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.
Health Anxiety
Ten Years On – Ten Years of Trying to Make a Difference
10 years on. This is a post I never imagined I’d write. I hoped it wouldn’t be necessary. Or at the very least I hoped it would be a look back on a terrible period of my life from a brighter future, free from anxiety, the memories of it fading as each day passed. But that isn’t the case and so, as ever, I’m here to mark another year. It’s difficult to know what to say, where to begin. I feel like I’ve said everything already. I’ve whispered it, screamed it, ignored it, felt drowned by it, continued in spite of it all and I don’t really know what to say that I haven’t already. As usual, this is just a stream of my consciousness so I’m assuming this post won’t end abruptly at the end of this sentence and eventually I’ll spew out a long stream of far too many words about something, or nothing, or a rambling train of thought, or 15, will come tumbling out, but right now I’m at a loss.
Every previous year on this date I’ve been slightly comforted by the fact that it wasn’t a milestone year. That I still had time ahead of me to recover and have this post be the one that looks back with distance from a place of recovery or marked improvement. This milestone is certainly hitting me very hard. All those years ago I’d never even imagined that I could still be this unwell, still be this scared of everything and nothing. I find it harder and harder now to see a future free of this, a future that isn’t limited to travel within my county, eating safe foods, planning everything to the nth degree and a constant underlying feeling of dread quietly pervading everything. I wonder when a trip to the dentist won’t cause me sleepless nights and panic attacks for a week in advance, or unexpected phonecalls from strangers won’t render me nearly mute.
The thing I notice most now is exhaustion. An exhaustion that’s hard to describe or put into words because it’s so complete, so encompassing and yet so layered that no matter how much you think you’re at the very deepest depths of it, it still surprises you and finds a way to become deeper still. I’ve been saying for longer than I can remember about how tired I am of being anxious and the more time that passes, the worse this seems to get. My tolerance for it regularly drops off a cliff and I feel increasingly angry about the unfairness and relentlessness of it. I’m bored of it all. I also regularly feel incredibly stupid because it shocks me over and over again the intensity to which I feel anxious. It’s something I never get used to. That probably sounds like a really stupid thing to say – if something hurts it hurts, if it’s scary it’s scary, whether it’s the first time or the thousandth, but I think we all think we’ll get used to things, even really awful things, eventually. Again, it’s not something I can describe well in words because in some ways you do get used to it, I know a panic attack a mile off and they’re not scary now in the same ways as when I first started having them. I don’t tend to think I’m imminently going to die anymore. But these experiences bring new things with time, like lack of tolerance, anger, disappointment and the exhaustion I mentioned. I didn’t get those early on into the anxiety but now it’s almost every time. It’s like being on a really awful roller-coaster or hearing a song you hate, at first it’s a bit annoying, it might take you ages to realise it’s the song you don’t like but after a while even the first note sets you on edge and sometimes just hearing something similar will be enough to wind you up. That’s the way my anxiety is often like now, even feeling something near it like nerves, excitement or apprehension, is often enough to start to make me feel overwhelmed because I’m just so tired of fighting. I can’t explain to you the level of exhaustion you’re left with after 10 years of fighting your own brain that’s constantly telling you you’re under threat and in imminent mortal danger.
I’m not going to take this down the super depressing path of listing all of the things I’ve missed out on in 10 years, there have been weddings, funerals, parties, holidays, all been and gone. Thankfully I don’t particularly have regrets which is something I’m very grateful for. It’s hard to regret things you don’t have a choice about and none of these things have ever been a choice.
I’m not an optimist, but I’m not a pessimist either, my Grandma always said she was a realist and I try to be one too so the following is a list of things I’ve achieved since developing my anxiety disorders. These are not things I’ve done because of my anxiety, I’d give up most of them in a heartbeat if I never had to feel anxious again, but they’re things I’ve done to improve my life, help others, fill my time, bring meaning and purpose, or to generally try to avoid my brain just rotting into an anxious gloop. I learnt to crochet and set up a Facebook page selling it for over a year. I was a carer for my Grandad who had Alzheimer’s for 4 years. I scrimped and saved and researched and investigated how to buy a property whilst in a very challenging financial position that meant we were only offered 1 mortgage by 1 provider. I moved house despite being severely Agoraphobic. I decorated our flat almost singlehandedly while Joe had to train for a new job. I set up this blog over 9 years ago. I set up my colouring blog the following year and have reviewed over 300 colouring books from a mental health perspective and countless sets of pens and pencils. I created a YouTube channel to share reviews and personal vlogs. I’ve learnt to knit and made my first scarf and hat that don’t have holes in! I’ve taught myself to bake and decorate cakes. And I’ve spent 2 years doing freelance work with Samaritans where I’m building my confidence and self-belief and making a bigger difference than I can here in my corner of the internet.
While this sounds like an impressive list and it’s a good reminder for me of all that I’ve done, these things don’t negate or ease the difficulty of day-to-day living with anxiety as severe as mine and I’d give up nearly all of it if I didn’t have to be anxious again. 10 years on, I’m not where I expected or hoped to be, I don’t see an end or even a beginning to an end in sight but I’m still here, still carrying on, still bleating on to anyone who’ll listen about what it’s like to live like this, to try to make people understand. 10 years on, 10 years of trying to make a difference.
If you want to go back and read all of my previous anniversary posts, they can be found below:
One Year On – One Year of Fear
Two Years On – Two Years of Trying
3 Years On, 3 Years of Managing
Four Years On, Four Years of Frustration
Five Years On – Five Years Of…..
Seven Years On – Seven Years of Changing and Staying the Same
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.
Just
I was talking to a friend this week about chronic illness and a condition I’ve suffered from for over half my life and despite the fact that she’s known me for 13 years, I didn’t realise I’d not got across what it was like to live with this condition. So, in talking to her, I was trying to come up with tips for how the healthy can help and relate to those who are ill and one of the things I landed on was to stop using the word ‘just’. It’s such a little word and we all use it all the time, just one more biscuit, just one more episode, just a short nap, but as a chronically ill person, I’ve really noticed the insidious nature of this word and the meaning behind it and how often it’s used to minimise. It’s so easy to make suggestions to chronically ill people to just try something, after all, what have we got to lose? But in actuality, we often have a lot to lose and we’re regularly teetering dangerously close to lasting or permanent deterioration, which most outsiders will have no awareness of.
Chronic illness is a cruel and confusing beast. It’s different for everyone and changes over time, be that years, months, or even minutes. It’s often not visible or only noticeable to others if they really look, if they really know you and pay attention to the subtle changes. I can look at photos from my past and see from the colour of my skin how well or ill I was, but you’d never know from the smile plastered across my pasty face. Of course, there aren’t any photos of the bad days because I was indoors, curled up on the sofa or in bed, for weeks at a time, trying to save up enough energy to participate in the world again, only to be told I looked fine and couldn’t possibly have been that unwell, as soon as I reemerged. Each condition has similarities across sufferers but rarely will you find an account that exactly mirrors yours and so when you’re inevitably told, “Oh I know someone with that and they got better by doing….” when you disclose your diagnosis, you have to make a snap decision about whether to go into detail about your own situation and how it’s probably different from theirs and contrary to popular belief, you’ve probably tried more “treatments” and “cures” than they’re even aware of existing and still you’re here just doing your best to exist in the world without needing medical advice from well-meaning strangers. Or whether you just politely nod, whilst screaming inside, and wait for them to hopefully move on.
The thing people so often don’t realise is that they’re not the only one saying this, every chronically ill person I know is bombarded by relatives, friends, colleagues, acquaintances and strangers offering suggestions, questioning their efforts and wanting updates and it’s exhausting! Most of us are well aware of how to best manage our conditions or the things that help us feel better and whether we’re doing those or not, is an entirely personal matter but as soon as you’re disabled or chronically ill, people seem to think your medical history is fair game and up for discussion and that if you’re not actively working on improvement 100% of the time, then you’re clearly malingering and don’t want to recover. I don’t even know where to begin with describing how wrong this is. Firstly, it’s personal, private, and nobody else’s business. Secondly, it’s so utterly unrealistic! I can’t tell you how exhausting being chronically ill is, and that’s not just the fatigue caused by so many of these conditions, it’s all of the added extras they bring with them: the admin for taking medication, organising and attending appointments, chasing things up, planning your diary, planning things around your care/support team like me needing to organise appointments for when Joe’s off work but also trying to not wreck every day off. There’s also the very common experience that we have lower energy levels and activity saps far more energy for us than for healthy people and therefore our candle is burnt at both ends, by having less energy to begin with and tasks taking so much more effort than they should and having to factor in pacing, rest, and how on earth you can fit chores that have to be done into limited energy windows. Then there’s all of the reorganising that has to happen when you randomly get a flare or a crash. I’m trying to learn to not put off the washing up because I inevitably end up getting a migraine, tremors, or debilitating fatigue and not being able to do it and I can’t tell you how sick I am of running out of crockery when I need it most! On top of all of that, there’s the emotional side – the grief, the feelings of failure and guilt and resentment and anger and sadness and fear and so many, many things. I’ve been ill since I was 9. In many ways, I know no different, I certainly don’t remember much that’s different from this, but I still spend so much time comparing myself to others, wishing I could do what they do, be where they are, achieve what they can achieve. I know I’ve done astounding things for someone who’s been as unwell as I have, I know plenty of people would look at me and wish they had what I do and I am truly grateful for what I have and have managed and I’m forever grateful to not be sicker than I am, but there’s always that underlying anxiety and worry that it’ll get worse, that another piece of functioning will drop away, that the next infection or metaphorical roll of the dice will make things infinitely harder or worse and that feels impossible to manage.
It’s for all of those reasons and so many more that it’s so important to not add ‘justs’ to our burden because however much you see us doing, trying, achieving, or not, you won’t be aware of what’s going on for us beneath the surface and the toll it’s inevitably taking. You might think it’s a tiny thing you’re suggesting and to you it’s possible it would be, but each change to our routine, each new strain on our system, each thing that requires more concentration or brain power is another thing draining our resources and for many of us who are running a very limited system, as soon as you add something in, it takes the place of something else and that falls by the wayside. I have a finite capacity for energy use, I can add in yoga but it might mean I can’t wash up today, or I can have a therapy session but I can’t then read a book, every decision I make is weighed up and balanced against what I have to do versus what I want to do and knowing I’m never blessed with enough energy to do everything on my to-do or want-to-do lists. Everyone will have an opinion on what I should prioritise, what I simply must do and what I should never bother wasting energy on again but those will differ from person to person and none of those people are me. I had it drilled into me when I was a chronically ill child that I must do the important things like going to school and thankfully, I forget now who it was, but a professional of some kind, and possibly my mum, made it very clear that I absolutely had to be allowed to do things I enjoyed too. My school were trying to make me just do academic subjects but I needed to be allowed to have fun, to enjoy things and to be a normal child by doing subjects I loved or hobbies I was passionate about and so all the time I was capable, I was supported to continue with ballet lessons and study creative textiles because they were the things I enjoyed. This was often very loudly criticised by people around me and I felt a lot of confusion and guilt when engaging in things I enjoyed because there was always a long list of things I “should” have been doing that I could’ve been using my precious energy on instead. It means I still struggle with these feelings now. I gaslight myself relentlessly with criticism and comparison to others about why my flat isn’t pristine, why I’m not studying from home, why I’ve not been able to set up a successful business or keep my environment cleaner and tidier. On rational days, I know this is because I’m running on a broken battery, I’m trying to do 100% with a battery that at most charges to 50% so of course I can’t do what everyone else does and on top of that, each task that takes someone else’s battery down by 5% is actually taking mine down by 10-20%. I have to remind myself that it’s not because I’m lazy or that I don’t have willpower, it’s that I’m genuinely working with completely different conditions (literally and figuratively) and expecting myself to do what everyone else can when they’re not experiencing everything that I am, is completely unfair and unrealistic. One thing that’s helped with this which I’ll go into detail about in a future post is getting a smart watch that accurately tracks my heart rate, my sleep, my activity and other vitals and as a data fanatic, I can’t tell you how much it’s helped to see this data plotted on graphs showing exactly why I’m feeling so rubbish and declaring that it’s actually fair enough that I don’t do more and that actually I’m doing plenty when you look at what I’m working with. Like I say, that’s a story for another time but it’s certainly been eye-opening for me.
Something I find it very difficult to explain and remain impartial about is this really fun thing in society, at least Western society, I can’t speak for others, where we blame and ‘other’ people who are disabled or ill. I know exactly why we do this, it’s to protect ourselves and make the world feel safer because if you’re different from me and my difference is the reason I got sick or disabled then you don’t need to worry because you’re not like me and therefore won’t end up like I have. But the truth is, we’re all one unlucky roll of the dice away from sickness or disability, they’re not caused by failure, faults or personality types, in fact, the condition I first became chronically ill with, ME/CFS is actually known to affect high achievers and Type A personalities, far more than any other group, despite it being stigmatised as laziness and deconditioning. Most people will be horrified and state they don’t think like this but there are very few healthy people I’ve ever met who don’t have at least some of this attitude internalised. It’s completely natural. I’ll freely admit that had I not got ill so young and had my world view turned upside down and inside out for good measure, I’d have been loudly proclaiming that people just needed to buck their ideas up and have a positive mental attitude and that would sort them right out. How wrong that is! If people don’t want to face reality and realise that it’s just luck that means that I’m ill and they’re not (yet), then so be it but I would love for people to look inwards and dispute their thoughts and beliefs when it comes to dismissing or othering those around them because I’m not ill because of my personality or some kind of failure and it’s not my fault, I was just unlucky and I do the best with what I have, regardless of how it may look. That’s all I can do and that’s the most that should be expected of me and some days that’s too much, I can’t always do my best, sometimes half-assing it is as good as it gets and that needs to be acceptable too.
All this to say, in a long and rambling Lucy-style way, that despite knowing someone for over a decade, it can be very easy for them to not understand what your life is like and to really underestimate what you’re going through. It’s easy enough to do that to yourself, especially when you’ve been treated badly about your conditions and how you’re dealing with them and so it’s even easier for others to do the same. It’s also never too late for people to learn, to find something that gets through to them or reaches them in a different way and to try not to give up on those around you who don’t get it yet. For healthy people, it’s incredibly difficult for them to understand something that’s never happened to them, the idea that you get sick and then randomly don’t get better when they always have, is very alien and very scary and for those of us who’ve gone through that, it’s alien and scary to us too, but we know it happens because it’s happened to us and we have to adjust our reality to that new information and we quickly realise that doctors, science, the whole field of medicine and health are absolutely not what we think they are when we’re healthy. They’re not all-knowing, curing, caring beings who are fascinated by newness and inquisitive about fixing issues, we discover that diagnoses of elimination exist, that there are A LOT of things that medicine doesn’t know and worse still, a whole load of things they’re not even interested in investigating. We learn how to split up our conditions, to minimise or not state any mental illnesses we might have for fear of anxiety being blamed for any unexplained symptoms, and we learn to live with levels of suffering most people don’t even realise are survivable, let alone ignored and deemed tolerable by doctors who tell us we’re med-seeking, addicted, or have a personality disorder. My partner had a baptism of fire when beginning to attend appointments with me and I still remember the rage he used to leave the appointments with, often ones I came out of thrilled because I’d been listened to for once or got a referral to a specialist in months’ or years’ time. It’s a different world that we inhabit but until you cross over, either temporarily whilst accompanying us, or by becoming one of us, you don’t realise that this world exists, that it looks the same and sounds similar but is so completely different and scary and isolating and that no one is coming to save you, fix you, or make you better.
What we need most of all (apart from decent treatments and cures, those wouldn’t go amiss) is allies. We need people alongside us listening, understanding, accepting, trusting us, fighting for us and believing us. We need you to stick up for us, to fight our corner when we can’t, to accept our best, to believe what we tell you about what we can and can’t and are and aren’t doing, to meet us where we are not constantly push us forwards, to realise that whatever frustration or anger you’re feeling about this pales into insignificance in comparison to how we feel living it all day every day, we need you to understand and to realise when you don’t and to try to but don’t make us do all the legwork – watch programmes about the conditions, find online support groups or advocates, read research papers to find out what these conditions are like to live with and what your loved one is experiencing and remember that underneath it all, we’re still the same person but chronic illness and disability changes you, it can’t not, and that’s ok. It’s very hard to adapt to and accept these changes but there’s no way of remaining exactly as you were before you became chronically ill or disabled and other people need to adapt to this too. The biggest change you can make today though is to stop minimising and stop saying ‘just’ because all of those things being suggested to us are overwhelming and alienating and they can convince us that we’re disbelieved and that our best isn’t good enough and ultimately they can lead to us pushing ourselves so hard that we permanently deteriorate. ‘Just’ is the start of a slippery slope and while it’s often meant well, it’s usually unnecessary. We’ve got this, it ‘just’ might not look or feel like it!
Nine Years On – Nine Years of Setbacks and Hope
I can’t quite believe it’s been 9 years. I think that every year. The eight-year anniversary of becoming anxious feels like a lifetime ago despite the fact that I’m not sure it’s been a very eventful year for me. As ever, I’ve been meaning to blog or vlog for months but the words just haven’t come out. I don’t have the confidence to explain why, or the ins and outs now, I don’t know if or when I ever will but I was put off from this outlet by the very person who was meant to be helping me and it’s been very difficult and very painful trying to get beyond that, get beyond the feelings that brought up (I don’t even feel able to name those feelings here) and start rebuilding the confidence and trust in myself to go back to sharing my story. I’m scared of repercussions, of being misunderstood or misconstrued again, of being told off or accused of things I haven’t done. Ever since I began my blog, I set myself strict rules of how I’d conduct myself and how I’d tell my story, making sure that I never made anyone identifiable without their explicit permission. There are huge chunks of my history that I can’t talk about by following these rules because the people involved would be easily recognisable or identified and I don’t feel that’s fair on them and so I keep quiet. But for someone who feels most comfortable being as open and honest as possible, these reams of red tape that I insist on upholding often cause me to become tangled and tied up in knots and it becomes easier to say nothing at all. I have often worried that I would accidentally say the wrong thing, share too much, or make someone angry, but thankfully that has never happened until last year when my words were misconstrued and warped beyond recognition by someone I thought knew me better and it’s burned me so badly that even writing this I’m second, third, and fourth guessing every sentence I write and I feel sick the more I think about publishing it. I’ve had advice from my new therapist that I did nothing wrong, that this is clearly a helpful outlet for me and something I should aim to return to and despite getting that advice over six weeks ago, it’s taken me until now to heed it and even then it’s only because I didn’t want to miss writing this anniversary post. I hadn’t intended to start on such a serious and painful note but I didn’t know how to explain my silence and my lack of full explanation and it’s eating me up too much to say nothing at all. I hope that one day I’ll be able to have more confidence again and share what happened to me because it was wrong and it was really painful and only in sharing these things do we shine a light on them and help others recognise it happening to them too.
Last year, for a whole host of reasons, many of which I’m still not aware of, I got much worse and found even the most basic things became anxiety-inducing. I started therapy far too late and quickly became destabilised when memory after memory came flooding back to me with no coping skills to deal with them. I’ve never been so overwhelmed by so many different things. I had a really frustrating 9 months of getting worse and my physical health deteriorating for good measure and I felt completely broken and started to rapidly lose hope, something that actually very rarely happens to me. I felt panicked nearly all the time. I couldn’t catch my breath, or concentrate, or think in a straight line. I was completely defeated. To top it all off, I got covid in November just 10 days after a sinus infection that had caused me to feel acutely suicidal and then my laptop broke meaning I couldn’t have therapy and was even more shut off from the outside world. It was a really dark time. Thankfully, this break from therapy made me realise my therapist was not a good fit, I should’ve realised it much sooner and have been beating myself up about it ever since, but she put me in touch with someone who recommended a new therapist and I can’t even believe the difference. Don’t get excited, I’m not cured, or better, or anything, sadly I’ve not been matched with a miracle worker, but the difference in the process, in the way I’m understood, has been huge. I’ve got such a long way to go to reach some semblance of normality or “functioning” but right now I’ve got a bit of my hope back, I can see that a light at the end of the tunnel may exist and last year that didn’t seem possible. I can’t express how far away it feels like that light is, further away than it’s ever felt but the fact that I think it might be there is such a huge step forwards from the place I was in last year.
The thing I’m proudest of over the last year, other than keeping going when I really, really didn’t want to, is the lived experience work I started doing for a couple of national charities. I don’t know what I’m allowed to share and what I’m not so I won’t go into detail but I’ve been involved in various one-off focus groups, as well as two longer group projects, using lived experience of self-harm and suicide to help shape guidelines, online materials, and create content. It’s something I’m hugely passionate about and it’s so nice to be able to make a bigger difference than I can here in my little corner of the internet. It’s also been so good for my confidence! In the past I’ve often found groupwork very challenging and it’s something I’ve always chosen to avoid but this has really shown me what I’m capable of, it’s given me a voice and shown me that I can work with others and enjoy it, and every time I finish a group meeting, I’m absolutely buzzing! I’ve just been accepted onto another group project running for the next 6 months and a 3-year project where I’ll be using my lived experience, this time in a research capacity and I’m so excited to get started, albeit completely terrified too!
As ever, there are lots of challenges that crop up, none of which I seem to get through easily. We’ve had various issues with our flat caused by the previous owner being a huge bodger of jobs and we’ve had huge stress and expense trying to rectify these. The shower that had almost certainly being leaking since it was installed, turned out to have rotted our floorboards and leaked through our concrete floor to the downstairs neighbour. We’ve been cleaning and replacing parts of window frames and handles that were rusted so badly they wouldn’t move because he’d stuck, taped, and glued, fly netting over the open windows and left them open for, we assume, years in all weathers. We’d been gearing ourselves up for the last 3 years to get them fixed and spent 7 hours cleaning gunk off the frames and thanks to a catalogue of errors with the window company, ended up having 4 appointments booked and 3 visits from them to finally, just 2 days ago, get them fixed! Even that wasn’t without its issues as a chunk was knocked out of the bedroom wall and we’ve got burn marks on two floors. I don’t know how we’re this unlucky but I’m pretty sure I’m cursed! Our shower was meant to take 2 days after we discovered it was collapsing and it actually took 5 over the space of 8 days because problem after problem was uncovered. I was genuinely on the verge of a breakdown and I still hold my breath every time I walk near it or it makes any kind of noise. It was fixed 3 months ago.
All in all, I’m not in a good place but it’s definitely a better place to be than this time last year. My physical health is a little better, my head is a little clearer and my hope is tentatively returning and I’m glad that I’ve got little, manageable things ahead to look forward to and feel useful doing. Blogging has always been such a help to me, to make sense of things in my life, to get stuff out of my head and to try and make a difference and help others, and I hope that maybe writing this post and sharing it will help me to rebuild some of the confidence I lost in myself and help me to reclaim this little space of mine. Deep down, I know I did nothing wrong, it’s just taking a very long time to feel that and be able to move on and trust myself.
Nine years on, nine years of setbacks and hope.
If you want to go back and read all of my previous anniversary posts, they can be found below:
One Year On – One Year of Fear
Two Years On – Two Years of Trying
3 Years On, 3 Years of Managing
Four Years On, Four Years of Frustration
Five Years On – Five Years Of…..
Seven Years On – Seven Years of Changing and Staying the Same
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…..
Seven Years On – Seven Years of Changing and Staying the Same
Excluded for Being Mentally Ill
TW: Non-graphic mentions of Self-Harm and Suicidal Ideation.
The end of school isn’t a time I like to think about. I remember the good bits and have spent the last 14 years trying to ignore the rest but as is the way with these things, when you try to bury them, they often resurface when you least expect it. Today, I was reading this post by mental health charity, Mind, about the Hubs they want to have created to give young people a place to go to get quick and easy access to mental health support before they deteriorate on waiting lists. The descriptions they gave of children and how they’re being treated brought everything flooding back to me because despite so much progress apparently being made in society in the last 14 years, how schools, doctors surgeries and mental health services are treating young people hasn’t changed a bit. So I’m going to go back and explain what happened to me because it’s something I’ve never felt able to talk about on here, or really in real life either. I’ve told people bits and pieces or slipped sections into conversation but I’ve never really gone into detail because it was too painful and most of all, I was embarrassed and ashamed, something I should never have felt and something I hope to one day be able to move past.
I became ill with depression just before my 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.
Mental Health Awareness Week – Awareness is No Longer Enough
It’s Mental Health Awareness Week again and this year the tone appears to be changing. Not the tone of the government or most of the charities, but from campaigners and sufferers of mental illness there’s a distinct change occurring, a tiredness, a frustration and a building anger. This year’s theme is Nature which seems innocuous enough but honestly, who is it helping? For years, we’ve known that nature and being in green spaces helps improve mood etc etc. And yet, we are increasingly building on green spaces, packing people in like sardines so they’ve got no views, no parks, no wildlife around them and then during awareness weeks we tell them to go and seek out the nature that’s been so cruelly stripped away from their neighbourhood. How? Where? With what funds?
One of the biggest problems I have with this week is that it’s not designated to a proper cause. It’s called Mental Health Awareness Week but mostly it’s Mental Illness Awareness Week. Really, there need to be two. But much more than that, people need educating on the difference. We all have mental health, like we all have physical health, we all need to take care of our mental health just like we need to look after our bodies but mental illness is illness like any other. It’s when something’s gone wrong, off kilter, and we need access to diagnosis, treatment and support in order to regain wellness again. Nature is not a substitute for support, nor is it a treatment for mental illness. It’s a good tool to help keep mentally healthy and performing at your best but if you’re mentally ill, a walk or a roll around in some grass isn’t going to cut it where medication or therapy are needed.
Nature isn’t accessible to everyone. For so many reasons and in so many ways. Not just because it can be difficult to find when you live in particularly urban areas but also for those with limited time or resources and most notably for me, because I’m agoraphobic. My condition means that I don’t cope well with being outside so nature is pretty inaccessible to me. Lack of access to nature isn’t what’s keeping me ill, it’s not the cure for my conditions and yet all I’m really seeing on social media and the news this week is about how nature can help alleviate symptoms and while this is true in mild cases, it’s really not effective for those of us with severe symptoms. Most days I’m not well enough to even go out of my front door, let alone go into nature for a walk or a picnic. I live in a flat so I don’t have a garden I can go to. I’m very lucky to have a lovely view and can see a local park and the South Downs in the distance, I see squirrels and seagulls and foxes and people walking their dogs but it’s all through panes of glass. I’ve tried to follow tips and bring the outside inside and have an orchid and I’m growing some tomato and chilli plants. Surprisingly enough, despite all of this, my anxiety isn’t better and my agoraphobia still isn’t cured.
What I need is therapy. I don’t need awareness so much as I need access to support. I need to stop being threatened with discharge from my mental health team. I need support and treatment to exist in accessible ways that don’t require me to leave my home, the thing I need therapy in order to do! I need options that aren’t just CBT which I’ve exhausted over the years and which doesn’t work for people like me. I need waiting lists to be shorter. I need to not be waiting 3 years or more for an assessment that may still not lead to any new treatment options. I need doctors, MPs, and society as a whole to fight for funding so that instead of churning out the same “It’s OK Not To Be OK” and “Be Kind”, and “Reach Out For Help If You’re Struggling” slogans year on year, change actually occurs and people like me can finally access treatment and support without having to wait until these conditions possibly kill us. Fighting my own mental illness is hideously hard but fighting society at large as well is impossible. I’ve been blogging for 6.5 years and nothing has changed. Services in my area have been cut, doctors are retiring or leaving, appointments get shorter and spaced further apart and the threat of discharge gets bandied about more regularly. I’m still just as ill as when I first went to the doctors. I’ve still not received any therapy on the NHS. I can’t be medicated because all of the medications made me worse. I’ve just been left. The support I’m offered is an up to 30 minute call once every 6 months with my psychiatrist. He doesn’t know my Grandad who I was a carer for for 4 years has died, he doesn’t know that I’ve had physical health problems that have majorly affected my sleep for almost 3 months, he doesn’t know I’ve suffered from intermittent suicidal ideation, or that the waiting list for the assessment he’s sent me for has been extended by another year. Why? Because my next appointment isn’t until June and I last spoke to him before Christmas.
Nature’s great but it’s not a substitute for treatment. Awareness Weeks have had their day. What we really and truly need is Action Weeks. And then actual action. I no longer care about whether people accept that I have an anxiety disorder or realise that it’s not my fault or that I shouldn’t be ashamed of it. I know that awareness has its place for all of the people who are coming up behind me who are starting to suffer symptoms that they don’t understand or who are having experiences they’ve never had before. I know we need to make people aware but the whole point of awareness always used to be so that you sought help early enough because it’s been well-documented for a long time that the earlier you intervene in mental illness, the better the outcome and the less intervention is usually needed. But support is so sparse now that awareness is almost useless. It’s all well and good suspecting you have a mental illness and going to speak to your GP about it but then what? Almost all of the doors that used to open are firmly nailed shut thanks to funding cuts. We keep hearing about a pandemic of mental illness, but there’s no vaccine coming for this and social distancing will surely worsen the effects. Knowing what’s wrong with you is the first step but without a second you’re still stranded. Alone. Frightened. Unable to get better. And sorry to be a cynic, but walks or visiting gardens is going to be of little use to people suffering from psychosis or eating disorders or just about any mental illness that’s actually at a diagnosable level of severity.
I’ve been in two minds about whether to even post about this because I really don’t like posting negative or angry things, especially about public events or things that are aiming to help but this is falling so short. It’s like the Clap for Carers. It’s all well and good clapping but it’s not paying people’s bills, it’s not actually making a meaningful difference and it changes nothing in the grand scheme of things. Awareness weeks have had their day and could still be useful now if they were followed up with action but all the time we’re focusing on airy-fairy topics like nature and deeming that to improve everyone’s mental illnesses, we’re falling dangerously short and without radical change this pandemic is going to last a lot longer than the Covid-19 one will. We don’t need Awareness Weeks. We need action!
Seven Years On – Seven Years Of Changing and Staying the Same
It’s that time of year again where we hit the anniversary of me being signed off sick from work. I swear it comes around quicker every year. As ever, I don’t really know what to talk about but having noted this day in written-form for the last 6 years, it seems a shame to quit now so I’m probably going to do what I’ve done almost every previous year and ramble until I come to a close.
Yesterday, I thought I’d read through all of my previous posts written on this date each year to see how things have changed or stayed the same, to see how my writing style has evolved and to see if it would inspire a specific thing to write about. It was a strange experience. My sense of things is often at odds with how they actually are and this is most notable in my sense of my writing. Often, when I write a post, I think it’s truly dreadful and mostly a rambling mess. I take a big breath in and start reading through ready to attempt to heftily edit whatever meandering thought soup has been typed out. Almost every time, I’ll barely edit it at all because when I read it back, it actually says what I want to say in a surprisingly coherent, cohesive and interestingly written way. But it never feels like that when I’ve written it and I’ve never been able to work out why. It’s exactly the same with my vlogs. I suffer from dissociation symptoms and usually only get 2 lines into my vlogs which I start knowing a theme and a couple of examples and little to nothing else in terms of a plan, and then I dissociate and have little to no recollection of what I’ve said. It means I have to go back and watch every video before posting it to check I’ve not sworn or said anything I’m not allowed to and haven’t gone too personal or dark or overboard about whatever the topic is. As yet, there’s never been a video that I’ve had to edit, re-record or not post. But still, every time I feel I have to check because my brain tells me that these things are not things I’m good at, that I’m not a coherent writer, that I’m extremely negative and that I’ll say all sorts of things I’m not aware of or won’t make sense. This has never been the case but somehow that doesn’t change my viewpoint.
When I read back all of my previous anniversary posts, I expected the first few to be ropey and written in a completely different style from how I write now. It’s not something I’ve worked to improve upon, I just assumed that with practice and time and ageing that my style would have adapted or changed and possibly improved. As far as I could tell, it’s not changed one bit. I still punctuate in the same way, I still love sentences that are far too long and I still list almost everything in groups of three because it makes my brain happy to write like that. As for the content, again, I fully expected that to really change because I know my conditions have over time but again, it was surprisingly samey. Not in a boring way, but in a, this feels like it changes but sounds remarkably similar year on year sort of way. I’ve mentioned before that my anxiety attaches to different sources and these change a little over time so I can get more or less anxious about being observed doing things or my health at different points through my time of being ill. But the severity of the anxiety, the magnitude of it seems to stay quite constant and while it does improve and deteriorate, this is just the pattern it takes, like the changing of the tides really, there are high tides and low tides but one always follows the other and they don’t get more or less over time, they’re just high and low and high and low. The most common themes I noticed though are that despite it feeling like it changes, my confidence levels are mostly very low and my ability to sleep properly is almost always something I struggle with. I’ve used the phrase before that these things are sadly bad and worse and nothing outside that. It sounds super negative but there’s honestly no other way of describing it because I don’t ever seem to have periods of good sleep where I’m consistently sleeping 8 hours a night straight through and waking up in the morning not feeling like death, or periods where I suddenly feel confident or develop self-belief. I seem to wade through life constantly battling those things, always trying to sort out my sleep and always trying to force myself to do things that everyone tells me I’m capable of and that I’ve previously shown myself to be capable of and still permanently feeling like I’m not and that I’ll spectacularly fail. Those things are mostly a constant for me. I guess it’s why I find it hard to know what to write about because often, the only change is the passing of time or what’s happening in my personal life, my inner life doesn’t really change all that much and so I tend to run out of words or ideas for a new spin on the same very old idea that it’s absolutely no fun at all to be ill with anxiety disorders.
One thing I have noticed is that despite the past year being exceptionally challenging for me due to personal circumstances and events (more info on this can be found here), in some ways my anxiety has felt more stable at points too. It certainly hasn’t been stable at the points where my world was turned upside down with benefits decisions and diagnoses and deaths of family members, but the bits in between have seemed like they’ve been a bit more stable. I think this might be because expectations on me have been lower than ever before thanks to the pandemic. It’s no longer expected for me to go out, to socialise, to be able to go shopping or to parties. For months at a time, we’ve been required to stay indoors, stay solitary, and keep ourselves safe. In some ways this has given me the space to just be and to not be constantly reminded of all of the things I can’t do but I do wonder how this experience might change as the world opens up again and those things all become encouraged once more. I’m also fully aware that my view on all of this, as ever, is hugely skewed by how I’m feeling while I’m writing this because for the last couple of days my anxiety has levelled off after a week of it being off the scale and so the relief that brings is all-encompassing and often blinkers my view of how good or bad things have previously been. I’m not very good at gauging that kind of thing. Just like my writing and my videoing, if I’m feeling good right now then things have been pretty good and I forget the intensity of the badness that I’m not feeling currently but if things are bad then I often also forget the intensity of the good periods too. It’s part of why I always intended (though never achieved) to blog regularly because I very much write in the moment and once that moment passes, my thoughts and feelings and take on the world shifts a bit. It’s why I usually have to create content all in one go because if I lose my flow, if I go back to it on another day then I’m almost never in exactly the same headspace as before and I lose all of the potency of the point I was making because it’s no longer quite as relevant to me.
I’m not sure that any of this sums up where I’m at right now because to be honest, I’m not really sure that I know. My Grandad died 10 days ago and that’s been a lot to take in and get used to on top of the anniversary of the UK going into lockdown, the illness and death of my Mother-in-Law, so much political turmoil about so many different things and spending almost a year fighting to be awarded disability benefits. I’ve spent a lot of the last year feeling like I was drowning and gasping for air. I spent more time than I care to remember genuinely wishing I was dead for the first time in a long time because things had got so bleak. I tend to look at the past, inadvertently, with rose-tinted glasses. I know the facts of how suicidal I was at points but because I don’t feel like that right now, I don’t feel that it was that bad but at the time I do still remember having to get myself through the day in parts because I just wasn’t coping. I know I’ve suffered from increased isolation and loneliness but also increased connection and communication and that’s been quite confusing. This year has been the year I’ve been least productive out of all of the years I’ve been ill for and I’ve found that so hard. I hate just existing and not having anything to show for my time and feeling like I’m just wasting time, life, waiting and wishing away the days until I feel better. I tend to avoid writing about the future because I know all too well how little control I actually have over that and so often I think that a little plan or a little aim will so obviously be doable that I’ll set it in stone here but I now know that’s not how it works and life twists and turns and often your plans and aims don’t keep up with you. Of course, I wish that by year 8’s post I’ll be telling you that I’m recovered and all of the wonderful things that would come with that but the realist in me tells me that’s quite unlikely. I’m just hoping more positive things will have happened this coming year, that I’ll keep the connection and communication I’ve built with people around me, that there will be less illness and death to contend with and that I’ll find my passion for something again and be able to get my teeth into a project, it’s been such a long time since I did that and it really is time.
If you want to go back and read all of my previous anniversary posts, they can be found below:
One Year On – One Year of Fear
Two Years On – Two Years of Trying
3 Years On, 3 Years of Managing
Four Years On, Four Years of Frustration
In The Midst Of Madness 