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.

Mental Health Awareness Week – Awareness is No Longer Enough

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

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

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

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

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

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

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

Day-to-Day Life With Anxiety

Today I thought I’d give you some specific insight into what it’s like to live with severe anxiety. I often talk in sweeping statements and generalisations and I think people don’t realise what the nitty-gritty, day-to-day life is like because it’s not always rolling from one panic attack to another, it’s much more subtle, specific and random than that. I’m currently going through yet another very bad period of anxiety. I’m never really sure when I’m not going through one of these and the only way of describing the last 6.5 years is bad and worse. I don’t often notice the times when it’s bad until it gets worse and then I can recognise that what preceded was indeed “just” bad but it’s not better and worse. Like pain if you’re still feeling it will always hurt, it’s more and less, but not better. So I’m anxious and more anxious through periods of weeks and months.

As I said, currently I’m going through a particularly anxious period but it doesn’t necessarily look like you’d expect. It does include the typical worrying for hours on end about everything my brain can possibly imagine. It also includes having panic attacks about justifiable things, as well as not. But the things that you’re probably not aware of are what I want to talk about here.

• It’s being tired all the time but so wired and highly strung that you can’t sleep.
• It’s being exhausted and unable to keep your eyes open during the day and then your mind racing at 100mph at night and almost being too frightened to go to bed because it’s so severe.
• It’s feeling sick and a feeling of dread in the pit of your stomach but with no reason or cause.
• It’s your brain constantly scanning for whatever the threat is and then it picking something at random and fixating on that until it scans again and finds something new.
• It’s not being able to remember things or take in new information.
• It’s reading the same paragraph over and over again and knowing you’ve read those words and willing yourself to concentrate and take it in this time and still having no idea what it says.
• It’s feeling full of completely useless energy and almost buzzing but your brain feeling like a frantic fly that just constantly throws itself at a pane of glass despite being next to an open window.
• It’s forgetting your medication, day after day, and never managing to put two and two together and realise that you’ve forgotten it and that’s why you’re feeling extra wired and your heart is beating out of your chest.
•  It’s being hungry and having so many choices for what to eat but spending hours not deciding because none of those things make sense in your head anymore.
• It’s not being able to multi-task and having to mute the TV or turn it off because it’s too distracting while you’re reading a text or realising that you’ve missed 10 minutes of your programme because you’ve gone temporarily deaf whilst scrolling through Facebook.
• It’s having so many hobbies or projects that you could continue or start and not being able to pick one.
• It’s watching stuff you don’t even like on TV rather than stuff you’d love on catch-up or DVD because you can’t commit or decide on those and spending hours watching mind-numbing stuff just because it’s on.
• It’s aimlessly walking from room to room in the hopes that inspiration will strike and it never doing so.
• It’s looking out the window and watching the world go by, everyone having a purpose and you just wasting day upon day like this.
• It’s flicking through recipe books desperately wanting to make something knowing full-well you can’t decide and aren’t capable of making anything much more complicated than toast.
• It’s having responsibilities or ambitions and watching them fade away.
• It’s having dreams and goals and watching them fade too.
• It’s going without meals or eating snacks instead because you just can’t decide what to make and you can’t work out how to do it anymore.
• It’s wishing that you could have certain meals and knowing that you can’t because there’s no one there to make it for you and you’re not able to do it yourself.
• It’s losing even the most basic routines that you’ve built up and forgetting to make enough drinks over the day.
• It’s running out of crockery because you didn’t time the washing-up well enough.
• It’s remembering and forgetting multiple times a day to do the same chore or send that email or message and realising at 11pm that yet again you’ve not done it.
• It’s writing lists of tasks to do in your diary each week and writing over 50% of that list again the following week and the week after because you’ve still not done the tasks.
• It’s forgetting to look at the lists and feeling like screaming because this is so basic and you still can’t do it.
• It’s checking and re-checking things because you can’t remember the answer and you stop trusting yourself.
• It’s your tinnitus ramping up to deafening volumes.
• It’s hearing your neighbours going about their daily lives through the walls and floors and feeling so alone and lonely.
• It’s wondering how you ever functioned normally and how you ever got a degree when you can’t make a roast dinner or read a book anymore.
• It’s not being able to write a shopping list.
• It’s feeling sick at the thought of a timetable because you know that’ll just increase your feelings of failure when you inevitably don’t stick to it.
• It’s wanting to scream and shout and cry and just sitting in numbness.
• It’s wishing that you’d die and then instantly panicking and taking it back because you feel selfish and unworthy and you don’t want to cause others pain but wishing that this pain that you’re living with would end.
• It’s wondering about suicide and realising that you don’t actually want to die you just don’t want to have to live like this anymore and you can’t see a way through or a way out.
• It’s wondering how you can possibly make someone understand what this is like and then worrying that you will because you know how much it’ll scare them.
• It’s being paralysed by fear.
• It’s being mentally stopped from even starting anything because you’re so worried about failing even though you know that not even attempting things is a type of failing.
• It’s wondering if this is it and if it’ll ever get better.
• It’s wondering what you did to deserve this.
• It’s wearing the same outfit days in a row because you don’t know how to choose a new one. It’s not being able to make decisions of any kind.
• It’s not being able to concentrate.
• It’s scrolling through Instagram and seeing so many craft projects that you’d love to try and never even trying to start one.
• It’s being unable to work and having no responsibilities and still feeling like you have no time to do anything and never really ever getting anything done.
• It’s wishing you could be someone else.
• It’s feeling guilty all the time.
• It’s feeling insignificant and over-noticeable all at once.
• It’s feeling like a burden and wishing you could disappear.
• It’s being desperate to make a difference, to help people and knowing that even with your limitations you could do it and never quite working out how or where to start.
• It’s promising yourself over and over again that you’ll change and do things differently and it never happening.

So there you have it, a snapshot into the day-to-day difficulties of life with an anxiety disorder. That list is why it’s so difficult to explain succinctly what it’s like to live with. I don’t have particularly specific sources of anxiety, there are groups of situations I experience huge anxiety about including anything social and anywhere that I could get trapped but those are so huge, wide-ranging and general that it’s hard to give an accurate or detailed picture of what life each day is like and why I’m so unable to do things like sort out my own meals on a regular basis or fill my day productively, the list above hopefully gives more insight into why those things and so much more are so difficult.

Dear Psychiatrist – July 2018

Earlier this year, I was sent a letter by my psychiatrist stating that it had been 2 years since our last contact and asking me to update him about how I’m doing and whether they can provide any help. I struggled with this. 2 years is a long time, especially when you hadn’t realised it had been that long and trying to put down in words how I’m doing, how I’ve changed in 24 months, has been really difficult and something that actually made me quite anxious. This might surprise many of you because I blog and vlog about it (albeit not very regularly) but those are done on my terms, they’re about topics that are important to me, at a time that suits me, when it feels right. And often, I take months or even years to hone posts and finally share them with the world. I had originally planned to write the letter the same week I had received his but somehow weeks went by and after writing two thirds of it I just drew a blank. Much as I’m always open and honest, I don’t think on a day-to-day basis about how I am. It’s a running joke with my Nana and close friends that I really have to think properly when they ask me how I am because I’m so used to either saying I’m fine or people not even asking. Seeing how I am in black and white, in polarised terms about improvement and deterioration isn’t easy and having to face the fact that I expected to be back at work and well by now, or at least well on my way there, has been really hard. I had no intention of showing this letter to anyone other than my psychiatrist, and Joe, who I got to proof read it and check it was accurate. It was Joe who suggested I should share it here. I’ve been quite reluctant and despite getting him to take it in to my psychiatrist a few days ago, I’ve just had the Word document sat open on my laptop, not quite ready to post and not quite ready to close it and file it away. It’s nearly 1am and for whatever reason, I’ve finally decided to bite the bullet, to listen and trust in Joe’s wisdom and share this here now. In some ways I think it makes me sound worse than I am but Joe thinks the opposite, that depending on what people focus on in my words, it may well give a less accurate picture and sound like I’m better than I am so hopefully you’ll read it just as it is, the good and the bad, without giving one more weight than the other. I often think that I’m so used to this now, so used to being ill, that I can no longer give an accurate picture, no longer compare to “normal”, or life before these conditions because the memory of that is so faded and distant. Hopefully it’ll give you a bit of a picture of how I am now though and another snapshot into my life.

 

Dear Psychiatrist,

Thank you for your recent letter. Sadly, there isn’t a lot to report in terms of progress or improvement. When I wrote to you 2 years ago, I fully expected to be well on my way to recovery by now but that hasn’t been the case. Having now been ill with these conditions for over 4 years, I’m starting to notice patterns of improvement and deterioration though I seem to have little to no control over these. Certain times of year are worse for me due to increased external demands and I struggle greatly when under pressure or when demands are placed on me. Having said that, I’m doing well at maintaining a mostly positive mood and keeping my depression at bay. I do my best to keep busy and keep my mind occupied with productive tasks so I get a sense of achievement and satisfaction. I do a lot of creative activities including baking, crochet and adult colouring. I am also doing what I can to help others suffering from mental illness and run two blogs and more recently a YouTube channel where I am constantly pushing my boundaries in order to create content to raise awareness, increase understanding and decrease stigma. I remain motivated and hopeful of recovery.

I am also a carer for my Grandad who has Alzheimer’s and go as regularly as I can to my grandparents’ house nearby to look after him. Despite them living in their house for my whole life and me visiting on a weekly basis, my anxiety about doing this has not lessened. For periods it seems to ease up and then comes back with a vengeance and I can identify no reasons for either the positive or negative changes. Currently, I’m feeling more capable and confident whilst at their house and am worrying for less time beforehand and it’s not as severe which is a welcome improvement. I don’t know why this has changed and sadly in the past this has always been temporary but I’m enjoying it while it lasts and trying to maintain and improve my abilities as much as possible whilst not getting my hopes up too high that this will last this time. My IBS has been exacerbated by the anxiety and fairly regularly leaves me unable to leave the flat even when I feel mentally capable of doing so. Last January, I bought a new camera and took up photography. This has been a great tool for helping me stay outside and remaining calm for longer because it provides a great focus and distraction and also requires concentration to get good shots. There are times when I can go out for hours taking photographs with Joe or my mum but it doesn’t get easier and has no consistency; almost every time feels like the first time when I’m trying to get out of my front door. I know the research says that practice makes perfect, that systematic desensitisation will work but that really isn’t my experience though I do still persevere and fight as hard as I can to do as much as possible as often as I can.

The focus of my anxiety seems to periodically shift with one aspect easing up while another gets worse so as soon as I seem to learn a strategy to reduce one lot of anxieties, another lot pops up. For the last year, I have struggled less with being outside in people-free areas thanks to doing photography but I’ve become increasingly anxious about health, getting ill and getting food poisoning. My eating habits have changed, I’m much more cautious about what I eat and have a huge fear of being around anyone exhibiting any symptoms of illness, even a cold. It’s exhausting trying to keep up with the constant changes and having to explain these to others while not even understanding them myself.

In terms of help, if there’s anything I can be offered either in my home or remotely then I’d really like to know. I stopped the therapy I was having via Skype over 18 months ago as it really wasn’t helping and I was making no progress so I’m now dealing with this pretty much alone apart from the support from a dwindling number of relatives and friends. I’m doing a very good job of getting through each day, albeit with a huge amount of difficulty and discomfort but I’m not improving, just changing and trying to adapt to each change. My Support Worker still visits occasionally and I really appreciate those visits and very much look forward to them, I really hope they can continue. Although I’m not improving, having a professional to talk to and check in with and also have a link back into psychiatric services when I’m well enough again to attend appointments is really important to me. If you have any suggestions of things I could be doing to help myself improve then I would appreciate them, I am nowhere near well enough to attend group therapy or any kind of appointments, as I mentioned before, I still struggle every time to visit my grandparents at set times and any kind of deadline or time pressure causes me overwhelming anxiety and increased IBS symptoms and attacks, but if there are any self-help tips or resources I should be made aware of then I would really like to know.

Just to make you aware, my GP has now left my surgery and I don’t know who I’m under the care of now, I’ve not met any of the doctors currently practising there. I do not want to be discharged back to their care and wish to remain under yours so that I don’t have to go through the lengthy waiting list process again when I’m eventually well enough to attend appointments and engage with services. I know you’ve not suggested discharging me, I just wanted to make it very clear that my wishes are to remain within your services.

Kind regards,

Lucy

Radio Interview about Anxiety with BBC Radio 5 Live

Today I was woken up by a phonecall that I very nearly didn’t answer because I assumed it was a spam call. Luckily, my curiosity got the better of me and I picked up and was asked if I’d like to interviewed as part of a discussion about anxiety on BBC Radio 5 Live. I always jump at the chance to talk about mental health and raise awareness of these conditions so I agreed and you can hear my interview below. It’s available for 29 days.

Skip to 07.33 for the start of the discussion and 15.01 for my part.

Do let me know what you think!

https://www.bbc.co.uk/programmes/b0b48l2m

Bravery, Pride and Cervical Smear Tests

Lovely readers, I’ll prewarn you now that this post will probably be full of all sorts of things where you think “too much information”, feel free to close and move on and wait for my next post which will probably be less “share-y”. You have been warned!

As many of you know, I’ve been really struggling this year with low confidence and very bad health anxiety that has been increasing week on week. Last week it got so bad and I was getting so many worrying symptoms that I finally looked into getting a smear test done at home as I’m 2 years overdue and have never had one before. A few people thought I’d definitely be able to have it done at home so I thought I’d find out and go from there. I sent Joe off to our doctor’s surgery because I was too scared to phone and ask and probably be told no. I had to wait until today to be contacted and as I expected, they don’t offer smear tests at home. At some point in the future I will write a post about all of the ways in which being housebound/agoraphobic has hindered me, from the mundane things like clothes shopping and getting haircuts to the serious stuff like not getting medical investigations or having dental appointments for 4 years, the list is long and probably surprising to those of you who’ve not experienced these conditions. I had luckily already prepared myself for being told today that I wouldn’t be allowed to have my test at home which would have been extremely difficult for me to cope with anyway but going to the doctors is significantly worse for me. My mum had very kindly offered to come over from the Isle of Wight, a 6 hour round trip, to go with me if I needed her to (I’m sure she must be very glad that I haven’t taken her up on this). I asked the receptionist what other options I had and if there were any quiet periods at the surgery as sitting in a waiting room full of sick people is extremely difficult for me (it’s actually my idea of hell but I didn’t want to sound dramatic on the phone). She wasn’t hugely helpful or understanding; this is probably the same receptionist who gave me completely incorrect information when I finally (after 10 months of psyching myself up) requested a telephone consultation to have my beta-blocker medication dose increased and refused to give me a telephone appointment, informing me those appointments don’t exist anymore. This caused me a huge amount of stress and panic and when I asked what a person with severe anxiety who’s virtually housebound is meant to do, she just reiterated the (incorrect) rules. I was lucky enough to speak to a different receptionist the next day who was absolutely lovely and so sympathetic and understanding and told me that I’d been told the wrong thing about the rules and had worried for 24 hours and barely slept or ate in that time for no reason and that telephone appointments do still exist and my medication increase had been approved. Anyway, the not so nice receptionist gave me a couple of different clinic options, all of which were getting further away from my flat (we don’t drive and my surgery is around the corner), I asked if there were any quiet periods at the surgery and she said no, it’s never quiet – this woman could really do with some teaching about sympathy and bending the truth a little rather than just scaring me silly when I’ve already said that I’m severely agoraphobic and socially anxious. She then mentioned that a cancellation had been made today with their senior nurse and I could be seen at 12.20 with enough time for the appointment to be over and done with before Joe had to go to work. I reluctantly agreed and decided that being anxious about it for the next 3.5 hours was preferable to booking on another day and worrying for significantly longer.

I took my beta-blockers to slow my heart rate down and took some diazepam, reserved for emergency needs like this (I’ve been given a very limited supply that is closely monitored by my doctors so that I don’t end up relying on it or addicted to it). I’m never sure how well the diazepam will work. I almost never take it and so I forget its effects and they seem to come and go in waves and it’s relatively easy for my brain to fight off the effects if I allow it so I do have to kind of give in and relinquish control to the drug and let it work; I did that today and thankfully it worked. On the walk to the doctors I could feel my brain wanting to be anxious, wondering why I was fine when I was in one of my most feared situations but the medication blanketed over that nicely and while I didn’t feel great, I kind of didn’t care about anything and didn’t feel worried. Joe had agreed to come in with me but luckily, while I was waiting I realised I didn’t really need him in there and I’d like to retain some mystery in our relationship for as long as possible that doesn’t involve watching nurses shining a torch on my lady bits, putting things up there and then taking samples out of it. I was seen late but I managed to go in on my own and the nurse was just lovely! She hadn’t been told anything about me which was a bit of a shock but she saw instantly how nervous I was and knew from my notes it was my first test and when I explained about the agoraphobia and why I was 2 years late for the test and about the medication she seemed genuinely impressed that I was even there and just got what a big deal it was for me. This is in stark contrast to much of my previous experience and treatment where I’m often dismissed, disbelieved and treated with aggression for “behaving like a child” and “making a fuss”. I ended up crying, I think with relief, and also because the meds make my brain loopy. She told me everything she’d be doing, explained what all of the different types of results and consequences could be and then chatted to me while I got my kit off and she got the test stuff ready. I really can’t praise her enough. I hate not knowing what’s going on and I’m terrified of pain and it didn’t hurt at all, it wasn’t comfortable but having people sticking things up your lady bits when you’re not in the throes of passion never is but the test itself I barely felt and whenever my breathing was getting fast she got me to slow down and before I knew it it was done! I thanked her multiple times and I hope she knew just how much her treatment of me helped because it honestly couldn’t have gone better, thank goodness for wonder drugs and wonder nurses! She also assured me that unless she wins the lottery, she won’t be leaving anytime soon and so she’ll be around to do my future tests and I’m allowed to request her so that was a huge help. I even got a sticker as I mentioned that that should be a thing given that having a smear test is way more impressive than cleaning your teeth. I think smear stickers should be a thing – “I only cried once on the nurse”, “I looked after my cervix today”, that kind of thing! Mine had a snowflake on which was apt given that it was lightly snowing here today!

So, now I have the two week wait until my results come through. I’m not feeling calm but I am at least calmer than I was. I’m very worried about what to do if the results come back as anything other than my cervix is beautiful and healthy but I’m trying to just deal with that when it comes. Today at least, I’m very focused on how brave I’ve been and how proud I am that I managed to face my fears of doctors, invasive tests, showing people my lady bits, and sitting in a waiting room with sick people. None of those fears will go away, as you know, that’s not how my condition works but at least I fought through them today to get a test done that I needed to have. The nurse even said that I should be really proud of myself and that I’d done brilliantly so that was really nice, I definitely earnt my sticker. For anyone worrying about having their smear test, please try not to, it doesn’t hurt and it’s not even that uncomfortable, at least it wasn’t for me. I have an extremely low pain threshold and often get criticised for fussing too much and making a big deal out of things when they’re painful for me rather than uncomfortable but this honestly wasn’t painful and the nurse was so understanding and going at lunchtime was great because there were hardly any people there in the waiting room. Oh, and diazepam! I wouldn’t have got past my front door without that today and my lovely boyfriend. Get it booked ladies, if I can do it then anyone without a severe anxiety disorder can. Yes, it’s scary but it’s important and you might even get a sticker if you mention it while you’re there!

Before I disappear, I just want to say a huge thanks to my best friend Katie, my superstar online friend Claire and my mum, without whom I’d not have been brave enough to go for this test today. Huge apologies to them too for way oversharing and probably boring them senseless with my ridiculous worries and fears and obsessive thoughts but thanks to all of you, and my lovely boyfriend Joe who went with me to the doctors today, I was able to get tested and hopefully I’m now one step closer to being told I’m fine and that my brain is a massive overthinking hypochondriacal mess (I hope their letters don’t comment on your brain state but you know!).

Health Anxiety

Health Anxiety – it’s something I mentioned in my last post and boy is it making life almost impossible to live right now. It’s just relentless. And the worst thing? When you’re this anxious for this long, you start getting even more physical symptoms. And what does my brain do with those? Decides I must be ill, poisoned, or dying of something. I literally have no idea what symptoms I’m experiencing are even real now and which ones are either being created by my psyche, my stress response (those ones are real) and which I’m just imagining due to being so sensitive to every single movement, noise or feeling in my body. I can’t even express how all-consuming this is. It’s like nothing else I’ve ever experienced and it’s terrifying.

Every single sensation is now worrying me, am I hungry or is it a stomach tumour? Is my appetite lower than usual? Does that mean I’ve got cancer or is it just that I’m so stressed my appetite has been suppressed? Why can’t I go to the toilet? Am I under-nourished? Sick? Or has my digestion shut down because of my stress response. My heart rate seems a bit high even though I’ve taken my beta-blockers, maybe they’re not working anymore, maybe something else is wrong. Have I eaten the wrong stuff? Is sugar causing it? When did I last eat sugar? It can’t be sugar, I’ve not had any today, maybe it’s adrenaline as I’ve not actually eaten anything yet. My downstairs bits feel funny. I don’t remember that happening before. I don’t remember being able to feel there before. Maybe it’s just a random twinge. Why am I getting repeating random twinges there? Maybe it’s cancer? Would I even know? What if it is? How will I get treatment? I’ve still not had my smear test that was due two years ago because I can’t face going to the doctors, my anxiety just won’t let me. I know I need to go, I know that finding there are changes is so much better than leaving it and them possibly developing into cancer and yet the thought of even trying to make the appointment makes me feel physically sick and my stomach ties itself in knots. I just can’t do it at the moment. I get a pain in my mouth and I’m convinced it must be an abscess, a rotten tooth or that I’ll need a filling. I religiously brush my teeth and realise I’m probably brushing them too hard and causing the pain because I’m so worried about needing dental work. My ears feel weird or I get a slight pain and I’m sure I must be getting an ear infection again. I sneeze or have a slight sore throat and I’m instantly sure I’m getting a cold or flu and that I’ll get really ill with it. Any sort of pain or weird sensation is instantly focussed on, fixated upon and blown out of all proportion. No matter how logical I try to be, no matter how many statistics I bombard myself with to try and make myself see sense, it just doesn’t work. Even when the sensations or symptoms go away, my brain just fixates on the next one. It’s so consuming that I can’t do many activities now because I just can’t focus on them, I’m too busy being convinced that I’m going to get really ill or die. I’m not even scared of dying, if I drop dead tomorrow, I’m kind of ok with that, but I’m absolutely scared senseless of suffering. I’ve felt this way for as long as I can remember. I’ve had a lot of health problems for the latter two thirds of my life, none of them have been serious or life-threatening, but all have involved a lot of aches and pains and never feeling “well”. These conditions have also meant that when I get regular viruses or infections I’m hit much harder by them and get more severely ill and suffer for longer than regular people do. For some reason, I’ve managed to develop a huge fear of suffering that has been increasing for years and made me very frightened to be around other people who are ill firstly because I hate seeing suffering and secondly because of the risk of being infected by them. The only type of illness and suffering I don’t have an issue being around is mental illness which is why I managed to work successfully in mental health and in a hospital no less.

Back to now though. This health anxiety is just crippling. I can’t face going to the doctors to have any of my fears allayed and I often wonder if that would even help because I swear that at the first sign of a new symptom I’d be back at square one again. I’m also so scared that they’d find something that I then have no idea how to cope with treatment for, it hardly even seems worth getting investigated if I then can’t get treated for whatever hideous thing it might be. And I realise just how unlikely it is that there’s anything wrong with me, but still, the worries are constantly there. Today I found out that the most common cancer in women under the age of 33 is cervical. Oh joy! I also know from research that almost all of the female cancers, at least those affecting the lower half of the body, have very few noticeable symptoms and that those I may experience are remarkably similar to IBS symptoms which I also suffer badly from, especially when my anxiety is this bad. I can’t tell you how useful that is when trying to talk yourself down from being convinced you’ve got every disease under the sun. I’m sure that half of the symptoms I’m now experiencing are because I’m focusing so much on my body that I’m getting phantom symptoms from sending too much of my attention to those areas. It’s just doing me in. I’m sick of feeling so on edge, sick of feeling so out of control, sick of feeling like I’m going mad and sick of being convinced that I’m going to die some horrible, slow, painful death. I just want my brain to calm down, chill out and focus on something a bit less morbid than my own death or illness.

Anyone who thinks anxiety is a walk in the park clearly hasn’t visited this particular park which is currently frequented by wolves, big cats, and a whole heap of horrid diseases trying to kill me off at every turn. I have such a strong urge to give up, to stop even trying and to just give in. I don’t even know why I feel like that, I know it wouldn’t help. But I’m so tired. So tired of the thoughts, the constant stream of worries and then symptoms and the desire to research it but knowing that’ll almost certainly make me feel worse. I’m tired of fighting, of dreaming about it, of never being free. I’m tired of all of it. It’s been almost 4 years of fighting with my own head, fighting against each and every new worry that comes up, trying to adapt to every change, to every loss. Having health anxiety and worrying that I might lose even more functioning on top of all of that is nigh on impossible to cope with and means that I spend a lot of each day on the verge of crying because I feel like I’m falling apart. Part of me knows that this will probably pass, or at least ease off, just like a lot of the worries I’ve had throughout this period of illness. But I also know that the anxiety is becoming more and more ingrained and it feels like it’s taking a bigger hold with each passing month. It scares me so much. I don’t want this to become who I am. I have always been determined to be separate from my illnesses, to have them but not to be them. I’m not sure how much longer I’ll be able to say that of the anxiety. It feels so intrinsically linked to who I am now. Most of the time I can differentiate between thoughts from the condition and thoughts of my own but when the thoughts from my condition are so overwhelmingly frequent, so loud and so awful, it’s hard to know where my own thoughts begin because there seem to be so few of them now, there simply isn’t room for anything much other than health anxiety and the occasional worry about going outside.

After my last post I’d hoped to be back to reviewing quite soon. I hoped that expressing how I’d been feeling would help it lessen and in some ways it has, I definitely feel less alone but sadly my health anxiety has just ramped up and up, day after day. My mum came to visit for the weekend and we had a lovely time and I managed to go out with her on two days and take lots of photographs and do lots of walking outside seeing loads of nature and very few people (my idea of perfect!). But still, even while I was out, I was getting twinges, random stabbing pains, wondering if I’d need mum to take me to the hospital. I’m at the point where I’m so frightened that I’m asking people random, really personal questions to find out if what I’m experiencing is normal or likely to be the cause of my premature death. I hate what this is turning me into. My social phobia is ramping up because I know I’m becoming obsessive about this and I’m terrified I’ll bore people or alienate myself from the few people remaining in my life. But I know that I can’t keep this inside as it feels like it’s eating me alive.

I’m not really sure where this post has gone or where it’s ended up. As usual, it feels like a rambling mess and I’m hoping I’ve pulled it miraculously out of the bag and written something at least partially coherent. I’m guessing it’s a heap of negativity and for that I’m sorry but I also can’t even begin to sugarcoat this and I always promised I would never do that, that I’d tell my story, tell the story of so many of us with mental illness, warts and all, with all the worst bits left in. So if this has left you feeling bleak or despondent then I guess that gives you a snapshot into what it’s like to be inside my head, to live a few minutes in my life and I can assure you that it’s infinitely worse when there’s no cause, no end in sight and no tab to close. I hope that sooner than I think, I’ll be feeling a bit brighter, a bit more hopeful and a little less plagued and that I’ll be back with some more positive posts that at least end on a lighter note. I’ll try to edit my photos from the weekend down enough that I won’t bore you all to tears with shot after shot of the same deer or ducks, that’s about the only task I’m managing to do whilst this poorly and I’m still sticking to my showering every day routine. Everything else is pretty much out of reach but I’ll try to get back on with my small tasks project and see if I can achieve a little more than showering and deleting photos. Writing this has been a bit helpful and some of the physical symptoms have eased off a bit which will hopefully sink in to my anxious brain as proof that they’re stress-induced. Huge hugs to all of you who are feeling this way or even just a little bit this way, you’re all warriors to fight this fight every day and I hope it gets easier for us all soon, we damn well deserve it!