World Mental Health Day 2023

I wrote this post last year (2022) and I’d left it stopped dead in the middle of a sentence. I found the draft last week and felt that it still accurately described my thoughts and feelings about today so I’ve finished it off and added the last paragraph. I’ve not updated the middle so all of that is written exactly as it was a year ago so all of the ages, timescales and talk of the present or “recently” are a year out as it made most sense when read that way. Only this current paragraph and the last paragraph were written today.

Today is World Mental Health Day. It’s a day I increasingly dislike. I’ve been mentally ill for exactly half my life and in that time I’ve seen awareness of mental health skyrocket but attitudes towards mental illness aren’t changing half as much. We seem to have sanitised it, spread it to the masses, because we all have mental health, just like we all have physical health and so we all get to have an opinion about it. Year after year we get to read empty, vacuous articles about the benefits of exercise and a healthy diet and while these are true and accurate, they’re rife with assumptions, unacknowledged privilege and stigma. You see, I didn’t become mentally ill because I ate too much pizza or didn’t go for enough walks in the park. I became mentally ill for all sorts of complicated reasons that don’t fit nicely and neatly into a feel-good article. My mental health is on the floor and no amount of awareness of that is going to help me or any of the other mentally ill people I know. I’m so far beyond mindfulness and a set bedtime.

Just this week I experienced what I assume was a flashback. I’ve never had a full-blown one of these and let me tell you, despite being aware of them for years and working with people having them, I was unprepared for how visceral and all-encompassingly awful it would feel. I knew they were awful, I’ve seen people experience them and it’s terrifying trying to reach them, trying to bring them back to the present, trying desperately to help them feel safe but it wasn’t something I’d experienced fully before and here it was, 16 years into being mentally ill and it still throws up the most hideous surprises. Awareness can’t possibly prepare you for what these things are like to experience: to hear voices that no one else can, see things no one else can, re-experience things you lived through over half your lifetime ago, feeling an absolute sense of dread and fear so strong that you wish that you’d die, feeling urges to hurt yourself in horrible ways just for a momentary break from the pain you’re mentally going through. None of these things are mentioned in the mental health awareness day posts because they’re not tidy, or clean, or pretty. Most of us who are mentally ill feel hugely stigmatised by this awareness day, like the other minority groups who also have to sit through awareness days, weeks and months where companies, businesses, politicians and individuals all declare that we need to be aware, that it’s ok not to be ok and to reach out for help and it all just fades into the ether and dissipates as the awareness period comes and goes and we go back to ignoring the issues and back to placing personal responsibility on those suffering. I see people every year getting more and more frustrated by this day. I thought it was just me. I thought I was being ungrateful, intolerant, but clearly I’m not, it really isn’t good enough and falls so far short of where we need to be. We don’t even have a Mental Illness Awareness Day, there are days and weeks for specific conditions but those split us up, put us into boxes and factions rather than uniting all of us who experience mental illness and being able to share our experiences of that to create awareness and shared understanding.

There’s a huge movement online where people are reclaiming the word Mad and it’s something I subconsciously and somewhat inadvertently did when I named this blog. I’ve always described myself as mad because it’s how I feel. I don’t feel “normal” or “well” or like I did before I became mentally ill. There’s a big push to move away from medicalistion and descriptions of illness and disorders and this isn’t something I personally feel able to subscribe to because I feel ill and definitely feel disordered but that doesn’t mean that I think there’s something fundamentally wrong me as a person. Who I am is not disordered, who I am isn’t due to illness but my experience of the world is marred by illness, like a really crap pair of sunglasses, it tints my view of the world and changes everything I experience, it’s all viewed through the lens of anxiety and often depression too. Madness is often used as a slur, so much as I describe myself as it and some of those closest to me do on occasion too, it’s not something that I’d expect others to describe me as because they’re unlikely to understand the nuances I live with and the ways in which my madness affects me. Equally, I’d never describe someone else as mad unless they self-identified that way and I knew them exceptionally well. I don’t view mentally ill people in that way. It’s hard to explain and I’m not sure that all of the ideas are fully formed in my head yet. It’s a work in progress.

The difficulty with this day is it never just sticks to mental health and always slightly strays into mental illness territory but those of us who’ve firmly set up camp there often feel like outsiders and pushed out by the rhetoric of this heavily sanitised version of mental health and illness. People don’t like thinking about the fact that although there are protective factors and things that you can absolutely do to improve your own mental health, that won’t necessarily protect you from mental illness. Some people are dealt much riskier hands than others but ultimately there’s always an element of risk and it’s not a person’s fault if they become ill, they’ve not done something wrong, they’re not to blame. Huge numbers of mentally ill people exist within our society and they’re being let down at every turn. Funding is cut, treatments withdrawn, postcode lotteries dictate what services you can access and you have to be ill just the right amount to access treatment and if you have multiple conditions or diagnoses then you might as well not bother because none of these systems join up anymore and so you have to split up your symptoms, your experience, and neatly fit it into a box in order to access 6-12 sessions of something designed for one, mild condition. None of this is how humans work. None of this is humane. Mental health is not mental illness just like physical health is not physical illness and we do a disservice to everyone when we meld the two together. So often the term mental illness is nowhere to be seen. I recently discovered the phrase “mental health illness” which made me double-take because I thought I’d read it wrongly. By removing illness from our language you add in shame as if it’s wrong to be ill or that we’re deficient in some way, it doesn’t make the symptoms, the lived experience, any easier to handle but it makes it more comfortable for society to describe us in these ways and to minimise our struggles. Mental illness isn’t polite, or neat, or simple, it’s often not manageable, it’s overwhelming, it’s exhausting and using ever-softer ways to describe it, mental ill health, mental health illness, just puts separation between you and the sufferer but it doesn’t lessen our suffering. I often feel like I’m banging my head against a wall when I post here because I feel like I just say the same things over and over again. I second-guess myself and often talk myself out of posting all together or even writing because I don’t want to keep saying negative things, I don’t want to keep sharing a bleak message or coming across as ungrateful but I, and so many others like me, are so tired of screaming into the abyss, telling society what we want and what we need and still being bombarded with these vacuous awareness campaigns that do nothing but stroke people’s egos and allow companies to virtue signal.

For me, Awareness of Mental Health needs to begin with awareness of Mental Illness. We need to identify illness early and treat symptoms quickly. We need more trauma-informed approaches and we need to stop dismissing the traumatised and invalidating their experiences. We need quick access to a multitude of different treatments because we know a one-size-all approach doesn’t work and yet that’s what we’re increasingly pedalling now. We need timely referrals and assessments for Neurodivergences and these need to be screened for as standard. Research shows that at least 20% of all people accessing mental health services are neurodivergent in some way and many aren’t diagnosed as children due to atypical presentations so these need routinely screening for and waiting lists need to be shortened so they’re not years long but months or even weeks. People need to know who they are and this would go a really long way to sorting some of that problem out. It would also help people to access suitable treatments because neurodivergent people often have poor results from CBT and can have varied reactions to psychiatric medications which need to be listened to and adapted rather than dismissed or ignored by doctors who assume they can’t possibly be suffering as much as they’re reporting. We need joined up support with mental health services talking to other services in the local area so that people with housing problems or living in poverty can be helped quickly and robustly. We need funding and research and we need lived experience at the heart of all of this so that we stop doing what we’ve always done in a system that’s unbelievably broken. We need to look at the role that society is playing and realise that mental illness doesn’t exist in a vacuum. If people are worrying about housing, neighbourhoods, bills, employment, physical health or addiction, how are they going to get better?

And for the companies who’ve been virtue signalling all day, I wonder how many of them offer truly accessible employment because I’ve found almost no one does. One of my biggest hopes when covid started changing the world was that it would create permanent improvements for disabled people. I hoped that working from home would stick and that truly remote positions would continue to exist but they’re all fading away and new positions are almost always hybrid at best. As someone who’s severely agoraphobic, this isn’t an option for me and yet so many companies made it work for almost 2 years with almost all of their staff and now I can’t find work because everything is returning to “normal”. This isn’t inclusive, it’s not accessible, and it shows a really distinct lack of awareness of mental health (and illness). I’m capable of specific, limited work, I have been for the majority of the time I’ve been agoraphobic but thanks to how our society functions, I’ve not been employed for 8.5 years and counting. The majority of people with severe mental illness aren’t in employment and for many that’s because they’re not well enough and we need a better, more accessible social security system for that. But for some of us, it is systemic and societal barriers that prevent us from reaching our potential. Applying for disability benefits 2 years ago nearly killed me, it’s a genuinely horrific process that I wouldn’t wish on my worst enemy and it took me months to recover from that experience. We must do better than this, we can do better than this, but the system needs smashing down and building completely differently from the ground up so that we’re no longer putting people through such an undignified, intrusive and inhumane begging process.

I’ll leave you with this – the theme for World Mental Health Day (2022) last year was “make mental health and well-being for all a global priority” and this year (2023) it’s “mental health is a universal human right”. To me, those mean very similar things. A year on, we’ve not progressed, nothing has changed and we don’t even have a plan or a way of measuring that these goals are being worked on, being improved, or achieved. They’re wishy-washy soundbites that sound good, they make you nod along in agreement until you ask yourself, what does it mean? What does that look like? How do we achieve it? The 2023 theme is simply a factual statement, but just saying something true doesn’t make it happen and these statements end up being meaningless. It’s not a call to arms, it’s not a highlighting of injustice, it’s not a concrete plan of how things can be changed or improved, it’s just another nothing slogan that makes companies and businesses feel better when they plaster it all over their social media channels for the day and isolates people like me who know for a fact that we’re years, if not decades away from mental health being a human right. I haven’t been mentally healthy since I was 15, I’ve not received NHS treatment for my mental illnesses since I was 22, I’m now nearly 33 and no amount of exercise, journalling, reaching out, or hot baths has won me back my human right of mental health, but at least you’re now aware of it – I’ve done my bit for the day!

My previous posts written on this day and other awareness days can be found here:

Dignity and Respect – Being Treated Like a Human Being (World Mental Health Day 2015)

World Mental Health Day 2017

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

Mental Health Awareness Week – Awareness is No Longer Enough 2021

Applying for Benefits – My Experience

I don’t even know how to express how soul destroying it is to apply for disability benefits in the UK. I know about the system because when I was a child, my mum claimed Disability Living Allowance for me because I suffered from pretty severe ME. It was no fun filling out the 40-page form of all the things I couldn’t do and the help I needed but thankfully for me, my mum did most of it and she got help from an organisation and it was pretty smooth sailing.

Fast forward to February 2020 and my partner finally persuaded me, 6 years after becoming severely ill with 3 anxiety disorders, that I really was entitled to some financial help and that I should be applying. I’ve known for years I should be getting it but I just couldn’t face doing it because I knew how it would go because I’ve known a lot of people go through this system. Despite knowing exactly what would ensue, it somehow didn’t ease the effect it had on me. Had I known how much it would affect me, I’m sure I’d have never agreed at all. It’s made me so ill and it just seems to keep getting worse as each time they assess me, I’m disbelieved, doubted and misconstrued. It just eats away at you.

In order to get through my life day to day, I mostly ignore that I’m ill. I don’t focus on what I can’t do, I don’t think about myself as an ill or disabled person, despite knowingly and willingly identifying with those labels/descriptions, I just get on with what I can do and adapt as much as possible so I’m able to function the best that I can. But when you’re applying for disability benefits, obviously the focus is all on the negative and that would be fine if you only had to jump through those hideous hoops once. But you don’t. I’m now on my fourth attempt at getting them to believe the severity of my symptoms, my limitations and the amount of help that I need. I’ve already filled out their 40 page form, I’ve already spoken to a stranger for an hour on the phone where I tried my very best to answer their questions and give as much information about my situation as I could which all then got twisted. I then had to ask them to reconsider their decision after they scored me just 2 points and wrote completely inaccurate and dismissive statements that genuinely made us wonder if they’d mixed up my case with someone else’s because it was so wrong. After another inaccurate and assumptive judgement from them, I’m now having to appeal. All of this whilst navigating a global pandemic and the deterioration and death of my mother-in-law from terminal cancer just 5 days after the last decision letter came through.

Regular readers of my blog will know that despite not feeling it, I’m a very strong person who’s gone through a lot and continues to get up time and time again to keep on fighting through but honestly, fighting to get the government to believe that I’m ill enough that I deserve some money, and not a huge amount at that, is feeling like it’s too much to bear. I have to keep going into more and more detail about what I can’t do, the ways in which I fail, the ways in which I’m defective, the things my partner has to do to care for me and keep me as well as possible. I just don’t want to keep doing it. But I deserve this money, I’m entitled to this money and I should’ve had it for the last 6 years and because of their ludicrous system, I couldn’t bear to put myself through this to try and get it and so I’ve missed out. I’m trying to make a stand, to say “no more”, but every day I feel like throwing in the towel and just disappearing back into my own little world where I don’t have to perform like a circus animal to prove that I’m suffering and worthy of help.

On top of all of that, I discovered that they haven’t even used all of the evidence I sent them when I originally applied. Most notably, they haven’t used my diagnostic letter where my psychiatrist, who by chance has known me since I was 18, diagnosed me with the 3 anxiety disorders, I still suffer from, in 2015. Instead, they’ve used the 2 letters from before that in 2014 and an update letter from him in 2019 that literally says they’ll keep me on their system and doesn’t mention my conditions at all. I’m desperately hoping that this can only serve to strengthen my case at appeal but I just can’t understand why I’m at the point where I’m having to appeal, I should’ve just been awarded the money in the first place. I know this happens to thousands of people in all sorts of worse off, more obviously denying situations but that doesn’t make this any more ok that I’m one in a long line of people who’ve been unfairly rejected. I know all too well the stigma that goes along with claiming these benefits and that many lay people want the system to be stringent to weed out the benefit frauds but honestly, I don’t know how anyone who’s fraudulent would have the time, energy or persistence to get through this and actually win and the fact that 75% of decisions for this type of benefit get overturned at appeal screams absolute volumes that this system isn’t just overly harsh, it’s damn well corrupt. If 75% of any company or individual’s work had to routinely be checked, changed or overturned, you’d be hauled up before your manager or MD before you knew what hit you and you’d be sacked or taken to court for misconduct but somehow, because it’s the government and government-contracted companies, it’s all ok. But there’s no accounting for the human cost in this. I’ve noticeably deteriorated and coped worse with the other shit in my life thanks to this. I’ve seriously considered suicide on multiple occasions, not because I want to die but because I want this to stop and I want to stop feeling like a burden. That’s what depths this system takes you to. Anyone around me will tell you that despite not being an optimist and being a very realistic person, I’m bloody brilliant at making the best of things and being inventive about how to live the best life I can and yet applying for benefits to get money to help me live my life more comfortably and independently has got me to the point where I’ve seriously considered ending it because it feels and seems so unbearable.

I don’t even know how to end this post because I’ve been meaning to write about the process throughout so that you could go on the journey with me but I just couldn’t face it. In fact, the only reason I wrote this was to get my thoughts and feelings out in the hopes that it would make it easier to write my appeal objectively rather than emotionally and in the hopes that I might get enough of it out of my brain that I might sleep properly for just one night. I can’t even remember the last time I did that. The process is shocking from beginning to end from the assessment forms that are so heavily skewed towards physical disabilities with a couple of mental health questions thrown in that they can’t possibly capture what living with these conditions is like to the phone assessment with a nurse who spent almost the entire call emphasising the wrong condition and symptoms no matter how many times I tried to clearly explain what I was claiming for and why, to the decision letters that are filled with grammatical and spelling errors that are clearly created from copied and pasted statements that don’t remotely fit your case and make you wonder if they’re even assessing you, to the pages and pages of written information that you receive that you haven’t got a hope in hell of being able to take in and process and yet you still have to in order to basically beg for some money. And finally, the assumptions they make that because you’re bright and you have a degree that you’re capable of those things now, that you’re making up the disabling effects these conditions have on your life and that although you might “prefer to go outside accompanied” that there’s no evidence that doing so would cause you to suffer overwhelming psychological distress despite being diagnosed with agoraphobia that literally has that as one of the essential diagnostic criteria. I won’t be committing suicide, I’m not letting them off the hook, but this system needs calling out and exposing for the vile, corrupt, hoop-jumping exercise that it is and I’m going to fight in every way that I can to get what I deserve.

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.

New Year Update – January 2020

So, it’s 2020, my brain still can’t get used to that but hopefully it’ll catch on soon. Happy New Year! It’s been an absolute age since I blogged or vlogged. I had intended to update you all shortly after I moved but that was all just crazy and now here we are, nearly 3 months on. I’m never sure why I make these plans and goals because I know when I make them that I’ll never manage to stick to them and lo and behold, I haven’t! As ever, there ends up being so much to tell you all and so much happening that I often get overwhelmed or put off by the sheer amount of stuff to try and get out and so I put it off. But I’m finally here writing and hopefully making sense.

The biggest change and update is that Joe and I bought a flat and have moved. We bought at the end of October, I spent the whole of that week frantically decorating so that it was ready for us to move into and 8 days after buying, we moved in with help from family and friends. Unfortunately, we moved during a storm with 60mph winds and sideways rain so we did have a few casualties in our possessions but mostly it went fine, especially under the circumstances! It’s been quite a whirlwind since then. We’ve had various issues with the previous owner that have really taken the shine and excitement out of moving. We’re hoping that most of those major issues are now dealt with and we’re finally starting to calm down and enjoy the place but even on completion day we had some horrid news that we had to pay an extra £5200 that we were unaware of ahead of time thanks to various misunderstandings so we didn’t have a typical completion day at all and we spent a lot of that day in shock. It meant that we didn’t take any photos of us, no champagne to toast such a monumental day. I’m really sad that it all transpired the way it did because we’ll never get that back. It was completely understandable given that so much bad stuff was going on but it’s such a shame that we’ll never have those experiences at our first home again. We didn’t do it when we moved in together 6 years ago because we moved into the property on different days and this time it was because of shock. We completely overlooked our 8-year Anniversary the week after we moved in too because we were just so swamped with tasks to do in between Joe starting a new job and trying to navigate our way around the insane number of boxes that were piled up to head height in every room.

Since then, we’ve settled a lot more and although we’re not completely sorted out, we’re mostly unpacked and hopefully by next week things should be much more under control after a furniture delivery at the end of this week. We’ve had various issues to contend with including problems with windows that we weren’t aware of, various bodged jobs that we’ve discovered and bailiffs turning up at our door on my birthday, the week before Christmas, seeking out the previous owner. It’s not been the best and it’s meant that I’ve not really talked to most people about our move or shared anything on social media because most people are so excited and full of positivity in this situation and that’s not been the case for us. I’ve found it quite isolating to be honest because I had struggled so much in the lead up to the move after it was dragged out for an additional 2 months beyond what we were expecting. I was thinking I’d be sighing with relief as soon as my solicitor phoned and I could collect the keys and that was exactly what happened until 4 hours later when we found out about the huge fee we had to pay the following month. I was all ready to give the flat back and unpack our stuff at home and just live out our days there. Ultimately, it’s all worked out. At least I think it has, I say that quite tentatively currently because it’s not been that long and with the amount of random, unexpected curve balls that have been thrown our way recently, I’m not holding my breath that we’re beyond all of that yet. But hopefully we are and if so, then it was worth it and it’s worked out. Though it has put us off moving for a lot of years and it has made us less trustful of other people thanks to how much our seller has messed us about.

The positive things of living here are that the flat is larger so there is more space for our stuff and I feel much less claustrophobic and trapped. The space also means there’s more room for me to sort through my possessions and hopefully clear out some of those at a later point. I was able to decorate with the colours that we’d chosen ourselves and those have worked out really nicely and I’m really proud of the job I did and how homely and “us” it feels. It’s also so quiet here. I really struggle with noise sensitivity and we had pretty noisy neighbours at our last flat and it’s so much quieter here. There’s a real sense of community here too, our neighbour opposite is an absolute sweetie and really looks out for us – we were out for the day on my birthday and he heard the postman knocking and getting no answer at ours so he went out and requested the postman leave our parcels with him to save us a trip to collect them from the post office (he didn’t know it was my birthday and we have no arrangement with him for this, he just did it off his own back). We got 3 Christmas cards through our door from other flats having only lived here for 7 weeks; the same number we received in the 6 years we lived at our last flat. People say hello and talk to each other, it’s tidy and clean in the communal areas, almost everyone had a wreath on their door at Christmas. It’s just lovely! We have really nice views over a local park and we’re not properly overlooked in any of our rooms. We’ve got huge windows that let in lots of light, despite no longer being south facing and we have gas central heating, instead of night storage heaters and that’s just such a luxury! It’s hard to explain and probably doesn’t make much sense but despite my anxiety being worse at the moment, I feel calmer here. I don’t feel as stressed or unsettled in myself and I feel more able to keep on top of cleaning and tidying and managing the flat than I did before.

That being said, my anxiety is worse and in particular my agoraphobia. I don’t have any specific plans or reasons to go out and so often, I just don’t. I didn’t go out this year until the 12^th and that was only because I realised I’d not been out yet and forced myself to go with Joe to collect my mum and her partner from the airport. I’m trying to psych myself up to go out more often but even when I think about that I can feel my brain pulling away and coming up with reasons not to. I’ve also hit my yearly period of questioning my life, my purpose and what on earth I’m going to do with myself and my time. As ever, I feel completely lost and useless as well as bored and I’m spending an inordinate amount of time trying to work out what direction I want to go in and if there’s any way at all of earning money and not feeling so rubbish about myself! I have various plans that I’m really hoping I might actually get on with this year and I’m desperately hoping that some of those might bring in some money. It’s hard not to blame yourself or lower your self-esteem when you see other people succeeding in so many ways and doing all of the things you want to be able to do and realising you’re nowhere near being able to do any of that. I spent time last week researching how to train in various types of therapy and realised that the chance of that happening without a lottery win is minute. It’s SO expensive and time consuming to train and my brain so often feels like complete mush that I have no idea how I’d ever go back to formal education despite absolutely loving learning. I’ve already mostly ruled out my dream career of becoming a Clinical Psychologist because it’s so competitive, high stress and difficult to get into but I had really hoped that I’d be able to become a therapist and now even that is looking further and further away. I’m a very goal-orientated person and find that life makes far more sense when I know what I’m working towards and how I intend to get there. I’m also very career-orientated, especially as I don’t plan to have children and so most of my goals are focused on work and how I’m going to spend my time and so when I have huge wobbles or my plans fall through or change drastically, I really struggle to make sense of that or catch up. It makes me feel really lost and very panicked because I don’t cope well with the unknown and I’m very aware that I’m turning 30 at the end of this year and my life is absolutely not how I’d hoped or planned and I seem to be drifting further and further from what I wanted. It doesn’t feel like my life is changing direction, it doesn’t feel like I’m now travelling on a different path towards a different goal. It just feels like I’m lost and drifting aimlessly but further away from all of the things I’d dreamed of. I keep hoping that my purpose will reveal itself, that I’ll stumble upon a career that’s meant for me, that doesn’t require thousands of pounds of investment or unbearable pressure and demands on my already frazzled mind. I’m not sure that I believe it’ll happen but I can’t keep torturing myself by researching things at the moment, only to find out just how unattainable my chosen options are so I’m trying to just focus on the present and do the best I can with that.

Another thing I’ve noticed recently is that my ability to start things is hugely diminished. “Well” me would be shocked at how much “ill” me changes and how differently my brain works. I’ve always been someone who thought it was better to start, and to try, than to not give it a go for fear of failing or not finishing. At the moment, I struggle to start most things because I’m so worried about failing or making a mess of them. A lot of this is down to lack of confidence which is an ever-present problem for me. I question myself about everything and it’s what’s stopped me from blogging or vlogging and what’s stopped me from reviewing, doing any of my hobbies or beginning anything new because I talk myself out of it all before I’ve even started. I’m never sure how to get beyond this. I try to just ignore it and start anyway but I end up freaking out and not doing it because there are so many ways in which I could mess up or regret starting. It’s infuriating but very real at the moment. I’m trying very hard to push past it and do the things that I can do in the hopes that I’ll work up to the scarier things at a later point. It’s still early days since we moved and I know I’ve had to deal with a huge amount of changes over the last few months. It always takes me a long time to process and catch up but it does feel very unfair to be plagued by so much self-doubt and lack of ability to ‘do’ things because it means I don’t have much distraction or much to show myself about my abilities or uses. Hopefully I’ll find a use and purpose for myself again soon.

All sorts of other stuff has been going on since I last posted an update but this is already massive and before I lose confidence and chicken out from posting this I’m going to take a deep breath, press upload, and send it out into the ether. I’m working on psyching myself up to post more often both about mental health and about colouring and I’m hoping to one day be brave enough to do a video tour of our new flat. I have no idea when any of that will happen; it always takes way longer than I plan or hope for but know that I’m working on it and I hope to be back soon!

* The photo was taken during the first week of owning our flat during a quick lunch break whilst decorating my bedroom

Confidence

This is a word that comes up on my blog time and time again and in fact in conversation with me too. I seem to somehow come across as this confident, extroverted person who means business and even in the throes of an anxiety disorder I exude this to others. I have literally no idea how. You see, deep down, in fact not that deep, you barely even need to scratch the surface most days, I’m a bundle of nerves, worries and self-doubt. I have absolutely no idea how I manage to cover this up and yet time and time again I’m described as confident despite feeling anything but. I don’t overly mind this but I do sometimes worry, especially when I’m doing videos, that people think that I’m somehow different from them because although I’m ill, I’m still confident, but this couldn’t be further from the truth. Although I’m good at talking and am known for my inability to shut up, ever, I spend a lot of time worrying about it, analysing what I’ve said afterwards and time just rolling my eyes at myself and wishing I’d said something different or just stopped talking altogether. I annoy myself often and yet somehow I can’t stop and carry on talking rubbish. Just because I talk a lot and am viewed as loud doesn’t mean that I have any self-assurance about the value of what I’m saying or my authority to say it.

You probably wouldn’t believe the amount of time that I spend comparing myself to others and wishing I was different. If I spent half of that amount of time actually doing something productive or changing myself in a specific way then chances are I’d be more like the people I so admire. But I’m never sure in what way to even change, what bits to add, what bits to take away, and so I just continue to compare and wish I was more like them. It probably sounds ridiculous and I always feel that way when I talk to people about it in my real life but I don’t even feel like I’m ill in the right way. There seem to be acceptable ways of being ill and unacceptable ways and I’m pretty sure that I’m mostly in the latter camp. I’m not half as productive or effective as the majority of people I know who are mentally ill and in terms of social media advocation, I’m really low down. I don’t have the energy, capacity or will power to stick to a posting schedule and I have literally no idea how other bloggers and mental health advocates manage to create the sheer volume of content that they do. I often look at the list of posts that I’ve published for ideas and come to a halt because I just don’t know what to write about anymore, I’ve done the big and obvious things like describing what it’s like to live with depression and anxiety, what my appointments with my psychiatrist have been like and sharing updates when I’ve had big positive or negative changes in my health but apart from that my ideas seem to have run out. For someone who absolutely always has something to say, I seem to have a lot less to write than I’d like to admit.

I often wonder why this is and I think it’s because of the topic of this exact post – confidence. So often, I’ll talk myself out of even starting a post because I question it or decide that no one will care or I won’t do the topic justice. I spend a colossal amount of time now wondering who the hell I think I am and why anyone would care what I have to say when I’m one tiny voice in a sea of much more competent bloggers. They are able to function, even to make a career out of this, to get paid for their publishing, create regular content to an actual schedule and even go viral! I know it’s silly to be competitive about blogging but I tend to wonder what I’m doing wrong and what I could change in order to reach more people or make more of an impact. I’m not interested in fame or getting rich from this but I’m desperate to make a bigger and more meaningful difference than I currently am and I can never work out an effective way of doing so. We all go through blips of low confidence and second-guess ourselves but I seem to be the complete opposite and have blips of belief in myself followed by weeks and months of not even wanting to try because I just know that I’m not capable and feel like I’ve got nothing valuable to say. Lack of confidence regularly goes hand in hand with setting the bar increasingly high and so now I feel extreme pressure to post something really valuable and worthwhile because it’s been such a long time between each post and so I really need to share something worthy of people bothering to read it. The more I think like that, the harder it is to conjure up an idea that could possibly match those criteria and hence I go for months at a time of posting nothing because nothing ever makes the cut. I even start posts and they just get lost in a drafts folder, often never to be seen again. I wish I wasn’t such a perfectionist and would just share more frequently in the hopes that doing so would help me get beyond this. I try to talk myself into sharing some of the posts that I don’t think are up to scratch or finishing off some of the half-written drafts that I’ve lost count of the number of. I get to the point of thinking that any video, no matter how random or disjointed would be better than sharing absolutely nothing but then I get whatever the YouTube equivalent of stage fright is and just can’t be coherent. It’s a real nightmare! I’m lonely, I’m isolated and I know I’m one of what must be thousands of people in the world who feel the same way. I want to be able to voice our experience, to shine a light on what it’s like and to get some of the thoughts that spend hours swirling round and round in my head, out and into the world in the hopes that it might quieten my mind just a little and have at least one of you reading or watching saying “hey, that happens to me too, I’m not alone”. But the lack of confidence renders me mute. You’re probably sat reading this half shouting at the screen that it clearly doesn’t and this must be a lie because there you are reading a post that I’ve written but this was actually written ages ago and it’s taken until now to muster up the courage to post it. This lack of confidence isn’t an act and it’s something that try as I might, I’ve not won the battle with for over a year and I see no end to that arriving anytime soon. I question myself constantly, I try to talk myself into posting something, anything, and yet the vast majority of the time I don’t even get as far as starting before I’ve talked myself out of it and decided it’s pointless and no one would be interested anyway. Once I finally have written something I usually feel that it’s not coherent, is far too negative or just sounds whiny and after getting a particularly hurtful comment from someone I know after sharing one of my last blog posts, my confidence is even lower and I second-guess myself even more.

My hope in posting this post, albeit quite late, is that it might spur me on with continuing rather than starting again. I continually try to not leave huge breaks between posts and then time just passes by and my anxiety about needing to post something spectacular increases to an unbearable point. I’ve lost count of the number of times I’ve opened this document and wanted to just post it on my blog and then chickened out. Normally when this happens I’ll get a friend or family member to read it and check it’s ok and get them to make suggestions for edits but I don’t even have the confidence to do that. I finally asked my partner earlier in the week to read this but he forgot and I’ve not been brave enough to ask him since. He never judges me and always tries to boost my confidence but I’m so worried this is bad or whiny that I can’t face getting someone to check. By the time this is posted I’ll have almost certainly had to psych myself up, hold my breath and mentally scream at myself to just hit the damn ‘publish’ button and I’ll probably feel sick for ages afterwards waiting to see what reaction it gets and whether I’m going to be criticised again. I think I’ll always be amazed when people describe me as confident when a constant stream of all of this is permanently running through my mind.

I normally try to end posts on a poignant note but I’m all out of those. I’ll try to be back soon with more posts and videos. If you have any suggestions or requests then do let me know in the comments or via the contact me tab where you can contact me privately. I don’t have any ideas for future posts at the moment so any ideas are gratefully received.

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!