Posted on May 21, 2018
(Blog Note: I was hoping to post this yesterday but I just had to take a break from everything so it’s a day late. Sorry!)
As many of you will be aware, this last week, 14th to 20th May, was Mental Health Awareness Week and although I fully intended to have a series of mental health related posts ready to go up, life conspired against me to make that impossible. A big part of that was putting my first single out (available hereeeeeee!) so I’m not complaining but it has been stressful and taking up a lot of my brain. So my posts have been a bit all over the place – I’m working on that, I promise. But I did want to acknowledge this week because it is important.
I have seen so many social media posts this week where people have shared their stories and struggles with mental health and I’ve been blown away by each one. Sharing this stuff is such a big deal and I’m in awe of everyone who chooses to do so. This sort of stuff can make you feel like the world is shrinking around you but feeling understood opens it back up; it’s incredibly healing. I didn’t know how much I needed it until I found it. In my experience, talking about all of this has gotten easier, over time and with ‘practice,’ but it’s still hard. I still find myself hitting an invisible wall, choking on the air in my lungs, knowing that everything might change if I say the words out loud. It’s happened before. But I know that that’s the fear talking. And most of the time, I know better than the fear.
If you’ve followed me for a while, you know that I live with Autism Spectrum Disorder, Borderline Personality Disorder, Depression, Anxiety, Social Anxiety, and Obsessive Compulsive Disorder, although I wouldn’t blame you for losing track. My posts tend to jump around a lot, between different experiences and different diagnoses. Plus, things can change over time. Over the last twelve months, I’ve struggled particularly with the OCD, the anxiety, and the depression – the depression most of all. This time last year I was in a really bad place and one of the consequences of that was the decision to change my medication; it wasn’t the right thing for me anymore. Since then, I’ve been trying to find a new one without much luck; the side effects have been a rollercoaster ride and most of the time, I’m too numb to really feel any of my emotions. True, I’ve had very few meltdowns but, if meltdowns are the price of feeling things and therefore feeling like I’m actually alive, I will take them. So I’m not done with the medication search. Not yet.
I guess I’m surviving. I’m getting through. Hopefully, by next year, it will be more than that.
This week might have been about speaking out but that doesn’t mean it’s the only course of action that requires courage. Simply living with mental illness requires courage and as long as you are doing what you need to do to be safe and happy (or what will get you there), that’s all that matters.
Category: about me, depression, event, medication, mental health Tagged: anti depressants, antidepressants, anxiety, anxiety disorder, asd, autism, autism spectrum disorder, depressed, depression, medication, mental health, mental health awareness, mental health awareness week, mental health awareness week 2018, mental health blog, mental health blogger, mental health blogging, mental health week, mental illness, obsessive compulsive disorder, ocd
Posted on March 7, 2018
About a month ago, I went back to my psychiatrist. We discussed the Venlafaxine and since it hasn’t had the effect we’d hoped for, it was time to think about what to do next. The most obvious option, the one most likely to work in the shortest amount of time, was to add an ‘augmenting agent’ and so I started taking Lithium. I’m aware of the perception of Lithium but it didn’t worry me, not any more than any other medication anyway. I’m always hopeful that a new medication will work, and if that comes with the opportunity to defy expectations then it’s even better. So I was feeling optimistic and, as I did with the Venlafaxine, I took notes so that I could track any progress and/or side effects.
FIRST NIGHT AND NEXT DAY
As the first night and then day was pretty interesting, I thought I’d write this one up separately. I slept restlessly and woke up multiple times with night sweats. The first time I woke up was very surreal: I was overwhelmed by the physical sensations in my body. I remember thinking, “I can really feel my hands. I really have hands.” It was very strange. I struggled to get back to sleep and when I got up in the morning, I felt very nauseous. I had a headache all day and by the evening, I felt very spaced out and tired.
The restless sleep and night sweats continued, joined by complicated and busy dreams. I found it very difficult to wake up and I was so sleepy that I was falling asleep multiple times during the day. When I was awake, I was tired and weak, like there was no strength stored in my body. It was frustrating and upsetting to struggle to do everything I would normally do. I was spaced out and nauseous and shaky; if I stood up for more than about thirty seconds, I got dizzy and nauseous and my vision went white. It was horrible.
I was still having difficulty sleeping and was struggling with sleepiness during the day. I continued to struggle with nausea and feeling spaced out but I also felt low; I think I would’ve felt depressed if I was able to really feel anything. The shakiness and weakness also continued.
And we STILL have difficulty sleeping. It was taking me hours to get to sleep and hours to wake up and in the few hours between, I slept very restlessly. Then when I was awake, I was very sleepy. The shakiness, weakness, and nausea combination was still around. I also started to struggle with almost constant anxiety; there were stressful things going on but I couldn’t seem to shake it off once I’d done those things so it was around all the time.
Continued difficulty sleeping, especially staying asleep and then I was so tired that I fell asleep during the day. Those short sleeps were actually the best I’ve had in months, much better than the hours I got at night. I was also still struggling with the shakiness, dizziness, and nausea, as well as the anxiety.
The restless sleep continued, as did the struggling to wake up. On several occasions, I fought to wake up only to fall asleep again; I also fell asleep during the day multiple times. I was constantly tired. The nausea and dizziness also continued, as did the anxiety.
I did not like taking Lithium. It didn’t actually help my depression – I’m still feeling very emotionally numb and the fatigue has only gotten worse – and the side effects were constant and actually got worse over time: the difficulty sleeping, the shakiness/dizziness/nausea combination as well as all of those as separate symptoms… I was struggling so much that I had multiple doctors’ appointments to make sure that nothing else was going on. I had blood tests and blood pressure tests and even an ECG. They didn’t show anything outside the normal ranges but the fact that it was bad enough to warrant those tests meant that I booked an appointment with my psychiatrist for as soon as possible to look at my medication.
I have now had that appointment and we’ve decided to stop the Lithium; he was surprised and impressed, I think, that I’d stuck with it so long considering how bad the side effects were. Since the Venlafaxine hasn’t done much for me, I’d like to try something else but given how much is happening in the next couple of months, I’m reluctant to put myself through the ordeal of getting off it, the period of no medication, and then getting onto something new. So for now, I’m trying a new augmenting agent and I guess we’ll see how that goes. I think the emotional numbness is preventing me from getting too low about anything but regardless of that, I’m still optimistic about medication, even with all the bad experiences I’ve had recently. I fully believe that it was Phenelzine that made going to university possible and even now, years later, I still remember so clearly how good I felt when I started taking it. It felt like I was flying. It was amazing. Searching for that will always be better than letting the depression take over, even if I have to let it take over to remember that.
Category: anxiety, depression, medication, mental health, sleep, treatment Tagged: anti depressants, anti-depressant, antidepressants, anxiety, depression, dizziness, fatigue, lithium, medication, mental health, mental health blog, mental health blogger, mental health blogging, mental illness, nausea, psychiatrist, shakiness, side effect, side effects, sleep, venlafaxine
Posted on January 1, 2018
I’ve been thinking a lot about whether or not to have resolutions. In this particular phase of my life, everything seems so uncertain, both in terms of my mental health and my life post university. I have no idea where I’m going to be in a month so it seems reductionist to start imposing constraints. I don’t really like the expectations around them but I do like the concept, the decision to move forward with better habits. So I’m trying to think of some habits I want to foster and some goals, all which should be achievable, that I’d like to work toward in 2018.
WRITE MORE SONGS – While I was still at university, I was writing a lot of songs, which was awesome, but I haven’t been writing nearly as much since I left. That has mainly been due to a suffocating bout of depression and then the medication-induced rollercoaster that I’ve been riding to try and get out of it. I want to get to a place where my mental health becomes more stable and conducive to writing and then, hopefully, it will be all systems go.
RELEASE MUSIC – This was a goal for last year and it almost happened but the whole process has just taken longer than I’d hoped. But it’s still on track so hopefully my first single will be out soon. That feels like a real milestone that I’m so, so excited for.
FIND THE RIGHT MEDICATION – I’ve already kind of mentioned this but I want to reach a place where my mental health is relatively stable and to get there, I need to get my medication right. The Venlafaxine has been better than nothing but I’m not convinced by it. I feel like I should be feeling better by now, better than I am. It’s been a FREAKING LONG journey already, which will be worth it when we find the right drug or the right dosage or whatever. But while it’s on going, it’s really wearing me down. It’s easy to think that I should’ve stayed on the Phenelzine but I know it wasn’t really helping me by the end. So, yeah, I want to get to a reasonably good place in the next few months.
WORK ON BEING HEALTHIER – This is vague but it’s such a process and I figure that, as long as I’m trying, I’m achieving this goal. I want to work on drinking more water, swimming more, and so on. I was just starting to get into a really good routine when my mental health took a nosedive and suddenly it was all I could do to get through the day. I’m not sure I’m back to the level of being able to go to the gym but I do feel capable of starting the small changes, like drinking more water. Hopefully, as my mental health improves (as it is starting to, if very slowly) I can work on this more. I’m also aware that my relationship with food isn’t very healthy – again, another casualty of my mental health problems. So I’m throwing that in there too.
BECOME MORE INDEPENDENT – This is something I want to write more about in relation to Autism because it’s really important. For some people, Autism makes is really difficult to be independent and that can be a hard thing to get your head around. I’m constantly beating myself up for not having moved out like all my friends, for not having learnt how to drive, for not having a job. But the cold, hard truth is that, at this moment in time, my Autism does not allow me to be independent. With the meltdowns, fatigue, getting overwhelmed by sensory information, getting overwhelmed by emotions, executive functioning struggles, and so on and so on and so on, it’s just not possible. This goal is deliberately vague because it depends hugely on my mental health and what I feel up to doing (and because I’ve only just really started thinking about it) but by the end of this year, I want to be a bit more independent. That’s a journey that I will definitely document.
READ MORE BOOKS – I cannot remember the last time I read a book (that wasn’t for college/university). I think a big part of that comes from my mental health struggles. My concentration has been absolutely terrible so I haven’t really felt able to get into a book but I’ve also felt quite alienated by the books I’ve tried to read. So, so many books are about relationships, about finding ‘the one’ (this seems to be especially true of the Young Adult genre – even when the main storyline is about something different – which is what I was searching through when I last tried to find something to read), and I’m just not interested in that. I don’t want my whole life to revolve around my mental illness but as for my life right now, it really does. That’s fine; it won’t be like that forever. But that means that, right now, I want to read about people like me, people struggling with their mental health, and I just haven’t been able to find much that I connect to. It’s an on going struggle. If you have any suggestions, let me know! This year, provided that my concentration improves as I get my medication right, I want to finish five books. That’s a low goal but I’d rather set a low goal and achieve it than struggle with feeling pressured. I am now part of a book club with my friends and although I haven’t yet been available to go, I’m hoping that that will help with this goal.
IMPROVE MY MUSICAL SKILLS – This is another one from last year, which was again derailed by my mental health. Having no energy and no motivation is a horrible place to be. So my hope is that that will improve (it already has a bit) as well as my concentration and then I will be able to get back to guitar and piano lessons and really improve those skills.
GO THROUGH MY POSSESSIONS – This sounds like a massive job but as I’m moving house this year, I’m going to have to pack everything anyway. I might as well go through it all at the same time. I do really struggle to throw/give things away – I probably fit at least some of the criteria for hoarding disorder – but I’ve been working on this and it feels like the right time. A clean slate and all that.
I’m a big fan of the idea that you can start fresh everyday, or even within days, but I think New Year is a good excuse to get some perspective and create a sense of purpose for yourself. I don’t think New Years Resolutions are useful when they cause anxiety but if you can use them to empower you, I think they can be really helpful. I guess we’ll see how well I do.
2018, I’ll make you a deal: you do your best and I’ll do the same.
Posted on December 31, 2017
It’s become a bit of a tradition for me to summarise the year on Instagram with a collage of photos and a sappy caption but since I have the blog this year, I thought I’d write something a bit more in depth (although I will still do my Instagram, fear not). I want to collect my thoughts and take a look at what I loved and lost and learned.
This has been a hard year, mainly because of my mental health. I struggled with my medication for a long time before having the worst meltdown I’ve ever had and that was the trigger for a really bad bout of depression that I still haven’t really recovered from. It’s not as bad as it was but it’s been really hard. Because of that, I decided to change medications and that process has swallowed up most of the year. Honestly, that’s been awful. I’ve been in a really bad mental place, it’s made me physically unwell, and probably the worst part is that it’s affected my cognitive functioning, making me unable to write. That has been unbearable. But it hasn’t been all bad, mental health wise. I confronted someone who really hurt me, I got involved with research studies into Autism, I applied to ‘Behind The Scars’ and talked openly about my experiences with self harm. I somehow got over my paralyzing anxiety about moving house and I’ve started communicating more with my family. So while it’s been a really difficult time, I can see that I have made some significant strides this year.
Another big thing was graduating university. I had always wanted to graduate with First Class Honours and while I expected it of myself, I still can’t quite believe that I managed it. I want to write something much more in depth about my experience at uni because there were a lot of ups and downs but ultimately, it was a great experience and I’m really proud of everything I achieved there. I also made some amazing friends who I will hopefully have in my life forever. The UEL graduation was stressful and exhausting but the ICMP graduation was satisfying and fun. And going out afterwards was a bizarre experience but I was proud of myself for defying my anxiety. My only regret about finishing uni and then graduating is that my depression overwhelmed them: when I found out I’d got a First, I didn’t feel anything. I wanted to be ecstatic but I couldn’t feel it. And yet, I would’ve been devastated had I not got a First. I’m trying to accept that situation for all it was though; I can’t change it now.
And then, of course, there is the music. This was obviously massively affected by my mental health but there were still some great moments this year. I wrote my most important song so far and I’ve been working on its release ever since (fingers crossed for early 2018) and that is so amazing to me. I’m so excited for it. I’ve also had some really fun recording sessions and I’ve had some awesome performing experiences: I got to play a songwriters’ circle with Lauren Aquilina, I hosted another songwriters’ circle at my friend’s charity benefit for TWLOHA, I played a showcase for a record label, and I got to play for my local Autism charity, Amaze. I mean, how cool is that? I also had another really special trip to Nashville. And last but certainly not least, I’ve been to some incredible concerts this year, including: The Shires, Sasha, East of Eli and Chyler Leigh, Country2Country, Tin Pan South Festival, Willemijn Verkaik, Kelsea Ballerini, Lady Antebellum, NADINE, and Maren Morris. Concerts are so, so important to me. Those are the moments where I really feel alive and so I always keep money aside for when they come around. They’re the only thing that I really spend money on.
I’m not sure whether it’s even possible to classify this year as a good one or a bad one. It would be easy to file it away as a bad year because of the difficult mental health stuff but there have been a lot of amazing moments. I went back to my two favourite places in the world, I listened to great music and saw some incredible art pieces, I saw my kittens all grown up, and I had some amazing experiences with the lovely people I’m so lucky to call my friends. I even started drinking alcohol for the first time; that’s been an experience! Thus far, I don’t really like it but I’m really, really, REALLY enjoying not feeling controlled by my anxiety, at least not in that area of my life.
Overall, this year has been a year of waiting. It really has: waiting for the medication to work, waiting to feel better, waiting to release my first single, waiting to move, waiting to graduate… Even when I was still at uni, I was counting down the days until we finished (because I didn’t want to leave and I was stressed about getting everything done in time). Always, always waiting. This year has been measured in seconds, minutes, hours, days, rather than experiences, far more than any other year. So that’s my hope for the new year: to wait less and do more. I know that many of these things were out of my control and when there were things I could influence, I did my best to do so. And I did some pretty cool stuff while I was waiting for other things. But I really want next year to feel different. I can’t remove waiting from my life but I’d like to not feel so stuck when I do have to wait.
“2017 was the year of waiting: waiting to release music, waiting to move house, waiting for medication to start working, waiting to feel better. It’s been slow and painful so I’m grateful to be moving on. But there have been some great moments this year too. I wrote some songs I’m really proud of, saw some amazing concerts, and went back to Nashville. I tried to see my friends as much as possible and worked hard on my mental health. Hopefully I’ll start to see some of that work pay off in 2018.” (x)
Posted on November 1, 2017
Just over a month ago, I started taking Venlafaxine for my depression. I’ve tried lots of different anti depressants in the past, many of which I had a bad reaction to, so I was nervous. Weaning myself off the Phenelzine was hard and I was very, very depressed but somehow, I reached a point where I felt ready to feel different. It was a bit like breaking the surface after being underwater. I was, and still am, desperate to feel better.
I started on a very low dose, half the lowest therapeutic dose, so that my body could get used to it. But despite that, I felt the effects straight away and incredibly strongly. I was very nauseous. It was so bad that I couldn’t really concentrate on anything else; all my concentration was focussed on not throwing up. It made me dizzy and I was tired all the time. I did check with my psychiatrist to make sure it was okay to keep going with it and he said it would pass so I focussed on tolerating it.
The other immediate change was my sleep. I went from struggling to wake up before eleven (and I mean really struggling: it felt like I was drowning) to being wide awake at eight o’clock in the morning. It was bizarre.
The nausea faded around the beginning of the second week, which I was very grateful for. My mood, while still pretty low, was stable, and I was still waking up much earlier than I had been able to previously. However I started having headaches and I was exhausted all the time, which made it very hard to do anything.
In the third week, I went up to the lowest therapeutic dose. This caused a pretty dramatic reaction. For the first few days I was so tired that I fell asleep in the middle of the day, something I haven’t done in years. But despite that, I was waking up even earlier, between six and six thirty am.
By the middle of the week, I couldn’t concentrate at all. I couldn’t hold a conversation, I couldn’t follow the storyline of a forty-minute TV episode, I couldn’t even play a game on my phone… That was scary, but I couldn’t even really feel that because I couldn’t seem to process the emotion. I started to feel faint and very shaky and that went on for several days. If I stood up for longer than a couple of minutes, my legs started to shake and my hands shook so badly that I couldn’t hold a pen. That was very unpleasant.
Most of the fourth week was lost because of severe, unexplained leg pain that had me in tears. My psychiatrist didn’t think it had anything to do with the medication and DVT was ruled out but other than that, we don’t know what caused it. I’ve been taking painkillers since and it’s been better. So that tired me out and overwhelmed everything else. But since then, the shaking has mostly stopped and I’m back to waking up between eight and nine in the morning.
This week is the first where I’ve felt different mentally and emotionally while taking Venlafaxine. I wouldn’t say I feel better but I’ve been feeling a bit lighter. That feels very strange and a bit scary. With this new lightness, I’ve been feeling a bit lost which I’ve written about here. I’ve been so depressed for so long that I can’t remember what it’s like to not be depressed. But despite all of those confusing emotions, I am pleased that this medication is starting to work. It will probably take another month or so to really know how it’s affecting me but it’s looking positive and I’m really grateful for that.
Hey! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as a number of mental health issues. I’m also a singer-songwriter so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.