couldn’t open my eyes or make my hands work for such a long time; it was horrible. I don’t know if that’s the melatonin or the Moclobemide but, whatever it is, I don’t like it. Getting up took a lot of effort and I usually didn’t manage it until into the afternoon.

During the day, I was physically exhausted but also really sleepy; I couldn’t keep my eyes open (and they were just so tired). I was ready to go back to bed within a couple of hours of getting up. I started consistently drinking Red Bull again, something I haven’t done since I stopped taking the Phenelzine last September. It’s not a habit that I want to start again but I don’t really know what to do: I’m so tired that I can’t figure out what the right thing to do is so I’ve just been going with it to get through the day. But even with the Red Bull, I’m very drowsy and tired.

WEEK 3

While I’m certainly drifting off faster than I was before I started the melatonin, it hasn’t been straightforward. It often took me quite a while to get to sleep, like I had to concentrate in order to sleep (which seems somewhat counterintuitive) but then I was restless and woke up over and over. However, there were also nights when I fell asleep quickly and slept well. So I’m not sure what conclusions to draw from that.

Generally, waking up was unpleasant. I’d wake up, fall asleep, wake up, fall asleep – over and over again. It was very frustrating. I found that eating something straight away did help me stay awake but I hate it: food is absolutely not what I want when I first wake up but it’s the only thing that seems to make waking easier. Over the week, I have noticed that I’m naturally waking up earlier and earlier, which I am grateful for.

I struggled during the day though, physically exhausted and just so sleepy; it was so hard to keep my eyes open. I don’t know if the Red Bull helped at all. Socialising, even when it was enjoyable, was exhausting and I fell asleep on the sofa multiple times. That, of course, just made it harder to get to sleep when evening rolled around.

WEEK 4

Given how much I struggled to wake up and how sleepy I was during the day, I stopped taking the melatonin, an experiment to see if it was the cause of my drowsiness, if I could sleep without it.

My sleep was better than it had been before this experiment with melatonin but it still wasn’t great. It was still taking me a couple of hours to get to sleep but I wasn’t lying awake all night, which was an improvement. Most nights, I slept restlessly and kept finding myself stuck between asleep and awake or with busy, vivid dreams.

I consistently struggled to wake up, although I discovered that eating something straight away did help. Otherwise I just kept drifting back into sleep. Waking and then getting up was just a battle, every single day. I was managing to get up earlier than I have been able to over the last few months but then I was generally sleepy within an hour of settling to whatever I was working on.

I was incredibly sleepy during the day, every day without fail. I was easily fatigued and it didn’t take much to leave me passed out on the sofa for a couple of hours. Everything just seems to take so much energy. The urge to nap was constant and my eyes kept closing; it took all of my energy just to stay awake. Even with a Redbull or two in my system, I was always drowsy. I wish I knew why the sleepiness kicks in during the day only to completely disappear at night; it’s really wearing me down. It seems clear that the MAOIs are at least the main cause of this sleepiness but if they’re the only way forward, then we need to find some way to counteract it. It just isn’t sustainable. I can’t do what I need to do like this.

WEEK 5

Having come to the conclusion that the melatonin wasn’t the cause of my daytime sleepiness, I decided to try another experiment. Given that I still wasn’t sleeping particularly well, I thought I’d try the melatonin again, just to be sure. I started with the 1mg but that didn’t seem to be enough: I’d feel my body, particularly my legs, start going to sleep but then they’d twitch awake, horribly and painfully. That only made it harder to get to sleep, both the physical pain and the fear of it. So, thinking that that dose might not be enough, I returned to the originally prescribed dose of 2mg. It had mixed results. Some nights I slept quickly and well but some nights, I slept terribly, waking over and over and experiencing busy, stressful dreams. It’s better, I guess, than sleeping badly all of the time but it’s not as straightforward as I’d hoped it would be.

The drowsiness – and fatigue – is still a problem. I’ve got some ideas to pursue on that front but there isn’t the time to test any of them out before my trip to Nashville so, until I get back, I’m just going to have to muscle through and hope the adrenaline can plug the gaps. I’m anxious – I don’t want to miss out on anything – but I’ve also been living with this, to some extent, for years now. I’m well practiced at managing my energy, even though I don’t always listen to my experience and instincts.

So I’m not really sure how I feel about the melatonin. After five weeks, I’d hoped I’d know one way or the other whether it was helpful but I’m not sure that I do. It might have broken the sleepless loop I was in but it hasn’t proved to be reliably helpful and on the nights it isn’t helpful, it feels like it makes things worse. So I don’t know. I really don’t.

Category: adhd, chronic fatigue, depression, heds, medication, mental health, sleep, treatment Tagged: antidepressants, chronic fatigue, drowsiness, exhaustion, fatigue, hormone, hormones, insomnia, maois, melatonin, moclobemide, monoamine oxidase inhibitors, red bull, redbull, sleep, sleep cycle, sleep-wake cycle, sleepiness, supplement, tired, tiredness

Finding Hope

Trying To Get Tickets To The ERAS Tour As A Disabled Person

I Believe In Nashville

Experimenting With Melatonin

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