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 10, 2018
The last year has been really hard.
I’ve struggled with depression for a long time now and while I knew what it meant to be hopeless, I’d never really felt it until now. And that made me realise that I hadn’t had a clue. I’m starting to think that it’s something you can’t truly understand until you’ve experienced it yourself. I don’t think I can even really describe it. It’s unlike anything I’ve ever felt and sometimes words just aren’t enough. Sometimes they aren’t big enough to fit around the feelings.
Talking about this makes me very anxious. I don’t want people thinking that I’m not grateful for the things I have because I am. I really, really am. But that’s not how it works. Depression and hopelessness have little to do with the reality of your life. Good things can be happening but, in my experience, the feeling is so strong that it can overpower everything.
So, having said that, I thought I’d share something I wrote when I felt overwhelmed by that feeling:
“And I realised that this is how life is. It’s one bad thing after another and there’s nothing I can do about it. I’m going to feel like this forever so what’s the point? What’s the fucking point in trying to be happy? That was my turning point. I felt the world shift. Everything felt really clear. I don’t know how I didn’t see it before. I don’t know why it took me so long.
I’m not sure there’s anything that can change this. So now what? I’ve been staring at that question for ten minutes and I have no idea what comes next. Moving forward is agonizing and I can’t go back. So I don’t know what to do. I’m stuck. And all the while, time is passing, so easily. It’s like water and water always finds a way to get to where it’s going. Is this drowning? Is this what drowning feels like?”
It’s so scary to feel that way. When misery is inevitable, nothing matters. Whether it’s eating, getting out of bed… Everything feels pointless. There’s a stillness, a finality to the world. I felt like I had disappeared. And while I’m not in the eye of that storm anymore, it feels like a bit of a before and after moment. My perspective has shifted, everything feels a bit different now. I’m not the same person as I was before that feeling. I still haven’t figured out how I feel about that.
One day I’ll write more about this but for now, this is all I can do.
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 December 29, 2017
I meant to post this yesterday, which actually was the 100th day, but then I managed to break my memory stick, where the file was saved. So that threw a spanner in the works. But here we are. The files were recovered. No harm done.
I’ve been taking Venlafaxine for 100 days now so I thought it was time I compiled my notes and summed up the whole thing. I know that when I started taking it, it would’ve been really helpful to know about someone’s experience. My psychiatrist gave me all the medical information but that didn’t really prepare me for what it felt like. So if you’re about to start taking Venlafaxine or are thinking about it, maybe this will help you. And if not, maybe this will give you a little insight into one experience of taking medication for a mental illness.
Week 1 (Dose: 37.5mg)
The nausea was so strong that all I could think about was not throwing up. I was very dizzy and tired all the time. But it was much easier to wake up in the mornings, quickly rather than having to drag myself into consciousness.
The nausea faded a bit. I had headaches and was exhausted all the time. I continued to wake up early.
Week 3 (Dose: 75mg)
I was so tired that I fell asleep at random but I was still waking up early. I felt very faint and was too shaky to do anything but I had no concentration so I couldn’t do much anyway.
The week was overshadowed by severe, unexplained leg pain. I had several doctors’ appointments to rule out the medication and DVT, the next most likely explanation, but eventually it faded by itself. Aside from that, I felt a bit lighter emotionally.
I had some leg pain but it faded much more quickly. I was exhausted and very sleepy, regardless of how much sleep I got.
I was so very, very tired, so tired that I could barely do anything. But I was still waking up very early.
Again, still very, very tired but I was also feeling very anxious and depressed. I also noticed lots of bruising, especially on my legs that didn’t seem to have a cause. All I had to do was lean on something hard, like the edge of a table, and I’d have a bruise.
Week 8 (Dose: 150mg)
A bad week. I felt very disconnected and depressed. I was also exhausted so I didn’t have the energy to do any of the things that can help. I was also pretty unwell for a couple of days but I don’t know if that was related or just a coincidence.
I started struggling desperately to wake up. It was like being trapped between being awake and asleep. It took all my concentration to wake up but all I had to do was blink and all that effort is wasted and I have to start all over again. I was exhausted and sleepy all the time.
I was struggling desperately to wake up and still exhausted and sleepy all day.
I reduced the Quetiapine from 125mg to 100mg (which I was prescribed while taking Phenelzine to help me sleep – I’d wanted to come off it straight away but was advised to wait so that I wasn’t dealing with reactions from both medications), which made waking up easier but I was still exhausted, depressed, and without any motivation.
The sleepiness started to creep back in and I was still exhausted and without motivation.
Again, I was really struggling to wake up; I couldn’t stay awake but I also couldn’t get back to sleep either. I managed to get the Quetiapine down to 50mg but I wasn’t sure if it was helping or not. I still had very little concentration and motivation which was really difficult and upsetting.
Week 14 (Dose: 225mg)
To combat the sleepiness, I reduced the Quetiapine to 25mg so my sleep was very all over the place. I was waking up really early and not getting more than about six hours. But I did feel more awake and alert which was a relief. I had several really productive days and wrote two songs after not being able to write for more than six months. That gave me an evening of complete joy, something I can’t remember feeling. Unfortunately that only lasted one night and my mood dipped afterwards because I missed it so much.
My mood was fairly stable, no major ups or downs. I wasn’t depressed but I wasn’t feeling that positive either. I was tired and sleepy and feeling a bit lost.
I just wanted to draw particular attention to how long this process can take. When I started my last medication, I felt better very quickly but it’s been a very different story this time. It’s not as simple as taking the pills and feeling better. There’s the time it takes to decide or justify that you need a new medication (or a first medication), the time it takes to come off the old one, the time it takes to build up and adjust to the new one… I started this process in May and it’s now December. Seven months and I still don’t feel that much better. I’m hanging on to hope that things will start to get better – I’m holding on to that one really good day – but it’s hard.
I think there is a lack of understanding when it comes to this stuff. From the outside, it can seem like you’re not doing anything to get better and there’s a lot of guilt attached that, from other people and from yourself. But on top of whatever mental health problem you’re dealing with, there’s adjusting to the medication and whatever side effects come with it. That’s a lot. It’s exhausting physically, mentally, and emotionally and you shouldn’t feel pressured to do things you feel unable to or feel guilty about whatever you need to do to get through it. I’m still trying to learn this. I constantly feel like I’m not trying hard enough, even when I’m so exhausted that I don’t think I can get out of bed. But that’s a topic for another day.
I hope you all had a lovely Christmas and I’ll see you in the next post.
Posted on December 5, 2017
Over the years, I’ve had periods of feeling really far away. It often overlaps with my bouts of depression but sometimes it creeps in out of nowhere and I feel completely lost, untethered from everything around me. It fades in and out like a fog, sometimes with no warning and often there’s nothing I can do to dissipate it or avoid it. It can be really scary, especially when it first started to happen, but at the same time, it’s like I can’t really feel that fear or any of my emotions. I’ve described it in different ways but they all describe the same feeling: feeling completely disconnected from myself. But I thought I’d include a few of those descriptions because they give more of a sense of how it feels:
To be completely honest, I’m not sure what causes it, given the overlap of the different mental health problems I struggle with. This is something I have a lot of anxiety about, not being able to pinpoint where individual problems come from. Everything’s connected to everything else. Everything influences everything. But from my own reading, it seems to be common in depression and in Borderline Personality Disorder. It’s often a coping mechanism for stress or overwhelming emotions. The Mind website has a great page about this. My experiences line up best with the description of ‘Depersonalisation’.
I still haven’t found anything that does much to help it but there are a few things that give me a few seconds of relief, of connection. Usually, it’s about tapping into my senses. That seems to bring me back to the world a little bit. So things like opening windows, sitting in the sun, touching leaves or flowers, stroking a pet, having a cold shower or holding something cold… they don’t fix it but they do have a positive effect. Even if it’s tiny, they do create small positive spikes in my mood. They’re like stars in a suffocatingly dark sky. With this, it’s more about getting through it than trying to fix it. It’s about creating one moment after another to carry you through to the other side.
I want to add that I’ve also used self harm to ‘wake myself up’ from this. I’m not advocating it; it’s dangerous and damaging and really difficult to get free of. But if nothing else, I’m honest and it has helped. When I’m in a really bad place, I don’t want to hear that I shouldn’t do it because it feels like the only thing that helps but when it’s not quite so bad, I try really hard to find other ways to cope. I try the things I’ve listed or I try to distract myself. I don’t want to get too far from the point of the post so I’ll come back to this in another post but I felt like I had to include it here.
Friends and family have asked me what they can do to help and if I’m honest, I don’t really know. It can be hard to think about that when I’m just trying to get through it. But I do want to help them help me. At some point, I will write more about this, but I do find it really helpful when the people around me let me set the pace and decide what I can and can’t manage. Sometimes a push is helpful but in this situation, it isn’t. A sense of control grounds me a little bit. Plus, there are some things that are just really hard to manage when you feel like you can’t connect to your emotions. For example, I find it really hard to write songs and be creative when I feel so disconnected from everything. So being able to (and feeling safe to) adapt my activities does help. And talking. Talking it through, figuring out solutions, letting off steam. That really helps.
Category: bpd, depression, mental health, self harm, tips, Uncategorized Tagged: advice, borderline, borderline personality disorder, bpd, depersonalisation, depression, dissociation, emotions, feelings, mental health, mental health awareness, mental illness, self harm, self injury, senses, sensory, sensory information, tips
Posted on November 25, 2017
If I could change one thing about myself it would be my energy levels.
I’ve struggled with fatigue for most of my life. When I was twelve, I suddenly got sick and missed a lot of school. I was nauseous and so tired that even walking upstairs was exhausting. I went to the doctor, had many, many blood tests, saw various specialists but no one could figure out what was happening. No one could find anything wrong. And yet I was still very unwell. The only clue we had was that the blood tests showed I had had Glandular Fever at some point. But that was it. Months passed and we tried lots of different approaches but nothing helped. I was managing a bit of school but it was only a handful of classes a week and even that exhausted me. I basically lived on the sofa, missing out on pretty much everything.
Just over two years in and someone suggested something called the Lightning Process. It sounded strange but I was desperate so we said yes. It’s a fascinating idea: changing the pathways in your brain to affect your body and your health. I went to the three-day training course but by the end of the second day, I knew something had changed. I felt completely different and it showed. I still had very low stamina but somehow I had more energy. It was like a switch had been flipped. I went back to school and although I did still struggle a bit, it was so much better than before.
Everything seemed normal until I was eighteen and doing my A Levels. The stress was overwhelming and before I knew it, I was drowning in exhaustion. Somehow, I made it through my exams but my mental health deteriorated to a point where I couldn’t start the next course I’d planned to do. I struggled with both anxiety and depression and my fatigue seemed – and still seems – to be inextricably linked. It’s not as simple as ‘I’m more tired when my mental health is bad’ but there is a correlation. Medication has helped and was one of the major factors in getting me through university but it’s still something I struggle with daily.
When I was diagnosed with ASD, I was told that fatigue isn’t unusual and sleep problems are common with Autism. Personally, I’ve struggled with insomnia but more often, I sleep long hours only to wake up as tired as when I went to sleep. It’s like sleeping is just a break between days; I don’t feel like I actually get any rest from it. I think that it’s also to do with how hard my brain is working all the time. Simply existing requires a lot of processing of information: my surroundings, what other people are saying or doing or feeling, sounds, smells, as well as my own reactions and emotions about all of those things. I have to actively process all of that and it’s exhausting. That’s a normal day. If something emotional happens, good or bad, it takes all of my energy to deal with that. To me, strong emotions are like fog and it can take days or weeks to work my way through it. Sometimes longer. I also live with a lot of anxiety, which has always done a number on my energy. That anxiety feels like a programme running in the background of my brain, using up my energy, physically and mentally.
It’s a constant struggle, a constant frustration. I know that I have less energy than the people around me but I can’t seem to change my expectations. I try over and over again to do the same amount as everyone else but I can’t sustain it. Sooner or later, I crash, completely exhausted. I’m getting better at managing my energy and building in recovery time but I can’t seem to stop myself raging against it. I can’t accept it. I feel a bit like one of those wind up toys that just keeps running into a wall. I want to do so much more than I have the energy for and that’s really, really hard to deal with. As is the long-term nature of it. You can’t just quit your life for a few days like when you get the flu or have a migraine. I’m not making light of those things – I’ve had and hated both – but the need to keep pushing forward despite feeling so exhausted and the anxiety about not making any progress wears me down in a way nothing else does. It affects every aspect of my life and it’s starting to feel like a part of me.
This makes it impossible for me to work. I’ve been extremely fortunate to get some benefits over the last few years but it’s still very, very stressful. I find it so difficult to adjust my thinking, to adjust to my new reality. I keep trying to meet the standards I’ve grown up believing I need to reach only to feel like a failure when I can’t reach them. The idea of even a part time job fills me with blinding panic because I know that I am physically incapable of doing all the tasks that would be required of me. Some days, even having a shower feels like climbing Mount Everest. I want to link to this Tumblr post because I think it explains the relationship between energy and the tasks you’re trying to do really well.
And it’s not just physical energy; it’s mental and emotional energy too. I get overwhelmed and burnt out really quickly, I think because I feel everything so intensely. A job that doesn’t account for that would have a devastating effect on my mental health and even though the world is starting to think about mental health and spread the message of putting you’re mental health first, I still feel incredibly anxious about this area of my life. I feel like having so little energy means I’m lazy. I feel like a burden for not having moved out, for not being able to be independent, for not having a job. Everyone I know has had jobs that they didn’t like and I feel like I’m entitled for wanting a job that I like and can do with the limitations I have. I feel like I shouldn’t want more than my neurotypical peers, like I should just get on with it and stop expecting special treatment. And yet, I know the limits of my mental health and of my body. These two sides keep clashing (which I’m sure doesn’t help my energy levels). It’s a horrible place to be stuck in and I can’t help but think that it’s connected to getting an Autism diagnosis so late: I grew up with the same external expectations as everyone else but a different internal capability. I know that now but it’s hard to hold onto that when the voices in my head are telling me that I’m just not trying hard enough. That one is a constant, in every area of my life.
I’ve often used being a Mac in a PC world as an analogy for Autism: most of the functions are there but they’re in different places or you have to find an alternate way of doing something. And I think it’s true here as well. When you run a programme that isn’t meant for the system you’re using, it doesn’t work as well. I think that’s a good analogy for being neuroatypical in a neurotypical world. I feel like I have not been designed for this system and so I don’t function as well as the people that have. Or maybe the system hasn’t been designed for me. It’s a chicken and egg situation. But you get my point. For whatever reason, I feel incompatible with my environment and that takes up a hell of a lot of energy.
I don’t really have any answers to this problem. I’m not even sure how to finish this post. This is something I struggle with daily and at the moment, I feel very worn down by it. I don’t want to spend my whole life planning in recovery time, replying to ‘how are you?’ with ‘tired’. I don’t want my life to be decided by my energy levels but I’m scared that it will be.