Finding HopeTo Define or Not To Define
Posted on May 11, 2018
Every few days, I’ll be scrolling through one social media or another and I’ll see a post baldly stating, ‘Don’t let your mental illness define you!’ or ‘You are more than your mental illness!’ These have always irritated me but I didn’t really stop to investigate why. But I’ve been thinking a lot about identity recently, both in the personal sense and the abstract, and I think I’m starting to make sense of it.
As a person, I can be a bit perverse. If someone tells me I can’t do something, I instantly feel compelled to prove them wrong. And so, when these posts tell me that I am not defined by my mental illness, a part of me starts yelling, “But I am defined by my mental illness!” Childish, I know, but true. The thing is that I don’t necessarily think that that is a bad thing. Of course I’m defined by my mental health problems: they take up significant time and effort and emotion. Why wouldn’t I feel defined by something like that? It has defined me, it has shaped me in the same way that any big part of my life has, like my love for songwriting has, like my love and loyalty to my friends and family has. Anything that has caused significant emotion in me, whether it be good or bad, has become a part of me and sometimes those parts are big parts.
But an important thing to remember, I think, is that our identities are constantly shifting and changing. What defines us now won’t necessarily define us in the future. With everything that happens to us, our lives get bigger and grow around the old parts, the same way the roots of trees grow around any obstacle they find in their path. Right now, my mental health overwhelms pretty much everything but that may not always be the case. The medication might start to work, helping me to manage the symptoms, or something bigger might happen in my life. The point is things change.
On the other hand, I could choose it, choose to make mental health a ‘defining’ part of my life. I could choose to turn it into something, to use my experience. And I think that that is something I need to do. I don’t think I can ignore what is such a significant part of my life or view it as something to just get past. That feels disrespectful to the amount of time and effort and emotion that I – and the people in my life – have had to put into this. If life is about the journey rather than the destination, then this is an important part of the journey and, like every significant moment, I will be adding this to my backpack to carry with me.
Yes, It’s Another Medication Review
Posted on April 28, 2018
In my last session with my psychiatrist, we went over my experience of taking Lithium and decided that it was time to try something else. He actually said that he was impressed I’d held out so long so that’s something to be proud of. I think. I wasn’t trying to be a martyr: I’ve just had so many experiences of people brushing me off that I always feel like I have to have enough evidence to prove that it’s real. Anyway, he prescribed me Lamotrigine and because that can be taken with Lithium, I could switch without having to wait for the Lithium to get out of my system. So that was good. I’m getting increasingly frustrated by this process.
As always, this is just my experience. Please, please don’t ever mess around with your medication without the advice of your medical professional.
WEEK 1
The first week was really tough. I swung sickeningly between hot and cold, had migraine-like headaches, felt nauseous and shaky and very anxious. I also felt the closest thing to depression that I’ve felt in a while. With the hope of the sleeping through the worst of the side effects, I had started out by taking it at night but straight away I found that it was affecting my quality and ability to actually sleep. I had several nights of barely sleeping until I changed to taking it first thing in the morning.
WEEK 2
The main thing in the second week was the extreme fatigue. I slept long hours and found it difficult to wake up in the morning, then I struggled to stay awake but often fell asleep during the day. I was easily overwhelmed and felt anxious most days. The feelings of depression hadn’t dissipated either.
WEEK 3
As prescribed, I increased the dose so there wasn’t much time for the side effects to settle. My sleep was still pretty disrupted. I slept restlessly but woke early and fell asleep during the day. I was still incredibly tired. I had periods of feeling very shaky and dizzy; at one point it was so bad that I couldn’t get out bed until the evening. I was still feeling anxious and depressed and although my concentration and motivation hadn’t been great up to that point, it became practically non-existent.
WEEK 4
Again, I was sleeping a lot but still absolutely exhausted. I was also very anxious even though there didn’t seem to be a cause for it, which of course made the anxiety worse.
WEEK 5
This week was my first week in Nashville so it’s hard to tell what was a result of that and what was a result of the medication. I was more anxious than I have been in months and it got to the point where I was questioning everything, even the things that I’m usually steadfast about. That was very distressing. The jet lag hit me hard and I was constantly exhausted, falling asleep in the middle of the day and still struggling to stay awake until a reasonable bedtime.
WEEK 6
The second week of Nashville was a bit easier. I was still exhausted but the anxiety faded a bit as plans started to work out and produce results. That usually lessens some of the anxiety but there was still more than on a normal day and although I had one evening of feeling on top of the world (playing Song Suffragettes – see my Nashville post), I was still struggling to keep my head above the surface of the depression that felt like it was just waiting to drag me under.
WEEK 7
During this week, I moved house, something I had been long (at the very least) apprehensive about. So, in the days before, I was anxious and unsettled and then the actual move was very difficult. I was almost too anxious to function and on the evening of the day we moved in, I had a meltdown for the first time in months. It was a horrible experience and for days after, I was fragile and shaky and emotional. I barely slept and even though I don’t eat much anyway, I barely ate at all for a few days. And at the end of the week, something – I don’t know what – triggered a new, suffocating wave of depression that really threw me. That was as low as I’ve been for a very, very long time. I was very depressed and kept bursting into tears; I felt like glass filled to the top with water that you only have to nudge slightly before it spills over. The smallest thing – nothing even – made me cry, or start laughing hysterically that then turned into crying. I was miserable and exhausted. In the midst of all that, we increased the dose but I honestly can’t tell what was medication and what was just life.
Week 8
It took a while to get out of that depression, even just a little bit. And then I was back in the vague blankness that has been characteristic of my recent experiences with medication: it’s either anxiety and depression or nothing. There was a point when I thought that would be preferable to the extremes of emotion I’m used to feeling but now I know it isn’t. Feeling is everything; there is nothing worse than apathy. And that’s where I still am.
Another thing that I never even wrote down is that I’ve been experiencing muscle twitches, mostly in my legs. It’s not dramatic and it happens so infrequently that I didn’t even equate it with the medication until it had happened several times. It’s not an issue but I think it’s worth mentioning and something that I was concerned would get worse if we continued to increase the dosage.
But after speaking to my psychiatrist again, we’ve decided to try something new. Lamotrigine hasn’t been terrible but it hasn’t been good enough: my concentration and motivation are still terrible, I’m exhausted, and the anxiety and depression are still significant struggles. It hasn’t made anything worse but it also hasn’t made anything better, which is the point of them. So I’m trying a new medication. I know that Lamotrigine is there if I need to come back to it but I need something to hope for.
And a final note: if you’re struggling with medication, whether it’s your first try or your fiftieth, please don’t give up hope. This process is ridiculously long and complicated but when you find the right one, it’s so worth it. You can be you again but more efficient. And that is potentially it forever. You may never need to try another medication again. So this time – this struggle – is an investment. Try to hold on to that.
Goin’ Back To Nashville, Thinkin’ ‘Bout The Whole Thing
Posted on April 21, 2018
Ten points if you understand that reference.
As many of you know, I was in Nashville from 1st April to 11th April so here is a post all about that: the travel, the being away from home, some of the things I did, and how I felt about it all. A big part of this is that I do just want to write down some of my thoughts about it but I also think that documenting these experiences as a person with Autism, as a person with mental illness, could be helpful, especially when there is so little information and testimony about living with these issues.
The flight out was smooth. In the literal sense, anyway. But about an hour before we arrived in Charlotte, North Carolina, I started sneezing. I didn’t think much of it until we were walking through the airport and it still hadn’t stopped. And then my nose started to run (this is gross and probably too much information, but it was like water was just leaking out of my nose) and all the sniffing I was doing to try and stop it gradually gave me a terrible headache. So that was a struggle. And it just wouldn’t stop. By the time we arrived in Nashville several hours later, I had the beginnings of a migraine and was practically useless. Fortunately, I was travelling with my Mum and one of my best friends, Richard (who is also my writing partner), so I could hand over responsibility and focus on staying upright. We got to our accommodation and I fell asleep as soon as I sat down (getting back up and walking to the bed was the most asleep I’ve ever been while awake and, no joke, I laughed hysterically until I fell asleep). The jetlag got me good – I was so tired that I fell asleep in the middle of the afternoon every single day – and I still hadn’t gotten myself in sync by the time we were flying home.
Before I get on to the rest of the trip, I have to say that none of it would have been possible if my Mum hadn’t come with me. This was my third trip to the US and she has been with me each time, sometimes working and sometimes taking a holiday – she freaking deserves one with how hard she works, at everything – and I could not do it without her. This probably deserves it’s own post but in short: she helps me keep my anxiety under control, helps me process everything that’s happening, removes the stress around food by either being there to catch me when I fail at it or completely assuming responsibility for it… She is the certainty I need when every other thing around me is uncertain. All of these things make it possible for me to be functional, let alone make the most out of the trip and the opportunities I’m presented with. She is a complete superstar and I’m so, so grateful.
Another thing that I think is important to mention is how much I struggle with food when I travel. I have huge, huge anxiety around food (see my recent post) and there aren’t many things I can manage. I remember thinking, before my first trip, that there would finally be things I could eat but my perception of the food was wrong; I was convinced I’d gain loads of weight but I actually lost more than half a stone. Since then, both me and my Mum have been more prepared: we travel with things like rice cakes (one of my staples), shop on the first day, and never rely on restaurants or venues. So, this time, we made a huge thing of Stir Fry at the beginning of the week and I basically ate that all week. I know that some people would find that boring but for me, it was comforting to know that there was a meal a day that I wouldn’t have to worry about. Sometimes that’s all I can manage so I need to know that it’s something I can eat. Again, a major shout out to my Mum for supporting me with that. And to Pancake Pantry for getting me excited about food.
The reason for going at this time of year is the Tin Pan South songwriting festival. Over five days, there are a hundred songwriters’ rounds where all of these incredible songwriters play their songs – some famous, some never released – and tell the stories that inspired them. As a songwriter, it’s the most amazing and motivating experience. As you guys probably know from my playlist post, I saw so many people that I was so excited by but I’m not sure anyone is interested in that, given that this is primarily a mental health blog. Let me know if you would be interested in that. But having said that, I can’t not mention some of them: Natalie Hemby (one of my all time favourite songwriters) was incredible and hilarious; Alyssa Micaela and Emily Shackelton were wonderful; Abby Anderson’s ‘History’ was one of my favourite songs of the festival; the show with Jeff Cohen, Kara DioGuardi, Jamie Hartman, and Ingrid Andress (one of my favourite finds of the week) was mind blowing and definitely a highlight; and Nikita Karmen was another great discovery. All of the shows were fantastic though and I felt so lucky to be there. I felt (and do still although my mental health has crashed since) so, so inspired and can’t wait to write new songs having learned so much.
And on that note, I got to hang out and write songs with one of my favourite people in Nashville. Her name is Caylan and we met during my first trip to Nashville in 2016. We wrote one of my favourite and most personal songs several days later. She is such a beautiful songwriter and again, we wrote some really cool songs and it was so, so nice to see her again. I also did some writing with Richard, which is one of my favourite things to do.
The biggest, most exciting part of my trip was playing a Song Suffragettes round. I’ve been following them on social media and watching their shows on Periscope for years now and I have always been so inspired by their mission to promote these incredible up and coming young women in country music. I’ve always done my best to see the shows in person when in Nashville and it has truly been a dream of mine to play at one of their rounds. And on this trip, that dream came true. It was nerve wracking but it was one of the most positive experiences I’ve ever had and definitely so in the last year: everyone behind the show was so lovely and the other girls were so sweet and so welcoming. My performances weren’t perfect but I’m still proud of them and I felt so, so honoured to be there. It was inspiring and motivating and so special. We finished the show with a cover of ‘Delicate’ by Taylor Swift, which we’d put together in the back room before going on stage and, again, that was really fun. Oh, and the video of that is now on YouTube!
After the show, we went out to the lobby to meet and talk to anyone who wanted to talk. That turned out to be a real highlight. I hadn’t expected anyone to want to say more than hello since it was my first time playing and no one would’ve known me before the show but so many people came up to me and the conversations we had were and are very special to me. Two of the three songs I played are incredibly personal, including one about my experiences with trying to get help with my mental health, and these are the songs that seem to really connect with people. I’ve had people come up to me, tell me what it meant to them to hear these songs, and share some amazingly personal stories. It blows my mind that a little song that I wrote in my friend’s front room on a Thursday afternoon has made people feel safe enough to share these really important things with me. I’m so honoured. That whole night was so special to me. A massive thank you again to everyone behind Song Suffragettes for all you guys do and thank you, thank you, thank you for inviting me to play.
The last couple of days were a bit of a blur after that but my last activity in Nashville was a memorable one. We went to The Candle Bar to make our own candles, something I’d seen on Instagram and really wanted to do. I really, really struggle with candles because of how sensitive to smells I am so I was excited to find out whether I could create a candle that I could not only tolerate but also enjoy. Because you’re pouring out the fragrance and the wax, you are in control of how strong the candle will smell; obviously you want to be able to smell it but this made it possible to add slightly less of the fragrance so that it won’t be overwhelming. It was a really fun experience, simple and chilled and interesting. I had commitment issues over which container to use and had to change once I’d chosen the fragrance because the colour of it didn’t match how it smelled, but choosing the fragrance was easy: there were only two that I liked. I ended up going for the pink pepper and grapefruit because, as a smell, it had no sharp edges, if that makes sense. There was nothing jarring about it. Since I’ve been home, I’ve only lit it once but I really like it. It’s subtle, which is perfect for me, but I can still smell it and it does actually smell like the fragrance I chose. So I’m really happy with it and would definitely recommend the experience.
And then it was time to go home. Usually I dread going home but after the roller coaster of emotions that I went through on this trip and having the kittens waiting for me, I was ready to go. But it was still hard. I’ve jokingly compared my love for Nashville to a long distance relationship but fortunately, I know it isn’t going anywhere anytime soon. I’ll be back and it will be there, waiting for me. The plane ride home went fine, although we took extra precautions and I wore a mask for most of it. I felt ridiculous but I kept reminding myself that I was trying to avoid more illness and discomfort, that I am allowed to take care of myself.
Before I sign off, there are a couple of other things that I wanted to mention and the first one is about the emotions throughout the trip. The first half of the ten days was really hard: I was overwhelmed by anxiety and struggling to stay ahead of a particularly bad episode of Depression, my self doubt was paralyzing, and I just had this overwhelming longing to go home where I felt safe and less like I was going to fall apart at any second. It was horrible, but fortunately it did pass (although it’s come back in full force since I’ve been back) and I was able to enjoy the rest of the trip apart from some anxiety (which is totally normal – I can’t remember the last time I wasn’t anxious, and very anxious at that). The lows were very low and the highs were very high, as usual. And with everything on top of that, I was completely and utterly exhausted. So it was definitely a rollercoaster.
The other thing I want to say is that it was vital that I had some time out from it all. I’m going to write a ‘tips for travelling when you’re autistic’ post but I also want to include it here. With all the emotions, the anxiety, the walking and standing, etc, I had to have some recovery time. Apart from the times where I just fell asleep on the sofa, we would watch TV together (shout out to Episodes and Queer Eye – highly recommend both). I tried to ignore the little voice in my head that kept telling me I was wasting the trip by doing that but I tried to remember that I was doing it to ensure that I could make the most of the trip. It’s hard to see it that way sometimes. But without rest, I wouldn’t have been able to go out every night – sometimes to two shows – and I wouldn’t have been able to write the best songs I could and I wouldn’t have been able to enjoy the experience. So yes, if you need to take breaks, take breaks.
And that’s it for this post. I hope it was interesting, that there were a few helpful things in here. I have lots of blog posts on the go or in the planning stages so I’ll talk to you all soon!
Finding Hope 