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.
Therapy
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
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
Update – MHBlog Awards, Therapy and Exhaustion (30/05/22) – Video Post
An update about the Mental Health Blog Awards which I’m in the nominations for (links below), how therapy is going and the exhaustion which mental illness brings.
Mental Health Blog Awards Voting link – https://s.surveyplanet.com/nr1nm3nv
Mental Health Blog Awards Nominees – https://www.mhblogawards.com/2022-nominees
Voting closes on the 6th of June 2022.
Update – Anxiety and Therapy (23/04/22) – Video Post
An update about how I’ve been for the last 6 months, my anxiety worsening and starting therapy recently.
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.
Two Years On – Two Years of Trying
You all know by now that I’m one for anniversaries. It’s not deliberate, I just have a really good memory for dates, plus this one is etched onto my brain because I’ve had to fill out so many forms declaring how long I’ve been ill and off work for that I’m not sure this date will ever leave my head. March the 24th 2014, the day I stopped coping with life. Dramatic isn’t it?! But that’s pretty much what it is. I don’t want to focus on that today though. My way of dealing with things, my way of looking at this condition, at my life, at the challenges and adversity I face each day has really changed, I can’t pinpoint when, why, or even particularly how, but it has changed and I’m going to take this post in a different direction from the one I’d have expected last year. I re-read my post One Year On – One Year of Fear, a few days ago and it was fairly depressing. Not what I wrote, though it certainly wasn’t cheery content, but it was depressing to read how I was then and what I hoped would be the case for today, one more year on. It was disheartening to realise that I’m actually worse than I was then in many ways. I can do even less, I go out even less, my social circle is even less. I thought I’d have improved by now, I thought I’d be getting my life back on track and for a while I did make some small improvements, I was able to go out a lot more regularly, I was pushing myself so hard to do more and more things that scared me, it wasn’t difficult to find things, almost everything scares me. Then I deteriorated in October after being put under too much pressure and my condition decided to fight back hard and I was the most housebound I’ve been, completely unable to take the rubbish downstairs, fearing anyone buzzing our door, having panic attacks before phonecalls and only being able to visit my grandparents once a fortnight (a place I’ve known my whole life with people who were at my birth) and suffering severe anxiety ahead of time. I was utterly trapped, not only physically by my condition and within the walls of my flat, but now almost entirely mentally too because for months I’ve had nightmares that include anxiety, I worry about anything and everything and even get anxiety for no reason where I’ll just feel anxious and have anxious thoughts about nothing.
Despite all of that though, despite all of the trapped-ness, the pain, the worry, the wondering, I’ve been doing something that has challenged me, that has forced me to face my anxiety head on and that has scared, overwhelmed and taken over my life more than I thought it ever would. Blogging was never something I wanted to do, I never thought I had something to offer or even write about, for those of you that don’t know, the only reason I started was to satisfy some particularly persistent and vocal (in a good way) relatives and friends who weren’t taking no, or my lack of assurance in the idea as an answer. So I eventually gave in. I will never be able to thank them enough for pushing me in this direction. The course of my illness, the course of my recovery has changed all because of them believing in me and believing I had something to say. Blogging has been an absolute lifeline for me. I have very little going on in my life in the real world, I don’t have an awful lot to look forward to, my progress in terms of recovery is almost non-existent, but online all of these possibilities have opened up. I can help make a difference, I can have a voice, I have a cause, I can do what I was put on this earth to do and help people, all with the aid of my laptop and an internet connection. It’s given me a purpose, a reason to get up in the morning and probably best of all after the opportunity to help people, it’s given me more friends. I’ve met so many amazing people who follow my blog, who share their colouring with me, share their stories with me, who comment on posts when I’m feeling rough or post pictures to cheer me up, I have a whole community of people who want to help each other and it’s wonderful to be part of that. I’ve also made 3 amazing friends who I hope to be able to call friends for life now. Two of them are reviewers and though we’ve never met, we have so much in common and their support, conversation, humour and friendship have been absolute lifesavers through the countless times I’ve considered giving up blogging and throwing the towel in. They’re probably sick of me thanking them and it’s probably lost all meaning but I truly can’t thank them enough for everything they’ve done for me, they won’t even realise the extent they’ve helped but my family and friends do and we all thank you. I’ve also made friends with a fellow colourer who sends me a photo almost every day, we’ve never met but when I’m better we’re going to colour together, go button shopping and eat ice cream. Those sound like simple things but to me those things are the world because they’re currently so far out of my reach. Blogging has helped me connect with people who understand, who help pull me through and who give me things to look forward to in the future.
Two years on, two years of being predominantly indoors and I’m pretty used to it. It doesn’t upset me every day, I don’t pine for the life I had so much anymore because it now feels so far away, so distant, that I no longer remember what it felt like. I’m so used to being housebound, to being anxious and scared that I can no longer imagine living a ‘normal’ life because I have no idea how I did that in the first place. Despite living through it, I don’t know how I got from that functioning girl who was going to change the world, who grinned from ear to ear walking across the stage at her graduation, who worked in a high-stress job that most people wouldn’t even attempt doing, to this. This anxious creature whose first thought is to worry and wonder ‘what if?’, who fears almost everything and who can only just cope with everyday tasks and still can’t manage basic things like planning meals or working to a schedule.
Despite all of those things, all of those difficulties (most of which I’ve never even mentioned because I’m too embarrassed to admit them), I try to push through, to keep myself motivated, working towards something and being useful in some way. In the last year I’ve learnt so many things, talked to so many lovely people and realised just how widespread mental illness is. Despite having very little self-belief, I’m gradually starting to realise that I do have the ability to write and that this is something I can offer whilst I can do little else of use indoors. I’m starting to feel like I’m not wasting my time and I’m incredibly determined to have something to show for myself at the end of this period of extremely limited functioning, however long it may be. I will not become another unemployed statistic who can’t get a job because they were too ill to work for a time, I will not fit the hugely stigmatising stereotype people have of the mentally ill that we’re lazy and work-shy and don’t try hard enough to ‘snap ourselves out of it’, I try all day, every day and some days the amount of effort and determination it takes me to go for a walk or visit my family on rare occasions is the same amount of effort I have to muster to get myself out of bed and not just cry or contemplate suicide. None of this is easy. It doesn’t get easier over time. In some ways I’m used to this, I’ve adapted to it, but it’s still painful every day. Every day I have to fight with my own mind to not label myself as a failure, to not give up even though I’m running out of answers to the incessant question in my head “What’s the point?”. I make myself have a goal, I try to help people in whatever way I can and every time I get an email or a comment from someone saying they enjoyed my review, or the book they bought on my recommendation is their new favourite, I feel that little bit more hopeful and it becomes a little easier to get out of bed that day, to keep going, to keep doing, to keep living this groundhog day of repetitive worry and anxiety and lack of progress because if nothing else, at least I’ve made a difference in someone else’s life.
I’m not going to put myself through thinking about the year ahead, it’s too difficult to focus on the all-too-real prospect that I may get to year 3 and still be blogging about lack of progress. I’m also learning from my mistakes and I’m not going to put down hopes either, even small ones like I thought I’d done last year because even those I haven’t actually managed to achieve and that just sets me up for failure. I’ll leave you with my plan instead because I only make plans that I think I can realistically achieve. I plan to continue blogging, to continue trying to learn new skills so that I have a whole new section to add to my CV when I can eventually, hopefully, start applying for jobs again. My biggest plan is to continue trying to help people, to reach out to other people like me, who are struggling with their lot in life, and often with their very existence, and let them know that they’re not alone, that there are countless other people out there who are struggling too and that together we can help each other through until the days are a little brighter. I don’t know what the year ahead will involve, or what it will bring, the idea of another year, even another day of feeling like this scares me to the pit of my stomach, but one thing I can assure you of is that I will be trying. Trying all day, every day, striving forwards, pushing to succeed and taking each day, hour and even minute as it comes in order to get through to the next one in the best shape I can. Two Years On – Two Years of Trying.
If you’d like to keep up with my blog posts then click follow at the top or bottom of the page to receive an email each time I post. You can also follow this blog on Facebook here, or my Colouring blog on Facebook here. If you’d like to read more about how I got into blogging, what I’ve learned and how it’s helped me, you can read my post here. If you’d like to read more about my experience with mental health problems and my thoughts and feelings on the matter, all of my posts are arranged into date order here.
Relieved …. I Think!
Today I’m relieved … I think. To be honest, I’m actually numb, but I should be relieved and I think I will be when everything sinks in. I’m truly exhausted after under 6 hours’ sleep a night for the last week due to anxiety about today and only getting 3.5 hours last night and then being done in with drilling and hammering in our stairwell almost all day. To my friends and family who I haven’t told/reminded that I had a psychiatrist appointment today, I’m sorry, I only reminded my boyfriend, it’s nothing personal, I also didn’t phone any of you and I’m sorry about that too, I’m just burnt out and couldn’t deal with phoning anyone or answering questions, or anything really.
I didn’t attend my appointment today. I’ve been asking them since July to stop making me attend appointments that have been making me so unwell, I’ve written letters, had my Support Worker tell them, told them in appointments and until now, they’ve not got the message and keep telling me I have to attend one more to discuss it. I’m not allowed phone appointments, they don’t offer the treatment I’ve been requesting (previous posts explain this in detail but long story short I was lied to about it being offered, then categorically told it wasn’t, and then finally found out it is offered but not in our area and I can’t travel so it’s not currently suitable) which ironically I’m now way too ill to even contemplate, and the only treatment option they offered was going to groups, not group therapy, just groups of other mentally ill people talking about coping strategies we each have and doing arts and crafts – clearly ideal for a virtually housebound agoraphobic who suffers from panic, severe social anxiety and Generalised Anxiety Disorder. I digress…. essentially they’ve continually offered the same unsuitable treatment for 18 months that I cannot attend, I’ve been practically pleading with them to stop making me go to appointments and threatening me with discharge if I can’t attend 3 (I’ve now missed 4 and postponed 3 – I’ve always given as much notice as I can, I’ve never just not turned up) back to a GP who told me to “try harder” on the meds she incorrectly put me on.
Today was a meeting between my psychiatrist, my Support Worker and the therapist I’m yet to be assessed by because I was too ill to attend the appointment in December or January. I was invited too but since deteriorating in October, after the last appointment with them, I’ve only been able to go out on a handful of occasions to places that I’m very familiar with so there was no way I could attend. I was fully expecting to be discharged today after being told so many times that I would be but I finally got some good news. They’re actually doing what I’ve asked and allowing me to be in charge of the care I receive and they’re going to leave me alone until I’m well enough to engage with the services they can offer. I’m still waiting for confirmation of this by letter so I’m not getting my hopes up too high until I have it in writing and have all of the ins and outs explained but it looks like I’m going to still be part of their patient list and everything they’ve offered is on the table for me to reinitiate when I’m well enough and I can contact them to do this when I’m ready. This will hopefully mean no more dates, no more appointments, no more pressure or stress from them to be well enough to attend and then not believed about how ill I am, and I can finally get back to focusing on what I’ve been meant to be focusing on – getting better.
Dates are horrid for me (more on this later in the week) because I can’t forget them because I have such a good memory so even when appointment dates are two months in advance like this one was, I still worry about it and obsess over it for that whole period of time. I’m also asked each time how I’m doing since last time and have to try and keep a mental diary of what I can and can’t do, in comparison to various different dates and periods of time to be able to relay back at any given moment. This is soul-destroying for someone who’s so achievement focused. I try so hard every day to do something useful, to achieve something, to improve, to get better, and the constant reminder that I’m essentially failing has been one of the things that I feel has kept me worse and definitely the thing that triggered my deterioration almost 6 months ago. I’m not getting my hopes up that this decision will suddenly cause some miraculous spontaneous recovery, but I am hopeful that without time pressures from doctors who barely know me, and left to finally listen to my own body and mind and do what I think is right instead of constantly being told that’s wrong, will at least give me the best chance of getting better.
I can’t think of anything else to say, I hope I’ve explained everything clearly and updated all those of you who wanted to know what’s going on and especially those of you who I should have phoned – sorry for the lack of contact. I’m spending the rest of my evening colouring, watching easy tv and hoping to maybe actually sleep through the night tonight, I’m exhausted and desperately need some sleep soon because I’ve been a shaking, nervous-wreck this past week. I’m not relieved yet, but I will be, I hope!
In The Midst Of Madness 