Ten Years On – Ten Years of Trying to Make a Difference

10 years on. This is a post I never imagined I’d write. I hoped it wouldn’t be necessary. Or at the very least I hoped it would be a look back on a terrible period of my life from a brighter future, free from anxiety, the memories of it fading as each day passed. But that isn’t the case and so, as ever, I’m here to mark another year. It’s difficult to know what to say, where to begin. I feel like I’ve said everything already. I’ve whispered it, screamed it, ignored it, felt drowned by it, continued in spite of it all and I don’t really know what to say that I haven’t already. As usual, this is just a stream of my consciousness so I’m assuming this post won’t end abruptly at the end of this sentence and eventually I’ll spew out a long stream of far too many words about something, or nothing, or a rambling train of thought, or 15, will come tumbling out, but right now I’m at a loss.

Every previous year on this date I’ve been slightly comforted by the fact that it wasn’t a milestone year. That I still had time ahead of me to recover and have this post be the one that looks back with distance from a place of recovery or marked improvement. This milestone is certainly hitting me very hard. All those years ago I’d never even imagined that I could still be this unwell, still be this scared of everything and nothing. I find it harder and harder now to see a future free of this, a future that isn’t limited to travel within my county, eating safe foods, planning everything to the nth degree and a constant underlying feeling of dread quietly pervading everything. I wonder when a trip to the dentist won’t cause me sleepless nights and panic attacks for a week in advance, or unexpected phonecalls from strangers won’t render me nearly mute.

The thing I notice most now is exhaustion. An exhaustion that’s hard to describe or put into words because it’s so complete, so encompassing and yet so layered that no matter how much you think you’re at the very deepest depths of it, it still surprises you and finds a way to become deeper still. I’ve been saying for longer than I can remember about how tired I am of being anxious and the more time that passes, the worse this seems to get. My tolerance for it regularly drops off a cliff and I feel increasingly angry about the unfairness and relentlessness of it. I’m bored of it all. I also regularly feel incredibly stupid because it shocks me over and over again the intensity to which I feel anxious. It’s something I never get used to. That probably sounds like a really stupid thing to say – if something hurts it hurts, if it’s scary it’s scary, whether it’s the first time or the thousandth, but I think we all think we’ll get used to things, even really awful things, eventually. Again, it’s not something I can describe well in words because in some ways you do get used to it, I know a panic attack a mile off and they’re not scary now in the same ways as when I first started having them. I don’t tend to think I’m imminently going to die anymore. But these experiences bring new things with time, like lack of tolerance, anger, disappointment and the exhaustion I mentioned. I didn’t get those early on into the anxiety but now it’s almost every time. It’s like being on a really awful roller-coaster or hearing a song you hate, at first it’s a bit annoying, it might take you ages to realise it’s the song you don’t like but after a while even the first note sets you on edge and sometimes just hearing something similar will be enough to wind you up. That’s the way my anxiety is often like now, even feeling something near it like nerves, excitement or apprehension, is often enough to start to make me feel overwhelmed because I’m just so tired of fighting. I can’t explain to you the level of exhaustion you’re left with after 10 years of fighting your own brain that’s constantly telling you you’re under threat and in imminent mortal danger.

I’m not going to take this down the super depressing path of listing all of the things I’ve missed out on in 10 years, there have been weddings, funerals, parties, holidays, all been and gone. Thankfully I don’t particularly have regrets which is something I’m very grateful for. It’s hard to regret things you don’t have a choice about and none of these things have ever been a choice.

I’m not an optimist, but I’m not a pessimist either, my Grandma always said she was a realist and I try to be one too so the following is a list of things I’ve achieved since developing my anxiety disorders. These are not things I’ve done because of my anxiety, I’d give up most of them in a heartbeat if I never had to feel anxious again, but they’re things I’ve done to improve my life, help others, fill my time, bring meaning and purpose, or to generally try to avoid my brain just rotting into an anxious gloop. I learnt to crochet and set up a Facebook page selling it for over a year. I was a carer for my Grandad who had Alzheimer’s for 4 years. I scrimped and saved and researched and investigated how to buy a property whilst in a very challenging financial position that meant we were only offered 1 mortgage by 1 provider. I moved house despite being severely Agoraphobic. I decorated our flat almost singlehandedly while Joe had to train for a new job. I set up this blog over 9 years ago. I set up my colouring blog the following year and have reviewed over 300 colouring books from a mental health perspective and countless sets of pens and pencils. I created a YouTube channel to share reviews and personal vlogs. I’ve learnt to knit and made my first scarf and hat that don’t have holes in! I’ve taught myself to bake and decorate cakes. And I’ve spent 2 years doing freelance work with Samaritans where I’m building my confidence and self-belief and making a bigger difference than I can here in my corner of the internet.

While this sounds like an impressive list and it’s a good reminder for me of all that I’ve done, these things don’t negate or ease the difficulty of day-to-day living with anxiety as severe as mine and I’d give up nearly all of it if I didn’t have to be anxious again. 10 years on, I’m not where I expected or hoped to be, I don’t see an end or even a beginning to an end in sight but I’m still here, still carrying on, still bleating on to anyone who’ll listen about what it’s like to live like this, to try to make people understand. 10 years on, 10 years of trying to make a difference.

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

Nine Years On – Nine Years of Setbacks and Hope

Just

I was talking to a friend this week about chronic illness and a condition I’ve suffered from for over half my life and despite the fact that she’s known me for 13 years, I didn’t realise I’d not got across what it was like to live with this condition. So, in talking to her, I was trying to come up with tips for how the healthy can help and relate to those who are ill and one of the things I landed on was to stop using the word ‘just’. It’s such a little word and we all use it all the time, just one more biscuit, just one more episode, just a short nap, but as a chronically ill person, I’ve really noticed the insidious nature of this word and the meaning behind it and how often it’s used to minimise. It’s so easy to make suggestions to chronically ill people to just try something, after all, what have we got to lose? But in actuality, we often have a lot to lose and we’re regularly teetering dangerously close to lasting or permanent deterioration, which most outsiders will have no awareness of.

Chronic illness is a cruel and confusing beast. It’s different for everyone and changes over time, be that years, months, or even minutes. It’s often not visible or only noticeable to others if they really look, if they really know you and pay attention to the subtle changes. I can look at photos from my past and see from the colour of my skin how well or ill I was, but you’d never know from the smile plastered across my pasty face. Of course, there aren’t any photos of the bad days because I was indoors, curled up on the sofa or in bed, for weeks at a time, trying to save up enough energy to participate in the world again, only to be told I looked fine and couldn’t possibly have been that unwell, as soon as I reemerged. Each condition has similarities across sufferers but rarely will you find an account that exactly mirrors yours and so when you’re inevitably told, “Oh I know someone with that and they got better by doing….” when you disclose your diagnosis, you have to make a snap decision about whether to go into detail about your own situation and how it’s probably different from theirs and contrary to popular belief, you’ve probably tried more “treatments” and “cures” than they’re even aware of existing and still you’re here just doing your best to exist in the world without needing medical advice from well-meaning strangers. Or whether you just politely nod, whilst screaming inside, and wait for them to hopefully move on.

The thing people so often don’t realise is that they’re not the only one saying this, every chronically ill person I know is bombarded by relatives, friends, colleagues, acquaintances and strangers offering suggestions, questioning their efforts and wanting updates and it’s exhausting! Most of us are well aware of how to best manage our conditions or the things that help us feel better and whether we’re doing those or not, is an entirely personal matter but as soon as you’re disabled or chronically ill, people seem to think your medical history is fair game and up for discussion and that if you’re not actively working on improvement 100% of the time, then you’re clearly malingering and don’t want to recover. I don’t even know where to begin with describing how wrong this is. Firstly, it’s personal, private, and nobody else’s business. Secondly, it’s so utterly unrealistic! I can’t tell you how exhausting being chronically ill is, and that’s not just the fatigue caused by so many of these conditions, it’s all of the added extras they bring with them: the admin for taking medication, organising and attending appointments, chasing things up, planning your diary, planning things around your care/support team like me needing to organise appointments for when Joe’s off work but also trying to not wreck every day off. There’s also the very common experience that we have lower energy levels and activity saps far more energy for us than for healthy people and therefore our candle is burnt at both ends, by having less energy to begin with and tasks taking so much more effort than they should and having to factor in pacing, rest, and how on earth you can fit chores that have to be done into limited energy windows. Then there’s all of the reorganising that has to happen when you randomly get a flare or a crash. I’m trying to learn to not put off the washing up because I inevitably end up getting a migraine, tremors, or debilitating fatigue and not being able to do it and I can’t tell you how sick I am of running out of crockery when I need it most! On top of all of that, there’s the emotional side – the grief, the feelings of failure and guilt and resentment and anger and sadness and fear and so many, many things. I’ve been ill since I was 9. In many ways, I know no different, I certainly don’t remember much that’s different from this, but I still spend so much time comparing myself to others, wishing I could do what they do, be where they are, achieve what they can achieve. I know I’ve done astounding things for someone who’s been as unwell as I have, I know plenty of people would look at me and wish they had what I do and I am truly grateful for what I have and have managed and I’m forever grateful to not be sicker than I am, but there’s always that underlying anxiety and worry that it’ll get worse, that another piece of functioning will drop away, that the next infection or metaphorical roll of the dice will make things infinitely harder or worse and that feels impossible to manage.

It’s for all of those reasons and so many more that it’s so important to not add ‘justs’ to our burden because however much you see us doing, trying, achieving, or not, you won’t be aware of what’s going on for us beneath the surface and the toll it’s inevitably taking. You might think it’s a tiny thing you’re suggesting and to you it’s possible it would be, but each change to our routine, each new strain on our system, each thing that requires more concentration or brain power is another thing draining our resources and for many of us who are running a very limited system, as soon as you add something in, it takes the place of something else and that falls by the wayside. I have a finite capacity for energy use, I can add in yoga but it might mean I can’t wash up today, or I can have a therapy session but I can’t then read a book, every decision I make is weighed up and balanced against what I have to do versus what I want to do and knowing I’m never blessed with enough energy to do everything on my to-do or want-to-do lists. Everyone will have an opinion on what I should prioritise, what I simply must do and what I should never bother wasting energy on again but those will differ from person to person and none of those people are me. I had it drilled into me when I was a chronically ill child that I must do the important things like going to school and thankfully, I forget now who it was, but a professional of some kind, and possibly my mum, made it very clear that I absolutely had to be allowed to do things I enjoyed too. My school were trying to make me just do academic subjects but I needed to be allowed to have fun, to enjoy things and to be a normal child by doing subjects I loved or hobbies I was passionate about and so all the time I was capable, I was supported to continue with ballet lessons and study creative textiles because they were the things I enjoyed. This was often very loudly criticised by people around me and I felt a lot of confusion and guilt when engaging in things I enjoyed because there was always a long list of things I “should” have been doing that I could’ve been using my precious energy on instead. It means I still struggle with these feelings now. I gaslight myself relentlessly with criticism and comparison to others about why my flat isn’t pristine, why I’m not studying from home, why I’ve not been able to set up a successful business or keep my environment cleaner and tidier. On rational days, I know this is because I’m running on a broken battery, I’m trying to do 100% with a battery that at most charges to 50% so of course I can’t do what everyone else does and on top of that, each task that takes someone else’s battery down by 5% is actually taking mine down by 10-20%. I have to remind myself that it’s not because I’m lazy or that I don’t have willpower, it’s that I’m genuinely working with completely different conditions (literally and figuratively) and expecting myself to do what everyone else can when they’re not experiencing everything that I am, is completely unfair and unrealistic. One thing that’s helped with this which I’ll go into detail about in a future post is getting a smart watch that accurately tracks my heart rate, my sleep, my activity and other vitals and as a data fanatic, I can’t tell you how much it’s helped to see this data plotted on graphs showing exactly why I’m feeling so rubbish and declaring that it’s actually fair enough that I don’t do more and that actually I’m doing plenty when you look at what I’m working with. Like I say, that’s a story for another time but it’s certainly been eye-opening for me.

Something I find it very difficult to explain and remain impartial about is this really fun thing in society, at least Western society, I can’t speak for others, where we blame and ‘other’ people who are disabled or ill. I know exactly why we do this, it’s to protect ourselves and make the world feel safer because if you’re different from me and my difference is the reason I got sick or disabled then you don’t need to worry because you’re not like me and therefore won’t end up like I have. But the truth is, we’re all one unlucky roll of the dice away from sickness or disability, they’re not caused by failure, faults or personality types, in fact, the condition I first became chronically ill with, ME/CFS is actually known to affect high achievers and Type A personalities, far more than any other group, despite it being stigmatised as laziness and deconditioning. Most people will be horrified and state they don’t think like this but there are very few healthy people I’ve ever met who don’t have at least some of this attitude internalised. It’s completely natural. I’ll freely admit that had I not got ill so young and had my world view turned upside down and inside out for good measure, I’d have been loudly proclaiming that people just needed to buck their ideas up and have a positive mental attitude and that would sort them right out. How wrong that is! If people don’t want to face reality and realise that it’s just luck that means that I’m ill and they’re not (yet), then so be it but I would love for people to look inwards and dispute their thoughts and beliefs when it comes to dismissing or othering those around them because I’m not ill because of my personality or some kind of failure and it’s not my fault, I was just unlucky and I do the best with what I have, regardless of how it may look. That’s all I can do and that’s the most that should be expected of me and some days that’s too much, I can’t always do my best, sometimes half-assing it is as good as it gets and that needs to be acceptable too.

All this to say, in a long and rambling Lucy-style way, that despite knowing someone for over a decade, it can be very easy for them to not understand what your life is like and to really underestimate what you’re going through. It’s easy enough to do that to yourself, especially when you’ve been treated badly about your conditions and how you’re dealing with them and so it’s even easier for others to do the same. It’s also never too late for people to learn, to find something that gets through to them or reaches them in a different way and to try not to give up on those around you who don’t get it yet. For healthy people, it’s incredibly difficult for them to understand something that’s never happened to them, the idea that you get sick and then randomly don’t get better when they always have, is very alien and very scary and for those of us who’ve gone through that, it’s alien and scary to us too, but we know it happens because it’s happened to us and we have to adjust our reality to that new information and we quickly realise that doctors, science, the whole field of medicine and health are absolutely not what we think they are when we’re healthy. They’re not all-knowing, curing, caring beings who are fascinated by newness and inquisitive about fixing issues, we discover that diagnoses of elimination exist, that there are A LOT of things that medicine doesn’t know and worse still, a whole load of things they’re not even interested in investigating. We learn how to split up our conditions, to minimise or not state any mental illnesses we might have for fear of anxiety being blamed for any unexplained symptoms, and we learn to live with levels of suffering most people don’t even realise are survivable, let alone ignored and deemed tolerable by doctors who tell us we’re med-seeking, addicted, or have a personality disorder. My partner had a baptism of fire when beginning to attend appointments with me and I still remember the rage he used to leave the appointments with, often ones I came out of thrilled because I’d been listened to for once or got a referral to a specialist in months’ or years’ time. It’s a different world that we inhabit but until you cross over, either temporarily whilst accompanying us, or by becoming one of us, you don’t realise that this world exists, that it looks the same and sounds similar but is so completely different and scary and isolating and that no one is coming to save you, fix you, or make you better.

What we need most of all (apart from decent treatments and cures, those wouldn’t go amiss) is allies. We need people alongside us listening, understanding, accepting, trusting us, fighting for us and believing us. We need you to stick up for us, to fight our corner when we can’t, to accept our best, to believe what we tell you about what we can and can’t and are and aren’t doing, to meet us where we are not constantly push us forwards, to realise that whatever frustration or anger you’re feeling about this pales into insignificance in comparison to how we feel living it all day every day, we need you to understand and to realise when you don’t and to try to but don’t make us do all the legwork – watch programmes about the conditions, find online support groups or advocates, read research papers to find out what these conditions are like to live with and what your loved one is experiencing and remember that underneath it all, we’re still the same person but chronic illness and disability changes you, it can’t not, and that’s ok. It’s very hard to adapt to and accept these changes but there’s no way of remaining exactly as you were before you became chronically ill or disabled and other people need to adapt to this too. The biggest change you can make today though is to stop minimising and stop saying ‘just’ because all of those things being suggested to us are overwhelming and alienating and they can convince us that we’re disbelieved and that our best isn’t good enough and ultimately they can lead to us pushing ourselves so hard that we permanently deteriorate. ‘Just’ is the start of a slippery slope and while it’s often meant well, it’s usually unnecessary. We’ve got this, it ‘just’ might not look or feel like it!

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

Excluded for Being Mentally Ill

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

The end of school isn’t a time I like to think about. I remember the good bits and have spent the last 14 years trying to ignore the rest but as is the way with these things, when you try to bury them, they often resurface when you least expect it. Today, I was reading this post by mental health charity, Mind, about the Hubs they want to have created to give young people a place to go to get quick and easy access to mental health support before they deteriorate on waiting lists. The descriptions they gave of children and how they’re being treated brought everything flooding back to me because despite so much progress apparently being made in society in the last 14 years, how schools, doctors surgeries and mental health services are treating young people hasn’t changed a bit. So I’m going to go back and explain what happened to me because it’s something I’ve never felt able to talk about on here, or really in real life either. I’ve told people bits and pieces or slipped sections into conversation but I’ve never really gone into detail because it was too painful and most of all, I was embarrassed and ashamed, something I should never have felt and something I hope to one day be able to move past.

I became ill with depression just before my 16^th birthday. Things were bad at home, my parents weren’t getting on and I dealt with it very badly. 18 months later they were separated and 18 months after that, divorced. The month before my 16^th birthday I seemed to just lose my ability to cope. Rather than taking things in my stride or believing I could cope and things would get better, I started having darker and more bleak thoughts and felt sad all the time. I spoke to a trusted teacher at school and she said to try and be nice to myself, to relax and to try and have a nice Christmas. I don’t remember much of that Christmas but I know it wasn’t good and things were at a real low in my family. By January I felt worse and wondered if I might have depression. I knew nothing about it but had heard it on TV and given that I felt sad all the time, it seemed like that might be what was wrong so I eventually asked my mum to take me to the doctors. It was a total waste of time. The doctor was really dismissive and said it was the time of year, that it was January Blues and “Every teenager in the country feels like this at the moment”. It’ll pass. I said to her that if that was the case there were going to be a lot of dead teenagers but she sent me home with no diagnosis, no help and no treatment.

By February, I was coping much worse and for the first time in my life I started self-harming. I vividly remember the date and the circumstances that led to that, even 14 years on. I’m absolutely terrified of pain, verging on phobic about it. I avoid pain at all costs, am phobic of needles and completely freak out at the idea that something will hurt. And yet, here I was self-harming. At first it was maybe once or twice a week, it certainly didn’t stay that way. 6 weeks after my first appointment, I asked to go to the doctors again, I was now regularly self-harming and seriously contemplating suicide and wishing I was dead. She immediately referred me to CAMHS (Children and Adolescent Mental Health Services). A few weeks later I was assessed by CAMHS and within 10 minutes I was diagnosed with depression and put on anti-depressants. No therapy, no talking about the root cause, no explanation to me or my next of kin about the effects these meds could have on me whilst taking them or if I stopped suddenly, just a prescription for some pills. Soon after this I started restricting my food intake.

The whole of this chunk of my life is hazy at best. There are milestone moments that I remember but the day-to-day and the exact order everything happened is really hazy because I was so unwell at the time. I became hugely sleep deprived and was sleeping under 4 hours a night. I’ve always had major sleep problems but this was in another league. By February or March I was seeing the school counsellor and while she was lovely, it was fraught with problems. I got kind of obsessed with her and completely reliant on the one adult that was actually listening to me and taking me seriously. She didn’t know me very well and didn’t really seem equipped to deal with someone as severely ill as I was becoming and quite honestly, I think she was out of her depth but she was all I had. She made various promises about what would and wouldn’t be kept between us and so I knew where the boundaries were. Unfortunately, and again, my memory of this event is really not clear, at some point she agreed not to tell my parents something, possibly about the extent of my self-harm, I don’t actually know, but then went back on her word and didn’t tell me so the first I knew of it was my mum appearing in a school corridor after she’d been called in. It turns out, despite being a pretty composed and collected person, I don’t react at all well to being cornered or surprised. I refused to go home and ran off to go and find my trusted teacher who helped calm me down. I don’t remember what happened after that but I never trusted or confided in the counsellor again.

As I deteriorated further, my sleep remained bad, self-harm increased and I was losing weight. My nurse at CAMHS was an eating disorder specialist nurse who seemed like she’d never met a person with an eating disorder in her life. Every week I’d be asked how I was doing, every week I’d tell her I was worse because my life was starting to spiral out of control. I know that must sound like typical teenage angst but it genuinely wasn’t and things were worsening at home and my depression and symptoms surrounding that were worsening too. I was also months away from leaving school and having to go through huge changes which I also don’t cope well with. Every week she’d tell me “Well you’re looking better”. I’d be weighed each week and she’d make unhelpful comments if I’d stayed the same or gained weight which just spurred me on to reduce my calorie intake further. At no point did they give me any techniques to be more resilient or to learn to take things in my stride again and I was mostly just told to hold ice or ping rubber bands so that I stopped self-harming and to focus on the future when I could move out (a likely 3 or 4 years in the future). Suffice to say, none of that helped.

In May, my Grandad was hospitalised and died a few weeks later. My anti-depressants weren’t helping and just made me feel numb and I knew it was bad if people didn’t process death and this was the first death I was exposed to so I came off the meds. My family were furious and my nurse and doctor at CAMHS were equally unimpressed. I was told off which felt really unfair given that I’d done it for the best reasons. Again, I don’t remember the circumstances fully but I had an appointment with CAMHS and my trusted teacher offered to attend with me as it was just round the corner from my school. She came but the appointment went very badly and I ended up in floods of tears with her outside on the pavement refusing to go back to school because I felt so helpless. Unbeknownst to me, this triggered her to need to leave school for the day. That night I slept for 2.5 hours. I woke up at 5.30am and just couldn’t be in the house anymore and decided I was going to go out. I wrote a note to my family explaining that I’d gone out and taken my school stuff and would attend school on time but I just couldn’t be in the house. I walked to the beach and sat there watching the sunrise. My mum kept calling me and I didn’t answer. I didn’t want to talk to her knowing I’d be told off. I knew it was dangerous to go out in the dark at 16 years old but I just couldn’t stay in the house. Eventually something in me told me I had to answer the phone and mum asked where I was. I said I wouldn’t tell her but that I was safe and was going to go to school. She was very insistent that I had to tell her where I was. I eventually did and before I knew it she pulled up in the car and made me get in. It was there that she explained I had been excluded from school. I didn’t believe her and thought she was just trying to scare me or punish me for “running away”. I hadn’t done anything wrong and school couldn’t know yet that I’d run away so I couldn’t possibly be excluded but she explained she’d had a phonecall from the school the previous day and because I’d upset the teacher, they couldn’t have me in school while I was “behaving like this”. My world fell apart. I had exams coming up, my leavers’ service and my school prom and I was told that I could do my exams in isolation and I wouldn’t be allowed to attend anything else, no last lessons, no leavers service, no prom. They weren’t even going to let me say goodbye to my friends. Thankfully, one of my exams was a 5 hour textiles exam which had to be done in school and they eventually agreed that if I “behaved” in that, that they’d consider letting me attend my leavers events. Being someone who was good as gold throughout school and never once got sent out of class or given detention, that wasn’t difficult and after a week of exclusion they agreed to allow me back in class and to my leavers events as long as I “promised to behave”, whatever that meant. I still don’t actually understand what rules I broke or what I was specifically excluded for other than accidentally upsetting a teacher who was probably inadvertently triggered because my experience was a bit too close to home. I attended all of my leavers’ events and lessons without incident.

At college, it had been handed over that I had mental health problems and I had to have a meeting with someone before attending. The ‘rules’ were spelled out about not being allowed to self-harm on the premises and that I’d potentially be expelled if I did. For the avoidance of any doubt, I’ve never self-harmed anywhere other than at home and I’ve never carried dangerous objects or showed anyone my injuries unless made to and my injuries never required medical treatment or intervention of any kind. It was such a humiliating experience. I completely understand that of course it would be completely inappropriate to self-harm on school, college or workplace property which is why I’ve never done it but it’s so embarrassing having that spelled out in detail to you and you being talked to like you’re some kind of deviant or criminal. Self-harm for me was always a coping strategy and a means of survival. It’s why I don’t feel ashamed of my scars and why I no longer deliberately cover them up because I’m sure I’d be dead if I didn’t have them and hadn’t got through in that way. I’m never going to apologise for that because to apologise for self-harming would be to apologise for being alive and doing what it took to survive those times.

I managed to hold it together for a few months at college but I felt like I was falling apart. My eating disorder worsened and I was very close to being diagnosed with Anorexia. I’m not sure if I ever did get an official diagnosis or not but I was told I had Eating Disorder Not Otherwise Specified, Anorexia Type because I was slightly over the weight at which I’d be classed as Anorexic. I was cold all the time, I felt faint a lot and just completely miserable and overwhelmed. I had been put on a different anti-depressant just after my 17^th birthday which made me dangerously suicidal (again with no prior warning of this possibility given to me or my next of kin) and so I took myself off that after 4 weeks. Again, I was told off for this but I absolutely maintain that I’d be dead if I’d remained on it because the suicidal thoughts and feelings were so intense. I was put on a third a couple of months later which made me sick which really didn’t help my eating disorder, I was taken off that one after just a few weeks.

Thankfully, my dad had private medical insurance with his work that covered the whole family and my GP at the time (a different one from the previous year) suggested going private. I spent a couple of months having check-ups whilst I deteriorated and in that May (2018) I said I couldn’t keep myself safe and didn’t want to and that if they left me at home, I wouldn’t be alive to see the next appointment. Within days I was admitted to a private psychiatric hospital for what was initially meant to be 4 weeks and turned into 9 weeks and I was only discharged then because the private medical insurance funding ran out. My parents separated while I was in hospital and I was discharged to my new house having visited it once. I stayed in outpatient therapy for months after that.

My physical health deteriorated, probably because of the sheer strain of the mental illness I’d been suffering from relentlessly for 18+ months and my attendance at college dropped hugely as I became functionally nocturnal because my insomnia got so bad. College threatened to take me off my courses when my attendance dropped below 50% despite it being entirely because of illness. I fought and fought to be kept on so that I didn’t have to do another year and finally managed to get them to agree but it was very begrudging on their part. Yet again, I was treated like I was skiving and not bothering to turn up, rather than so ill and so sleep-deprived that I was asleep at home during lesson times because it was the only time my brain would shut off enough. I eventually managed to drag myself through my A Levels and after some retakes I managed to get the grades I needed to go to University the following year.

Throughout these experiences it didn’t feel like I was treated fairly. I wasn’t naughty or disobedient, I wasn’t acting up or misbehaving. I was ill. I had a challenging homelife, I’d been physically ill from the age of 9 with ME/CFS which led to lots of disruption and an abnormal childhood and I’d been bullied a lot and after it all caught up with me, I was then treated like I was bad. I understand that it must be really hard for schools to know how to handle children like me, they’re experts in teaching but they’re rarely trained in mental health but what worries me most is that in 14 years it seems that almost nothing has changed and so many mentally ill children are still being treated like they’re naughty and punished and penalised for symptoms and behaviours that they simply aren’t in control of or to blame for. It has to change. We have to believe children, to take them seriously and intervene quickly and robustly. We need to give them understanding, teach them coping techniques and not punish them for symptoms of mental illness that they can’t help. I was a model student with an exemplary record throughout my time at school and it’s beyond embarrassing to remember that I was excluded because I was so ill. We must do better.

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

It’s that time of year again where we hit the anniversary of me being signed off sick from work. I swear it comes around quicker every year. As ever, I don’t really know what to talk about but having noted this day in written-form for the last 6 years, it seems a shame to quit now so I’m probably going to do what I’ve done almost every previous year and ramble until I come to a close.

Yesterday, I thought I’d read through all of my previous posts written on this date each year to see how things have changed or stayed the same, to see how my writing style has evolved and to see if it would inspire a specific thing to write about. It was a strange experience. My sense of things is often at odds with how they actually are and this is most notable in my sense of my writing. Often, when I write a post, I think it’s truly dreadful and mostly a rambling mess. I take a big breath in and start reading through ready to attempt to heftily edit whatever meandering thought soup has been typed out. Almost every time, I’ll barely edit it at all because when I read it back, it actually says what I want to say in a surprisingly coherent, cohesive and interestingly written way. But it never feels like that when I’ve written it and I’ve never been able to work out why. It’s exactly the same with my vlogs. I suffer from dissociation symptoms and usually only get 2 lines into my vlogs which I start knowing a theme and a couple of examples and little to nothing else in terms of a plan, and then I dissociate and have little to no recollection of what I’ve said. It means I have to go back and watch every video before posting it to check I’ve not sworn or said anything I’m not allowed to and haven’t gone too personal or dark or overboard about whatever the topic is. As yet, there’s never been a video that I’ve had to edit, re-record or not post. But still, every time I feel I have to check because my brain tells me that these things are not things I’m good at, that I’m not a coherent writer, that I’m extremely negative and that I’ll say all sorts of things I’m not aware of or won’t make sense. This has never been the case but somehow that doesn’t change my viewpoint.

When I read back all of my previous anniversary posts, I expected the first few to be ropey and written in a completely different style from how I write now. It’s not something I’ve worked to improve upon, I just assumed that with practice and time and ageing that my style would have adapted or changed and possibly improved. As far as I could tell, it’s not changed one bit. I still punctuate in the same way, I still love sentences that are far too long and I still list almost everything in groups of three because it makes my brain happy to write like that. As for the content, again, I fully expected that to really change because I know my conditions have over time but again, it was surprisingly samey. Not in a boring way, but in a, this feels like it changes but sounds remarkably similar year on year sort of way. I’ve mentioned before that my anxiety attaches to different sources and these change a little over time so I can get more or less anxious about being observed doing things or my health at different points through my time of being ill. But the severity of the anxiety, the magnitude of it seems to stay quite constant and while it does improve and deteriorate, this is just the pattern it takes, like the changing of the tides really, there are high tides and low tides but one always follows the other and they don’t get more or less over time, they’re just high and low and high and low. The most common themes I noticed though are that despite it feeling like it changes, my confidence levels are mostly very low and my ability to sleep properly is almost always something I struggle with. I’ve used the phrase before that these things are sadly bad and worse and nothing outside that. It sounds super negative but there’s honestly no other way of describing it because I don’t ever seem to have periods of good sleep where I’m consistently sleeping 8 hours a night straight through and waking up in the morning not feeling like death, or periods where I suddenly feel confident or develop self-belief. I seem to wade through life constantly battling those things, always trying to sort out my sleep and always trying to force myself to do things that everyone tells me I’m capable of and that I’ve previously shown myself to be capable of and still permanently feeling like I’m not and that I’ll spectacularly fail. Those things are mostly a constant for me. I guess it’s why I find it hard to know what to write about because often, the only change is the passing of time or what’s happening in my personal life, my inner life doesn’t really change all that much and so I tend to run out of words or ideas for a new spin on the same very old idea that it’s absolutely no fun at all to be ill with anxiety disorders.

One thing I have noticed is that despite the past year being exceptionally challenging for me due to personal circumstances and events (more info on this can be found here), in some ways my anxiety has felt more stable at points too. It certainly hasn’t been stable at the points where my world was turned upside down with benefits decisions and diagnoses and deaths of family members, but the bits in between have seemed like they’ve been a bit more stable. I think this might be because expectations on me have been lower than ever before thanks to the pandemic. It’s no longer expected for me to go out, to socialise, to be able to go shopping or to parties. For months at a time, we’ve been required to stay indoors, stay solitary, and keep ourselves safe. In some ways this has given me the space to just be and to not be constantly reminded of all of the things I can’t do but I do wonder how this experience might change as the world opens up again and those things all become encouraged once more. I’m also fully aware that my view on all of this, as ever, is hugely skewed by how I’m feeling while I’m writing this because for the last couple of days my anxiety has levelled off after a week of it being off the scale and so the relief that brings is all-encompassing and often blinkers my view of how good or bad things have previously been. I’m not very good at gauging that kind of thing. Just like my writing and my videoing, if I’m feeling good right now then things have been pretty good and I forget the intensity of the badness that I’m not feeling currently but if things are bad then I often also forget the intensity of the good periods too. It’s part of why I always intended (though never achieved) to blog regularly because I very much write in the moment and once that moment passes, my thoughts and feelings and take on the world shifts a bit. It’s why I usually have to create content all in one go because if I lose my flow, if I go back to it on another day then I’m almost never in exactly the same headspace as before and I lose all of the potency of the point I was making because it’s no longer quite as relevant to me.

I’m not sure that any of this sums up where I’m at right now because to be honest, I’m not really sure that I know. My Grandad died 10 days ago and that’s been a lot to take in and get used to on top of the anniversary of the UK going into lockdown, the illness and death of my Mother-in-Law, so much political turmoil about so many different things and spending almost a year fighting to be awarded disability benefits. I’ve spent a lot of the last year feeling like I was drowning and gasping for air. I spent more time than I care to remember genuinely wishing I was dead for the first time in a long time because things had got so bleak. I tend to look at the past, inadvertently, with rose-tinted glasses. I know the facts of how suicidal I was at points but because I don’t feel like that right now, I don’t feel that it was that bad but at the time I do still remember having to get myself through the day in parts because I just wasn’t coping. I know I’ve suffered from increased isolation and loneliness but also increased connection and communication and that’s been quite confusing. This year has been the year I’ve been least productive out of all of the years I’ve been ill for and I’ve found that so hard. I hate just existing and not having anything to show for my time and feeling like I’m just wasting time, life, waiting and wishing away the days until I feel better. I tend to avoid writing about the future because I know all too well how little control I actually have over that and so often I think that a little plan or a little aim will so obviously be doable that I’ll set it in stone here but I now know that’s not how it works and life twists and turns and often your plans and aims don’t keep up with you. Of course, I wish that by year 8’s post I’ll be telling you that I’m recovered and all of the wonderful things that would come with that but the realist in me tells me that’s quite unlikely. I’m just hoping more positive things will have happened this coming year, that I’ll keep the connection and communication I’ve built with people around me, that there will be less illness and death to contend with and that I’ll find my passion for something again and be able to get my teeth into a project, it’s been such a long time since I did that and it really is time.

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

Let Down in Lockdown

Yesterday I got an unexpected phonecall. It was a private number. That always fills me with dread. What I really wasn’t expecting was that during a global pandemic, while my country is on lockdown, my mental health service would phone to discharge me. A lot of what ensued is a blur. I was on my back foot from the start and was just completely stunned that a stranger was calling me and trying to discharge me back to my GP. I’ve not been checked up on during this crisis so when this woman introduced herself and where she was calling from, I was immediately really pleased and impressed that they were phoning to see how I was. They weren’t. In fact, I don’t think I got asked any questions about how I am, how or if I’m coping or if I’m getting enough support. She went straight in for the kill and said they were planning on discharging me. I then spent nearly 20 minutes trying to find out why, what that would mean, how I can stay on their books, what criteria I have to meet, all the while trying not to burst into tears and have a panic attack.

More and more unexpected information came out during this phonecall including the fact that my psychiatrist retired in September or October which I’d not been told. I apparently should have been written to by him but even she couldn’t find a record of that letter on their system. He had, seemingly wrongly, promised to keep me on their books until I was well enough to attend treatment in the future. He’d apparently promised this to a lot of patients, all of whom I’m assuming are getting the same out-of-the-blue phonecall passing them back to their GP with no warning or support. It means that I’ll no longer be allowed to have visits from my support worker, the only professional involved directly in my care who actually sees me and knows what I’m going through and how damned hard I’ve worked despite the lack of visible progress or improvement and who continues to support and boost my confidence and self-esteem and treat me like a valuable human being. She has to work under a clinical lead and I’m not allowed one of those because I don’t fit the criteria and so she won’t be allowed to work with me either.

I know that mental health teams are increasingly underfunded. Before all of this, I worked in one. I know all too painfully the limitations of the services, the understaffing and the squeezing from all angles. I’ve tried to make myself as little of a burden as possible on the NHS and specifically on my local mental health team. I’ve not agreed to appointments unless I really believed I’d be well enough to attend. I stopped booking them when it was making me worse and I was becoming unreliable at attending because I didn’t want to waste appointments that could be given to other people. I didn’t agree to have therapy that I’ve previously had that I knew wouldn’t help me and that again, I wasn’t well enough to attend. All I asked was to see my support worker for an hour every couple of months and to be kept on their books, under a named psychiatrist, so that I didn’t have to wait weeks to be re-referred in the future by a GP surgery where I’ve met none of the doctors and the last doctor I was under kept me on a medication that my psychiatrist described as basically poisoning me with horrendous side effects.

Oddly, this phonecall came the day after I had a completely unexpected letter from the same team telling me that an appointment had been booked for me to have a telephone consultation with a new psychiatrist. I have no idea who booked this or why and the lady on the phone yesterday wasn’t aware until I highlighted it and she checked my records and even she didn’t actually know why it had been booked. I was already stressed and anxious because of this random appointment but it also really upset me and made me pretty angry because I begged to have telephone appointments 5 years ago so that I could still engage with support but not make myself really ill trying to go to appointments. I was always flat-out refused this and told that it was completely impossible. I know that we’re living through “unprecedented times” right now and that people are having to change and adapt their work in order to maintain services during this pandemic but I cannot for the life of me work out how it’s possible, doable, and acceptable to have telephone appointments with a psychiatrist now, when a few years ago it was completely impossible even though that meant that I had to stop having any support from a trained professional because I was too ill to do it in the way that they offered.

All I kept being told yesterday was that their service only offers time-limited, goal-specific help, none of which I’ve ever been well to engage with because the offerings are so limited and are all aimed at people who are much less ill than I am. All I’ve ever been offered (apart from medication which we’ve all agreed I can’t and shouldn’t take again) is 6 sessions of CBT and group art therapy run by a support worker, the same job role I had when I was working. Yesterday, I asked what people like me are meant to do, those of us who are too ill to engage with what they offer and she said there were community treatments, all of which she acknowledged required you to be well enough to physically attend. I’m severely agoraphobic. I can’t go out. So the upshot seemed to be that there’s nothing for me, no service, no treatment, no one to keep an eye on me or make sure I’m not spiralling. No one unrelated to me who I can talk to about how this is actually all making me feel or what it’s like to live like this which actually leaves me with no one to talk to about that because I just can’t bear putting that on people around me. My social network has reduced and reduced over the years of my illness and each time I’m struggling, there are fewer people to talk to and I feel further and further away from them and from normality. I’m good at getting through the day-to-day stuff, I’m great at ignoring my limitations and working within them to the point where I sometimes forget that I’m ill and often forget what I’m not capable of until I’m rudely reminded by circumstance and it all comes flooding back. I don’t have people to talk to about how frightened I am, about how much my belief and hope are fading as each month passes. It’s not because I don’t have people close to me, it’s because I can see how painful it is for them when I talk about these things and I know that what often keeps them going is my grit and determination and continuing belief that I’ll get better. I don’t have the heart to tell them that I don’t know if I believe that anymore and that although I mostly do think that I’ll be better, albeit not cured, one day, that image is increasingly vague and I’ve got no idea of how to get from here to there, what to do to make it happen or when it may occur. Never in my wildest dreams did I think I’d be 6 months from turning 30 and still severely agoraphobic and unemployed. I know I achieve a lot and this isn’t meant to be a pity-party but it’s very hard to keep yourself going, day after day, year after year, when you have to fight for even the basics of medical support and then have that randomly threatened with being removed.

The only reason I’m not now discharged is because of this mysterious appointment that’s been arranged for me. She eventually agreed that I could speak to the new psychiatrist and see what he says and that we’d “discuss it”. So now, I get to spend the next month, waiting and trying to work out how or even if I should try and persuade them to keep me on their books. Because even if I manage to stay this time, how long will it last? It will always be hanging over me. They offer me next to no support and no treatment anyway so in many ways I won’t be any worse off without them. But it feels like I’ll be even more alone, even more adrift and cut off from reality, normality, and help. It makes me sad and angry that people like me are just abandoned. That we’re so ill we can’t function and are essentially punished for that by having accessible treatment denied. So many people have the opposite problem of needing help but not being so ill that it’s deemed necessary and having to wait until they deteriorate before anyone will treat them. Increasingly it seems that there’s a right way of being mentally ill and more and more of us are failing to do it that way and then get denied treatment. I can’t make my illness fit in with the criteria they set, I can’t get myself well enough to attend the treatment that they say will get me better and so rather than bring any of it to me or even keep it paused until a miracle happens and I can get myself there, they decide that I look bad on their books and need to go. I wonder how many people out there exist as I do? I don’t think we’re even counted. They know how many people have a diagnosis, how many people went through therapy, how many people had a psychiatrist. But once I’m discharged, I won’t exist anywhere as a statistic. I won’t be counted as one of the people they failed, I won’t be listed somewhere as one of the people who was so severely ill that they couldn’t be treated. I’ll just disappear. Even statistics for houseboundness don’t seem to exist. I’ve looked and looked over the years and never found anything that even attempts to give numbers to how many people are physically or mentally ill enough that they’re confined to the house. I know there are many of us. The sheer number of people who, well-before lockdown or Coronavirus, were arriving at my blog because they wanted advice or help to cope with being housebound, is huge and I’m just one blogger with a small following and a pretty small reach. There must be thousands of us. But we’re all hidden away and mostly we’re forgotten about and just left. Lockdown has shown just how hard living your life indoors is to the masses. People are going stir crazy. They can’t work out how to entertain themselves, how to stop eating every 30 minutes, how to work, how to get medical help. This has been my life for 6 years and I’ll tell you for nothing, there’s never been a better time to be housebound because of the sheer number of free resources that have been released. So many things have adapted and been made accessible so that life can continue despite us all being indoors and still it’s unbearable for many people. Spare a thought for those of us for whom this is our life permanently, who don’t get to do PE with Joe or have church services via Zoom or watch Andrew Lloyd Webber musicals in our lounge the rest of the time. The majority of the time, these things are completely inaccessible to people like me and now even mental health treatment, in the midst of a pandemic, is being withdrawn because I don’t fit into the box neatly enough. As yet, I’m undecided about what to ask for in this appointment and whether I’ll put the energy into trying to fight or just give in this time because as seasoned readers of my blog will know, absolutely every step of the way, I’ve had to fight to get any treatment or support and I’m so unbelievably tired of doing that and being let down. I always thought that I’d get through this on my own, in my own time and I have no idea if that’s true but it looks like that’s the only option I’m left with and I’ll just have to hope that one day, the solution will reveal itself and I’ll somehow get from here to “better”.

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

For 6 years, I’ve been virtually housebound suffering from severe Agoraphobia, Generalised Anxiety Disorder and Social Anxiety. It means I’m in a fairly unique and experienced position to advise about the dos and don’ts of being indoors for a prolonged period of time. Below is a long list of suggestions that have helped me and that I hope will help you to cope and keep occupied.

Do remember that this will have an end point. Much as it’s not clear when that end point will be, there will indeed be one and it’s important to focus on that and not get too bogged down or pessimistic. For those who don’t know me, I’ll point out here that I’m not an optimist, nor am I a fan of most self-help stuff because I find it patronising and overly simplistic. I’m not involving myself in the medical side of things because there are plenty of articles already available on this and I’m not a medical expert, but I am an expert in how not to go stir-crazy when cooped up indoors for an indefinite period of time, for reasons beyond your control.

1. Create and Keep a Routine – Getting up and having a routine are absolutely key to keeping focused, motivated and having any sense of what time of day it is. You’d be amazed how quickly those things fade if you don’t stick to at least a few basic plans each day. The absolute musts are getting up, going to bed and eating at set times as those all help to regulate your body clock. Getting dressed and having activities planned for the day are also great for helping you be ready to tackle things and motivate you to get stuff done rather than lounging in front of the TV all day. Writing out a timetable can be really helpful, as well as a list of suggestions for activities and tasks to do if you get bored or can’t think of something to do at a specific time.

2. Limit Accessing of News Updates – It can be really tempting in times of crisis and uncertainty to want to be as informed as humanly possible, all the time. Stop. It’s SO bad for your mental health, won’t lead to you being more informed and is likely to just make you panic and feel sick. Choose your news sources wisely! Don’t take notice of the umpteen viral social media posts written by so-called experts that are constantly contradicting each other and spreading misinformation and worry. Pick one or even a few specific times a day where you will check on these reliable sources and then avoid the rest of the time. If you find this too much, then keep reducing down until you reach a happy medium of informed and calm-ish. If it’s all too much and you want to hunker down, then feel free to avoid all news and stay in your happy place. Do whatever it takes to stay sane and coping!

3. Be Prepared but Don’t Panic Buy! – We’re all well aware of how ludicrous the situation is in the shops right now (at least in the UK) and it’s important to be prepared and to have in the things you need for if lock-down happens or you have to self-isolate. Having enough food and supplies in is really useful but please, please don’t panic buy because it’s stopping everyone from being able to be prepared and causing widespread anxiety. If you’re able to get food in, then a great idea is to batch cook some meals to freeze so that if you become sick, you can eat nutritious food, won’t need to go shopping for a while and can just defrost and reheat instead of cooking when you really won’t feel like it. You do not need 1500 toilet rolls, they don’t taste nice or help your lungs! Make sure you eat healthily and regularly and stock up on some treats too – try to avoid eating all of them on the first day of quarantine!

4. Finances – Money is becoming a huge worry for many. Try to avoid burying your head in the sand and work out exactly where your family stand and look into what help is available to you. Making a spreadsheet of current expenditure and income can help you identify areas to cut back on, as well as showing you your budget. This puts you in the best position to act quickly and pre-emptively if things are going to worsen for you and could help you avert a crisis. The finance situation is different for everyone and changing daily so keep researching and applying for all of the support available to you and remember that even small changes can build up to make a big difference.

5. Social Contact – While we’re all having to avoid physical contact with people outside our household (and inside for those self-isolating), we don’t have to be isolated from all contact. Phone calls, emails, video calls and group chats are just some of the ways in which we can continue to socialise. Talk to people about how you and they are feeling, give each other tips of how to pass the time and talk about anything other than the virus when you can! Check in with others who you think might be struggling and rekindle friendships that fizzled out due to lack of time – there’s an abundance of that right now. Setting up cyber groups is another way of doing joint activities whilst being socially distant, things like film nights, book groups, cocktail evenings, lunch dates, debates and more can all be done via video chats or cyber groups to keep you involved and connected with each other, sharing activities and combatting boredom.

6. Plan for the Future – During scary times, it can feel all-consuming and never-ending but this will pass and there will be light at the end of the tunnel. In order to keep focused on that and to keep you getting through all of the difficulties and things you currently can’t do, rather than focusing on what you’re missing, put all of those things and the things you’re looking forward to doing once this is all over, into a list. Keep adding to it each time you think of something new and it’ll give you all sorts of ideas for how to fill your time once this period of isolation and restriction comes to an end. It’s highly likely to increase your enjoyment and gratitude for the ability to do those things once you’re finally able to again. I never get over the novelty of feeling the wind on my face having spent the majority of the last 6 years indoors.

7. Use this as an Opportunity – You’re likely to suddenly have a lot of time on your hands and while that might seem like a dream come true, the novelty quickly wears off. Rather than letting the boredom set in, use this as an opportunity to get tasks done that you’ve been putting off, to learn new things, to start something that you’ve always wanted to and even to re-evaluate your priorities and make changes to your life. It’s easy to get caught up in the day-to-day busyness of life and forget that we can change things we don’t like and put more time into the things we do and now is a perfect opportunity to start making that happen.

8. Look After your Mental Health – This is crucial! A lot of us who have mental illnesses, have strategies and coping mechanisms to keep our symptoms at bay and enforced time at home may be restricting your ability to do some of those things. Even those who don’t have mental illness may well have things they do that keep them calm, focused and able to cope well with daily life and being indoors for prolonged periods of time is likely to have quite a profound effect on your mental wellbeing. My key suggestions would be to talk to others and tell them how you’re feeling, share tips on coping and activities to pass the time and set goals together that you can help each other achieve. Being at home can be extremely lonely and isolating but you don’t have to be mentally alone, there are a lot of us out there all in this together so head to your contact list or social media to find others to connect with and you’ll realise you’re not alone in finding this hard and that might just make it a bit easier. If things get really bad then reach out for professional help, it’s still accessible especially over the phone and online, so don’t suffer in silence!

9. Help Others – If you’re feeling bored or have any skills, services or supplies that you could share with others in order to help them then do it! Helping others is a great pastime as well as building community spirit and connectedness. In times like these, even small gestures can make such a huge difference and they help us see the wider picture of us all being in this together. Obviously, maintain social distancing whilst doing this.

10. Be Creative – As you’re likely to soon find out, there truly are only so many hours of daytime TV and trips to the kitchen to check the fridge for snacks, that one can take before wanting to climb the walls. Therefore, creating, rather than consuming, is a great way of getting out of that cycle and making your day better. It doesn’t have to be drawing or painting, it can be literally anything from writing a poem to building a shed, taking photographs to making up a dance. Anything that involves you making something or changing it and using your hands and your brain to produce something, will do just fine and it’s great for giving you a sense of achievement too because you can see the result of your efforts at the end.

11. Keep Fit – You might have to get a bit inventive here and try not to annoy your neighbours (especially those of us in flats/apartments) but getting your heart rate up and your blood pumping is a sure-fire way to help clear your head and get rid of excess energy and anxiety. If you have home exercise equipment then use that, if you’ve got a garden then get out there and run, play with a ball or even skip. For those of us who only have indoor space we’re a little more limited but thanks to the wonders of the internet you can find free workouts, yoga and Pilates tutorials, dance classes and more. You could do strength training if you’ve got weights and if not, get out some of those stock-piled tins of beans and use them instead. If motivation is tricky, then get your friends involved and hold each other to account or even video chat whilst you all do the same workout and cheer each other on!

12. Avoid Substances and Bad Habits – It’s a really tough time for everyone and it can be all too tempting to look for ways of escaping difficult feelings but leaning on substances or bad habits will only harm you more in the long-run. Try to avoid alcohol, comfort eating and any other self-destructive behaviours and talk to others if you’re struggling to manage. Keeping busy is the key to getting through as unscathed as possible.

13. Free Activities and Resources – Companies and individuals are offering free services, resources and activities, with new ones popping up daily for kids and adults worldwide. There’s everything from fitness routines to tours of zoos and museums, education and language-learning resources for all ages and abilities, colouring pages, recipes, courses and qualifications and so much more. Now is the time to start looking into all of the things you always wanted to do and never quite made the time for, be it learning sign-language, pasta-making, or crochet, there are guides to almost everything, if you look.

14. Change your Environment – If your country allows and you feel it’s safe to do so, then go outside to an open area, staying 2 metres apart. If you’re lucky enough to have a garden or a balcony then use that regularly. If, like me, you don’t have outdoor space then you have to be more creative. Watching nature programmes and documentaries is a great way of seeing outdoors without actually being out there and opening windows as often as possible to get fresh air in is really beneficial. Even just changing rooms or sitting down the other end of the sofa is better than staying in the same spot for days on end. You could redecorate or rearrange some of your living space to freshen it up and make it feel different and new. Keeping your curtains and blinds open and making sure you get enough daylight will help your mood, sense of time and your sleep pattern and although you may not notice the benefits, you’ll certainly notice the deterioration in all of those things if you keep the light out. Another great way of getting the outdoors indoors is to grow something. It’s very therapeutic to have a plant to look after, it’s good for air quality, and it can even be useful if you grow something edible – my personal favourite is chilli plants which grow pretty quickly and easily and can then be added to my cooking or saved up and made into chilli jam.

15. Working From Home – For those of you who are unexpectedly working from home, try to keep a distance between work and home. If possible, keep your work to one area of your home, keep it to specific times and outside of those don’t be tempted to check emails or do extra unless you absolutely have to. Psychologically, it can be hard to keep a mental distance when there’s little to no physical distance but our brains are really good at picking up on cues so setting routines and times that are similar to your regular work schedule and even changing clothes, eyewear or hairstyle so that you have ‘work’ and ‘home’ versions could make the difference between feeling like your work is never finished and being able to fully enjoy your free time. It requires discipline and it’s not easy but having separation really helps you to focus on the task at hand and then let it go when the time for that is over.

16. Tune Out – Although most of the things I’ve suggested involve ‘doing’ stuff to keep your mind and body occupied, you sometimes need to just ‘be’ and that’s just as important. Write a list of things that help you relax, calm down, and zone out, and plan those in so that you’re not exhausted from too much ‘doing’. Anxiety, stress and worry are exhausting, trust me, I live this every day and it’s really tiring and you’re likely to get a lot less done than you’re planning or hoping. Try to be ok with that. Plan in regular time to just ‘be’ and you might find that the rest of your time is more productive because of the breaks you’ve taken. Similarly, if you’re religious, spiritual, or have regular practices like mindfulness, meditation, or relaxation, then ensure that you’re still building that into your life, even if it means using alternative methods to access it. You’ll need periods of escapism too and reading, audiobooks, gaming and passive TV can all provide this and give your brain a much-needed break.

These are frightening and uncertain times but hopefully by following some of my suggestions, you’ll keep as calm, occupied and content as possible, until freedom is restored.

For specific, anxiety-related tips on how to cope with being housebound, you can find my post written 14 months in here.

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.