Finding HopeNew Old Medications Thoughts
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.
A Little Life Update
Posted on July 13, 2019
Hi guys.
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.
Insert Joke About Being Iron Woman
Posted on June 15, 2019
Several months ago, I had some blood tests done and they revealed that I was incredibly low in iron. Since I’ve had some pretty unpleasant experiences with supplements, my doctor recommended an infusion and set it up straight away at the local hospital. I was really impressed by the efficiency of it all: the speed at which the problem was identified and the treatment arranged. That was the last we saw of that.
The actual hospital visit for the infusion took six hours. All was going smoothly: they’d taken my blood just to double check the iron levels but then we saw no sign of the doctor for over an hour. When someone eventually appeared, they told us that somehow they’d managed to test for everything but iron and were having to run the tests again. It took so long that I fell asleep in the chair.
Hours later, they finally had the infusion in. It was cold and made me feel kind of sick. It was a bit like when you get a general anaesthetic, if you’ve ever had one of those. But it was okay. It only lasted about fifteen minutes and then I had to stay for half an hour to make sure there weren’t any negative interactions. But then it was all over and I could go home. I thought I’d keep notes on how I reacted in case it would be useful to anyone else.
WEEK 1
I slept very late everyday (sometimes into the afternoon when I’m usually up around eight) and still struggled to get up. Despite all the sleep, I could still nap in the day and would start dozing off around ten. I had absolutely no energy. I tried to continue my routine of getting up early to swim but I could barely drag myself downstairs (or even out of bed); I couldn’t stand up long enough to shower and had to wash my hair in the bath, which I absolutely hate doing. I was very shaky and felt just generally unwell.
WEEK 2
At the beginning of the week, I also reduced two of my medications, Clomipramine and Flupentixol, as I’d previously planned with my Psychiatrist. The infusion came about so quickly that the plans collided with no time to adjust. I also went down with a migraine during the week so it’s hard to tell what caused what and how each thing affects the others.
Slowly, I started to wake up at my normal time again but I was still very tired and sleepy. Doing anything was a struggle but by the end of the week, I started to feel a bit better and a bit more like myself pre-infusion. I also started to feel like myself pre-Flupentixol: I had my first shower standing up in weeks and I walked around London without feeling like I was going to faint. It felt a bit like a fog was lifting.
WEEK 3
The week began with my first shower standing up and I was positively giddy about it. I had to lie down afterwards but it was amazing to be able to do something again that had been taken away. I was still physically exhausted but I no longer felt like I was going to faint if I stood up for too long.
Mentally and emotionally, I felt like I was declining. I felt depressed and restless; I didn’t know what to do with myself.
I did spend the second half of the week sick, feeling nauseous with a cold and sore throat. I don’t know whether that’s related to the infusion or the changing medications or whether it was a coincidence. Either way, I spent several days in bed feeling miserable.
WEEK 4
At the beginning of the fourth week, I reduced the Clomipramine again. I wish all of these things could’ve happened separately from each other so the effects could be clearly identified by unfortunately, that just wasn’t in the cards this time. The reduction of the Clomipramine, an antidepressant, no doubt had a real impact on my mood. I felt overwhelmed by feelings of depression and hopelessness and I just didn’t know what to do with myself. I couldn’t settle or concentrate so it was hard to distract myself from these feelings. My anxiety also increased, which was an added struggle.
Energy wise, I felt back to my ‘normal’ levels of tiredness: I couldn’t – can’t – stand or walk for very long, big events and big emotions require several days of recovery, I need a lot of sleep. But I’m a lot better. I’m swimming again and going up to London has been easier. So on that front, there has been improvement.
Everything has been fairly consistent since then and eight weeks after the infusion, I went back for a blood test to see if the infusion worked. The results were certainly interesting: by my maths, my iron levels have gone up 4000%. So, for the moment at least, it seems to have worked. In the medical sense anyway – I’m not seeing as much of an improvement as I would’ve hoped, energy wise. I’d hoped that this might explain the ongoing trouble I have with fatigue but if this is up to normal levels and I’m still struggling as much as I am, then it’s not the answer, or not the whole answer.
It’s not the end of the road. In three months, I’ll be going back for another blood test, this time to find out whether my body is holding onto and processing the iron properly. So that may yield more answers, more information. From there, I’m not sure what happens but it’s not the only route we’re pursuing. There’s got to be an answer and I’m not giving up yet.
Don’t You Lose Your Halo
Posted on June 8, 2019
The last few months have been particularly difficult, anxiety and depression wise. I came of my anti depressants and one of my anti anxiety medications with the intention of starting a new medication but starting that new medication has been a real struggle. This new low brought on by the withdrawal and the lack of meds has been possibly the worst I’ve ever felt. I’m aware that it’s affecting my thinking and my decision making but right now, the starting of a new medication just feels impossible. Just the thought of it triggers an autistic meltdown. So it’s safe to say I’m struggling.
BUT the last week has been better for exactly one reason: I got to see Maren Morris in concert! In fact, I got to see her twice! So that’s what I want to write about: seeing her and how concerts are something that can really help me when I’m feeling very low. There’s something about the energy that just lifts me, makes my body feel lighter and that’s so very valuable when I’m in this place.
My first show of the tour was Bristol. As I’ve mentioned in previous posts, if possible, I like to go to multiple shows of a tour because I get overwhelmed so easily. Seeing the show more than once allows me to really experience and enjoy all of it. Concerts are pretty much the only thing I spend money on so I’ve been very fortunate in this endeavour.
The show was incredible. I’d been feeling very, very depressed in the days leading up to the show and didn’t even want to go – it felt like it was wrong to want such a simple ‘fix’ to my low mood and like seeing such an amazing songwriter would hurt too much given that I haven’t been able to write a song in months (if not longer) – but as soon as Maren Morris took the stage, I started to feel lighter. It felt easier to breathe. She’s an incredible songwriter and performer and her voice is out of this world: I remember once describing it as sounding like a gorgeous sunset. Hearing the new songs was like hearing them for the first time and hearing the old ones was like a wave of nostalgia: they remind me of my degree, of my first trip to Nashville, of writing songs in my best friend’s living room, of a younger, less troubled version of myself.
The song that really got me was ‘A Song For Everything.’ This is what I wrote in my diary after the show:
“Given how emotional and tearful I was, I was crying by the first chorus. It just lifts my soul and makes me feel lighter, like I’m going to be okay, like I need to dedicate my life to writing a song like that and so I have to be alive to do it. I was breathless by the time the song finished.”
“I don’t often cry at concerts (it usually happens when I hear the songs again for the first time after the show) but this one just got me. My depression is the worst it’s ever been but tonight… helped. I could write a book about the emotions of the last few days but I’m so tired that even this is a struggle. @marenmorris, thank you for being there exactly when I needed you to be. Thank you for reminding me that there’s a song for everything and that maybe one of them could be written by me, but that I need to be here to write it. #girltheworldtour“
I had a day to recover before my next show, in London. At the freaking Royal Albert Hall. This is probably my favourite venue I’ve ever been to and it’s my ultimate dream to sing there one day. One can hope. And work hard. Anyway.
The day of the show, I cried all day. I was miserable, deeply, deeply miserable. I was on the edge of a meltdown all day but somehow I was holding it back because I knew if I had a meltdown, I wouldn’t be able to go to the show. Me and Richard (my best friend and writing partner) had bought the VIP packages, which meant we would get to meet Maren before the show and I couldn’t miss that. But even though I was looking forward to it, I was paralysed with anxiety. I didn’t know what to say or do and the fear of wasting the opportunity was so great that I couldn’t think. I couldn’t think my way through the problem and that was almost the worst part.
I cried all the way to London (listening to ‘A Song For Everything’ on repeat) and I only really managed to get myself together when I arrived at Victoria station. Holding onto that song helped somehow. I got to the Royal Albert Hall, met Richard, and we (all the VIP package holders) were all taken in for the pre-show Q&A and meet and greet. It went okay. I’m not gonna lie, I was actually shaking. It wasn’t specifically because I was anxious about meeting her – I’d met her on the previous tour and she’s absolutely lovely – it was more that I was worried about it going wrong, that I’d waste the experience by saying something embarrassing or meaningless. Looking back at it now, it went okay. It could’ve been worse, it could’ve been better. Maren was very sweet but I didn’t feel able to be as honest as I would’ve liked to be, for multiple reasons.
When the doors opened, we went to find our seats and discovered that we were FRONT AND CENTRE. At the Royal Albert Hall. For Maren Morris. I think that was when I first started to feel more excited than anything else – anxious, depressed, lost (“The depression was receding – just out of reach – and it felt easier to smile, even if it was a little slow and stiff.”). And all of that completely fell away when the show started.
It was one of the best shows I’ve ever been to. Maren is one of the best performers I’ve ever seen, her vocals are unmatched, and I love her songwriting more than I can properly express. The upbeat songs were so much fun and the slower songs were quiet moments filled with emotion. It might sound like any other concert (any good concert) but the energy was bigger and bolder and brighter than any other concert I’ve been to. I lost my voice long before the show was over but that didn’t stop me from singing along. And as I said in my diary, “I’m always self conscious dancing but sometimes, if all the stars align, the constant tension in my body releases and I can just move as my mood dictates. It’s not very elegant but it is fun.” She even had special surprises planned: performing ‘Seeing Blind’ with Niall Horan and bringing a string quartet (an all female string quartet!) on stage for several songs. The whole thing was magical. I never wanted it to end. But unfortunately it had to, although she closed the show with style: an amazing performance of ‘The Middle.’ Me and Richard have spent so many car journeys and writing sessions and just hours of our lives singing that song; singing it with Maren Morris from the front row of the Royal Albert Hall may be one of my favourite memories of all time.
Another snippet from my diary: “The performance was incredible and hearing everyone sing along just made my heart soar. It was all gone and I felt alive and light and happy. I was tired and achy but it was amazing.”
Getting home was hard. I had a huge adrenaline crash and all the negative emotions returned and that, combined with several unpleasant incidents on the train, had me in tears before I was even halfway home. I also struggle physically after concerts: my whole body hurts and that was starting to set in so yeah, getting home was a struggle. But I made it and my Mum was kind enough to prepare macaroni and cheese and ice cream (not together), which did help a bit. My brain wasn’t really ready to go to bed but a migraine was setting in (another side effect of concerts) so I didn’t have a choice.
“Yesterday was a very difficult day. The depression was bad; I shook, I screamed, I cried (probably seven or eight times). It was miserable. But in the evening, I got to see @marenmorris at the @royalalberthall and my god, it was like it was built for her voice. What a special artist in such a special venue. Somehow, me and @richardmarcmusic ended up with front and centre seats and the whole show was just incredible. Every second was fun, every second was amazing. I wish it could’ve gone on forever. The tears returned on the train and I cried most of the way home but I am so, so grateful to have been there, so, so grateful to have had that escape for a few hours. I will treasure those memories.”
Recovering from these concerts has been an experience. Over a week later and my back is still bothering me. But it’s an improvement: the day after the London show, I could barely walk and it took days for the limping to fade. But I’m doing better. Surprisingly, the post concert low hasn’t been too bad. Mainly, I just miss being at the show, in the show. I physically miss it. My body misses it. But I’m doing okay. These concerts have given me a lift I desperately needed and will keep me going while I take my next steps, whatever they end up being. For that, I’m incredibly grateful.
Quotes That Helped Me (Validation Edition – Part 2)
Posted on May 25, 2019
Of course, there are always more quotes! I had too many quotes on this subject to fit into one post so here are some more quotes that will hopefully validate some of your harder, more complicated feelings.
“I think my life is of great importance, but I also think it is meaningless.” – Albert Camus
“I don’t want to believe, I want to know.” – Carl Sagan
“I cannot understand why the world is arranged as it is.” – Fyodor Dostoyevsky
“God, I just want to be important. I just want to be someone real.” – Ritapa Neogi
“As far as I could see, life demanded skills I didn’t have.” – Susanna Kaysen
“I know too much and not enough.” – Allen Ginsberg
“I feel very small. I don’t understand. I have so much courage, fire, energy, for many things, yet I get so hurt, so wounded by the small things.” – Anais Nin
“The world changes too fast. You take your eyes off something that’s always been there, and the next minute it’s just a memory.” – Michel Faber
“Memories do not always soften with time; some grow edges like knives.” – Barbara Kingsolver
“It was because I was scared. Scared of standing out, scared of being invisible. Scared of seeming too big, scared of being too small.” – Malorie Blackman
“I don’t know where the strength went, I don’t remember losing it. I think that over time it got chipped away, bit by bit, by life, by the living of it.” – Paula Hawkins
“I am afraid I will be like this forever.” – Sierra Demulder
“For the first time in my life I understood how someone could consciously decided to commit suicide. Not because they were deranged, not because they were nuts, but because they’d been to the top of the mountain, and they just knew in their heart they’d never get there again. It was never gonna get, never gonna be that way ever again.” – Joe Biden
“The difference between how you look and how you see yourself is enough to kill most people.” – Chuck Palahniuk
“Sometimes suffering is just suffering. It doesn’t make you stronger. It doesn’t build character. It only hurts.” – Kate Jacobs
“I’m sick to death of this particular self. I want another.” – Virginia Woolf
“I’ve spent half my life not knowing the difference between killing myself and fighting back.” – Andrea Gibson
“I was horrified by life, at what a man had to do simply in order to eat, sleep, and keep himself clothed.” – Charles Bukowski
“You never forget. It must be somewhere inside you. Even if the brain has forgotten, perhaps the teeth remember. Or the fingers.” – Neil Gaiman
“There are times when I am convinced I am unfit for any human relationship.” – Franz Kafka
“Sometimes, I feel the past and the future pressing so hard on either side that there’s no room for the present at all.” – Evelyn Waugh
“Too much emotion, too much damage, too much everything.” – Ernest Hemingway
“It all ends in tears anyway.” – Jack Kerouac
‘Invisible’ Music Video – Out Now!
Posted on May 14, 2019
I’m so excited to announce that the ‘Invisible’ music video is finally out. This time last year, I put this very special single out and although I’d planned to put the video out straight away, life and mental health got in the way. But now it’s Mental Health Awareness Week again and I thought it was time this video saw the light of day. I would love it if you’d watch and I really hope you like it. It’s so, so special to me.
Almost two years ago now, I got together with Rosie Powell (my incredible director and videographer) and we planned this video. I really wanted to focus on the lyrics and the story behind the song so we came up with the idea of painting the lyrics on a wall (shout out to one of my parents for letting me paint all over my old bedroom wall). I was super excited. But having never been ‘in’ a music video before, I was also really nervous about being on camera. I felt really self conscious and worried about how my issues with eye contact would affect the video. Autism problems, am I right?
Day one was painting day. We set up in my childhood bedroom (and by that I mean, we lugged all the furniture out – which I then fell over multiple times) and got to work painting the lyrics on the wall.
It was really fun but weirdly, really hard work: it was very physical and I was exhausted by the end of it. It was also really cathartic to physically put those words out into the world. I’m not very artistic – I’ve never been very good at drawing or painting – so this was all new to me: seeing what I’d imagined in my head out in the real world. It was very satisfying to see this…
… turn into this:
It was a really good day and I’m really proud of the work we did.
Day two had Richard (my writing partner and general partner in crime) coming down to Brighton and we shot the ‘performance’ section of the video. I felt very self conscious with the camera on my face so much but both Rosie and Richard are so lovely that I felt very safe. Again, it was exhausting – that might be my issues with fatigue coming into play – but really satisfying and fun.
I had a lot of plans for this single and the video but alas, they weren’t to be. Life happened and my mental health took a lot of hits (if you’ve been following this blog, you’ll be aware of some of them). My depression has been brutal and made doing anything musical almost impossible. It’s been a long, hard road but I’m so, so glad this video is out in the world. I’m so proud of it and I’m so grateful to have worked on it with such lovely people. I wouldn’t have wanted my first music video to have come to life any differently.
The New Plan
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.
