Housebound

Update – MHBlog Awards, Therapy and Exhaustion (30/05/22) – Video Post

An update about the Mental Health Blog Awards which I’m in the nominations for (links below), how therapy is going and the exhaustion which mental illness brings.

Mental Health Blog Awards Voting link – https://s.surveyplanet.com/nr1nm3nv

Mental Health Blog Awards Nominees – https://www.mhblogawards.com/2022-nominees

Voting closes on the 6th of June 2022.

Update – Anxiety and Therapy (23/04/22) – Video Post

An update about how I’ve been for the last 6 months, my anxiety worsening and starting therapy recently.

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

Update – Mental Health Blog Awards, Anxiety and Physical Health (18/10/21) – Video Post

In July, I was lucky enough to win Vlogger of the Year in the Mental Health Blog Awards, here I talk about that, the worst period of anxiety I’ve possibly ever experienced and the physical health problems I’m currently trying to deal with.

A Bad Day With Anxiety (06/04/21) – Video Post

I posted this video on YouTube in April and forgot to post it here on my blog so better late than never, this shows a bad day for me with my anxiety during a very difficult time.

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 16th 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 16th 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 17th 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

Update – Relatives, Death, Lockdown and More (21/03/21) – Video Post

Finally an update explaining where I’ve been and why I’ve not been posting for such a long time.

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.

Update – September 2020

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

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

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

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

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

Written on August the 27th.