Posted on August 26, 2017
It’s time for a change.
I’ve been taking Phenelzine, also known as Nardil, for almost three years now and while it’s been a great help to me, I need to try something else. The last few months have been very difficult and to cut a long story short, I’ve been diagnosed (for the second time) with Clinical Depression. I’ve been finding it really hard to take my medication, knowing the effects it will have on me. It might sound strange but, when I take the Phenelzine, my mood lifts and feeling the way I do at the moment, I’m really struggling with that. I find it really hard to try and feel ‘okay’ when everything is ‘not okay’. To me, this makes complete sense but I can also recognise that I’m waiting to feel better while avoiding things that actually might help.
I think my problem with Phenelzine is how familiar I am with how it affects me. Having taken it for so long, I know exactly how it changes my mood. That used to be a good thing but now… Now, the ‘happiness’ it makes me feel just feels fake because I know it’s caused by the Phenelzine. I think it’s important to point out here that, objectively, I know that there is no difference between ‘real’ happiness and happiness caused by medication, and that I have always been a real advocate for taking medication (if you need it and it’s recommended). That belief hasn’t changed. But my familiarity with this medication is now making it difficult for me to take it so I need a new approach. It’s time to try a different one. Hopefully not knowing whether it’s the medication affecting my mood or the world around me will make it easier to take and therefore help myself feel better.
So I thought I’d do a little review of Phenelzine as a goodbye.
I started taking Phenelzine in the summer of 2014, after meeting my current psychiatrist. I’d taken various medications before (I’ll write about those at some point), all of which I’d had bad experiences with. So my Psychiatrist suggested Phenelzine, a drug not commonly used (in the UK at least) because of the dietary restrictions but one used when the other options haven’t worked. I’d never tried an MAOI (a monoamine oxidase inhibitor, one type of antidepressant) so I was optimistic that I would react differently than I had to SSRIs (selective serotonin reuptake inhibitors, another type of antidepressant). And I really did.
Almost straight away, I felt completely different. I had previously been almost unable to get out of bed, let alone do anything else, and suddenly I had more energy than I knew what to do with. My thoughts were like fireworks going off one after another after another after another. It’s the closest to mania I’ve ever experienced and my family were genuinely worried about me. I could barely sit still and I couldn’t shut up. I’m not kidding, I couldn’t stop talking and that was pretty embarrassing as I was just starting university. It was a bit scary but at the same time, I was absolutely ecstatic to be feeling so much better.
It took a bit of messing around with the dose (with my Psychiatrist’s supervision) but that did calm down. After a couple of months, I felt a bit more normal: I had more energy, I could concentrate and complete tasks, and my anxiety wasn’t as overwhelming as it had been. On a lower dose, I wasn’t so manic but I could still function a lot better than I could before. My almost perfect attendance in my first semester at uni is a testament to how much it helped.
Since then, with the exception of the last few months, it’s been a massive help to me. I’ve managed to complete my degree and graduate with a First, while commuting up and down to London. I mean, it was freaking exhausting but it would have been impossible without the Phenelzine. As I said, before I started taking it, I could barely get out of bed. The exhaustion that I experience with Depression is awful and I didn’t have the energy to walk my dog around the block. So Phenelzine was a godsend.
Side effects wise, there was only one that I struggled with (although I was initially a bit light headed and nauseous but that passed pretty quickly). My main battle was with the insomnia the Phenelzine caused. It’s has an alerting affect so it’s not that surprising that I had trouble sleeping. I struggled to get to sleep and when I finally did, I never slept more than four hours a night. It was exhausting. On multiple occasions, I fell asleep on the sofas at uni during my breaks and I’m pretty sure I fell asleep during a lesson once or twice: I have a very vivid memory of ‘blinking’ and finding the white board covered in writing…
This has been an ongoing difficulty. I ended up going back to the psychiatrist and left with a prescription for Quetiapine. I still have to take it every night to get to sleep and while I’m definitely grateful for that sleep, it also has it’s own downsides. It’s incredibly difficult to wake up; it feels like my eyes are glued shut, like I’m swimming through deep, dark water with no idea where the surface is and it can take hours to shake off the drowsiness. And it’s scary to feel like you will not sleep without it. I’m hopeful that, when I stop taking the Phenelzine, the insomnia will disappear and so I can stop taking the Quetiapine. That’s both exciting and scary. I haven’t slept unaided in almost three years; I’m going to have to learn how to do that again.
It’s going to take a little while to wean myself off Phenelzine and I have no idea how the new medication will affect me. So the next few weeks are going to be interesting.
Posted on August 22, 2017
This isn’t strictly mental health related but it was a really great experience, one where I felt completely accepted, as I am, as I process the world. That gave me some emotional energy back. Plus it was just really cool.
If you know Brighton, you should know about Fabrica, a little gallery on Duke Street. It’s a beautiful building and I’ve seen a number of really cool, really interesting exhibitions there. But the one running at the moment is my favourite. It’s called IN COLOUR and it’s an interactive light installation by Peter Hudson. The room is filled with coloured light and by interacting with a series of gadgets (a microphone, a small dome that’s reactive to touch, and a ball that you can move around), you can affect the colour of the light. You can use each of these separately or they can be used together and you can’t help but feel quietly connected to the people you’re sharing the experience with, the light reacting to your presence individually and as a group.
Here’s what it says on the website: “This site-specific work has been created in collaboration with people with complex needs, resulting in an immersive piece that invites audiences to interact with it and each other, non-verbally. The work has been developed to appeal to people who are highly sensitive to their environments and to sensory stimuli. As such the work is accessible and inclusive, exploring themes of communication and consciousness and how environment affects behaviour.” I did a bit of reading on Hudson and it’s apparently inspired by his experience at Project Art Works, an organization in Hastings providing art therapy to people with learning difficulties and Autism and is based on what Hudson describes as the ‘spectrum of neurodiversity’.
It’s pretty spectacular. My favourite was, unsurprisingly, the microphone. I was the only one there during most of my visit so I sang some of my own songs, watching as the light changed. I loved it. I’ve always loved colour and it’s really important to me when it comes to how I process the world so to combine that with my own songs was really special. It was kind of amazing to see what my music might look like. I don’t think I’ve ever sung anywhere so beautiful.
It was a great experience that really encourages creativity, connection, and communication, in whatever way you’re comfortable. I definitely want to go back again before it closes on 28th August. Definitely check it out if you can!
Posted on August 21, 2017
On Sunday 9th July 2017, I woke up feeling very nervous. It was the day of Disability Pride in Brighton, the first event of its kind in the UK, and I was performing on the main stage just after two o’clock. Of course, I was really excited: it was going to be a great event, one I was really proud to be a part of. But my anxiety was very high. Other than the fact that I hadn’t played live for a while (finishing my degree has taken up all of my time), I felt anxious about whether I deserved to be there.
My presentation of Autism isn’t very obvious. I’ve been told many times that I don’t ‘look Autistic’ (a phrase that needs a whole post to itself) and I’ve always struggled with where I fit under the label of ‘disabled’. The legal definition is “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities” (according to the Equality Act 2010 if you want the source of that). So, yes, I am disabled but it’s very much an invisible disability and multiple experiences of that being questioned has made me very nervous of associating myself with the word. But I’d applied and been chosen to play so I tried to trust that.
Everyone was so nice, right from the moment I arrived. I met the stage manager, AJ, who was lovely and got ready to go on stage; I was starting to get back that excitement that I get from performing. But then my capo broke. For those of you not familiar with guitars, the capo is the little gadget you can put on the neck of the guitar to make it easier to play in different keys. It literally sprang apart in my hand. Not good. I needed it for every song (I usually have a spare but since I’d bought this one a week ago, I hadn’t worried about packing one). Half of my brain was desperately searching my repertoire for songs that didn’t need a capo and the other half was trying to figure out where on earth I could find another one. No one else seemed to have one so my parents (major shout out to them) ran off to the two guitar shops close by. I felt like I should be panicking but I was strangely calm.
Somehow a capo was found and then I was on. I’d originally had time for four songs but that had to be cut down because of the capo problems. But I didn’t mind. The atmosphere was so nice, so friendly, that I just wanted to get out there and play.
I’d agonized over what songs to play. I write a lot of songs about my experiences with mental health – it helps me process them, helps me make sense of it all – but I didn’t want to upset or trigger anyone. On the other hand, I wondered whether it was a good place to play them, somewhere where people might relate to them. In the end, I decided to play two of those songs with two more upbeat, positive ones. But with the stress of finding another capo, all coherent thinking disappeared from my brain and I was playing a song before I’d even decided to play it. Oh well. That first song was called ‘Bad Night’, about a particularly bad night where I couldn’t imagine how I would ever feel better. The second song I played was called ‘Invisible’, a really important song for me because it’s such an honest account of asking for help with my mental health and being repeatedly turned away. As I introduced it and told the story behind it, I could see people nodding and that actually made me well up a bit. Writing it was so hard that I hadn’t really thought about what kind of reaction it would get and so, to have people connect to it, connect to something that was so personal, it kind of blows my mind.
I’d hoped to play another song, to end my little set on a more upbeat note, but there wasn’t time. That was a shame but I was so happy to have played at all. All my anxiety had disappeared and I remembered exactly why I love performing so much. And I have never played to such a friendly, supportive crowd. It felt safe to sing those songs about difficult things and it felt safe to be exactly who I am. I hadn’t expected that and even though it’s now several weeks later, that feeling still almost brings me to tears. I don’t often feel safe outside my home but I did feel safe there.
It didn’t hit me until later but my favourite moment of the event (apart from the adorable little girl who stood right at the front, watched both my songs, and waved at me afterwards) was something someone in the audience called out between my songs. With all the stress beforehand, I hadn’t checked the height of the microphone stand and so I discovered during the first song that it wasn’t high enough. I made a joke about that as I adjusted it, about being too tall for the microphone, and someone from the audience called out, “the microphone’s too short for you!” It’s simple but it meant a lot to me. I often automatically put myself in the wrong, assume that I am too much or too little of something rather than looking at the situation for what it is. Here, it was simply a case of adjusting the microphone stand to match my height and it’s a little ridiculous to put all of that on myself, to let it reinforce a negative view of myself. I mean, it’s a microphone stand! But it shows how easy it is to get into a pattern of always seeing yourself as ‘wrong’, even when there isn’t a right or wrong.
Of course this isn’t always the case, but it was a good little reminder to be aware of my thought processes and be aware of what I’m telling myself. (I think it’s pretty easy to pick up that way of thinking when it comes to a disability or mental health problem, because you’re often different from the norm and you end up adjusting to fit into that. So it’s easy to feel ‘wrong’, simply because it’s not the same as everyone else. At least, I feel that way.) It’s often hard to remember that different isn’t wrong, especially when the way everyone else does things is praised as the ‘right’ way or the ‘best’ way. I regularly have to remind myself of that.
Anyway, I had a really great time at Disability Pride and I was so grateful to play. It really was one of the loveliest, most supportive crowds I’ve ever played for. I wish I could’ve stayed longer and explored more but my physical health hasn’t been great lately and even that little amount of time had completely exhausted me. But the little bit I got to see was incredible and I am so, so proud to have been part of the event, even in the smallest way. I really hope that this event can become an annual one. Thank you to everyone involved – you are all complete stars!
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) 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.
I’m currently releasing my first EP, Honest, track by track and all five songs are now available on all major music platforms. However, there’s still more content to come…