Posted on July 18, 2018
Not long ago, I read an article in the Guardian Magazine and I really wanted to share it with you guys. Hannah Jane Parkinson writes about her experience with mental illness, the conversation around mental health, and how we can make real change happen. She doesn’t pull any punches, which can make it hard to read, but that’s exactly why it needs to be out there because even though we are making progress around mental health, there’s still a long way to go. And that’s what this article is about. I really recommend reading the whole thing (you can find it here) because I just cannot do it justice without posting the entire article.
The whole article is important but here are some of the most important points:
“We should normalise the importance of good mental health and wellbeing, of course. Normalise how important it is to look after oneself – eat well, socialise, exercise – and how beneficial it can and should be to talk and ask for help. But don’t conflate poor mental health with mental illness, even if one can lead to the other. One can have a mental illness and good mental health, and vice versa.”
A very important point as it’s so easy to blur the two together.
“Like the rest of the population, I instinctively love the NHS, from the junior doctors to the consultants to the community psychiatric nurses. But, really, if you asked me right now? I hate the NHS. I hate the thin film of skin on its bones. It is incompetent and ailing. I used to blame the system. Mostly it is the system: those never-ending cuts and closures; the bureaucracy; the constant snafus of communication; the government’s contempt for staff.”
This is such an important issue to talk about. I feel exactly the same way. I love the NHS and I’m so grateful that it exists: it has literally saved the lives of several of my friends. I would fight to the death for it. But when it comes to mental health and mental illness, it’s incredibly lacking. I saw so many people who either couldn’t help me because of how the system works or wouldn’t help me because they didn’t understand, or even know of, what I was struggling with. And I know many people who’ve had the same experience. It’s a really upsetting, difficult situation and there’s no simple solution.
“The truth is: enough awareness has been raised. We – the public, the health professionals, the politicians – need to make our words and actions count for more. First, the Conversation needs to be more inclusive when it comes to rarer conditions, and to people whose voices are less loud. Second, we need to recognise that posting “stars can’t shine without darkness” on social media might piss someone off in the midst of desperation and that, actually, anxiety can be a normal reaction and is different from general anxiety disorder, a serious condition. That feeling down is not the same as depression.
Then, action. Donate to Mind; volunteer as a Samaritan. Vote for politicians who aren’t going to decimate our National Health Service or who support policies that lead to greater incidences of mental health problems (because it’s not just physical; society and environment plays its part).
What does the government need to do? Hire more staff, and then more. Enough staff to provide a service that meets individual needs. That means better working conditions and pay, and not piling all funding into a single type of therapy or care path. Clinical commissioning groups need to spend money earmarked for mental health on mental health. Prescription charges for long-term conditions should be reviewed. Funding and research must be increased.”
One of the things that, I think, sets this article apart from others I’ve read is that it includes concrete steps that we can all take. So often, articles talk a whole lot about how we need to create change but then they finish without actually telling us how to do it. I finished reading this article and felt empowered, like I could actually make a difference when, usually, the situation makes you (or, at least, it makes me) feel overwhelmed and hopeless.
These are some of the big points made in the article. But as I said, go and read the whole thing. It’s a really important piece of writing.
It’s taken me a really long time to write this out because the article talks about issues that make me really emotional and because there are so many quotes that I could pull out and talk about. While our experiences of mental illness are very different, there were so many things in this piece that I related to, this one maybe most of all:
“So I am a newspaper journalist – for now. But I don’t know how long for because the illness might grip itself around me so tightly that it cuts off everything I love and hold dear, and my ability to lead a normal life.”
Thank you, Hannah Jane Parkinson, for writing such an important, moving piece.
Category: mental health, response Tagged: hannah jane parkinson, mental health, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental health in the media, mental illness, mental illness awareness, national health service, nhs, response, the guardian, the guardian magazine
Posted on July 14, 2018
At the beginning of the year, I set myself a handful of goals for 2018 and as we’ve just hit July, I thought it might be wise to have another look at them to see how or whether I’m achieving them. There’s been a lot of hard stuff so far, which has pretty much dominated my life so I’m not super optimistic about my progress but let’s have a look…
WRITE MORE SONGS
Technically I have done some writing so I have achieved this but I feel like I’ve achieved it in the worst way possible. I’ve been struggling so much with my concentration, my motivation, and my general cognitive ability that writing has been gruelling at best. Throw in the recent period of struggling to actually put sentences together and you can imagine that I haven’t been getting very far. It’s hard to feel good about the songs I did manage to write too. So, all in all, it’s been a bit of a mess, but I’m cautiously (VERY cautiously) optimistic about this new medication. At the very least, coming off the Venlafaxine has allowed my brain to start functioning again. It’s overwhelming at times – it feels like a firework display in my head and I’m desperately trying to look at everything before it disappears – but it’s a thousand percent better than the alternative.
Yes! Yes, yes, yes! Invisible is out! My very first single is out in the world. It’s been very surreal and weird and I thought I’d feel less stressed once I had music out in the world, but nope. Even more stressed. Anyway, I did it. I (with the help of some very awesome people) jumped the first hurdle. That’s a big deal. Now, on to the next hurdle.
FIND THE RIGHT MEDICATION
Well, I found a lot of wrong ones. That’s all I’m sure of right now. Hopefully the new one will be the right one.
BECOME MORE INDEPENDENT
This is a tricky one because I’ve been mentally (and so physically as well) worse than I have been in a really long time. So it’s not really been the right time to try and be more independent; I’ve had a hard enough time being functional at all. But having said that, there have been a few things of note. I have been slightly more adventurous with food: I’ve been trying new things, which has always been a struggle for me, so that’s progress. I also discovered the Deliveroo app (I know, I’m way behind the times), which has helped me to be less dependent on other people. I’m not sure it’s exactly the same thing as being more independent but again, it’s progress. And finally, I found an app that makes sorting cabs easier. I have been so desperately low on energy recently that I’ve been relying on my Mum and her car so having that app has made things a bit easier.
WORK ON BEING HEALTHIER
Who knows with this one… When I was taking Phenelzine (and eating badly at university), I gained a lot of weight, all of which and more I’ve lost over the last nine months or so. That, I think, has mainly been due to the nausea I’ve been experiencing as a side effect from various medications, as well as my depression affecting my appetite and will to eat. I’m aware that that’s not the healthiest way to do it but it is what it is. I wanted to get back into a rhythm at the gym and do more swimming but I just haven’t been able to; I haven’t had the energy and I haven’t felt up to being surrounded by noise and people and life. Honestly, I have no idea how this one is going to for the rest of the year. I’ve spent the last six months or so in survival mode, trying to make myself eat the bare minimum, so motivating myself to be healthier hasn’t even felt possible.
READ MORE BOOKS (MORE THAN FIVE)
I feel quite good about this one. Although I’ve really struggled with my concentration and motivation over the last six months, I have rediscovered how much I love reading, which is so, so nice. I’ve read six books so far (what?!) and now that my brain feels a bit clearer, I’m really looking forward to reading more. I even have a list!
IMPROVE MY MUSICAL SKILLS
I have made zero progress on this one. I have just been too unwell to do anything about it. Plus, after the house move, I no longer have a piano, which obviously makes practicing the piano harder…
GO THROUGH MY POSSESSIONS
As I said when I set this one, I was in the process of moving house so I was going to be forced to do this and I was. I donated at least a third of my clothes to charity, quite possibly more, and threw out a fair amount that was practically worn out. I’ve bought my own desk (the one I had was borrowed), and replaced my bed: I HATED (and had hated for a long time) the one I had and the new one is much more practical with drawers underneath for storage. So I’ve definitely achieved this one and there’s more to go: there isn’t enough space for all my stuff in my new room. Throwing away things that I’m emotionally attached to (or have been in the past) is really hard for me so it’s been a big deal but I’ve done well so far and feel good about it going forward.
So, overall, I think I could’ve done worse and, of course, there are still six months left of the year. That’s plenty of time.
Category: book, depression, food, medication, mental health, music, treatment Tagged: actuallyautistic, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, books, depression, medication, mental health, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental illness, mental illness awareness, moving house, reading, singersongwriter, songwriter, songwriting
Posted on July 11, 2018
From the age of about two years old, I’ve been going to a little town in Norfolk almost every year on holiday. While I was in school, we – me, my parents, and our dog – would go during the October half term but in recent years, we’ve been going in the early summer, before the schools break up. We stay in a caravan less than a ten-minute walk from a stunning sandy beach and I absolutely love it.
Some people find it strange that we always go back to the same place but as far as I can tell, there are two basic types of holidays: going to explore and going to relax. Both have their pros and cons. This is definitely a relaxation holiday. It’s familiar and calm and beautiful. It’s a bubble away from reality where I can just be, in a way I can’t at home. And, of course, familiarity and Autism go together like fish and chips. We also ate a lot of fish and chips…
I’ve been back from Norfolk a few days and I just really wanted to write about it. After having had so much change with the house move, the changing of medications, and the decision to keep my cat’s kittens, it was really nice to be somewhere so familiar and safe. And as much as I love the cats, I really enjoyed having some dedicated dog time with Lucky. Because he’s now so arthritic, we have to be careful to not over walk him (his enthusiasm far exceeds his physical ability so he’s not much help there) but we manage a couple of trips to the beach, which he loved. He can’t really run anymore but there was a fair amount of skipping, one sure-fire way to know he’s enjoying himself. It’s very cute.
The beaches in Norfolk are just beautiful. The closest beach, the one we jokingly call ‘our beach,’ is particularly close to my heart. Every year, I step onto that beach and everything just clicks into place. It’s subtle but I suddenly feel like my head’s a little clearer, like I can breathe more easily. Something inside me settles. It’s like I leave a little piece of myself there, that I miss all year round, and then, when I get back, it’s an overwhelming relief. I’ve spent some glorious evenings on that beach.
It was ridiculously hot all week so I spent a lot of time inside with all the windows and doors open. I’m really not good with heat. It’s something I’ve heard from quite a few other people with Autism; I wouldn’t be surprised if there’s a link, given the hypersensitivity that often comes as part of being autistic. Anyway. It gave me the opportunity to do a lot of writing and catch up a bit with my diary (if you’ve read this post, you’ll know that my writing can be quite compulsive). That felt really good. I also rewatched some of my favourite films and played chess. The latter is something I haven’t had the concentration to do for months so that felt like a victory in itself, much more exciting than actually winning at chess.
Being there doesn’t eradicate my anxiety entirely but it does a pretty good job of dampening it. Sometimes anxiety feels like this constant vibration that I can’t stop, can’t take a break from. But in Norfolk I can. I still get anxious about specific things but that relentless vibration momentarily ceases. And that’s such a relief.
Posted on June 30, 2018
I have now been clinically depressed for thirteen months. I’ve been living with depression a lot longer than that but, in May of last year, everything spiralled and I was diagnosed with clinical depression for the second time. So I know my depression pretty well now and there are a few differences between those two states. One is the presence of hope: while living with depression, it’s a constant battle between my depression and the hope that things will change and get better. But sometimes that hope just disappears and the depression takes over. That’s when things start to get really bad. Another difference is the ability to cope; when my depression is particularly bad, I feel completely overwhelmed on a daily basis and devastated on a weekly one. I feel like one more impact and I’ll never recover.
I’ve been in what feels like the lowest place I’ve ever been for the past month. I wish I could describe it but I don’t know if I can; I don’t know if there are words that accurately capture that feeling. It’s like that feeling after you’ve had blood taken, after they’ve pulled the needle out, and your arm hurts in a way you’ve never really felt before but it’s everywhere. It’s like you’re drowning inside your own body. It’s like having a black hole in your chest that’s sucking everything in, leaving you aching and empty. It’s like all of those things and none of them at the same time.
But recently there’s been a slight shift. It’s so slight that saying ‘I feel better,’ feels like a gross over exaggeration and fills me with anxiety. But it is there and that’s really frightening to me. I’ve spent weeks feeling like I’m suffocating, like I can’t possibly survive feeling like this for another minute, but now that that’s not the case, I’m honestly terrified. As miserable as the depression is, ‘better’ is unknown. And scary. As much as I wanted to feel anything else, being depressed is somehow safe and… comforting is the wrong word, but hopefully you know what I mean. It’s clear. I know where the edges are, how it feels. In some ways, being depressed is easier because it’s familiar. I know it sounds weird but it’s like nothing can hurt me because everything hurts already. So, if I step out of that, it opens me up to really feeling hurt again and that is really, really scary.
But what if I’m not ready? Being depressed takes up so much space within me. What if I’m not ready to process everything that I’d have to if that space wasn’t being monopolised by the depression, if it was being filled with more life than I’ve had up until now? That’s overwhelming. I feel so raw and so fragile. What if I’m not strong enough? What if something happens and suddenly I’m crashing down even lower than before? I’m not sure I could survive that. I feel like a fractured windowpane that will shatter if it takes one more hit.
I feel like a little like I’m being dragged into ‘better’ regardless of how I actually feel. I do feel better physically: the brain fog has receded significantly, I don’t feel so numb, to the world and my own emotions, and so on. I’ve even had flashes of future plans, like going to the gym and learning how to bake something new; I haven’t had thoughts like that in a long time. But despite all of that, I don’t feel better mentally so it’s confusing and overwhelming and stressful. I know that that kind of change takes time, conscious processing, and most likely therapy, but that’s hard to remember when I’m feeling so overwhelmed by anxiety.
And part of that anxiety is this suffocating feeling that something bad is about to happen. This is something I’ve struggled with for years (it’s on my list to write about) and although I know it’s completely irrational, it doesn’t feel that way when I’m in it. It feels completely logical. A good thing happened and so a bad thing must happen to balance it out. I dared to want more than I already had and so the universe must punish me for it. When I write it out, I can see how ridiculous it is but it’s how I FEEL. It’s like the instinct that you’re in danger: it’s that strong. You can’t just ignore it. I want to write more about this in the future because it’s important and complicated and distressing.
This is all really overwhelming and scary. And it’s really confusing to suddenly feel like I don’t want to get into a better space after desperately wanting it for so long. It’s really weird when your physical emotions and your mental emotions don’t match, if that makes any sense. I don’t really feel like I understand it so I end up feeling like I don’t want to tell other people because they might assume that it’s as simple as feeling better and therefore expect more from me, more than I’m capable or feel capable of giving. This is a learning curve and I seem to be moving through it very quickly but also very slowly. It’s a mess. I’m a mess. Thank you for sticking with me through this very ramble-y description of it.
Category: anxiety, depression, emotions, medication, mental health Tagged: anti depressants, antidepressants, anxiety, depressed, depression, fear, finding hope, hope, hopeless, hopelessness, medication, mental health, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental health update, mental illness, mental illness awareness, recovery
Posted on June 27, 2018
A couple of months ago, I (with the help of my psychiatrist) decided that it was time to stop taking the Venlafaxine. I don’t feel like it’s helping; it just makes me numb to everything and, as overwhelming as my emotions tend to be, feeling is better than not feeling. It might not always feel like it but that’s the truth. Plus, the side effects are not worth it, even if it was helping: my concentration and motivation were pretty bad before I started taking it but I’m pretty sure it’s gotten worse, especially recently. Writing has been such a struggle, even the practice of it. My depression has always had a negative impact on my creativity but this is the first time I’ve found it so incredibly difficult to simply write at all: getting words out has been like pulling teeth.
So I had some good reasons for wanting to stop and I’d put in the time to make sure I had an informed perspective. So I discussed it with my psychiatrist and we decided that the right move was to wean myself off the Venlafaxine and try something new.
When I first reduced the dosage, I didn’t really feel the difference. I still felt both depressed and numb, which is a really weird combination. But over time that’s changed. Obviously I can’t know how much of that to attribute to the medication change or to life in general but I still think it’s worth keeping track and I recommend this practice to everyone: it allows you to see the trends in your life and analyse what does or doesn’t work for you.
Not long after lowering the dose, I started getting headaches. The pain was very similar to the pain of a migraine but I didn’t have any of the other symptoms that come with it. Normal painkillers didn’t seem to help much and there were several occasions where I just retreated to my bed and tried to sleep through it. I had one of those headaches almost everyday for about two weeks, which was horrible but they have now passed at least. So that’s progress.
Coming out of that, I felt really raw and emotional, which was very weird, having felt so blank for months. I felt like I had no control over my emotions, which was more than a little bit scary, and kept bursting into tears over the smallest things. It’s felt a bit like I’ve had all of my emotions bottled up since I started taking Venlafaxine and suddenly they were overflowing everywhere: if something upset me, I became inconsolable and if someone irritated me, I had the urge to scream at them. I feel very lucky and grateful that I’ve managed not to scream at anyone because that isn’t how I actually feel. Once that emotion has died down a bit and I’ve been able to process the whole experience, that’s how I really feel. I live in fear of saying something I don’t mean and it ruining everything. So far, I’ve managed to manage these emotional tidal waves. They’re still happening though, even now that I’ve stopped taking the Venlafaxine completely.
And more recently I’ve started to have moments where I can think more clearly. They don’t last very long and to begin with, they were so sporadic that I didn’t even connect them to coming off the medication. But now that there have been a handful of them, it seems pretty likely that the two are linked. These moments are amazing. The feeling reminds me a bit of coming up for air after being underwater for a long time. You breathe in and you can almost feel the freshly oxygenated blood rushing around your body; everything suddenly feels so easy and you’re shocked by how hard it was up until that moment. These moments aren’t lasting very long and I wish there were more of them but it’s something.
I realise that I’m not giving this progress the recognition it probably deserves but I’m really not in a place where I can be enthusiastic and optimistic; the most I can manage right now is one foot in front of the other. My depression is worse than ever but at least it’s real. And I’m doing the best I can. That has to be enough.
Category: depression, emotions, medication, treatment Tagged: brain fog, cognition, depression, medication, medication review, medication withdrawal, mental health, mental health awareness, mental health blog, mental health blogging, mental illness, mental illness awareness, venlafaxine, withdrawal
Posted on June 9, 2018
In this video, Samantha Pena talks about her experience of OCD, what it’s like to live with it, and what she’s gained. Her experience is pretty different to mine but there are definitely parts of this that I strongly relate to, especially the intensity.
Here are some quotes from the video:
Posted on June 3, 2018
Most of the time, I’m very good at taking my pills. I’ve had a few moments where a change in routine or a dramatic event has thrown off my rhythm but usually, I’m very diligent about taking my medication. We have a good relationship, even when I’m struggling with side effects: I know that I’m taking them to improve my quality of life and that knowledge helps me to push through whatever worries or difficulties that I have.
Having said all of that, I accidentally went into withdrawal a few weeks ago. A series of exceptionally busy days left me so tired that I just kept forgetting to take my meds before going to bed. As a one off, it’s not great but it’s not a huge deal. It happens and you resolve to be more careful. But with everything going on, suddenly four days had passed and I was in withdrawal.
I’d had a headache the day before, one that felt like my brain was too big for my skull and made me feel nauseous if I moved my eyes too fast. It was very unpleasant but I hadn’t thought much of it since it followed a very long, very busy day; a terrible headache after something like that isn’t uncommon for me. It’s like a hangover, but from socialising rather than alcohol. So I hadn’t been too worried but when I woke up the next morning (the fourth day without my medication), I couldn’t think properly. It’s hard to explain but it was like I couldn’t hold on to a single thought: one would appear and before I could follow it through, another ten would’ve flashed passed, leaving me confused and nauseous. I’ve never felt like we have full control over our thoughts – sometimes ideas appear out of nowhere and sometimes you can’t stop thinking about something regardless of how hard you try – but I do believe we have some control; you can choose which pathways to follow and which to leave unexplored, even if you can’t forget about it, for example. So to have absolutely no control over my mind was terrifying. I tried to keep calm and slowly collect my thoughts but I just couldn’t do it and ended up sobbing in my bed, curled up in the foetal position. It was really, really unpleasant.
My Mum called my psychiatrist and his advice was to take a normal dose straight away and then restart my normal routine that night so that’s what I did and within a couple of hours, I felt more normal. I could think again; the thought progressions had returned to their normal speed and made more sense, rather than being so chaotic and out of my control. So that was a huge improvement but I was completely exhausted by the experience. I spent the rest of the day on the sofa.
It was almost a week before I felt like myself again. I had trouble concentrating and had a tendency to zone out mid conversation; it kind of felt like I didn’t have enough brainpower to sustain one. Everything felt much more tiring.
So that’s my little cautionary tale. It’s so important to take your meds responsibly because not doing so can have pretty serious consequences. I was lucky: it was miserable but easily and quickly rectified. It could’ve been much worse. So, if you’re reading this and need to take your medication, please drop everything and take it now! This isn’t supposed to be advice for how to handle withdrawal (if you need that advice, please ask your medical professional!), more a description of the experience in the hope that it might be helpful to someone. Taking medication can be such a complicated, confusing ordeal and not talking about it only makes the process harder.
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.