Update – Health, Tests and Referrals (02/05/24) – Video Post

Hi lovelies, finally an update! It’s a bit all over the place because my memory isn’t great at the moment but this explains what I’ve been up to and how my health has been.

2023 – A Summary

As ever, people are sharing the accomplishments they’re proud of for the year and as ever, I tend to struggle because I haven’t done any of the typical stuff. However, I have done things and I don’t want to ignore them so here’s a short post about what I’ve done.

This year, I’ve spent lots of time supporting someone close to me who’s been going through a really difficult time. After struggling so much last year and fighting what felt like a losing battle with my anxiety, I’ve been able to regularly visit my Dad again and have visited my Nana 4 times too after 18 months of being unable to. I organised a party for my Dad and his sister at his house for our relatives, nearly all of whom I’ve not seen for over 10 years and it was a huge success and despite nearly throwing the cake layers in the bin after accidentally making them different sizes, I made the best cake for them that I’ve ever made (photos below).

I’ve spent a year showing up for therapy and giving it my all, despite it being really hard, despite it being painful, and despite all of my previous bad experiences. And I’m making small steps towards progress.

I’ve been outside more this year than probably the last 3 years combined and it meant that this year’s photo calendar that I made only included photos actually taken this year, unlike last year’s which included just 1 from that actual year because I’d been so unwell (photos below).

Despite it being one of my biggest anxieties, I’ve tried to tackle my health problems this year and probably the thing I’m proudest of is that I’m tackling my needle phobia. Ever since my first blood test when I was 9, I’ve been completely phobic of needles, can’t look at them, hear about them, have nightmares for days ahead of having tests and I’ve cried through every single blood test. In the space of 6 weeks this year, I had to have 3 blood tests and thanks to advocating for myself and making sure my needs were met, I’ve successfully had all 3 without shedding a single tear. That might sound pathetic but beginning to conquer that fear just before I turned 33 is something I’m so proud of because I actually never thought I would, such was the level of my phobia.

Finally, I’m proud of the lived experience work that I’ve been doing with Samaritans. It’s hard to find opportunities when you’re severely Agoraphobic and they’ve been absolutely brilliant at accommodating me and bringing the best out in me. I’ve worked on their Online Harms programme for nearly 2 years, I helped create practitioners guidelines and will soon be helping conduct research into the efficacy of this and I successfully applied to join their in-house research ethics board as a lived experience advisor as well, something I absolutely love as it combines my passion for mental health and suicide prevention with my academic interest in research. It’s been such a confidence boost being able to work with others on projects that will change and save lives.

Oh and I’m learning to knit. My Mum and Grandma tried to teach me when I was a child and I was absolutely awful at it. I could only make scarves and every single one of them had a hole in because I dropped stitches and didn’t know how to pick them back up. I’ve been desperate to knit for a few years because there are certain things that don’t really lend themselves to crochet and after finding an epic pattern for a knitted dinosaur skeleton jumper I realised I needed to learn to knit. It’s early days but I’m well on my way with this cableknit scarf (photos below). I’m hoping cableknit jumpers are in my future and I’m hoping to learn to make socks, hats and jumpers soon, just as soon as I’ve learnt to cast off, increase and decrease. I don’t do things by halves!

As many of you know by now, I don’t do New Year’s Resolutions or wishes or plans, so I’m going to keep doing the things I’m enjoying, keep seeking answers and solutions to my health problems, and keep spending time with the people who know me best and bring out the best in me. I’m lucky enough to have some very lovely cheerleaders around me who know when to boost me, who remind me that I’m enough, who remember all the things I’ve achieved and the skills I’ve amassed when I feel like a useless potato and possibly most importantly, who accept me for who I am, with all of my quirks, failings, deficiencies and all of the not enoughness and too muchness (often in the same 5 minutes) and love me anyway, despite all of those things and according to them, because of those things too. They’re the ones who keep me going, who believe in me when I don’t and who help me find a path when I can’t see one, they’re the ones most of my achievements this year are because of because without them I wouldn’t have had the confidence or courage to apply for positions, go outside, pick up knitting needles, rescue my cake, or start tackling my needle phobia so it’s thanks to them and the bravery they instil that I’ve been able to push myself and do things I’m proud of.

Wishing all of you a very happy new year with things to look forward to, things to be proud of and people to support you when you need it, we could all do with plenty of that!

Update – Why I’ve Been Unable to Post for 18 Months (05/12/23) – Video Post

For the last 18 months, I’ve not felt able to record or post vlogs because of something that happened last year. This video explains what happened and why I didn’t share about it. The vlog I mention in the video is linked in the description box.

World Mental Health Day 2023

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

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

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

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

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

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

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

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

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

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

World Mental Health Day 2017

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

Mental Health Awareness Week – Awareness is No Longer Enough 2021

Just

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mental Health Awareness Week – Awareness is No Longer Enough

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

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

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

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

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

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

Applying for Benefits – My Experience

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

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

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

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

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

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

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.