Nine Years On – Nine Years of Setbacks and Hope

I can’t quite believe it’s been 9 years. I think that every year. The eight-year anniversary of becoming anxious feels like a lifetime ago despite the fact that I’m not sure it’s been a very eventful year for me. As ever, I’ve been meaning to blog or vlog for months but the words just haven’t come out. I don’t have the confidence to explain why, or the ins and outs now, I don’t know if or when I ever will but I was put off from this outlet by the very person who was meant to be helping me and it’s been very difficult and very painful trying to get beyond that, get beyond the feelings that brought up (I don’t even feel able to name those feelings here) and start rebuilding the confidence and trust in myself to go back to sharing my story. I’m scared of repercussions, of being misunderstood or misconstrued again, of being told off or accused of things I haven’t done. Ever since I began my blog, I set myself strict rules of how I’d conduct myself and how I’d tell my story, making sure that I never made anyone identifiable without their explicit permission. There are huge chunks of my history that I can’t talk about by following these rules because the people involved would be easily recognisable or identified and I don’t feel that’s fair on them and so I keep quiet. But for someone who feels most comfortable being as open and honest as possible, these reams of red tape that I insist on upholding often cause me to become tangled and tied up in knots and it becomes easier to say nothing at all. I have often worried that I would accidentally say the wrong thing, share too much, or make someone angry, but thankfully that has never happened until last year when my words were misconstrued and warped beyond recognition by someone I thought knew me better and it’s burned me so badly that even writing this I’m second, third, and fourth guessing every sentence I write and I feel sick the more I think about publishing it. I’ve had advice from my new therapist that I did nothing wrong, that this is clearly a helpful outlet for me and something I should aim to return to and despite getting that advice over six weeks ago, it’s taken me until now to heed it and even then it’s only because I didn’t want to miss writing this anniversary post. I hadn’t intended to start on such a serious and painful note but I didn’t know how to explain my silence and my lack of full explanation and it’s eating me up too much to say nothing at all. I hope that one day I’ll be able to have more confidence again and share what happened to me because it was wrong and it was really painful and only in sharing these things do we shine a light on them and help others recognise it happening to them too.

Last year, for a whole host of reasons, many of which I’m still not aware of, I got much worse and found even the most basic things became anxiety-inducing. I started therapy far too late and quickly became destabilised when memory after memory came flooding back to me with no coping skills to deal with them. I’ve never been so overwhelmed by so many different things. I had a really frustrating 9 months of getting worse and my physical health deteriorating for good measure and I felt completely broken and started to rapidly lose hope, something that actually very rarely happens to me. I felt panicked nearly all the time. I couldn’t catch my breath, or concentrate, or think in a straight line. I was completely defeated. To top it all off, I got covid in November just 10 days after a sinus infection that had caused me to feel acutely suicidal and then my laptop broke meaning I couldn’t have therapy and was even more shut off from the outside world. It was a really dark time. Thankfully, this break from therapy made me realise my therapist was not a good fit, I should’ve realised it much sooner and have been beating myself up about it ever since, but she put me in touch with someone who recommended a new therapist and I can’t even believe the difference. Don’t get excited, I’m not cured, or better, or anything, sadly I’ve not been matched with a miracle worker, but the difference in the process, in the way I’m understood, has been huge. I’ve got such a long way to go to reach some semblance of normality or “functioning” but right now I’ve got a bit of my hope back, I can see that a light at the end of the tunnel may exist and last year that didn’t seem possible. I can’t express how far away it feels like that light is, further away than it’s ever felt but the fact that I think it might be there is such a huge step forwards from the place I was in last year.

The thing I’m proudest of over the last year, other than keeping going when I really, really didn’t want to, is the lived experience work I started doing for a couple of national charities. I don’t know what I’m allowed to share and what I’m not so I won’t go into detail but I’ve been involved in various one-off focus groups, as well as two longer group projects, using lived experience of self-harm and suicide to help shape guidelines, online materials, and create content. It’s something I’m hugely passionate about and it’s so nice to be able to make a bigger difference than I can here in my little corner of the internet. It’s also been so good for my confidence! In the past I’ve often found groupwork very challenging and it’s something I’ve always chosen to avoid but this has really shown me what I’m capable of, it’s given me a voice and shown me that I can work with others and enjoy it, and every time I finish a group meeting, I’m absolutely buzzing! I’ve just been accepted onto another group project running for the next 6 months and a 3-year project where I’ll be using my lived experience, this time in a research capacity and I’m so excited to get started, albeit completely terrified too!

As ever, there are lots of challenges that crop up, none of which I seem to get through easily. We’ve had various issues with our flat caused by the previous owner being a huge bodger of jobs and we’ve had huge stress and expense trying to rectify these. The shower that had almost certainly being leaking since it was installed, turned out to have rotted our floorboards and leaked through our concrete floor to the downstairs neighbour. We’ve been cleaning and replacing parts of window frames and handles that were rusted so badly they wouldn’t move because he’d stuck, taped, and glued, fly netting over the open windows and left them open for, we assume, years in all weathers. We’d been gearing ourselves up for the last 3 years to get them fixed and spent 7 hours cleaning gunk off the frames and thanks to a catalogue of errors with the window company, ended up having 4 appointments booked and 3 visits from them to finally, just 2 days ago, get them fixed! Even that wasn’t without its issues as a chunk was knocked out of the bedroom wall and we’ve got burn marks on two floors. I don’t know how we’re this unlucky but I’m pretty sure I’m cursed! Our shower was meant to take 2 days after we discovered it was collapsing and it actually took 5 over the space of 8 days because problem after problem was uncovered. I was genuinely on the verge of a breakdown and I still hold my breath every time I walk near it or it makes any kind of noise. It was fixed 3 months ago.

All in all, I’m not in a good place but it’s definitely a better place to be than this time last year. My physical health is a little better, my head is a little clearer and my hope is tentatively returning and I’m glad that I’ve got little, manageable things ahead to look forward to and feel useful doing. Blogging has always been such a help to me, to make sense of things in my life, to get stuff out of my head and to try and make a difference and help others, and I hope that maybe writing this post and sharing it will help me to rebuild some of the confidence I lost in myself and help me to reclaim this little space of mine. Deep down, I know I did nothing wrong, it’s just taking a very long time to feel that and be able to move on and trust myself.

Nine years on, nine years of setbacks and hope.

If you want to go back and read all of my previous anniversary posts, they can be found below:

One Year On – One Year of Fear

Two Years On – Two Years of Trying

3 Years On, 3 Years of Managing

Four Years On, Four Years of Frustration

Five Years On – Five Years Of…..

6 Years’ Agoraphobic – Coping with Social Distancing, Self-Isolation and Being Housebound: Advice for COVID-19, Anxiety and Beyond

Seven Years On – Seven Years of Changing and Staying the Same

Eight Years On – Eight Years of Anniversaries

Eight Years On – Eight Years Of Anniversaries

It’s that time of year again and as has become my custom, I reread last year’s post to see if it would spark inspiration. It’s always interesting reading where I’ve been and where I’ve come from because I tend to live quite in the moment, from one event to the next and I quite quickly forget what came before. It didn’t overly help me with what direction to take this year or what topic to choose to write about. But one thing that did pop into my head at the very end of reading was just how long this experience has been and how significant this specific anniversary is. I realised that later this year I’ll have been mentally ill for half of my life and have spent a quarter of my life living with severe anxiety disorders. A quarter! I had just turned 23 when my world came crashing down around me and now I’m 31. Every time I say my age, and I say it a lot in order to remind myself of it, I’m shocked by how much I don’t feel that age. I know everybody says that as they get older and I’m sure it’s true to different degrees for all of us but honestly, I still feel stuck at 23 in an ageing body with lines becoming more prominent on my face but my soul never seems to catch up. I’m surprised by how I look in the mirror and often expect people to take responsibility off me or question my ability because I don’t feel old enough to be doing adult things. I’m always shocked when girls I went to school with get married or pregnant because I can’t possibly be old enough to be doing those things and then I remember that actually, I’ve been old enough for 13+ years!

The last year has been a particularly difficult one. The year before had been very dramatic with the pandemic kicking off, global lockdowns and my mother-in-law being diagnosed with and dying of cancer and then my Grandad dying 3 months later on her birthday. This year has been much less dramatic in terms of events though it’s certainly not been a walk in the park in that respect either but my mental health has nosedived a few times and I’m very unwell at the moment. In previous years although I’ve not shouted about it on my blog, I’ve been able to be more in control of my anxiety and stopped it from seeping into all aspects of my life, I was able to go out sometimes and got into visiting my Dad very regularly but most of that has been stripped away. I still push myself to do these things and I’m gradually pulling out the other side of a huge dip that started before Christmas but it’s been a really scary time and since drafting this last week I’ve taken another huge nosedive. In July last year my functioning dropped off a cliff, I couldn’t do anything for myself apart from shower and get dressed and even that wasn’t as regular as it should’ve been. I didn’t eat properly when Joe wasn’t home to cook and if I ate anything it was just junk food because I didn’t have the executive functioning to cook or even prepare fruit. I couldn’t even pick things to watch on TV I’d just turn on a channel and watch whatever was on for hours and scroll aimlessly on social media on my phone. I was absolutely terrified and it’s the closest I’ve got throughout all of these years of anxiety disorders to thinking that I was going to end up hospitalised. It feels really silly looking back on it because I knew at the time that a hospital couldn’t help me, my conditions are medication-resistant so there wouldn’t have been anything they could do but I was barely functioning and no longer wanting to keep myself safe and thoughts of suicide were constant because I just didn’t want to feel that way anymore. I was on the verge of a panic attack all day, every day for 3 days straight and this was the peak after weeks of my anxiety consistently increasing to unbearable levels. I was barely sleeping and waking up crying, drenched in sweat having panic attacks the few times I did sleep. I felt completely broken. I eventually told my mum and a friend about it and this seemed to just take the edge off enough that I was able to gradually pull myself out of the hole. For months afterwards I was on the edge of the hole looking in and trying to put as much distance as I could between me and it but never able to work out why I’d ended up in it in the first place.

A difficult few months followed including a family crisis that my support was required through. Amazingly, I managed to hold it together and keep going and actually continued to improve so I thought that awful period of anxiety was behind me, just a random blip. But by December I was back on the edge of the hole, staring into the abyss with no idea how to not fall in and after having awful anxiety for hours on Christmas Day and not calming down until 3pm it all came crashing down at home that night when I suddenly realised just how much I’m at the mercy and not in control of these conditions. I’d been meant to go with Joe on Boxing Day to see his family and I just couldn’t. I was awake for hours having had a panic attack at gone midnight and ending up sobbing on Joe and I felt completely panicked and out of control again. That feeling didn’t shift for a moment until 2 days later. For most of January I was firmly in the hole, having better and worse days but feeling on the verge of a panic attack multiple times a day on the better days and constantly on the worse days. It was horrific. It really scared both of us because we like to think that I’m at least partially in control of how bad this gets and that as long as I work hard, it won’t get worse than it’s been in the past but this was a really rude awakening for us that that’s simply not the case. By the end of January, I’d taken some tentative steps to remove myself from the hole and until this week I had been spending about half of the week, sometimes a little more, out of it and sat on the very edge staring in with the other few days sadly back in the grips of my anxiety hammering me at full force. I’m doing everything I can to spend as many days out of the hole as possible and to avoid doing anything that puts me back in but it’s certainly not easy. Each time I’m back in there it feels like it chips away another bit of hope because it feels like that path is better worn and easier to slip down. Having been back in the hole for the last 2 days and spending a great deal of time sobbing, having panic attacks and feeling totally overwhelmed, I’m back to fearing everything and wondering how I’ll ever not feel like this again, that’s how quickly it takes over. Thanks to how my brain works, the memory of how I was this time last year or any other times during the eight years I’ve been anxious for is hazy at best and I can no longer remember what it felt like or what I could and couldn’t do and why. I don’t know how I got here, or why, and I certainly don’t know how to get out but I’m trying hard to find a way and I have good people around me who are trying to help too.

This certainly isn’t how I envisaged I’d be feeling eight years in. I was meant to be off work for 2 weeks and then grabbing my career with both hands and riding off into the sunset. Even last year I thought I’d at least be doing better than then after such a challenging year that that had been. There are all sorts of things that have been going on behind the scenes that I’m not yet ready to share with you all and that’s been hard too. As someone who prides themselves on being an open book, mostly because I struggle such a lot with secrets or anything that isn’t 100% honesty, it’s very hard having all of these events and parts of me that I can’t currently share. Sometimes it makes me want to scream because it’s all fizzing away inside of me wanting to be let out but that doesn’t feel safe at the moment and I’m not mentally strong enough currently to deal with anything other than people being supportive and kind and accepting and so I have to keep all of that to myself. I’m writing and videoing content sporadically as I go that I intend to publish in the future when I am ready to share these things in the hopes that my journey can help others and also, because my memory at the moment is shocking and I’ll forget all of this and how it felt otherwise. I’ve never been very good at describing the past stuff, I’m much more a here and now documenter. I hope this will all make more sense one day and that people will understand why I couldn’t share now and be accepting of me then, that’s one of the things I’ve longed for most in life, to be accepted.

Eight years on, a quarter of my life spent anxious and nearly half of my life living with mental illness, I had hoped that I was tentatively coming out the other side of one of the worst periods of illness that I’ve had, I’ve got even less to show for my efforts than I had last year in terms of things I’ve accomplished or achieved but I’m still here, I’m still fighting, I’m still just about clinging onto hope and I’m doing everything in my power to get better and to recover some functioning and semblance of a life again. It’s proving infinitely harder than I thought but I hope that it’ll be worth it, one day.

If you want to go back and read all of my previous anniversary posts, they can be found below:

One Year On – One Year of Fear

Two Years On – Two Years of Trying

3 Years On, 3 Years of Managing

Four Years On, Four Years of Frustration

Five Years On – Five Years Of…..

6 Years’ Agoraphobic – Coping with Social Distancing, Self-Isolation and Being Housebound: Advice for COVID-19, Anxiety and Beyond

Seven Years On – Seven Years of Changing and Staying the Same

Why Mentally Ill Children Become Mentally Ill Adults – Children’s Mental Health Week 2022

TW: Non-graphic mentions of Self-Harm and Suicidal Ideation.

It’s Children’s Mental Health Week and I wanted to share a few things because historically, mentally ill children have often become mentally ill adults. I’m one of them. While a mental illness doesn’t have to be a life sentence, if it’s not treated quickly and effectively, it can fast become one. I’ve long been documenting my present and past issues with mental illness and as each year passes I’m shocked by how many years I’ve given up to these illnesses. It’s certainly not been willingly. Thanks to originally being fobbed off by doctors as just another down teenager, who rapidly spiralled into full-blown depression and was then put onto unsuitable medication and given no therapy until I was able to go private 18 months in, I’m left angry and disappointed that I was left to fall so far into the hole of depression. I try not to spend time now wondering what life would have been like for me if that first GP had taken me seriously and immediately given me someone to talk to. Maybe I’d have still spiralled, maybe where I’ve ended up is exactly where I was always meant to, but I have to say, I doubt that!

I was 15 when I became mentally ill. A series of traumatic events led to me feeling unable to cope pretty much overnight. I sought help really quickly but I didn’t get it. Leaving me to deteriorate, for depression to take hold of my developing brain, with no concept or understanding of what was happening to me, leaving me to develop deeply unhealthy and damaging coping strategies that have left life-long marks on my skin, not to mention the scars inside my mind, has altered the course of my life. Where I veered off course into the path of illness, I’m sure I just needed a gentle nudge from the right therapist to get me back on track, to validate my struggles and confirm that life was difficult at the time and to teach me positive, healthy coping strategies to set me back on the right path. Instead, I’ve spent very nearly half of my life mentally ill, constantly sharing my headspace with the most hideous thoughts and feelings. It feels like a waste. It feels so unfair. I look at pictures of me as a child and I feel so sad for that little girl and what her future holds. While there are exciting and wonderful things in my life and those are the things I cling onto, there are so many tinges of sadness and difficulty and everything feels marred by my mental illness.

My anxiety kicked in out of the blue when I was 23. It hit me like a ton of bricks. It cycles up and down, lessening and worsening and morphing over time but never going away. Recently my anxiety has ramped up to a crippling level that has often left me in a crying heap and wondering how to continue because it feels so utterly unbearable. I’m 31 and I still don’t have any coping strategies that reliably work, although I’m proud to say that I have removed the unhealthy coping strategies and work everyday to keep those out of my life. Dealing with such extreme anxiety feels like torture and there are so many days recently where it’s felt like it’ll actually kill me. I get awful physical symptoms which I then become fearful of and the cycle continues and spirals. There are days where anxiety occupies my entire mind, no other thoughts come or go, just fear and panic crashing over in wave after wave. It’s completely exhausting. I often think when I’m writing these posts that those of you reading who are lucky enough to not have suffered mental illness must think these are exaggerated accounts that should be taken with a pinch of salt. I can assure you that not only is that not true, these descriptions only really scratch the surface of the things your brain can make you think and feel when it’s gripped by mental illness. It’s all-consuming and terrifying and what makes it even worse is the fact that this assault is being orchestrated by your own brain and yet you’re completely powerless to stop it. It grips you like a vice, pinning you to the spot and squeezing the life out of you and yet no one around you can see it, they can’t see why you’re struggling for air, or understand why tears are pricking in your eyes, or you’ve come over in a cold sweat. Nothing outwardly in your surroundings has changed and yet for you the fear has enveloped you and it’s all you can perceive. And for days now, weeks in fact, that’s been my near-daily experience.

When I’m feeling so unwell now, it’s hard not to look back, to look at where this began, to think back to when I knew there was a problem and plucked up the courage to ask for help, only to be fobbed off, dismissed and belittled. It breaks my heart to think of the 16-year-old sat shaking in her doctor’s surgery wondering if she’d gone mad and being so scared of what was happening in her head that she risked being forced into hospital which was what she was sure was going to happen. She had unscarred skin, she ate healthily and had good self-esteem, she just felt sad all the time and didn’t know how to cope anymore. I wish someone had realised something was wrong and rather than pretending everything was fine, listened to her, held her hand and helped lead her back to the light. I shouldn’t have needed to self-harm, I shouldn’t have needed to develop an eating disorder and I shouldn’t have needed to plan how and when I might end my life because it should never have got so unbearable that I even considered those things. For all of these reasons and so many more we desperately need to fund children’s mental health services, increase awareness of what to look out for and have quick and efficient assessment and treatment services to rescue those who veer off the path, so that mentally ill children no longer have to become mentally ill adults. I wasn’t destined to be like this, but my fate was sealed when mental health services tried to prove me wrong and talk me out of being mentally ill when I knew I had every reason to feel the ways I was feeling and had no skills to deal with it. Until we overhaul these systems, we’ll continue to have hundreds if not thousands more follow the well-trodden path from mentally ill child to mentally ill adult and what a complete and utter travesty and waste that would be. During this Children’s Mental Health Week I’d ask those of you who have children or who work with them to read about mental illness in children, to look up the signs and symptoms that something is wrong and to find out what to do in those circumstances, so that you’re prepared! Mental illness was much less known about when I became ill and it was barely mentioned in relation to children so no one around me had any idea what to do but things could’ve been so different if they’d known how to help. You can be that change and you could help stop a mentally ill child from becoming a mentally ill adult.

I wrote this post for parents – 10 Ways to Help Your Mentally Ill Child; and this post about my experiences of being excluded from school – Excluded For Being Mentally Ill.

Mental Health Awareness Week – Awareness is No Longer Enough

It’s Mental Health Awareness Week again and this year the tone appears to be changing. Not the tone of the government or most of the charities, but from campaigners and sufferers of mental illness there’s a distinct change occurring, a tiredness, a frustration and a building anger. This year’s theme is Nature which seems innocuous enough but honestly, who is it helping? For years, we’ve known that nature and being in green spaces helps improve mood etc etc. And yet, we are increasingly building on green spaces, packing people in like sardines so they’ve got no views, no parks, no wildlife around them and then during awareness weeks we tell them to go and seek out the nature that’s been so cruelly stripped away from their neighbourhood. How? Where? With what funds?

One of the biggest problems I have with this week is that it’s not designated to a proper cause. It’s called Mental Health Awareness Week but mostly it’s Mental Illness Awareness Week. Really, there need to be two. But much more than that, people need educating on the difference. We all have mental health, like we all have physical health, we all need to take care of our mental health just like we need to look after our bodies but mental illness is illness like any other. It’s when something’s gone wrong, off kilter, and we need access to diagnosis, treatment and support in order to regain wellness again. Nature is not a substitute for support, nor is it a treatment for mental illness. It’s a good tool to help keep mentally healthy and performing at your best but if you’re mentally ill, a walk or a roll around in some grass isn’t going to cut it where medication or therapy are needed.

Nature isn’t accessible to everyone. For so many reasons and in so many ways. Not just because it can be difficult to find when you live in particularly urban areas but also for those with limited time or resources and most notably for me, because I’m agoraphobic. My condition means that I don’t cope well with being outside so nature is pretty inaccessible to me. Lack of access to nature isn’t what’s keeping me ill, it’s not the cure for my conditions and yet all I’m really seeing on social media and the news this week is about how nature can help alleviate symptoms and while this is true in mild cases, it’s really not effective for those of us with severe symptoms. Most days I’m not well enough to even go out of my front door, let alone go into nature for a walk or a picnic. I live in a flat so I don’t have a garden I can go to. I’m very lucky to have a lovely view and can see a local park and the South Downs in the distance, I see squirrels and seagulls and foxes and people walking their dogs but it’s all through panes of glass. I’ve tried to follow tips and bring the outside inside and have an orchid and I’m growing some tomato and chilli plants. Surprisingly enough, despite all of this, my anxiety isn’t better and my agoraphobia still isn’t cured.

What I need is therapy. I don’t need awareness so much as I need access to support. I need to stop being threatened with discharge from my mental health team. I need support and treatment to exist in accessible ways that don’t require me to leave my home, the thing I need therapy in order to do! I need options that aren’t just CBT which I’ve exhausted over the years and which doesn’t work for people like me. I need waiting lists to be shorter. I need to not be waiting 3 years or more for an assessment that may still not lead to any new treatment options. I need doctors, MPs, and society as a whole to fight for funding so that instead of churning out the same “It’s OK Not To Be OK” and “Be Kind”, and “Reach Out For Help If You’re Struggling” slogans year on year, change actually occurs and people like me can finally access treatment and support without having to wait until these conditions possibly kill us. Fighting my own mental illness is hideously hard but fighting society at large as well is impossible. I’ve been blogging for 6.5 years and nothing has changed. Services in my area have been cut, doctors are retiring or leaving, appointments get shorter and spaced further apart and the threat of discharge gets bandied about more regularly. I’m still just as ill as when I first went to the doctors. I’ve still not received any therapy on the NHS. I can’t be medicated because all of the medications made me worse. I’ve just been left. The support I’m offered is an up to 30 minute call once every 6 months with my psychiatrist. He doesn’t know my Grandad who I was a carer for for 4 years has died, he doesn’t know that I’ve had physical health problems that have majorly affected my sleep for almost 3 months, he doesn’t know I’ve suffered from intermittent suicidal ideation, or that the waiting list for the assessment he’s sent me for has been extended by another year. Why? Because my next appointment isn’t until June and I last spoke to him before Christmas.

Nature’s great but it’s not a substitute for treatment. Awareness Weeks have had their day. What we really and truly need is Action Weeks. And then actual action. I no longer care about whether people accept that I have an anxiety disorder or realise that it’s not my fault or that I shouldn’t be ashamed of it. I know that awareness has its place for all of the people who are coming up behind me who are starting to suffer symptoms that they don’t understand or who are having experiences they’ve never had before. I know we need to make people aware but the whole point of awareness always used to be so that you sought help early enough because it’s been well-documented for a long time that the earlier you intervene in mental illness, the better the outcome and the less intervention is usually needed. But support is so sparse now that awareness is almost useless. It’s all well and good suspecting you have a mental illness and going to speak to your GP about it but then what? Almost all of the doors that used to open are firmly nailed shut thanks to funding cuts. We keep hearing about a pandemic of mental illness, but there’s no vaccine coming for this and social distancing will surely worsen the effects. Knowing what’s wrong with you is the first step but without a second you’re still stranded. Alone. Frightened. Unable to get better. And sorry to be a cynic, but walks or visiting gardens is going to be of little use to people suffering from psychosis or eating disorders or just about any mental illness that’s actually at a diagnosable level of severity.

I’ve been in two minds about whether to even post about this because I really don’t like posting negative or angry things, especially about public events or things that are aiming to help but this is falling so short. It’s like the Clap for Carers. It’s all well and good clapping but it’s not paying people’s bills, it’s not actually making a meaningful difference and it changes nothing in the grand scheme of things. Awareness weeks have had their day and could still be useful now if they were followed up with action but all the time we’re focusing on airy-fairy topics like nature and deeming that to improve everyone’s mental illnesses, we’re falling dangerously short and without radical change this pandemic is going to last a lot longer than the Covid-19 one will. We don’t need Awareness Weeks. We need action!

Why it’s Not OK Not to be OK – World Mental Health Day 2020

It’s World Mental Health Day and again, I’m not sure what to say or where to start. Often I let it pass without words because nothing I can think of to say feels like enough to warrant even starting. But I don’t want to be silent on a topic that’s so important to me, on a day when the world talks loudly and tells us what we all should and shouldn’t be doing regarding mental health and mental illness.

The problem is that most people like me who are mentally ill and who’ve been trying to fight stigma for more years than we care to remember are tired. Really tired. We’re tired of the narrative surrounding this day and mental illness generally. We’re constantly told to be kind and it’s ok not to be ok but quite honestly, the latter makes me want to vomit. Because honestly? It’s not ok not to be ok. I deserve more than that. I get that the phrase is saying that we shouldn’t feel ashamed, we shouldn’t be stigmatised, we should feel like it’s alright to talk about our bad days but despite the progress that’s been made, there is still such a long way to go. And quite frankly, I don’t want it to just be accepted that I don’t feel ok. I want people to be angry that I’m left to feel this way, to suffer, often needlessly. I want people to fight for funding, for treatment, for services to be opened and started up rather than defunded and closed. I want people to be outraged that our waiting lists for help are months, if not years long. If that was any other patients there’d be protests or riots, if it was others being told to just wait on the medication or therapy that would keep them alive, people would be up in arms but because mental illness is still stigmatised and dismissed, it’s viewed as lesser, less important, less life-threatening, less dangerous and far more self-inflicted and able to be controlled by the sufferer than physical conditions. It’s not until people spend extended periods of time with someone who’s very unwell and able to articulate their experience that people start to understand what it’s actually like and what we actually go through.

World Mental Health Day just seems to have turned into companies, governments and people in society loudly shouting that people like me should talk, we should reach out, we should get help and in some ways that’s true but if you actually look at the reality of those suggestions, you’ll realise why we’re so tired and feel so helpless. We can’t get help when we ask for it. We’re turned away because we’re not ill enough or too ill, because we have complex diagnoses or damaging symptoms that services aren’t equipped to deal with. So few people can meet those super specific criteria and more and more of us are falling through the cracks. I’m currently on a waiting list that could take 2 years to reach the top of just to get assessed for a diagnosis that is unlikely to get me any treatment. I’ve agreed to be assessed because it’s literally the only thing I’m now being offered and it could help explain why previous treatment options have worked so poorly for me. But then what? I’ve not really been told what will happen if I get diagnosed, or if it’s discovered I don’t have this condition. What’s very likely to happen in the meantime is that the Adult Mental Health Team will discharge me because they’re not “treating” me currently and they can’t offer anything else that’s suitable for me. I’m much too ill to engage in any of the “treatments” they offer and so I’m likely to get discharged. In what universe is that acceptable? In what other branch of medicine would someone so commonly and easily be deemed too ill to be treated and discharged to deal with it alone, with no support and not even someone to talk to about it?

We have come a long way, even just in my lifetime and in so many ways that’s fantastic but when I look at the issues we still face, the stigma we still encounter and the appalling lack of access to suitable treatment and support, it’s clear that we have far further to go than the government and wider society would like you to believe. There are so many “inspirational” stories, posts and quotes going around, as there are every year but they simplify the mental illness experience to a ridiculous degree. I’m a walking contradiction and I reckon most people with mental illnesses are. I’m incapable but I’m also capable, I need help but I’m independent, I can’t look after myself but I can look after others, I’m incredibly anxious but I’m a brilliant problem-solver, there are so many things that I can’t do but there are so many things that I can and I don’t need to be written off just because I’m ill. I do, however, need help and treatment and “talking about it” isn’t going to cut it, I need actual support and therapy but these aren’t being offered. I’ve seen lots of posts today about these issues from mentally ill people so I definitely think the message is getting out but I’ve also seen so many posts suggesting that we just need to reach out and talk to someone and actually, when you’re very ill, that’s nigh on impossible to do, especially when professional help isn’t available. Rather than the onus being on us, if you’re able to then please check in with anyone you’re worried about, anyone you know is ill or struggling or who you’ve not heard from in a while because they might not feel able or even worthy enough to reach out and you’ll never know the good you could be doing by reaching in. Being mentally ill is a very lonely experience and it can become all the more isolating by people who don’t understand the suffering telling us to “just” reach out, talk about it or seek help when those things are often impossible to do. Be our ally, be our friend and help fight our corner because without funding and an increase in services we’re heading for a pandemic of mental illness and you could be one of the ones realising that not being ok is far from ok.

Update – September 2020

It’s been an absolute age since I last wrote a proper update. As time passes, I feel like I have less and less to say and yet, so often, I’m desperate to write, to say something, to try to make a difference but I remain silent. I can’t even tell you how many half-written blog posts I’ve started and abandoned. They’re all saved, they all start off with promise, with a point or a purpose and before I know it my confidence dies again and the words dry up and I post nothing. It means that every time I do attempt to post I feel the need to explain, justify, and apologise because I never intended to be so sporadic about posting. I planned to show up regularly, for this to be my space that I’d carved out to inform, educate and share my experiences with the world. But somehow I always talk myself out of it.

However, today I’m here and hoping it’ll be different and that this won’t be left unfinished and saved and never seeing the light of day again. There are so many things going on in my life that it’s hard to even know where to start but the thing that made me open the document and start typing was that I’m getting worse again. I’m sure it won’t last like this, it happens regularly, almost always when there’s way too much difficult stuff going on in my personal life for me to handle, but it never feels temporary at the time. It’s always a shock when I get worse because my daily life is challenging at best and I live with some level of symptoms every day. But when I deteriorate everything is ramped up. Today for example, I’ve had 3 panic attacks and cried twice. Today’s not a special or challenging day, nothing was planned, nothing happened, but I’ve spent the whole day just feeling completely unable to cope. For weeks now I’ve felt like I’m drowning. Most of my waking moments I feel like I can’t get enough air and my sleep is worse again. I feel stressed and on edge the whole time and I’m so irritable and at times I’m becoming aggressive because I’ve just had enough of everything.

One of the biggest contributors to this deterioration is that I finally applied for disability benefits. I’ve put it off for 6 years because I’m so aware of how awful the process is but I was finally persuaded into applying in February. It’s been a long and arduous process. A 40-page form to fill out where I had to detail all the things I can’t do, the things I need help with and the ways in which I fail to function. 4 months later I had an assessment on the phone which was terrifying but I thought it had gone well. 2 weeks after that I got my decision letter through saying not only was I not entitled to anything but a whole load of lies, assumptions and errors which just felt like a personal attack. While I know the system isn’t personal, having it implied that you’re making up the severity of your condition when you’ve been disbelieved about your suffering for two thirds of your life is immensely damaging. It absolutely floored me and sent me into a tailspin. I’ll be completely honest, it made me seriously consider suicide. Thankfully I was able to talk myself round and my determination to fight has returned and so I’m going to do my damndest to get what I know I’m entitled to but my god has it made me ill just trying to keep my head above water. On top of multiple other horrible circumstances I’m living through right now, this was the last thing we needed.

As ever, it just feels like it’s one thing after another. It’s relentless. The anxiety is so ramped up that I’m regularly having panic attacks because of ridiculous things making me jump. Examples just in the last fortnight have included Joe getting too close to me, a seed blowing across the floor, Joe’s shadow, my own hair, the window cleaner, a fly, Joe speaking unexpectedly, and the remote control getting knocked. I spend most of the time, nearly every day at the moment feeling like I can’t cope and wishing I could just sleep. I’m so exhausted and utterly burnt out but I’m lucky if I get 7 hours of broken sleep a night at the moment. My concentration is absolutely shot and I can focus on almost nothing. It’s got so bad that I tune out during conversations or TV programmes that I’m watching because I just forget to listen. My attention span is a few minutes at best so I can do almost nothing. I’ve not done any colouring for weeks. I’ve had embroidery threads out for a project for 2 weeks and I still haven’t even cut the fabric or transferred the design. My brain feels like it’s running at a hundred miles an hour, constantly seeking out new sources of anxiety and fear but never able to settle into anything useful. I long to do one of my hobbies, to be able to do something other than mindlessly scrolling through social media, taking nothing in and just intensifying my loneliness. For weeks I’ve thought multiple times every day about taking diazepam to take the edge off and try to get through a little better because this is just unbearable. It gets so bad that it feels like it’s killing me from the inside out. I know this must sound dramatic but honestly, this doesn’t even capture the true severity of how intolerable and unending this feels. I guess it’s little wonder that in the midst of all of this, receiving an assessment saying that I’m basically fine was the final straw to me being able to fight this latest relapse.

I’ve not really worked out what point I’m trying to make in this post. I always try to have a purpose for them, a specific thing to say or message to impart but right now, I can’t think of one and I’m not sure I started with one in the first place. I guess I just wanted to share what this is like, to explain that 6 years on, it’s often still like the first time, that I still go through periods of my panic attacks ramping up to multiple times a day with no specific triggers or reasons and the little functioning I’ve built up gets torn down again. I always try to give a full and honest picture here of what it’s like to live with these conditions and this is part of that. I can’t go into detail about most of the reasons why things are so hard right now, perhaps I’ll be able to in the future but we’re in for a very rough ride and I’m already really wishing I could get off. I’m sick to death of the existential dread that seems to just shroud me at the moment. I want to breathe normally and freely again and not keep feeling like my heart is about to stop or the oxygen is running out. I know I’ll get through this, I always do but I wish the process got easier and quicker.

Written on August the 27th.

Random Mood Drops

It doesn’t matter how many years go by of being mentally ill, there are some things that surprise me, no matter how many times they happen. One of those is the random drops in mood that occur for literally no reason. As I write this, I’m on the verge of tears and have that, oh so familiar, heavy, rock-like sensation dragging down in my chest as if my heart is made of stone. I can physically feel it. This has always been the most persistent and long-lasting symptom of my depression. Depression for me was never just sadness, or numbness, it was the weight in my chest that got heavier and lighter but that never went away. I’ve had it since I was 15, 12 and a half long years and there’s not been a day that I can remember when that weight in my chest has gone. My depression is now mild, it remains very stable and manageable thanks to a lot of work on my part to keep it at bay and not let it rise up or take hold of any more of my life than it already has its grip on. But every now and again, for no reason at all, the weight in my chest exponentially grows and it physically hurts. It makes me want to curl up into a ball, go to bed and sleep for days or burst into tears. I instantly want to self-harm again despite not having done so in years. It makes me feel sad and guilty and angry and overwhelmed about everything and nothing.

Despite dealing with this so many times and for such varying periods, it’s still a shock every time. I never get used to it. I still can’t ever find a reason why it happens. It just does. It just is. It takes my breath away with how fierce and strong it is. It’s like someone sitting on your chest, you can’t breathe, you can’t think or concentrate. Everything suddenly feels pointless and dark. Breaking out of this is hard, each and every time. There’s no reason so there’s no specific fix or problem to solve. It just is.

Today, I’ve had a good day. I spent time at my Nana’s helping her clear out her house and tidy up. We had a lovely time and some really nice conversation. I was tired when I got home and slept for a bit. I felt much brighter and perkier after that but quickly my mood just dropped. Nothing happened, nothing that I can identify caused it. My mood just dropped off a cliff and here I am, feeling sad, feeling weighed down and already struggling to remember feeling better or brighter even though I know I did just a few short hours ago.

Although it shocks me every time, I have at least learnt to stop being scared by it because I know the feeling will pass. I never quite know when or how and occasionally it lasts for a couple of days but usually sleep, distraction and care from my loved ones helps pull me back out of the pit and gets me back on the even keel that I’m used to. Hopefully the feeling will pass quickly this time and the mighty weight that’s currently in my chest will go back to being pebble-sized. I’m not sure if these random mood drops will ever stop, they seem to be very similar to the random attacks of anxiety about nothing that I also get. It’s so disconcerting not knowing why or how something has occurred or when it’ll go or when it’ll next come back. It’s horrible feeling so vulnerable and not having control. Hopefully tomorrow will be a better day.

Update – Caring for Relatives, Life Changes and More (1st May 2019) – Video Post

This video was recorded on the 1st of May, 2019. It provides an update on where I’ve been, how I’ve been and what I’ve been doing that’s kept me busy and away from recording or writing. I talk about being a carer for my Grandad and what life is like now I’m not one anymore and how lost I’m currently feeling.

Five Years On – Five Years Of…..

I never know where to even start these posts. You all know by now that I’m one for anniversaries but as more of them pass, I’m increasingly put off and seem to mentally avoid them. I haven’t even known what to title it because how on earth do you sum up five years of being ill? How do you title something detailing what it’s been like to be unwell for such a long period of time?

Whenever I write a blog post, I try to have a plan. I’m quite a spontaneous writer, I break all of the writing and blogging rules about having a word limit and a posting schedule. As you’ll have seen, I post as and when something comes to me and sometimes that’s multiple times a week and other times I go for months without having anything to share at all. But, I do usually have a reason to post and something specific I want to say and that’s why these anniversary posts are so difficult to write because usually the only reason to write them is the date and because I feel I ‘should’ have something to say rather than actually having anything to say.

For the most part, I try to ignore the time of year, ignore the dates and don’t let them mean anything. But five years feels like a hell of a milestone and feels like I really should be saying something even though I don’t actually know what that is. My life is currently in upheaval with a huge amount of change going on and even more on the way. My grandparents who are a huge part of my life and who I’ve spent increasing amounts of time with over the last few years are moving away, it’s not that far but for me it’s a world away. I’m currently at their house at least 4 days a week, for about 30 hours as I’m a carer for my Grandad and in the next few weeks they’ll be an hour’s drive away and I currently can’t get there. I may discuss all of that at a later point but those are the basics and it’s the reason why I’ve been so quiet on social media and my blogs and YouTube Channel because all of my mental capacity is taken up being there or processing everything that’s going on and changing. It’s a hell of a lot to take in.

In some ways, I’ve been really glad of the distraction because although I’ve noticed the date approaching of me being ill for five years, I’ve not really had a chance to focus on that or be sad or really feel anything about it. I’m quite grateful for that. Five years is such a long time, it’s over a sixth of my life and I still don’t know how or when I’ll get better. Being a carer and being needed has definitely helped me to push myself harder than I thought it possible to push and I’ve certainly been noticing the changes that that has caused in my confidence levels and belief in my ability. However, it’s a very specific set of circumstances that those changes have occurred within and I feel very worried and doubtful that I can translate those to any other situations. I’m not being negative, I’m going to do everything in my power to continue to go out and not go backwards when my grandparents move and I no longer ‘need’ to go out but even though I’m managing that, I still can’t just make myself go for a walk or set foot inside a shop. There is such a mental block in my brain and somehow ‘needing’ to do something overrides that a bit but as soon as the task is a choice, I can’t do it. Even artificially ‘needing’ to do something isn’t enough to make me go. There are so many things that I want to do but wanting it isn’t enough to get me out of my front door. The situation with being a carer for my Grandad seems to have special status in my brain and overrides all sorts of things that little else manages to do. Mostly I’m just grateful that it has, that I’ve been able to build up my confidence and start meeting new people (the other carers on the team) and for it not to be so obvious outwardly that I’m suffering so badly with anxiety.

I do worry a lot at the moment about how I’m going to cope once my grandparents leave though, everything in my own life has been on hold since before January because I just can’t concentrate on anything else and some time soon, they just won’t be here anymore and I’ll go from every waking hour, and many asleep hours too, spent thinking about them to this void where they’ll be gone and my brain will probably still be so full that I won’t be able to do anything to redirect or distract myself. I’m trying really hard to be kind to myself, to be forgiving and accepting and just let myself feel whatever comes up but oh my God, it’s exhausting! My emotions are all over the shop and I can’t keep up. I’ve always been quite emotionally stable, often not in a great way but still, I’ve always felt quite stable and so I never know what to do when these periods of turmoil come up and not only is everything in my life changing, I’m also all over the place with my feelings about it all too. I’m worried about the time immediately after they leave. I have so many things and activities and projects to work on but they all seem to require concentration and even the most basic levels of that are out of my reach at the moment. I keep wanting to record videos explaining what this is like to live through because I know I’m not alone in experiencing this but I never get as far as even setting up a tripod and always remember at ridiculous moments when it’s not appropriate to be filming. I also have no idea what would come out of my mouth which is the status quo for me but when my concentration is off, it’s even more of a surprise and I feel like a liability so I tend to just avoid all of that. At least when writing a blog, I can edit it and take chunks out if I really need to, though that is something I try to avoid as I don’t like filtering things.

As you can probably tell, my brain, my thoughts and feelings are all over the place and my life circumstances are too, there is so much change coming up and I don’t know what’s happening from day to day, let alone from month to month. I have a lot of hopes about things I want to do and things I hope to achieve and I’m hoping that maybe once I have more time to myself and once my brain has finally cleared a little that I might be able to concentrate and focus and achieve some of those things. I’m hoping I might also be able to make some more significant and sustained improvements that aren’t so situation-specific. That’s a lot of hoping right there but that’s something I’ve learnt throughout being ill, I can’t plan, I can’t expect or demand but I can hope and I put all of my energy into that and then trying to make those hopes come true without placing expectations or time limits on it. It means that I’m always working and travelling in the right direction and not failing just because I’ve not achieved something yet.

Five years on, I’m not where I hoped or expected to be, but I’m still here, I’m still fighting and that’s enough for me.

Finding the Words

I don’t even remember the last time I wrote a blog post. I keep meaning to. I keep trying to think of things to say, important messages to impart. Something. Anything! And I never even get as far as opening a Word document. Nothing comes in to my head and my mind stays blank.

So what’s changed? Here I am writing and you’re there reading. Well, I decided to take a different route and think about why I had nothing to say. After all, it’s so unlike me to not have something to say and not be full of ideas, I’m usually exploding with multiple projects and picking one is what I find hard. The reason I’m struggling so much is because my brain capacity is taken up elsewhere and I’m pretty rubbish at multi-tasking. As many of you know, I’m a carer for my Grandad and have been for a number of years but the time I put into this has drastically increased since Christmas. When I began, it started at 2 or 3 hours a fortnight and over time it gradually increased to being there up to 2 days a week for a few hours each time. By Christmas, I was there about 4 days a week and by January I was there 5 days a week including all day on one weekend day. As of this month, I’m due there 28 hours a week. There are so many changes, so many things to think about and work through and take in. I’m coping surprisingly well, I’m actually really proud of how much I’m taking it in my stride but it’s definitely come at the cost of me focusing on anything else. I can’t concentrate at all. My brain just feels like mush. I spend hours every day just staring into space and thinking about all of the things that I could and should be doing and yet never quite getting as far as starting any of them. Most of the time I don’t even know where to begin. It’s making it really hard to get on with stuff, to do anything particularly normal or anything that involves any sort of brain power.

I keep trying to think of things to say, topics to write about and ways in which I can help others by writing. But I just draw a blank the entire time. In fact, my brain only seems to think vaguely clearly when I’m actually at my Grandparents’ house and doing my job there, the rest of the time it’s like it’s on standby or something. I’m hoping that just by writing something, that this might help jump start my mind into thinking about things to write and not finding the whole task so overwhelming. I miss having a voice, I miss speaking about these issues and talking to people who are like me, who understand what it is to go through these conditions and these experiences. But I guess my mind’s way of coping with the difficult things I’m dealing with in my personal life is to shut down from everything else and just focus on the one issue. Nothing else manages to creep in. I have a lot of free time outside the time that I spend with them and yet I still don’t manage to keep on top of emails, remember to message friends back or keep on top of the washing up. I feel like a failure, like a burden because despite the fact that I’m working fewer hours than my partner and that this is by far the most hours I’ve worked during the 5 years I’ve been ill for, I still suck at being a housewife, I still can’t do even basic tasks and he still has to help or do so many things that just shouldn’t be his responsibility. It’s really hard to know where the line is between what I should and shouldn’t be doing and I know I have to be really careful not to push myself too hard because despite not coming out the other side yet of the breakdown I essentially had 5 years ago, I know I could have another one now and possibly get even more ill than I was when this began. I can’t afford to do that. I couldn’t cope with that. So I’m trying really hard to be kind to myself to do what I can and accept what I can’t and to ask for help with the multitude of tasks that evade my abilities. It doesn’t come easily.

On top of all of this, my memory has got way worse. This is a particularly cruel blow and makes everything so much harder. I’ve always had a fantastic memory and I miss it so much whenever it drops and it’s the worst it’s been for months at the moment. I have to write everything down and then have to try and leave the writing in obvious places so I actually remember to read and work through the to-do list. Even basic stuff that would usually be so obvious to me just isn’t and doesn’t get done unless I’m reminded by a list. I think old age is kicking in at 28! I jest. I know that this is one of the brain’s protective mechanisms and that it’s also a sign that although my body feels ok, my anxiety levels aren’t increasing and I don’t feel physically sick the whole time, I’m only really holding on by my hands now. I’m definitely not at fingertips point, I’ve got a fairly good grip of things at the moment but it wouldn’t take a lot for me to become distracted and my grip to loosen and the whole situation to become WAY more precarious. It’s a weird place to be. I would have expected to be feeling horrendous. I’m under a lot of pressure, there’s a lot resting on me and my family are currently reliant on me being able to do the shifts I’ve signed up for because none of the other care team members can do those at the moment. Normally, pressure is my absolute nemesis. So I’ve certainly been wondering if I’m finally getting better. In some ways I think I might be. I’m certainly coping better with this whole situation than I was and finding it easier and more comfortable to travel to my grandparents’ and to be there. I’m sure a huge part of that is that I’m finally now desensitised to it and that after the umpteenth time of going, it’s got easier. It’s also partly because I’m needed. I take a lot of responsibility for things and if I’m given a task then I’m not one to drop that or not do it properly, I always do things to the best of my ability and won’t let people down unless I absolutely have to. I’m needed at the moment and I can’t let them down. But it’s also very apparent to me that I’m still very ill. Even though I go out 4 or 5 times a week to my grandparents’, I still can’t go into a shop. I still can’t just go for a walk randomly and I still can’t take my bins out. It’s ridiculous and makes absolutely no sense to me but that’s something I’ve certainly learnt about these conditions, they don’t conform to a set of rules and there’s no guessing what will or won’t change at any given time or for any given reason. I’m better at being able to go out to my grandparents’ house, to spend time there and remain calm, even when difficult circumstances arise there, but the rest of my life and capacity seems to be on hold and so all of my resources are being used up there leaving me with nothing left for things at home. This is alright for the short term and we’re trying to put things in place to allow this to not become a long-term thing.

I often wonder how I’ll be when the need for me comes to an end and I’m back to having unlimited free time and nothing specific to fill it with. I don’t cope very well without a project. I really hope that the words and ideas will have returned to me by then so I can take time to readjust and express what this has been like and process the difficult parts. I hope I can continue to be a voice for the mentally ill and for myself and that inspiration will strike soon. I really miss writing, I miss expressing myself and I miss making a difference and I hope that I’ll be back to writing and recording videos again soon. I hope I’ll be able to get back to colouring and writing reviews and being more productive but right now, my brain is mush and getting any words out at all is more than I’ve managed in months so this jumbled stream of consciousness will do for now.

If you’ve got any suggestions or requests for ideas of things to write or video about then do get in touch because I’m absolutely open to ideas and seeking inspiration from anywhere I can find it!