Finding HopeA Lot Has Been Happening
Posted on October 12, 2019
My sincerest apologies for not posting in so long. Life has been hectic and difficult and busy and strange. It’s been really difficult to write, to write anything at all (apart from my diary, which I’ll explain in a minute) so I just had to give myself a break from posting here and hope that you guys would understand. It’s just been too much. I don’t think I’m ‘back,’ but hopefully there won’t be such big gaps between posts and maybe we’ll even get back to weekly posts at some point.
So here’s what’s been going on, so you’re all up to date…
TWENTY FIFTH BIRTHDAY
First things first, I turned twenty five. I’m not gonna lie, I was having a bit of a quarter century crisis. There’s a definite milestone about turning eighteen and then twenty one but turning twenty five felt (and still feels) like a big step into adulthood and I’m finding that very scary. I still feel stuck at seventeen: young and naïve and vulnerable. So I’m struggling with it a bit.
The day itself was a struggle. My anxiety is through the roof (which I’ll talk about it in a minute) but the compulsive writing of my diary (something I’ve struggled with on and off for a long time) has become really extreme, to the point where I’ve been finding it difficult to do anything else. So while I had some really lovely moments on my birthday (twenty five yellow roses from my Mum, some really lovely presents, and dinner with my family), all I could think about was how I should be writing, how I was wasting time that should be spent catching up with my diary. It was very upsetting because there were so many things I’d rather be doing than writing my diary or stressing about it.
I’ve had a habit of many years to think on my birthday ‘this year will be better’ or ‘this year I’ll be happier.’ But I’m done with that. I’m not going to waste time comparing the ups and downs of the last several years but I never felt as if those statements came true. I always felt as if I was struggling just as much, if not more so, than the year before. So, as I said, I’m done with that. I have no expectations of this year. At the moment I’m too anxious to think beyond the next week or so, so I don’t even really feel capable or doing it anyway. It’s all too overwhelming.
Anyway, I’m twenty five. I’m not sure what that means yet. So I guess we’ll see.
I’VE STARTED A MASTERS
Unsurprisingly, it’s in songwriting. I’m doing it part time so I only have half the workload as a traditional Masters student and that has turned out to be absolutely the right choice. At the time, my main reason was because it would allow me to really take in what I was learning and apply it to my songwriting, rather than just absorbing it only to regurgitate it for an exam or coursework piece. And that’s still true but it’s turned out to be completely necessary for my mental health. One day of classes (plus the commuting) requires at least two days of recovery and my mental health, particularly my anxiety, has made it very, very difficult to complete the work required and so having only half the workload and the extra time to do it in has been a blessing.
I’m just about to start week three and so far, I’m really, really enjoying the classes. This first module is about Creative Process, the theory of it and the exploration of our own, and the content we’re covering and discussing is just fascinating. I actually wish the two hour lecture was longer. For example, we just learned about autoethnography (exploring your personal experience and how it connects to wider cultures and experiences and so on) and it’s really hard not to stop my current research and just dive face first into that.
But anyway, the practical songwriting class has been a bit up and down for me personally. My writing massively depends on my mental health and so when I’m really anxious, I find it impossible to write. During the first week, I barely managed to turn in a song but this week, I’ve felt more able to write. I don’t want to comment on the anxiety, on whether it’s passed or not because that just makes my anxiety worse. If it comes back after making a statement like that, it will just be even more of a struggle. So regardless of the anxiety, I’ve felt more able to write and am currently in the middle of my second song. I love writing again and I love having writing briefs to explore and experiment with. So, so far (without the stress of assessment), I’m really enjoying it.
Also, I have a really small group and so we’re getting to know each other pretty quickly, which is really nice. It’s so inspiring to hear the developing music of others again, as well as getting feedback on your own fresh work. I’ve really missed that.
I’M RELEASING AN EP
WHAT?!
Yes, I’m releasing my first EP. My God, it’s been an emotional complicated process. I’ve gone through so much since I decided I wanted to release an EP last year and I honestly don’t even recognise myself. I’ll talk more about that in a minute but first, let me introduce you to the project…
And I’ve just announced the first single…
If you want to get the information as soon as it’s released, you can follow my social medias, which are all listed on the main page of the blog.
I don’t think I could untangle my feelings about the songs if I had thousands of words to do so but I think a big part of that is all the anxiety I’ve been struggling with. Living with extreme anxiety, everything feels like the wrong choice, everything makes me feel sick and useless and miserable. It’s really hard to be excited about releasing something like this, about anything, when I feel like that. So it’s a struggle. I’m trying to be positive and enthusiastic because I have been those things but I’m finding it hard right now. But a lot of hard work and love went into these songs and this project and I am really proud of that.
More details soon!
I’M LIVING IN A MELTDOWN
I was going to write a whole post about this but then all this time passed and it just made sense to include it here.
Just over a month ago, I had the worst meltdown I’ve ever had. In the middle of Victoria train station (for those of you not familiar, one of the biggest train stations in the UK). A big plan had been changed and the new one was vague and I was alone and anxious already. I completely fell apart: sobbing and shaking and hyperventilating. There was nowhere quiet to go so I curled up in a chair, desperate not to be seen, desperate to disappear. I couldn’t think. I didn’t know what to do. And I couldn’t get hold of anyone on the phone so I had no one to give me advice or help me calm down. Eventually I did manage to get hold of my Mum and she had to literally walk me step by step onto a train home, plans abandoned.
Usually it takes me a couple of days to recover from a meltdown, sometimes a week if it was a really bad one. I feel anxious and fragile and raw and completely overwhelmed. But this time, those feelings didn’t go away. Over the last month, I’ve been constantly filled with extreme anxiety, so much so that I’ve been almost unable to function. I’ve felt so fragile and so easily overwhelmed that any new stress has triggered a meltdown, resulting in multiple meltdowns a day: screaming and crying and throwing things. It’s been absolutely hideous. It’s like I’m permanently living in a meltdown, with waves of anxiety and hypersensitivity and then the waves of shouting and crying. I don’t know if that makes sense; I’m still looking for the perfect metaphor, at least for my experience.
So all of this has affected every other part of my life. Sometimes I can push through it and manage what I need to manage and sometimes – a lot of the time right now – I can’t. I’m trying. I’m doing my best.
So now you’re up to date. To a degree. Some of this stuff is really hard to explain, as I’m sure you know if you’ve experienced it or anything like it. There’s a lot going on, a lot of stressful stuff in particular, so life isn’t exactly a cakewalk right now. But as I said, I’m trying.
I hope you’re all well, or at least coping as well as you can. Hopefully I’ll post again soon.
New 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.
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.
Finding Hope 