The New Plan

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.

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Claudia Boleyn on BPD and Obsessions

I’ve written about Claudia Boleyn’s videos before but this is another great one that I think really clearly explains something that happens with Borderline Personality Disorder (also becoming known as Emotional Intensity Disorder) and various other mental health problems. I really recommend watching it.

In this video, Claudia talks about how, when you’re struggling with your mental health, you can develop obsessions with certain things, particularly fandom related things: fictional characters, books, TV shows, etc. These special interests can overlap with autistic special interests but they can also come about as a coping mechanism; they can become an escape from the difficulties of the real world.

She talks about how she can categorise her life by her obsessions, including Emmerdale and Anne Boleyn and certain areas of art history. She talks in particular about her obsession with Anne Boleyn, how it strengthens her and gets her through the really tough times. She even uses Boleyn as a surname: “I use it to exist in the world.” She talks about how she uses this obsession and others to understand herself. All of this makes those obsessions really special and important. I can definitely relate to this. My life can be divided up by my obsessions: animals but particularly horses – I obsessively read the Animal Ark and Saddle Club book series – Harry Potter, crime dramas, Taylor Swift, certain youtubers, anything superhero related…

“My identity and my life is sort of filled up with the stories of other people rather than stories of my own.”

With BPD, there’s the extra layer of struggling with your identity and your sense of self. Claudia talks about how she would go to school dressed as her favourite characters and how a teacher once asked her, ‘When will you come to school dressed as yourself?’ But that’s really hard when you don’t know who you are. I’ve always found it very easy to lose myself in fandoms or characters because I don’t know who I am to begin with and I’ve had a couple of experiences where I’ve done things I didn’t actually want to do because I thought that’s what a character would do, i.e. what I should do to embody those good characteristics.

“I’ve never felt like I have a proper identity in myself so I’ve sort of constructed one in a way based on what I admire and what I want to be and what will make me as good a person as I can be and what will make me contribute to the world but it’s really tough.”

It can be a good, helpful strategy – until it starts to dictate your emotional state.

“I think this isn’t spoken about enough with BPD, especially because we can struggle with identity and who we are and what sort of people we are. I think we often construct ourselves based around fiction and around those characters we admire and I think it matters a lot to us. It feels like it becomes a part of our identity in a way, so when it goes wrong, it feels like we’re falling apart. Yeah, it’s difficult.”

Another problem in BPD is that of regulating your emotions. Small things – day to day things – can have massive impacts on your mood. It can be exhausting and stressful to go through such ups and downs and it’s constant; there’s a lot of fear and uncertainty involved. So escaping into an obsession or fandom can be helpful and soothing but then, when something goes wrong in or around that fandom, for example, it can cause really negative emotions because your escape, your safe place, has been threatened. It might seem extreme from the outside but it’s very real and personal if you’re going through it.

I really relate to this video and I’m really grateful to Claudia for putting it out into the world. We need to talk about all parts of living with mental health, not just the relatively straightforward ones.

A Letter Under The Floorboards

Today is exactly a year since we moved house. That was a terrible day. It was stressful and upsetting and exhausting. I had a meltdown when we finally collapsed in the new house (surrounded by boxes and carefully balanced furniture) and neither me nor my Mum slept that night. It was all just too much.

It’s better now. I’m still adjusting, but then I had spent most of my life in that house so I didn’t expect a quick recovery. I’m getting there. My room almost feels like my room.

Since we moved out, we’ve actually learned quite a bit about the history of the house and the people who lived there. Our favourites are two women who lived and worked together their whole lives, the first head and deputy head of Varndean School. We even found pictures of them, which is really cool. We were all weirdly moved to learn these stories.

When we moved out, I wasn’t thinking about the history of the house and our part in it. I was just trying to figure out a way to say goodbye. So I wrote a letter and tucked it under the loose floorboard in my room. It was a letter to any and all future occupants, asking them to look after the house for us, for me. We’re part of the house’s history now and perhaps, one day, someone will find this letter and feel the same way about us as we feel about these two women. And since we live in a technological age and the first step of investigation is to google something, I thought I’d put this out into the internet. Maybe one day they’ll find me.

To whoever finds this,

This has been my bedroom, on and off, for about seventeen years. That’s most of my life. That’s a surreal thought, one that I’m trying not to obsess over. It took a long time to feel okay about moving and I’m scared that thinking too hard about all of it will be the wind that blows me back into that storm. I didn’t think I’d survive it the first time. I don’t want to leave but I don’t want leaving to be a life altering tragedy. I’m trying to remember that I don’t need this room to be me, even if it feels like that sometimes.

A lot has happened in this room, in this house. I grew up here, watched thunderstorms, brought friends over for dinner, celebrated birthdays and Christmases. I wrote stories and songs and my brother learned lines and turned the flickers of ideas into masterpieces. I said a last goodbye to my cat of fifteen years, learned that I could love another one, and then raised two litters of kittens with her. I taught my dog to sit, sneaked him onto the sofa when no one was home, and sang to him while emptying the dishwasher. I studied for GCSEs, A Levels, and my degree. I graduated with a first and I found out in this room. I had my heart broken. I struggled with my health and my mental health. I found out that my Dad had died.

 I worry that leaving this room, this house, means leaving all of those things behind and that I’ll lose myself because of that. It may not be rational but it’s how I feel. I hope that I’ve managed to box all of that up with my belongings but I guess I’ll see when I get to the new house. There’s a little voice in my head that says that the rooms feel empty because we’ve packed all the memories and emotions but I’m scared to believe it.

Maybe this is all too flowery and fluffy for you. That’s fine. A room can be just a room. A house can be just a house. But regardless of whether you see it as four walls or a time capsule, please take care of it for me. For us. We have loved it dearly and hope that you will do the same. Fill it with life (and extra radiators because, as you’ll soon find out, it’s practically impossible to keep it warm). I hope you will feel as safe here as I have.

Look after this place. I’m trusting that you will.

LAH

16/04/18