Posted on December 31, 2019
I don’t even know how to sum up this year.
If I’m honest, most of it’s blurry. The first half of it anyway. I was still trying medication after medication so I was kind of living in a haze. It’s scary to look back at a time not that long ago, search for memories and not be able to find them, find the details. Or worse, not even know what memories to look for. I hate it and it’s scary and I try not to think about it. Thank god for photos though. Looking back through my photos helped me to remember and I’m grateful for that.
I got to go to the opening night of Waitress The Musical and to my complete surprise, Sara Bareilles was there, both to introduce the show and to bid us all goodnight. The show was amazing: I loved the music, I loved the characters, I loved the story, and the meaning in the story. And seeing Sara Bareilles in person for the first time since 2014 was extra special.
I also got up stupid early to see her do a surprise set in St Pancras station. Apart from the fact that she has an incredible singing voice and is a great performer, even just sitting at a piano, there’s something magical about seeing a person you admire so much in real life. And my Mum was a trooper, running after her team (my medication meant I could barely stand up for the whole performance) and making sure she got my letter. So that was a good morning, even if I felt very unwell for the rest of the day (I’d overstretched, given the meds I was taking).
We had a nerve-wracking few weeks where our dog, Lucky, was incredibly unwell. I saw it happen: his head just tilted to the side and he stood there, looking so… wrong. I was convinced he was having a stroke. Plus his eyes were moving back and forth really quickly; I couldn’t imagine how he could even see. Despite a trip to the emergency vet then and there, we didn’t find out until the next day that he had Geriatric Vestibular Disease, which is basically vertigo. He was really, really sick. He wouldn’t eat and that’s really the sign that a labrador is sick. Mum was feeding him pieces of boiled chicken by hand just to keep him going. They gave him a morphine patch but that just made him sicker so they eventually removed it. It took a long time but eventually he was back to his old self. It’s not the same: he has a permanent head tilt, his balance is terrible, he can have trouble walking. But he seems to be happy and he’s certainly loved. So we’re getting through. Day by day, we’re getting through.
I was fortunate enough to go to Nashville again, which was amazing, even though I was really, really struggling on my medication. I was depressed, overwhelmingly anxious, and my hands felt thick and clumsy, making playing guitar a real ordeal. As wonderful as it was to be in Nashville, I felt very guilty for not being as happy as I felt I should be.
Having said that, I had some really great experiences while I was there. I got to go back to my favourite places, see two Song Suffragettes shows (which are always such special experiences for me), and hang out with my friends who I only get to see once a year. I didn’t get to see everyone but I had a lovely time with the people I saw. I even got to see the awesome Caylan Hays play a show and hear all of her new songs. That was really, really special.
Tin Pan South was amazing as usual, although I had to make some tough decisions over which shows to go to. They were all amazing though. My favourite was Nick Wayne, Hannah Ellis, Josh Kerr, and Natalie Hemby. Natalie is another person I hugely admire and she actually knows who I am now, which I’m honoured by. We got to have a proper conversation, which was one of my favourite moments of the trip. And I’d love to write with her one day: that’s a bucket list write.
I also got to see Kelly Clarkson (who I’ve always, ALWAYS wanted to see live) in concert and Kelsea Ballerini was the opener, which was awesome because I love her. It was an amazing concert and I loved every second of it.
It was an amazing trip but I hope that next year I’ll be in a better place, a place where I can enjoy it properly and effortlessly. I think that’s gonna be one of my goals for 2020.
Here at home I also got to see some amazing concerts. My favourites were Maren Morris (I saw her twice but the second time was front row at the Royal Albert Hall, which was the most surreal, amazing experience) and Ingrid Andress, who had the whole crowd singing despite only having released a few singles. It was amazing. And she remembered me and we talked about writing together when I’m next in Nashville, although I’m now not sure it’s going to happen. But it was amazing to know that she was up for it. Hopefully one day.
I also saw Halsey in a super small venue and she was fantastic. We had trouble with the accessibility, which caused me a lot of anxiety, but the show was incredible. She’s an amazing, amazing performer. I love her. But I feel very out of place at her concerts, which is hard.
I, with Richard Sanderson (Richard Marc on social media), spent most of the year working on my first EP. It was such a learning curve but I loved it, for the most part. It took an exceptional amount of work and I have to give so much credit to Richard and to Josh Fielden who mixed the songs because part way through, I tumbled into a really deep depression, accompanied with the worst anxiety I think I’ve ever experienced. It took a long time for me to get back to a place where I could work on it. It’s part of my musical story so I’m really glad it’s coming out, even if I still have a lot of anxiety about it. If you’ve been following this blog, you’ll know the story of the first single and you’ll know more about the rest of the songs soon.
I spent several months in a deep, deep depression, the worst I’ve ever experienced. I basically lay on the sofa and thought about dying. It was awful. I don’t really know what else to say about it. It was just still, but with a mess of agonising turmoil underneath.
Then, in the middle of the summer, one of my cats had kittens, despite the vet telling us in her vet check the week before that she absolutely wasn’t pregnant. We came home from dinner and Mouse was waiting for us. She took me upstairs to my room, curled up in one of the cat beds, and over the next few hours, she had a couple of tiny, adorable kittens. She got distressed every time I tried to leave so I stayed through the whole thing (and saw some pretty disgusting stuff that I never needed to see).
Having the kittens in my life has done wonders for my anxiety. Watching them grow and play and explore was so calming and mindful for me. And now that they’re older, all five cats play as a family. They’re a pride. It’s gorgeous. I don’t know what the future holds but having them in my life has been one of the most, if not the most, positive thing this year. I’m really, really grateful for them. Having said that, everyone’s spayed now so there won’t be any more surprises, which is probably – definitely – a good thing, as adorable as kittens are. The stress is just too much.
Somewhere in the middle of the holidays of kittens, I started taking Phenelzine again, which was a really difficult decision. I’m still struggling with the side effects but I am better than I was. I still have moments of depression but it’s not constant and I’m managing the anxiety with other medications. And best of all, I can write songs again. That is the best possible outcome.
September loomed and I spent time with the Disability Coordinator at my uni, something they had never had before. I actually felt hopeful about having someone who understood me. And then, she became extremely unreliable and that resulted in one of the worst meltdowns I’ve ever had – in the middle of Victoria Station. That triggered a period of multiple meltdowns a day, which turned the weeks into a blur. It was awful. I started my Masters Degree in Songwriting in one of the worst states I’ve ever been in.
Despite being part time, the Masters took up every day of the week, working on songs and trying to research while battling my OCD, which had suddenly spiked. I had no time off, no time to breathe. I felt like I was failing at everything. I think I’ve gotten better at managing it (and it’s going to be a focus in therapy when we start again in the new year) and I managed some research and I wrote some songs I’m really proud of. I enjoyed the course and classes but balancing everything with Autism and mental health problems was a nightmare. I’m going to write a post about the course in more detail but it still needed to be included in this post.
Oh, and somewhere in there, I turned twenty five. My Mum bought me twenty five yellow roses.
The first single of the EP came out a few weeks into the course and it was a complete surreal – if incredibly stressful – experience. I had no idea what to expect, especially since I’m an independent artist, but for what was really a first, first single (considering ‘Invisible’ had no marketing and so on), I think it did pretty well. It got added to several playlists on Spotify and had radio play, local and BBC Introducing. That’s been amazing and I’m excited to see where the next one goes.
And now I’m finishing the year with basically no Christmas break because I’m working on the assessments for my course everyday. They’re causing me so much stress I feel like I can’t breathe. I’m also terrified of the fireworks tonight (another story I’ve talked about before) and don’t know what I’m going to do to avoid them because I have work to do and they cause awful meltdowns. So, all in all, not the best way to end the year. I’m cautiously optimistic about 2020.
“2019 has been an incredibly difficult year. I feel broken. I feel like I was shattered into a thousand pieces and then put back together wrong. And if I’m honest I don’t know what to do about it. But there were good moments too and I’m so grateful for those. 2020, please be kind.” (x)
Category: about me, animals, anxiety, depression, diagnosis, emotions, holidays, medication, meltdowns, mental health, ocd, suicide, therapy, treatment, university Tagged: 2019, 2019 in review, 2020, antidepressants, anxiety, bad night, birthday, cat, caylan hays, concert, debut ep, depression, dog, halsey, ingrid andress, kelly clarkson, kelsea ballerini, kitten, kittens, maren morris, masters, masters degree, masters degree in songwriting, medication, meltdown, meltdowns, mental illness, nashville, natalie hemby, obsessive compulsive disorder, ocd, phenelzine, reflection, richard marc, richard sanderson, sara bareilles, song suffragettes, songwriting, suicidal, tin pan south, university, waitress the musical
Posted on July 27, 2019
If I’m honest, I’m still not sure what I’m doing – how I feel about my writing – but there’s been a lot in my head this week so I thought I’d just try and get it all down. Maybe it’ll help.
I’m not sure if I’ve mentioned it already but after two and a half years of trying medications, I’m back on Phenelzine for my depression. I’m back on the drug I was trying to get away from. Back in 2017, it was starting to fail but I was also starting to fight it. The lifts to my mood felt artificial and suffocating. I felt depressed but there was this thick layer of calm suppressing it and it was causing me great, great distress. I felt like I was scratching at the walls of my mind with my fingernails, desperate to get out and just feel how I was feeling. Of course, feeling deeply depressed is a miserable, paralysing experience but at least it felt real. It was the truth and the truth is one of the most important things to me.
But despite all of that, I’m taking it again and I can’t help feeling like we’re starting to run out of options. We must be if we’re going back to a drug that I struggled with, that stopped working – although it’s true that it did work for a significant period of time. But we started looking elsewhere for a reason. Multiple reasons. I voiced that in the session with my psychiatrist and he said that there are still options but I can’t help worrying. Because if I’m running out of options at the age of twenty four, that’s a lot of life left without much to work with. Will we reach a point where I just have to live with it? Live with crushing depression and paralysing anxiety?
And let’s talk about anxiety. Last time I was taking the Phenelzine, I also took Quetiapine, primarily for the insomnia that the Phenelzine caused but it also helped with my anxiety. Because it’s a sleep aid, it has a sedating effect, which helped me to manage that constant anxiety. But I can’t go back to it. The sedative effect almost seemed to increase over time and it got harder and harder to wake up in the mornings. It was like I was so deep underwater that I couldn’t find the surface; I could hear people talking to me but I couldn’t open my eyes or move or speak. By the time we were abandoning the Phenelzine, it was so bad that I was losing half the day just trying to wake up. I can’t go through that again. It was awful.
So that limits the options, if I can’t take that or any of the similar drugs. The drug we’ve decided on is Diazepam. I’ve been taking it on and off over the last year and it works; it stabilises my emotions when they get out of my control. But it has addictive potential and I’m not supposed to take it every day. So, every day, I have to look at my anxiety and feel my anxiety and assess whether it’s bad enough to take the medication. And that’s exhausting. I never get an escape from it. To me, that’s not living. That’s managing.
But this is it for the moment. This is life. We’ll reassess in a month.
Posted on July 13, 2019
I’m sorry for my extended absence. I never meant to abandon the blog; it’s just been a really, really tough month. I’ve been taking the new medication (or old medication – Phenelzine), which seems to have had no effect other than to upset my stomach. But I’m trying not to give up hope just yet. One of my cats had kittens, which has been incredibly stressful. My depression has reached new lows and I actually started to find it difficult to think at all: sentences would not finish in my brain. It was frustrating and very distressing. I’ve also had quite possibly more meltdowns in the last month than I have had in the previous six. So it’s been hard and writing has just felt impossible. I couldn’t put what I was feeling into words and I didn’t feel like I had anything useful to say, anything anyone wanted to hear.
I don’t quite know what happens now. I love this blog dearly so I have no intention of abandoning it but you may have to be gentle with me as I try to get back to writing. I’m doing my best, I promise.
Posted on April 28, 2019
The last few months have been tough, medication wise. I had a wonderful, un-depressed Christmas (which I’m massively grateful for) but since then, I’ve been struggling. My mood just kept dropping and my anxiety just kept getting worse and we tried to alter the medication to compensate, to find that perfect balance, but it’s gotten to the point where we just need to try something new. So I’m taking stock of everything and trying to figure out how I feel about all of it.
The Clomipramine (a Tricyclic anti-depressant) worked for a while. As I said, I had a really good Christmas where I felt joyful and energetic and actually happy for the first time in a really, really long time. But then it seemed to lose its effectiveness and my mood dropped, whether that was because I was taking a magnesium supplement (I talk about that here) or because it just had a short shelf life. I don’t know. But it stopped working and my depression returned. Since then, my depression has been stifling and I’ve really struggled with suicidal thoughts, at an intensity I’ve never experienced before.
My anxiety also skyrocketed so, in addition to the Pregabalin (also known as Lyrica) I was already taking, I started taking Flupentixol to help manage it. At first I felt no different but after adjusting the dose, my anxiety decreased dramatically and I started to feel a bit more functional. But in the months since then, it seems there have been a number of difficult side effects: my energy levels dropped dramatically, to the point where even a shower is a real struggle. Standing for any length of time is impossible and I ended up being wheeled around multiple airports in a wheelchair during my Nashville trip. The worst part though was that my hands felt thick and clumsy, like my fine motor skills had just evaporated into thin air. Playing guitar was practically impossible.
At first I didn’t realise that these things were connected to the Flupentixol but thanks to my Mum and her incredible attention to detail, we realised that the dates all seem to match up and since we reduced said medication, these problems have disappeared. I’m ridiculously grateful to have my hands back, even if my anxiety has flooded back in.
We’ve reached a point where I can remain where I am or start over. So I’m starting over. I don’t want to live like this. So, after a lot of thinking and talking to my psychiatrist, I’m coming off both the Clomipramine and the Flupentixol. I’m not a massive fan of the Pregablin either to be honest but even changing two things at once is ambitious. So that one can wait. I’ve already started reducing the meds and I’m bracing myself for a barrage of mood swings, depressive episodes, and more. It’s not going to be fun. But it will be worth it. Hopefully.
The current plan is to come off the two drugs, go the ‘wash out’ period (two weeks of no drugs – apart from the Pregablin – so that there aren’t any negative interactions between the medications), and then start Phenelzine again. Yes, Phenelzine – the drug I stopped taking two years ago because it had stopped working, because the joyfulness it gave me felt fake and suffocating. BUT it’s the only drug that’s allowed me to be functional – creatively and otherwise – so we’re giving it another try. It did work for a long time and if it doesn’t, we’ll try another MAOI (monoamine oxidase inhibitor) anti-depressant.
I’m not sure how I feel about it, to be honest. Part of me is frustrated and disappointed. I’ve spent two years trying to find something better only to end up where I started. But on the other hand, that’s two years of knowledge, experience, and confidence that I didn’t have before. I’m a different person and chances are, my reactions will be different: our bodies change and our chemical makeup is constantly shifting. These medications all but cause a hurricane inside us. So I’m trying to be optimistic. I’m trying to be hopeful.
Category: anxiety, depression, medication, mental health, treatment Tagged: actuallydepressed, anti anxiety, anti depressants, anti-depressant, antianxiety, antidepressants, anxiety, anxiety disorder, clomipramine, depressed, depression, flupentixol, maoi, maois, medication, medication change, medication review, mental health, mental illness, mentally ill, mentally unwell, mono amine oxidase inhibitors, phenelzine, pregablin, side effect, side effects, treating depression, tricyclic antidepressants, tricyclics
Posted on October 13, 2018
Going to therapy hasn’t always been easy. I feel so, so lucky to have such an amazing therapist now but I had a lot of difficult experiences before I started seeing her. So I thought I’d share some of those experiences. Maybe they’ll be helpful.
After many, many appointments with my GP, I was finally referred to the local NHS Wellbeing service but the session didn’t go well. At this point in time, my anxiety was so bad that I couldn’t talk to people I didn’t know. I just couldn’t. Answers to questions would form in my mind but I couldn’t force them up my throat. So I sat there, in tears, while the doctor tried to get my Mum out of the room and told me he ‘wouldn’t’ help me if I didn’t talk. I don’t want to rant but I WAS STRUGGLING WITH A MENTAL HEALTH PROBLEM. I wanted desperately to be able to talk about it but I couldn’t. I don’t remember much about that appointment but I do remember standing in the street afterwards, shaking and crying and screaming and swearing. I couldn’t understand why no one was helping me when there was so clearly something wrong.
My second attempt at therapy was a bit better. I started Cognitive Behavioural Therapy (CBT) with a really lovely therapist. She was very patient and very open to working around the anxiety that kept me from talking. She was also happy to have my Mum in the room: it helped my anxiety and meant she could provide information. Slowly I started to trust her and started answering questions myself. But it was exhausting, bone achingly exhausting. As hard as we worked, I didn’t feel like we were making any progress and it was too hard to go through that to make no progress. I really liked her and I could tell that she was a really good therapist but the approach wasn’t right for me. I found the format too rigid. In simple terms, CBT is about breaking down your problems and then trying to create change in those areas. I felt, and still do feel, that my problems are too murky for a short stint of CBT. I know now that many of my problems originate from my Autism and the fact that it went undiagnosed for so long but even with that knowledge, the difficult things still feel overwhelmingly huge. I can see CBT being useful for a specific anxiety. For example, we tried to work on my anxiety around making phone calls. But I think the reason it didn’t work is that it wasn’t an isolated problem; it was a piece in a much bigger puzzle. I don’t think you can solve that sort of problem if you don’t know what’s causing it. Plus, being rational about what you’re struggling with in the controlled setting of therapy and being rational when it’s overwhelming you are very different things. CBT sort of assumes that you can still apply the skills you’ve learnt in therapy regardless of how you’re feeling, which can feel impossible, especially if you live with really powerful emotions. But maybe that’s just my perception.
The next thing we tried was Eye Movement Desensitization Reprocessing (EMDR), recommended by a family member. In the few months between finishing CBT and starting EMDR, my anxiety had sky rocketed so starting a new therapy was really hard. It was so bad that I actually never spoke to the guy I worked with. But despite that, and my difficulty with eye contact, communicating with him was easier than it had been with previous therapists. He was fantastic. He accepted my difficulty speaking and suggested writing on a whiteboard. I considered that and it felt possible so that’s what we did. He asked me questions and I replied, scribbling as fast as I could. It worked. And to take the pressure off, we would spend part of the session on the floor, playing dominoes while he asked me questions. I felt absolutely safe there. It was incredibly strengthening to have someone accept my anxieties as they were, to have someone recognise that I wasn’t just being difficult, that I was genuinely struggling with something really hard. And although it didn’t turn out to be the right thing for me, the sessions are still really important to me. For several months, we worked hard. We tried. I felt supported. And even though I didn’t ever speak, I did once sing for him and he almost cried. That was a pretty big moment.
After that, I didn’t go to therapy for a while. There was a lot of life stuff going on and there just wasn’t the time to find someone new. But I did start seeing a new psychiatrist. He prescribed me Phenelzine (which I’ve previously written about) and we spent a lot of time trying to figure out what was causing my problems. I guess it was a type of therapy. We went through my history and analysed my emotions, trying to find a diagnosis. The medication helped and we managed the side effects but it still took a long time. When my university said that they couldn’t help unless I had a diagnosis, I pushed for this and in January 2015, I could finally put names to the issues I was struggling with (apart from the Autism diagnosis which came several months later). My psychiatrist recommended Dialectical Behaviour Therapy (DBT) so we started looking for another therapist.
My current therapist is the first one we met. I just knew she was right; me and Mum walked out, looked at each other, and said, ‘she’s the one.’ We did meet another one but my mind was made up. And we were right. She’s amazing. I’ve been seeing her for three years now and I’m so grateful to have that safe place. DBT suits me much better. It’s based on CBT but, as the Mind website says, it’s “been adapted to help people who experience emotions very intensely.” They both help with changing unhelpful thoughts and behaviours, but DBT also helps you to accept yourself. It’s about a balance between acceptance and change. That really makes sense to me and always has.
In the beginning, I needed my Mum in the room with me and she would answer all the questions. We’d always talked about everything so she knew pretty much all the answers. But over time, I felt more comfortable there. I needed Mum there less and less and eventually I started doing the whole session by myself. Three years later and it’s really, really important to me. It’s a huge part of who I am. It’s not easy; it’s really hard work and I often come home exhausted, sometimes falling asleep on the sofa afterwards. But it’s really satisfying to talk things through, to make connections, to see change happen. I’ve talked about things that I never, ever thought I would talk about and I’ve worked through things I never thought I’d let go of. That’s so huge that I can’t really comprehend it.
So that’s my therapy journey. For me, it’s DBT that works but I’ve seen the others help people too. You need to be ready, you need to find the right approach, and you need to find the right person. It’s not easy but it is worth it.
Category: animals, anxiety, autism, bpd, depression, diagnosis, emotions, medication, mental health, ocd, therapy, treatment, uncategorized Tagged: actuallyautistic, asd, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, cbt, cognitive behavioural therapy, dbt, dialectical behaviour therapy, emdr, experience, eye movement desensitisation reprocessing, medication, mental health, mental health awareness, mental health treatment, mental illness, mental wellness, nhs, phenelzine, therapist, therapy, therapy experience, therapy journey, treatment
Posted on August 18, 2018
This is something I’ve been meaning to write about for a while but it’s such a big topic that I was very daunted by just how much I needed to include. I’d open a word document, stare at it for ten minutes, and then switch to something else. You’ll see what I mean. Getting a diagnosis is a complicated and emotional process that is so different for everyone but I had no idea how difficult it would be when we started pursuing it. So I thought I’d write out my experience just to put out into the world one version of the story. Maybe yours is similar, maybe it’s different. Hopefully you’ll get something out of it either way. And if you’re trying to get one, maybe this will give you some idea of the hurdles. I don’t want to scare anyone off; it was a brutal experience but it was absolutely life changing and life saving, both for my mental health and for who I am as a person.
I’m going to split this into two posts because although they’re linked, the processes for getting the mental health diagnoses and getting the ASD diagnosis were very different for me. I don’t know if that’s the same for everyone. This post will be about getting the mental health diagnoses.
My mental health problems became very acute when I failed an exam at sixth form in March 2013. I was eighteen and it was the first time that had happened. There’s a lot of stuff behind why that was the breaking point but I’ll talk about that in a different post. Otherwise we’ll be here forever; I’m already splitting this post in half. I hadn’t been oblivious to my mental health up until that point but I hadn’t recognised the signs for what they were; my knowledge of mental health had been pretty limited. But I’d always felt like there was something wrong with me (I now know that it’s different rather than wrong but that’s how it felt and sometimes still does feel) and I know that my depression and anxiety had been building up to that moment, that critical incident.
After that, I started seeing a psychiatrist that a family member had recommended (my GP had been unhelpful at best and distressing at worse). He diagnosed me with Clinical Depression and gave me an anti-depressant called Paroxetine to try. I don’t have enough experience to judge whether he was a good psychiatrist or not but I don’t remember feeling particularly supported by him. I only saw him a few times before I switched to a psychiatrist closer to where I lived. The Paroxetine made me incredibly sleepy; it was like they put me into a waking sleep that I still don’t feel I’ve really woken up from. I switched to Sertraline but that was even worse: I felt like a zombie and that was so upsetting that I (unwisely) stopped taking it cold turkey. That was a Bad Move, such a bad one that I still capitalise the first letter of each word. For a while I was very dissociated and then my anxiety came back, even stronger than it had been before. So I was a bit put off by medication but the diagnosis was helpful and I started going to CBT.
That ended up not being the right thing for me and the energy it took was just too much so I quit, not forever necessarily but I needed a break and we wanted to explore some of the other options. I tried several other things over the next year before deciding to try medication again. Both that first psychiatrist and the CBT consultant had been private but I couldn’t get the NHS to help me. I have to say here that I have so much (SO MUCH) respect for the NHS. It has saved the lives of several of my friends and I will defend it to the death but I don’t feel it has yet got it right when it comes to mental health. In my case, my anxiety was so bad that I found it incredibly difficult to talk to people I didn’t know. My Mum would explain the situation but we were repeatedly told that if I wouldn’t talk they couldn’t help. That was very distressing. Logistically I understand that it’s more difficult to communicate if a person can’t talk but that’s not an excuse to refuse care. The not talking was a result of my anxiety, which falls under their job description. They should’ve helped me. They should’ve at least tried. But they didn’t and I was struggling so much that we were forced to go private. I am endlessly, endlessly grateful that my family have been able to make that possible. It has, without a doubt, saved my life.
We found a new psychiatrist in the summer of 2014 and after such a horrible year, I was determined to make it work. I walked into his office, sat down, and started talking. I still don’t know how I did that. I was just as anxious as I had been before but I guess that’s desperation for you. Maybe it was my survival instinct. Anyway. My psychiatrist has since told me that he couldn’t believe I had such bad social anxiety because I had been so articulate and direct. Again, I’m putting that down to desperation (and I wouldn’t be surprised if the ability to mimic ‘normal’ behaviour – something that many girls with autism have learnt to do – came into play here too). But as I told him more, he started to understand where I was coming from and what I was dealing with. He put me on Phenelzine, which made a massive difference (I’ve written more about that here) and we continued our sessions so that he could get as much information as possible.
I wanted him to give me a diagnosis. I wanted a name for the thing (or things) that had so much power over me. I wanted to know what was really me and what was this indistinct, suffocating black shadow. I thought he’d have me do a load of diagnostic tests and questionnaires and then give me his findings but it felt more like therapy, but with a focus on my past experiences (rather than strategies to move forward). He didn’t seem in a hurry to find the answers and I didn’t know how to fast track the process. Eventually we got the deadline I wanted: my university said they couldn’t help me until they had an official diagnosis. But again, it wasn’t how I’d expected it to be and again, it was incredibly slow. Throw in that I’d just started university (which came with new people, new classes, and commuting into London) and I was under a lot of stress, as you can probably imagine. How I didn’t have more autistic meltdowns, I have no idea.
I couldn’t just do nothing. I spent hours searching the internet, looking for anything that might explain my experience. I examined diagnostic criteria and read medical papers; I scrolled through forums and took diagnostic tests. I’ve read a lot about the back and forth on self diagnosis (something I definitely want to discuss in more depth at some point) but for me, I needed a professional diagnosis, both to get the help I needed and to validate how much I’d struggled. Grouping my symptoms together and trying the strategies advised for whatever label fitted that group wasn’t going to be enough. So I used those test results as a starting point. Eventually I came across Borderline Personality Disorder and more specifically, the ‘quiet’ presentation of BPD. This means that they have many of the same symptoms (including mood swings, problems with self worth, unstable identity, and difficulties with relationships) but rather than ‘acting out’, they ‘act in’: they direct their negative emotions inwards, hiding them rather than projecting them onto others. Many struggle with issues around self hatred and self harm. If they lie or manipulate, it’s to protect themselves from perceived abandonment and they may avoid or distance themselves in relationships because they don’t want to be abandoned or because they feel they don’t deserve those connections. The ‘quiet’ presentation made a lot of sense to me because while I struggled with many of the problems associated with BPD, I rarely lash out so this felt like something to explore.
So, buoyed by momentum that discovery had given me, I took it to my psychiatrist. And he shut me down straight away. He said that I didn’t fit the criteria and moved on to something else. I didn’t understand: I was struggling with so many symptoms associated with BPD, almost all of them when you factor in the ‘quiet’ presentation. I couldn’t believe that it wasn’t worth, at the very least, a little bit more discussion. And at the end of the session, he said that he thought we’d done all we could do. I was devastated. And incredulous: we hadn’t achieved anything. If that was it, I was back to square one. Or minus one after everything the process had taken from me.
That session sent me into the worst place I’d been and after a particularly horrific meltdown, I spent several days in a fragile, barely responsive state. But once I recovered from that a bit, I got to work. I went back through my research and symptom by symptom, anecdote by anecdote, I wrote down everything I related to, everything I’d experienced, anything that could be relevant. It wasn’t that I was certain it was BPD, it was that I was certain it was something. This seemed as good an explanation as any and my psychiatrist wasn’t offering anything better.
When I was done, the document was seventeen pages. I’m pretty sure it was longer than my dissertation for university. And then we went back. I presented him with all my research and something very surprising happened. I’d hoped he’d accept it as something to explore and not only did he do that, he admitted he’d been wrong and apologised for dismissing it. Even now, that feels like a very important moment. In my experience, medical professionals aren’t naturally inclined to apologising, let alone admitting to being in the wrong. And I’d been ignored for a long time. When it came to my health, physical and mental, doctors had always looked at the most obvious option and then, when that didn’t fit, they’d just shrugged their shoulders and brushed me off. So this was a big deal.
And at the end of that session, I had my diagnosis. Or more accurately, my diagnoses. He pulled together everything he’d learned about me and diagnosed me with Borderline Personality Disorder, Anxiety, Social Anxiety, Depression, and OCD. It was a very strange experience. Momentous and anti-climactic at the same time. I felt light enough to float away but so exhausted and heavy that I wasn’t sure I could get out of my chair. I felt like I might burst into tears at any moment but I had this weird, hysterical urge to laugh. I felt invincible and incredibly fragile at the same time. Very strange.
Finally getting names for the monsters I’d been struggling with was incredibly validating. It was real. I wasn’t ‘crazy’ or ‘over dramatic’ or ‘too sensitive.’ It also made it real to everyone else. And although part of me was steadfast that something was wrong, I had started to doubt myself, having been dismissed by so many people. I was constantly fighting against falling into a well of despair, of fear that this was just going to be how life was for me. But the diagnosis confirmed that they were problems and most problems have solutions of some sort.
The diagnosis enabled me to get the support I needed at university and gave us some idea of what kind of talking therapy might help. Dialectical Behaviour Therapy (DBT) is recommended for people with BPD and that’s what I’m still doing, about three years later.
(I have no relevant photos for this post so here are a couple from around that time.)
Category: anxiety, bpd, depression, diagnosis, mental health, ocd, therapy, university Tagged: actuallyborderline, actuallybpd, actuallydepressed, anxiety, anxiety disorder, borderline personality disorder, bpd, depression, diagnosed as an adult, diagnosis, medication, mental health, mental health awareness, mental illness, mental illness awareness, mental wellness, obsessive compulsive disorder, ocd, paroxetine, phenelzine, sertraline, social anxiety, social anxiety disorder
Posted on December 29, 2017
I meant to post this yesterday, which actually was the 100th day, but then I managed to break my memory stick, where the file was saved. So that threw a spanner in the works. But here we are. The files were recovered. No harm done.
I’ve been taking Venlafaxine for 100 days now so I thought it was time I compiled my notes and summed up the whole thing. I know that when I started taking it, it would’ve been really helpful to know about someone’s experience. My psychiatrist gave me all the medical information but that didn’t really prepare me for what it felt like. So if you’re about to start taking Venlafaxine or are thinking about it, maybe this will help you. And if not, maybe this will give you a little insight into one experience of taking medication for a mental illness.
Week 1 (Dose: 37.5mg)
The nausea was so strong that all I could think about was not throwing up. I was very dizzy and tired all the time. But it was much easier to wake up in the mornings, quickly rather than having to drag myself into consciousness.
The nausea faded a bit. I had headaches and was exhausted all the time. I continued to wake up early.
Week 3 (Dose: 75mg)
I was so tired that I fell asleep at random but I was still waking up early. I felt very faint and was too shaky to do anything but I had no concentration so I couldn’t do much anyway.
The week was overshadowed by severe, unexplained leg pain. I had several doctors’ appointments to rule out the medication and DVT, the next most likely explanation, but eventually it faded by itself. Aside from that, I felt a bit lighter emotionally.
I had some leg pain but it faded much more quickly. I was exhausted and very sleepy, regardless of how much sleep I got.
I was so very, very tired, so tired that I could barely do anything. But I was still waking up very early.
Again, still very, very tired but I was also feeling very anxious and depressed. I also noticed lots of bruising, especially on my legs that didn’t seem to have a cause. All I had to do was lean on something hard, like the edge of a table, and I’d have a bruise.
Week 8 (Dose: 150mg)
A bad week. I felt very disconnected and depressed. I was also exhausted so I didn’t have the energy to do any of the things that can help. I was also pretty unwell for a couple of days but I don’t know if that was related or just a coincidence.
I started struggling desperately to wake up. It was like being trapped between being awake and asleep. It took all my concentration to wake up but all I had to do was blink and all that effort is wasted and I have to start all over again. I was exhausted and sleepy all the time.
I was struggling desperately to wake up and still exhausted and sleepy all day.
I reduced the Quetiapine from 125mg to 100mg (which I was prescribed while taking Phenelzine to help me sleep – I’d wanted to come off it straight away but was advised to wait so that I wasn’t dealing with reactions from both medications), which made waking up easier but I was still exhausted, depressed, and without any motivation.
The sleepiness started to creep back in and I was still exhausted and without motivation.
Again, I was really struggling to wake up; I couldn’t stay awake but I also couldn’t get back to sleep either. I managed to get the Quetiapine down to 50mg but I wasn’t sure if it was helping or not. I still had very little concentration and motivation which was really difficult and upsetting.
Week 14 (Dose: 225mg)
To combat the sleepiness, I reduced the Quetiapine to 25mg so my sleep was very all over the place. I was waking up really early and not getting more than about six hours. But I did feel more awake and alert which was a relief. I had several really productive days and wrote two songs after not being able to write for more than six months. That gave me an evening of complete joy, something I can’t remember feeling. Unfortunately that only lasted one night and my mood dipped afterwards because I missed it so much.
My mood was fairly stable, no major ups or downs. I wasn’t depressed but I wasn’t feeling that positive either. I was tired and sleepy and feeling a bit lost.
I just wanted to draw particular attention to how long this process can take. When I started my last medication, I felt better very quickly but it’s been a very different story this time. It’s not as simple as taking the pills and feeling better. There’s the time it takes to decide or justify that you need a new medication (or a first medication), the time it takes to come off the old one, the time it takes to build up and adjust to the new one… I started this process in May and it’s now December. Seven months and I still don’t feel that much better. I’m hanging on to hope that things will start to get better – I’m holding on to that one really good day – but it’s hard.
I think there is a lack of understanding when it comes to this stuff. From the outside, it can seem like you’re not doing anything to get better and there’s a lot of guilt attached that, from other people and from yourself. But on top of whatever mental health problem you’re dealing with, there’s adjusting to the medication and whatever side effects come with it. That’s a lot. It’s exhausting physically, mentally, and emotionally and you shouldn’t feel pressured to do things you feel unable to or feel guilty about whatever you need to do to get through it. I’m still trying to learn this. I constantly feel like I’m not trying hard enough, even when I’m so exhausted that I don’t think I can get out of bed. But that’s a topic for another day.
I hope you all had a lovely Christmas and I’ll see you in the next post.
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 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.
My second single, ‘Bad Night,’ is also now available on all platforms and is the first track from my new EP, ‘Honest.’