Posted on November 29, 2017
I’ve been really struggling with my hair pulling lately. It goes through phases: sometimes I can go several days without pulling and sometimes it’s like my fingers are velcro-ed to my head. Right now, I’m in the latter. I don’t know whether it’s linked to my mental health (which hasn’t been great) or whether it’s just so ingrained that maybe nothing can stop it. Either way, I’ve been tearing out a lot of hair recently.
When I was writing my original post about Trichotillomania, I rewatched this video. I had discovered Rebecca and TrichJournal very early in my hair pulling and it was incredible. I wasn’t alone! I felt understood and I’m pretty sure that that helped me to stop pulling the first time. Even though it hasn’t lasted and I’ve since started pulling again, I’m still so very grateful for that.
That first post didn’t seem the right place to include this video but I have wanted to post it because I related to it so strongly and out of all her videos, I think it so truly shows the distress that Trichotillomania can cause. It’s not just pulling a bit of hair out; it has profound effects on the person and their life.
A few quotes from this video:
- “My fingers are screaming to tear at my hair right now. In the past I’ve described them like magnets: they are attracted to my hair.”
- “I really, really want my hair to grow. And I’m really, really scared of losing it.”
- “Yes, I’m still pulling, because the pulling never stops.”
I’ve been watching Rebecca’s videos for about three years now. Apart from videos on Trichotillomania, she talks about mental health, hoarding, makeup, her life… oh, and her cats. They’re gorgeous. You can find her channels here and here. I really recommend checking out her videos.
Posted on November 25, 2017
If I could change one thing about myself it would be my energy levels.
I’ve struggled with fatigue for most of my life. When I was twelve, I suddenly got sick and missed a lot of school. I was nauseous and so tired that even walking upstairs was exhausting. I went to the doctor, had many, many blood tests, saw various specialists but no one could figure out what was happening. No one could find anything wrong. And yet I was still very unwell. The only clue we had was that the blood tests showed I had had Glandular Fever at some point. But that was it. Months passed and we tried lots of different approaches but nothing helped. I was managing a bit of school but it was only a handful of classes a week and even that exhausted me. I basically lived on the sofa, missing out on pretty much everything.
Just over two years in and someone suggested something called the Lightning Process. It sounded strange but I was desperate so we said yes. It’s a fascinating idea: changing the pathways in your brain to affect your body and your health. I went to the three-day training course but by the end of the second day, I knew something had changed. I felt completely different and it showed. I still had very low stamina but somehow I had more energy. It was like a switch had been flipped. I went back to school and although I did still struggle a bit, it was so much better than before.
Everything seemed normal until I was eighteen and doing my A Levels. The stress was overwhelming and before I knew it, I was drowning in exhaustion. Somehow, I made it through my exams but my mental health deteriorated to a point where I couldn’t start the next course I’d planned to do. I struggled with both anxiety and depression and my fatigue seemed – and still seems – to be inextricably linked. It’s not as simple as ‘I’m more tired when my mental health is bad’ but there is a correlation. Medication has helped and was one of the major factors in getting me through university but it’s still something I struggle with daily.
When I was diagnosed with ASD, I was told that fatigue isn’t unusual and sleep problems are common with Autism. Personally, I’ve struggled with insomnia but more often, I sleep long hours only to wake up as tired as when I went to sleep. It’s like sleeping is just a break between days; I don’t feel like I actually get any rest from it. I think that it’s also to do with how hard my brain is working all the time. Simply existing requires a lot of processing of information: my surroundings, what other people are saying or doing or feeling, sounds, smells, as well as my own reactions and emotions about all of those things. I have to actively process all of that and it’s exhausting. That’s a normal day. If something emotional happens, good or bad, it takes all of my energy to deal with that. To me, strong emotions are like fog and it can take days or weeks to work my way through it. Sometimes longer. I also live with a lot of anxiety, which has always done a number on my energy. That anxiety feels like a programme running in the background of my brain, using up my energy, physically and mentally.
It’s a constant struggle, a constant frustration. I know that I have less energy than the people around me but I can’t seem to change my expectations. I try over and over again to do the same amount as everyone else but I can’t sustain it. Sooner or later, I crash, completely exhausted. I’m getting better at managing my energy and building in recovery time but I can’t seem to stop myself raging against it. I can’t accept it. I feel a bit like one of those wind up toys that just keeps running into a wall. I want to do so much more than I have the energy for and that’s really, really hard to deal with. As is the long-term nature of it. You can’t just quit your life for a few days like when you get the flu or have a migraine. I’m not making light of those things – I’ve had and hated both – but the need to keep pushing forward despite feeling so exhausted and the anxiety about not making any progress wears me down in a way nothing else does. It affects every aspect of my life and it’s starting to feel like a part of me.
This makes it impossible for me to work. I’ve been extremely fortunate to get some benefits over the last few years but it’s still very, very stressful. I find it so difficult to adjust my thinking, to adjust to my new reality. I keep trying to meet the standards I’ve grown up believing I need to reach only to feel like a failure when I can’t reach them. The idea of even a part time job fills me with blinding panic because I know that I am physically incapable of doing all the tasks that would be required of me. Some days, even having a shower feels like climbing Mount Everest. I want to link to this Tumblr post because I think it explains the relationship between energy and the tasks you’re trying to do really well.
And it’s not just physical energy; it’s mental and emotional energy too. I get overwhelmed and burnt out really quickly, I think because I feel everything so intensely. A job that doesn’t account for that would have a devastating effect on my mental health and even though the world is starting to think about mental health and spread the message of putting you’re mental health first, I still feel incredibly anxious about this area of my life. I feel like having so little energy means I’m lazy. I feel like a burden for not having moved out, for not being able to be independent, for not having a job. Everyone I know has had jobs that they didn’t like and I feel like I’m entitled for wanting a job that I like and can do with the limitations I have. I feel like I shouldn’t want more than my neurotypical peers, like I should just get on with it and stop expecting special treatment. And yet, I know the limits of my mental health and of my body. These two sides keep clashing (which I’m sure doesn’t help my energy levels). It’s a horrible place to be stuck in and I can’t help but think that it’s connected to getting an Autism diagnosis so late: I grew up with the same external expectations as everyone else but a different internal capability. I know that now but it’s hard to hold onto that when the voices in my head are telling me that I’m just not trying hard enough. That one is a constant, in every area of my life.
I’ve often used being a Mac in a PC world as an analogy for Autism: most of the functions are there but they’re in different places or you have to find an alternate way of doing something. And I think it’s true here as well. When you run a programme that isn’t meant for the system you’re using, it doesn’t work as well. I think that’s a good analogy for being neuroatypical in a neurotypical world. I feel like I have not been designed for this system and so I don’t function as well as the people that have. Or maybe the system hasn’t been designed for me. It’s a chicken and egg situation. But you get my point. For whatever reason, I feel incompatible with my environment and that takes up a hell of a lot of energy.
I don’t really have any answers to this problem. I’m not even sure how to finish this post. This is something I struggle with daily and at the moment, I feel very worn down by it. I don’t want to spend my whole life planning in recovery time, replying to ‘how are you?’ with ‘tired’. I don’t want my life to be decided by my energy levels but I’m scared that it will be.
Posted on November 18, 2017
Living with depression is hard. Yes, I know, I’m stating the freaking obvious. But I want to write about something that doesn’t come up that often, in my experience at least. And when I say ‘living with depression’, I mean going through repeated bouts of depression over a period of time. I’m not diminishing the difficulty of going through an isolated experience; I just want to point out something specific to the continued one.
Being at your lowest is excruciating but it’s simple, when it comes to the complexity of emotions. Depression is overwhelming; it blots out everything. The world is one colour. But as you start to move out of that place, it becomes emotionally confusing. A lot of you is still depressed but there’s also a part of you that’s trying to move forward. And that conflict is exhausting. Your emotions are constantly clashing and that takes up so much energy.
I recently landed in the lowest place I’d ever been. I feel like I say that every time but I know that this was the worst I’d ever felt. I had a very emotionally traumatic meltdown – again, the worst one I’ve had – and ended up sitting in the middle of my local park, crying my eyes out at eleven o’clock at night. And it was that heaving kind of crying where it feels like it’s coming from a place inside you that’s deeper than physically possible. It was horrible and when I woke up the next morning, I was in such a deep depression that I couldn’t do anything. I literally couldn’t. I lay in bed all day, staring at the wall. I felt completely hopeless. I couldn’t see the point in anything. There was no point in trying to be happy, in trying to do anything, because the only real thing is misery.
It took days to start functioning again (move around, interact with people, eat, etc), but I was still firmly locked in that point of view. I couldn’t see the point of anything but the oppressiveness started to lift and other emotions started to creep in. I was able to smile again and sometimes I’d even laugh and that was really hard because I still felt so hopeless. It felt wrong. I didn’t feel ready to be okay.
I feel like I have two levels of mood, my surface mood and my inner mood. The labels speak for themselves but I want to elaborate a bit further. My inner mood is what I feel at the centre of myself (my automatic thought was to name it my ‘real’ mood but I know the surface mood is real too – please bear with me: words are hard!) and at the moment, that is depressed. If I had to choose one emotion to associate with myself, it would be a sad one, like depressed or disheartened. My surface mood reacts to outside stimuli: good weather, spending time with people I like, a new episode of my favourite TV show. Those sorts of things do create spikes in my mood. It can be really easy to brush those moments off because they feel so wrong when I’m depressed. But they’re both real and both deserve to be recognised. That’s why I like the two levels of mood idea. By having two levels, one emotional reaction doesn’t invalidate another. I can feel really depressed and kind of okay – even optimistic – at the same time. It’s too simplistic to think that we only feel one emotion at a time but when they’re so opposite, it just makes the whole thing more difficult, more confusing, more exhausting.
The only time the two seem to synchronize is when I’m really, really depressed. It sounds sad when I put it like that but right now, it’s the truth. I know that my surface mood can change so hopefully the inner mood can too. Hopefully I’ll reach a point where it’s not so low.
Posted on November 16, 2017
The last post was a heavy one with lots of emotional stuff in it so I thought I’d go for something that was a bit more light hearted this time – try and maintain a kind of balance. So here we go. The animals in my life have had a really big impact on my mental health so I thought I’d introduce them and talk a bit about the positives of having pets when you struggle with mental illness.
This is Lucky, our thirteen-year-old Labrador. We first met him when he was two days old and we’ve had him since he was about eight weeks old. He’s endlessly friendly and enthusiastic. One of my favourite things about him is how unashamedly excited he gets about everything: people arriving, food (even though it’s the same thing everyday), any kind of attention. It’s a good little reminder to appreciate the good things, even if they are everyday occurrences. As he’s gotten older, he’s become very sensitive, especially to people’s emotions. At it’s most extreme, he’s left the room when people on TV get upset. Poor boy. I can relate to that.
And this is Lucy, my two-year-old cat. She’s all energy and adventure, in the daylight hours anyway. Come the evening, she’s very happy to curl up on my bed with me. She sort of reminds me of a teenager that doesn’t want to be seen with her parents because it isn’t cool but once there’s no one around, she enjoys a good cuddle. She loves Lucky and often tags along on the evening walk around the block. I absolutely adore her. She’s incredibly calming to watch and play with; she’s so present and that’s really good for my anxiety. And having her sleeping beside me helps me to sleep because I can focus on her breathing (and purring) and block out any anxiety I have.
She also had kittens last year, which was a great holiday from real life. They were gorgeous and when I was watching them or playing with them, everything else fell away. It was like the world outside my bedroom didn’t exist. They were the only thing that helped me when Christina Grimmie was killed. I’d been watching her videos for years and she was the same age as me; it was very upsetting (and I’m still dealing with the emotions of that but I’ll save that for another post). Watching them play and wrestle and explore my bedroom with such focus and such fearlessness was very soothing. I’m so grateful to have had them for that period of my life. And I was very aware that, as one of the few humans in their lives, I was affecting who they would become, consciously or not. It made me feel like I was making a difference, even if it was only on a small scale.
But back to Lucky and Lucy. They frequently accompany me to therapy (although not together). Neither are actual therapy pets but having one of them with me often helps, especially when we’re talking about really tough stuff. They can be a distraction, a tension diffuser, a comfort.
So there you have it: my animals. They are so important to me and have such an impact on my life that I couldn’t not write about them. I hope you enjoyed this and if you need me, I’ll be curled up with either or both of them.
Posted on November 11, 2017
Feeling abandoned is a big thing when it comes to Borderline Personality Disorder. And events as everyday as someone not immediately responding to a text can trigger that feeling. The smallest slight can be incredibly upsetting and anything bigger can feel devastating. It’s never ending and exhausting. And with the fear of being abandoned hanging over you, relationships (of any kind) can be very stressful. They can feel like a waiting game, wondering how long it will take for the other person to give up on you.
As someone with BPD, I feel emotions very strongly and when something upsetting happens, it feels like I’ve been hit by a massive wave and it’s all I can do to find my way back to the surface. The emotion overwhelms me and there’s no room for logical reasoning. It doesn’t matter what else is going on; all my energy is taken up trying to process all of that feeling. It can take weeks to recover and I feel more fragile each time.
And what makes it more difficult is the fact that it’s not completely irrational; there is ‘evidence’ to support the fear. People have abandoned me in the past, both voluntarily and involuntarily, so whenever I try and talk myself out of the panic, my BPD lays out all these examples, ‘proving’ to me that I will always be abandoned. It’s an exhausting cycle.
I’m not going to go through my history of feeling abandoned, example-by-example, but there is one experience that I want to share. I think it’s too important to leave out. A few years ago, someone really important to me cut ties when I was in the lowest place I’d ever been (something they were aware of). I felt completely abandoned and it had a massive impact on my mental health and view of the world. I was so hurt and so confused and for a long time, those emotions overwhelmed everything. I felt broken. But slowly, that weight lifted. It took two years but I’m finally free of it. And that’s amazing. But it’s not the end of it. That experience has affected me, especially when it comes to my relationships and my anxiety around them. And like I said, it’s hard to talk myself out of that fear when I feel like I’m about to go through all that again.
I’ve wanted to write about this for a while but I wasn’t sure how to frame it, if that makes any sense. But a conversation with one of my best friends brought all of this to the surface.
So let me tell you a story:
One of my best friends had just come back from a trip to the US and was desperate to go back. I was in a pretty fragile place already (dealing with another situation where I felt like I was being abandoned) and watching her plan her next trip abroad felt a lot like she was abandoning me. I didn’t want to say anything and I felt guilty for feeling the way I did: she was building her career and she was so excited and here I was, wanting her to stay. But in the end, I had to say something. We’ve always talked everything through so, even though I was terrified of sounding needy and pathetic, I reached out and told her how I was feeling. She knows a lot about my mental health difficulties so I told her how I struggle with feeling abandoned and that I might need some extra reassurance around her upcoming trip.
(I want to add that although it might sound easy, it wasn’t. Part of me – a big part of me – was convinced that expressing these feelings would be the ‘final straw’ and that she would abandon me on the spot, that I had finally become too much to deal with. This is something that I think is often misunderstood about BPD. This reaction is not because of the other person; it’s because of the BPD. The other person could be the most reliable person in the world. It doesn’t matter. It’s the BPD telling you that everyone will leave, that you’re not enough to make the other person stick around. So defying that and telling my friend how I felt was very, very scary.)
And this is the important bit: how my friend reacted. Instead of telling me I was being ridiculous or brushing off my request, she responded compassionately. She told me not to feel pathetic or guilty, that she understood why I was feeling the way I was. She asked me how she could help, and said that she would do whatever she could to make it easier for me. She said, “I am not going to leave you.”
It was such a relief that I burst into tears. It meant (and still does mean) so much to me. She validated my feelings, asked me what she could do, and gave me the reassurance I needed. I wish everyone responded this way. Perhaps ironically for a condition with such close links to invalidation, these feelings often get written off as being oversensitive or overdramatic. And in my experience, that only makes it worse. Things are better now that the important people in my life understand where these feelings come from; before the diagnosis, the only explanation was that I was very sensitive and therefore needed to ‘toughen up’. It was a fault. And that’s what I thought too. But now that we understand it, we know how to handle it, how to approach it.
I will likely need to hear this again and again to combat my fear of being abandoned but that doesn’t minimise the importance of this moment. As I’ve said, change is a series of moments like these, moments I hold very close, like charms on a charm bracelet.
Posted on November 8, 2017
I hate Bonfire Night. I really, really hate it.
When I was fifteen, I was at the cinema with my two best friends. We were in the middle of a film when something brushed through my hair and landed between mine and my best friend’s feet. I don’t remember now if I knew it was a firework or whether my survival instinct just kicked in automatically because I was out of my seat in a split second. I tripped over a bag as I raced down the row and someone hauled me back up, dragging me with them. My memory of those few seconds is weird, almost as if belongs to somebody else.
But, fortunately for all of us, someone from the row in front of us had stamped out the firework before it had gone off (while threatening to cut the balls off the person who’d thrown it). The lights switched on and a cinema employee came running in to see what had happened. Someone had come up the back stairs, thrown a firework into the crowd, and then done a runner. It looked like someone had thrown a pebble into a pond, we’d all moved outwards, standing almost in a circle with the firework in the middle. There were offers of compensation and calling of ambulances but everyone was okay, apart from the shock of it. I don’t think it had really sunk in because they rewound the film and we sat through the rest of it, although the three of us held on tight to each other until the film ended. On the bus home, we all jumped every time someone hit the buzzer for the next stop.
I was freaked out but I didn’t really take it in until the next time I saw fireworks. I was with my family, we were a significant distance from where they were going off, but I went into a panic. I felt like my ribcage was shrinking or like my lungs were swelling and I couldn’t breathe. I wanted to run. I wanted to run until I physically couldn’t anymore. And after talking to my Mum about it, I realised where that feeling had come from. Worst-case scenario, that firework could’ve gone off in our faces. I don’t want to think about the consequences of that.
Over the years, I’ve avoided fireworks wherever possible. But I haven’t been able to block them out completely. Even when I’m curled up in my room, I can hear them. I don’t have quite the same dramatic response as I did but they’re still a source of anxiety. Every time I hear one go off, my stomach twists. I can’t relax; it’s like there’s a current running under my skin.
As much as I’d like to order the world to stop setting off fireworks, that’s just not possible. I can’t control that but there are some things I can control, things that make the experience a little bit easier:
- Create a calming environment – Fireworks going off outside my window is stressful enough without adding extra anxieties. So I try and remove the unnecessary ones and surround myself with safe things. For me, that’s familiar things. So on Bonfire Night this year, I took myself up to my room and curled up in bed with my cat and one of my favourite TV shows.
- Try to distract myself – Giving myself something to work on helps to shift the focus from my anxiety. Otherwise I’m just waiting for the next firework to go off, amping up my anxiety even more. What works depends on how anxious I am or how tired I am. Sometimes it needs to be something simple, like playing a game on my phone, something that doesn’t require a lot of brainpower. Sometimes it needs to be something that takes up every inch of my brain, like playing the piano.
- Making sure I have support – While there’s nothing anyone can actually do to help, having people checking in on me and making sure I’m okay (or at least not completely losing my shit) does make me feel a bit better. Or a little bit less panicked. And I’ll take what I can get. I think it just brings me back to Earth a bit when my anxiety starts to spiral out of control.
None of these things fix the problem or remove my anxiety but as I’ve written before, sometimes that’s not possible. Sometimes all you can do is get through it and try not to make it worse. This anxiety has gotten better over time; the sound of fireworks no longer sends me into a panic attack. Maybe one day I won’t even blink when I hear one go off. Maybe I won’t even notice it. But until that day, I’m just trying to make it through with as little anxiety as possible.
Posted on November 5, 2017
I did it. I graduated.
The last three years have been a whirlwind. As I said in my Instagram post on Thursday, “my degree was an endless mix of inspiring, exhausting, frustrating, ridiculous, exciting, stressful, and joyful.” That’s the short version. The long version is very long. I dealt with a lot of grief and disappointment. I struggled with my mental health, discovered I was Autistic, and started to untangle all the threads that come from that. And that’s outside of university. At uni, I wrote hundreds of songs, met some amazing people, got the opportunity to go to Nashville, and ultimately, became a better songwriter. There were classes I loved and classes I hated. It was a constant battle to keep the lid on my anxiety and sometimes I failed. But I wouldn’t change it. My experience is coloured massively by how good my third and last year was. There were moments where I hated it, where it made me incredibly anxious, where I had meltdowns so bad I thought I’d never recover. There were moments I thought I’d never get through, that I couldn’t do what I was being asked to do. But somehow I did. Somehow I’m here, with a first and two graduation ceremonies under my belt.
The first graduation was for UEL, The University of East London. My school, The Institute of Contemporary Musical Performance, is a specialist music college and while it operates independently, it’s officially part of UEL. So we were invited to one of their graduation ceremonies. My Mum and my Granny came to this one. It was very formal – it was caps and gowns. That was something I was looking forward to and something I was very let down by. I’d thought it would be fun but it became a very stressful experience. Maybe it didn’t fit properly, maybe that’s just how it is but my cape kept sliding back and strangling me and my cap kept falling off my head. It took seven bobby pins to keep it on my head. As someone who struggles with sensory stuff, which includes the way clothes feel, that was really hard and really ratcheted up my anxiety. Fortunately, spending time with my friends, messing around and laughing, helped to keep it at a bearable level.
The ceremony itself was a bit strange. Because I only went to UEL once, it kind of felt like I was intruding, like I didn’t belong there. All the talk of the ‘UEL community’ made me feel a bit disconnected from the whole thing but the speakers were very good. I’d like to share something Geoff Thompson, the chair of the governors, said in his speech: “You are strong. Don’t ever, ever forget that you are strong… Never, never, never, never, never, NEVER give up on your dreams. It is not an option. It is not a choice.” You know, that was just what I needed to hear, just as I’m leaving university and heading out into an uncertain world. It was inspiring. It was empowering.
And all of a sudden, we were lining up to walk across the stage to shake the chancellor’s hand. It was weird: I had tunnel vision. No one could have applauded me as I walked across the stage and I wouldn’t have noticed. I was completely focussed on walking towards the chancellor, shaking his hand, and walking down the steps. It’s funny how something that you usually don’t have to think about – like walking – suddenly seems to take a lot of effort. But I did it, I got back to my seat, and I cheered for my friends. We threw our caps and then it was over. Graduation one was done. I’d thought I’d stay for a drink with my coursemates but after all the anxiety, I was completely exhausted. So I (eagerly) returned my gown and headed home.
The second graduation was a couple of days later and much more fun. This was just our school so it felt a lot more personal. Even though I don’t have many friends outside my course, I recognised a lot of faces from the other courses and we’d all shared the same space. We’re all connected by that. We didn’t have to wear gowns but it was still formal. Everybody looked gorgeous; it was really fun to see everyone dressed up. All four of my parents came to this one, which was amazing. I’ve never had all of them at a school thing before so that made me very happy. I was positively giddy.
I really enjoyed the ceremony. The head of each course made a speech and then presented each of their students with the scroll. My favourite speech came from my programme leader, Jonathan. It was thoughtful and warm and inspiring. He even gave this blog a shout out, along with two other projects my friends have worked on. It was a very special moment. Another special moment was watching one of my best friends receive her scroll while her own song played. That was awesome.
And suddenly, it was my turn and I was walking across the stage, giving Jonathan a hug, and accepting my scroll. We posed for the photo and then I was moving again. I was a bit more aware of what was going on this time. The UEL one was a good rehearsal in that regard. There wasn’t an opportunity to thank my parents so I made the best of what I had. I located them in the crowd and did this:
It was important to me to do that.
Everyone received their scrolls and then we gathered for the reception. It was lovely to celebrate with everyone, to catch up, to introduce my parents to all these people who have played such an important part of my life in the last three years.
And that was graduation. The only other thing to add is that, to celebrate, we headed out for drinks. It was my first experience being in a club and my first experience drinking cocktails, neither of which I would say I enjoyed but it felt very empowering to try those new things and not feel trapped by my anxiety. Major thanks to my friends for looking after me and making it such a positive experience.
I will write more about my experience at university at some point but it’s a pretty big task. I need to go through my diaries and pull together some stuff before I can write an accurate account of that time but I will manage it at some point. It was a crucial time in my life. It’s a big part of who I am.