Let Down in Lockdown

Yesterday I got an unexpected phonecall. It was a private number. That always fills me with dread. What I really wasn’t expecting was that during a global pandemic, while my country is on lockdown, my mental health service would phone to discharge me. A lot of what ensued is a blur. I was on my back foot from the start and was just completely stunned that a stranger was calling me and trying to discharge me back to my GP. I’ve not been checked up on during this crisis so when this woman introduced herself and where she was calling from, I was immediately really pleased and impressed that they were phoning to see how I was. They weren’t. In fact, I don’t think I got asked any questions about how I am, how or if I’m coping or if I’m getting enough support. She went straight in for the kill and said they were planning on discharging me. I then spent nearly 20 minutes trying to find out why, what that would mean, how I can stay on their books, what criteria I have to meet, all the while trying not to burst into tears and have a panic attack.

More and more unexpected information came out during this phonecall including the fact that my psychiatrist retired in September or October which I’d not been told. I apparently should have been written to by him but even she couldn’t find a record of that letter on their system. He had, seemingly wrongly, promised to keep me on their books until I was well enough to attend treatment in the future. He’d apparently promised this to a lot of patients, all of whom I’m assuming are getting the same out-of-the-blue phonecall passing them back to their GP with no warning or support. It means that I’ll no longer be allowed to have visits from my support worker, the only professional involved directly in my care who actually sees me and knows what I’m going through and how damned hard I’ve worked despite the lack of visible progress or improvement and who continues to support and boost my confidence and self-esteem and treat me like a valuable human being. She has to work under a clinical lead and I’m not allowed one of those because I don’t fit the criteria and so she won’t be allowed to work with me either.

I know that mental health teams are increasingly underfunded. Before all of this, I worked in one. I know all too painfully the limitations of the services, the understaffing and the squeezing from all angles. I’ve tried to make myself as little of a burden as possible on the NHS and specifically on my local mental health team. I’ve not agreed to appointments unless I really believed I’d be well enough to attend. I stopped booking them when it was making me worse and I was becoming unreliable at attending because I didn’t want to waste appointments that could be given to other people. I didn’t agree to have therapy that I’ve previously had that I knew wouldn’t help me and that again, I wasn’t well enough to attend. All I asked was to see my support worker for an hour every couple of months and to be kept on their books, under a named psychiatrist, so that I didn’t have to wait weeks to be re-referred in the future by a GP surgery where I’ve met none of the doctors and the last doctor I was under kept me on a medication that my psychiatrist described as basically poisoning me with horrendous side effects.

Oddly, this phonecall came the day after I had a completely unexpected letter from the same team telling me that an appointment had been booked for me to have a telephone consultation with a new psychiatrist. I have no idea who booked this or why and the lady on the phone yesterday wasn’t aware until I highlighted it and she checked my records and even she didn’t actually know why it had been booked. I was already stressed and anxious because of this random appointment but it also really upset me and made me pretty angry because I begged to have telephone appointments 5 years ago so that I could still engage with support but not make myself really ill trying to go to appointments. I was always flat-out refused this and told that it was completely impossible. I know that we’re living through “unprecedented times” right now and that people are having to change and adapt their work in order to maintain services during this pandemic but I cannot for the life of me work out how it’s possible, doable, and acceptable to have telephone appointments with a psychiatrist now, when a few years ago it was completely impossible even though that meant that I had to stop having any support from a trained professional because I was too ill to do it in the way that they offered.

All I kept being told yesterday was that their service only offers time-limited, goal-specific help, none of which I’ve ever been well to engage with because the offerings are so limited and are all aimed at people who are much less ill than I am. All I’ve ever been offered (apart from medication which we’ve all agreed I can’t and shouldn’t take again) is 6 sessions of CBT and group art therapy run by a support worker, the same job role I had when I was working. Yesterday, I asked what people like me are meant to do, those of us who are too ill to engage with what they offer and she said there were community treatments, all of which she acknowledged required you to be well enough to physically attend. I’m severely agoraphobic. I can’t go out. So the upshot seemed to be that there’s nothing for me, no service, no treatment, no one to keep an eye on me or make sure I’m not spiralling. No one unrelated to me who I can talk to about how this is actually all making me feel or what it’s like to live like this which actually leaves me with no one to talk to about that because I just can’t bear putting that on people around me. My social network has reduced and reduced over the years of my illness and each time I’m struggling, there are fewer people to talk to and I feel further and further away from them and from normality. I’m good at getting through the day-to-day stuff, I’m great at ignoring my limitations and working within them to the point where I sometimes forget that I’m ill and often forget what I’m not capable of until I’m rudely reminded by circumstance and it all comes flooding back. I don’t have people to talk to about how frightened I am, about how much my belief and hope are fading as each month passes. It’s not because I don’t have people close to me, it’s because I can see how painful it is for them when I talk about these things and I know that what often keeps them going is my grit and determination and continuing belief that I’ll get better. I don’t have the heart to tell them that I don’t know if I believe that anymore and that although I mostly do think that I’ll be better, albeit not cured, one day, that image is increasingly vague and I’ve got no idea of how to get from here to there, what to do to make it happen or when it may occur. Never in my wildest dreams did I think I’d be 6 months from turning 30 and still severely agoraphobic and unemployed. I know I achieve a lot and this isn’t meant to be a pity-party but it’s very hard to keep yourself going, day after day, year after year, when you have to fight for even the basics of medical support and then have that randomly threatened with being removed.

The only reason I’m not now discharged is because of this mysterious appointment that’s been arranged for me. She eventually agreed that I could speak to the new psychiatrist and see what he says and that we’d “discuss it”. So now, I get to spend the next month, waiting and trying to work out how or even if I should try and persuade them to keep me on their books. Because even if I manage to stay this time, how long will it last? It will always be hanging over me. They offer me next to no support and no treatment anyway so in many ways I won’t be any worse off without them. But it feels like I’ll be even more alone, even more adrift and cut off from reality, normality, and help. It makes me sad and angry that people like me are just abandoned. That we’re so ill we can’t function and are essentially punished for that by having accessible treatment denied. So many people have the opposite problem of needing help but not being so ill that it’s deemed necessary and having to wait until they deteriorate before anyone will treat them. Increasingly it seems that there’s a right way of being mentally ill and more and more of us are failing to do it that way and then get denied treatment. I can’t make my illness fit in with the criteria they set, I can’t get myself well enough to attend the treatment that they say will get me better and so rather than bring any of it to me or even keep it paused until a miracle happens and I can get myself there, they decide that I look bad on their books and need to go. I wonder how many people out there exist as I do? I don’t think we’re even counted. They know how many people have a diagnosis, how many people went through therapy, how many people had a psychiatrist. But once I’m discharged, I won’t exist anywhere as a statistic. I won’t be counted as one of the people they failed, I won’t be listed somewhere as one of the people who was so severely ill that they couldn’t be treated. I’ll just disappear. Even statistics for houseboundness don’t seem to exist. I’ve looked and looked over the years and never found anything that even attempts to give numbers to how many people are physically or mentally ill enough that they’re confined to the house. I know there are many of us. The sheer number of people who, well-before lockdown or Coronavirus, were arriving at my blog because they wanted advice or help to cope with being housebound, is huge and I’m just one blogger with a small following and a pretty small reach. There must be thousands of us. But we’re all hidden away and mostly we’re forgotten about and just left. Lockdown has shown just how hard living your life indoors is to the masses. People are going stir crazy. They can’t work out how to entertain themselves, how to stop eating every 30 minutes, how to work, how to get medical help. This has been my life for 6 years and I’ll tell you for nothing, there’s never been a better time to be housebound because of the sheer number of free resources that have been released. So many things have adapted and been made accessible so that life can continue despite us all being indoors and still it’s unbearable for many people. Spare a thought for those of us for whom this is our life permanently, who don’t get to do PE with Joe or have church services via Zoom or watch Andrew Lloyd Webber musicals in our lounge the rest of the time. The majority of the time, these things are completely inaccessible to people like me and now even mental health treatment, in the midst of a pandemic, is being withdrawn because I don’t fit into the box neatly enough. As yet, I’m undecided about what to ask for in this appointment and whether I’ll put the energy into trying to fight or just give in this time because as seasoned readers of my blog will know, absolutely every step of the way, I’ve had to fight to get any treatment or support and I’m so unbelievably tired of doing that and being let down. I always thought that I’d get through this on my own, in my own time and I have no idea if that’s true but it looks like that’s the only option I’m left with and I’ll just have to hope that one day, the solution will reveal itself and I’ll somehow get from here to “better”.

6 Years’ Agoraphobic – Coping with Social Distancing, Self-Isolation and being Housebound: Advice for COVID-19, Anxiety and Beyond

For 6 years, I’ve been virtually housebound suffering from severe Agoraphobia, Generalised Anxiety Disorder and Social Anxiety. It means I’m in a fairly unique and experienced position to advise about the dos and don’ts of being indoors for a prolonged period of time. Below is a long list of suggestions that have helped me and that I hope will help you to cope and keep occupied.

Do remember that this will have an end point. Much as it’s not clear when that end point will be, there will indeed be one and it’s important to focus on that and not get too bogged down or pessimistic. For those who don’t know me, I’ll point out here that I’m not an optimist, nor am I a fan of most self-help stuff because I find it patronising and overly simplistic. I’m not involving myself in the medical side of things because there are plenty of articles already available on this and I’m not a medical expert, but I am an expert in how not to go stir-crazy when cooped up indoors for an indefinite period of time, for reasons beyond your control.

1. Create and Keep a Routine – Getting up and having a routine are absolutely key to keeping focused, motivated and having any sense of what time of day it is. You’d be amazed how quickly those things fade if you don’t stick to at least a few basic plans each day. The absolute musts are getting up, going to bed and eating at set times as those all help to regulate your body clock. Getting dressed and having activities planned for the day are also great for helping you be ready to tackle things and motivate you to get stuff done rather than lounging in front of the TV all day. Writing out a timetable can be really helpful, as well as a list of suggestions for activities and tasks to do if you get bored or can’t think of something to do at a specific time.

2. Limit Accessing of News Updates – It can be really tempting in times of crisis and uncertainty to want to be as informed as humanly possible, all the time. Stop. It’s SO bad for your mental health, won’t lead to you being more informed and is likely to just make you panic and feel sick. Choose your news sources wisely! Don’t take notice of the umpteen viral social media posts written by so-called experts that are constantly contradicting each other and spreading misinformation and worry. Pick one or even a few specific times a day where you will check on these reliable sources and then avoid the rest of the time. If you find this too much, then keep reducing down until you reach a happy medium of informed and calm-ish. If it’s all too much and you want to hunker down, then feel free to avoid all news and stay in your happy place. Do whatever it takes to stay sane and coping!

3. Be Prepared but Don’t Panic Buy! – We’re all well aware of how ludicrous the situation is in the shops right now (at least in the UK) and it’s important to be prepared and to have in the things you need for if lock-down happens or you have to self-isolate. Having enough food and supplies in is really useful but please, please don’t panic buy because it’s stopping everyone from being able to be prepared and causing widespread anxiety. If you’re able to get food in, then a great idea is to batch cook some meals to freeze so that if you become sick, you can eat nutritious food, won’t need to go shopping for a while and can just defrost and reheat instead of cooking when you really won’t feel like it. You do not need 1500 toilet rolls, they don’t taste nice or help your lungs! Make sure you eat healthily and regularly and stock up on some treats too – try to avoid eating all of them on the first day of quarantine!

4. Finances – Money is becoming a huge worry for many. Try to avoid burying your head in the sand and work out exactly where your family stand and look into what help is available to you. Making a spreadsheet of current expenditure and income can help you identify areas to cut back on, as well as showing you your budget. This puts you in the best position to act quickly and pre-emptively if things are going to worsen for you and could help you avert a crisis. The finance situation is different for everyone and changing daily so keep researching and applying for all of the support available to you and remember that even small changes can build up to make a big difference.

5. Social Contact – While we’re all having to avoid physical contact with people outside our household (and inside for those self-isolating), we don’t have to be isolated from all contact. Phone calls, emails, video calls and group chats are just some of the ways in which we can continue to socialise. Talk to people about how you and they are feeling, give each other tips of how to pass the time and talk about anything other than the virus when you can! Check in with others who you think might be struggling and rekindle friendships that fizzled out due to lack of time – there’s an abundance of that right now. Setting up cyber groups is another way of doing joint activities whilst being socially distant, things like film nights, book groups, cocktail evenings, lunch dates, debates and more can all be done via video chats or cyber groups to keep you involved and connected with each other, sharing activities and combatting boredom.

6. Plan for the Future – During scary times, it can feel all-consuming and never-ending but this will pass and there will be light at the end of the tunnel. In order to keep focused on that and to keep you getting through all of the difficulties and things you currently can’t do, rather than focusing on what you’re missing, put all of those things and the things you’re looking forward to doing once this is all over, into a list. Keep adding to it each time you think of something new and it’ll give you all sorts of ideas for how to fill your time once this period of isolation and restriction comes to an end. It’s highly likely to increase your enjoyment and gratitude for the ability to do those things once you’re finally able to again. I never get over the novelty of feeling the wind on my face having spent the majority of the last 6 years indoors.

7. Use this as an Opportunity – You’re likely to suddenly have a lot of time on your hands and while that might seem like a dream come true, the novelty quickly wears off. Rather than letting the boredom set in, use this as an opportunity to get tasks done that you’ve been putting off, to learn new things, to start something that you’ve always wanted to and even to re-evaluate your priorities and make changes to your life. It’s easy to get caught up in the day-to-day busyness of life and forget that we can change things we don’t like and put more time into the things we do and now is a perfect opportunity to start making that happen.

8. Look After your Mental Health – This is crucial! A lot of us who have mental illnesses, have strategies and coping mechanisms to keep our symptoms at bay and enforced time at home may be restricting your ability to do some of those things. Even those who don’t have mental illness may well have things they do that keep them calm, focused and able to cope well with daily life and being indoors for prolonged periods of time is likely to have quite a profound effect on your mental wellbeing. My key suggestions would be to talk to others and tell them how you’re feeling, share tips on coping and activities to pass the time and set goals together that you can help each other achieve. Being at home can be extremely lonely and isolating but you don’t have to be mentally alone, there are a lot of us out there all in this together so head to your contact list or social media to find others to connect with and you’ll realise you’re not alone in finding this hard and that might just make it a bit easier. If things get really bad then reach out for professional help, it’s still accessible especially over the phone and online, so don’t suffer in silence!

9. Help Others – If you’re feeling bored or have any skills, services or supplies that you could share with others in order to help them then do it! Helping others is a great pastime as well as building community spirit and connectedness. In times like these, even small gestures can make such a huge difference and they help us see the wider picture of us all being in this together. Obviously, maintain social distancing whilst doing this.

10. Be Creative – As you’re likely to soon find out, there truly are only so many hours of daytime TV and trips to the kitchen to check the fridge for snacks, that one can take before wanting to climb the walls. Therefore, creating, rather than consuming, is a great way of getting out of that cycle and making your day better. It doesn’t have to be drawing or painting, it can be literally anything from writing a poem to building a shed, taking photographs to making up a dance. Anything that involves you making something or changing it and using your hands and your brain to produce something, will do just fine and it’s great for giving you a sense of achievement too because you can see the result of your efforts at the end.

11. Keep Fit – You might have to get a bit inventive here and try not to annoy your neighbours (especially those of us in flats/apartments) but getting your heart rate up and your blood pumping is a sure-fire way to help clear your head and get rid of excess energy and anxiety. If you have home exercise equipment then use that, if you’ve got a garden then get out there and run, play with a ball or even skip. For those of us who only have indoor space we’re a little more limited but thanks to the wonders of the internet you can find free workouts, yoga and Pilates tutorials, dance classes and more. You could do strength training if you’ve got weights and if not, get out some of those stock-piled tins of beans and use them instead. If motivation is tricky, then get your friends involved and hold each other to account or even video chat whilst you all do the same workout and cheer each other on!

12. Avoid Substances and Bad Habits – It’s a really tough time for everyone and it can be all too tempting to look for ways of escaping difficult feelings but leaning on substances or bad habits will only harm you more in the long-run. Try to avoid alcohol, comfort eating and any other self-destructive behaviours and talk to others if you’re struggling to manage. Keeping busy is the key to getting through as unscathed as possible.

13. Free Activities and Resources – Companies and individuals are offering free services, resources and activities, with new ones popping up daily for kids and adults worldwide. There’s everything from fitness routines to tours of zoos and museums, education and language-learning resources for all ages and abilities, colouring pages, recipes, courses and qualifications and so much more. Now is the time to start looking into all of the things you always wanted to do and never quite made the time for, be it learning sign-language, pasta-making, or crochet, there are guides to almost everything, if you look.

14. Change your Environment – If your country allows and you feel it’s safe to do so, then go outside to an open area, staying 2 metres apart. If you’re lucky enough to have a garden or a balcony then use that regularly. If, like me, you don’t have outdoor space then you have to be more creative. Watching nature programmes and documentaries is a great way of seeing outdoors without actually being out there and opening windows as often as possible to get fresh air in is really beneficial. Even just changing rooms or sitting down the other end of the sofa is better than staying in the same spot for days on end. You could redecorate or rearrange some of your living space to freshen it up and make it feel different and new. Keeping your curtains and blinds open and making sure you get enough daylight will help your mood, sense of time and your sleep pattern and although you may not notice the benefits, you’ll certainly notice the deterioration in all of those things if you keep the light out. Another great way of getting the outdoors indoors is to grow something. It’s very therapeutic to have a plant to look after, it’s good for air quality, and it can even be useful if you grow something edible – my personal favourite is chilli plants which grow pretty quickly and easily and can then be added to my cooking or saved up and made into chilli jam.

15. Working From Home – For those of you who are unexpectedly working from home, try to keep a distance between work and home. If possible, keep your work to one area of your home, keep it to specific times and outside of those don’t be tempted to check emails or do extra unless you absolutely have to. Psychologically, it can be hard to keep a mental distance when there’s little to no physical distance but our brains are really good at picking up on cues so setting routines and times that are similar to your regular work schedule and even changing clothes, eyewear or hairstyle so that you have ‘work’ and ‘home’ versions could make the difference between feeling like your work is never finished and being able to fully enjoy your free time. It requires discipline and it’s not easy but having separation really helps you to focus on the task at hand and then let it go when the time for that is over.

16. Tune Out – Although most of the things I’ve suggested involve ‘doing’ stuff to keep your mind and body occupied, you sometimes need to just ‘be’ and that’s just as important. Write a list of things that help you relax, calm down, and zone out, and plan those in so that you’re not exhausted from too much ‘doing’. Anxiety, stress and worry are exhausting, trust me, I live this every day and it’s really tiring and you’re likely to get a lot less done than you’re planning or hoping. Try to be ok with that. Plan in regular time to just ‘be’ and you might find that the rest of your time is more productive because of the breaks you’ve taken. Similarly, if you’re religious, spiritual, or have regular practices like mindfulness, meditation, or relaxation, then ensure that you’re still building that into your life, even if it means using alternative methods to access it. You’ll need periods of escapism too and reading, audiobooks, gaming and passive TV can all provide this and give your brain a much-needed break.

These are frightening and uncertain times but hopefully by following some of my suggestions, you’ll keep as calm, occupied and content as possible, until freedom is restored.

For specific, anxiety-related tips on how to cope with being housebound, you can find my post written 14 months in here.

Letter to Myself 10 Years Ago – Age 27 and a Half

Today I was reminded about a post suggestion I followed a couple of years ago to write 50 words to yourself 10 years ago. 50 words is nothing like enough now but I wondered how different that might look, 2 years on. I realised that 10 years ago I was in the midst of severe depression and very very ill so here’s my letter to Lucy of 10 years ago.

Dear Lucy,

You’re 17 and a half. For some reason the halves and quarters have always mattered to you. In fact, you recently described yourself as 27 and a half so it’s not something you’ll grow out of. You’re currently in hospital. You asked to go. You didn’t feel able to keep yourself safe anymore. You’re not sure at the moment if it was the right thing for you to do but I can tell you from the future that it’s one of the best decisions you ever made. You’ll meet some of the best, kindest, most normal people there. You’re still friends with some of them now. You’ll decide on a new career direction while you’re there, you’ll have a poignant conversation with some other patients and realise that your passion lies in helping people and the fire will be ignited in you that, 10 years on, is burning stronger and brighter than ever to make a difference to the lives of people with mental illness. I probably should have started this with a spoiler alert, I guess I’m wrecking all of the surprises. Sorry!

You’re struggling so much right now. You’re in so much pain. It does get better, I promise. But I know that right now it just feels like the worst thing ever and you’re wishing with everything in you that it would all just go away. You feel so alone, so misunderstood, so attacked and hurt by people around you. Some of that gets easier. You’re not alone in the future and you aren’t alone now. Let people in. Try to spend less time worrying about what other people think, I know it matters so much to you but it’s eating you up inside. Later this month you’ll be asked to create a “positive box” by the hospital, you’ll think it’s silly and you’ll only be able to write two positive things about yourself when you start but just watch what happens next, watch all of the patients and staff around you take time to write you messages, make you things, draw you pictures and give you gifts to put in your box so that it’s so full it almost won’t close. It’ll bring you so much comfort over the coming decade and it’s still kept safe now and is a treasured possession.

Listen to the staff. They care about you, even though you sometimes don’t realise it. They’re trying to help you. Eat the food. You’ve had an eating disorder for too long. You’re restricting yourself so much as punishment because you feel you don’t deserve nice things. It’s not true, you do! You’re so kind and caring, you put everyone else first, always, please stop punishing yourself with restricting food and self-harming. Spoiler alert again, this will get better, I can’t say if it’s permanent or not but right now, you’re a healthy weight, you no longer have a distorted body image and you haven’t self-harmed in years. The scars you’re so ashamed of currently are no longer something you feel embarrassed about or have to cover up. You’re happy to wear t-shirts and short-sleeved stuff and despite the scars on your leg that you’ll create when you’re 22, you still wear a bikini and finally realise how fabulous you look in it!

In 6 months you’ll start embarking on romantic relationships. It’s safe to say that these are not successful and some are still a source of embarrassment and shame. I won’t tell you what to do or not do, you wouldn’t listen. You need to go through all of that to realise what you want in life, to realise how you shouldn’t be treated and to eventually realise what you’re worth. Try to make sensible choices and stay true to yourself. Try not to regret anything. Take it from me, your “accidental anal” story will become legendary and the chlamydia test debacle will put more than a few of your friends at ease that their experience can’t possibly be more embarrassing than your own. All of these things make you an even better friend and when you get to my age I think you’ll be really proud of the friend you’ve been and still are.

I know you’re really struggling to stay alive right now. Even 10 years on I can still feel that ache in your chest, that desperation to find any small reason to stay alive, to not spend all of your time planning a way out that won’t involve causing yourself pain or hurt those around you. I know you think you want to die right now but years later you’ll realise that’s not true. You don’t want to die. You want to stop hurting. I don’t know how it happens, I can’t even pinpoint when, but gradually that pain does lessen. Gradually, you stop wishing for death. Get through each moment, each day, I promise you it will get better and you’ll never believe how good it is to not feel that weight on you all day every day.

You’re currently being told by a lot of people that you’re selfish. Deep down you know that’s not true but it’ll take a long while for that to sink in. Tell yourself every day that you’re not. It might just save you some heartache and might keep you more confident. You will realise eventually that you’re not selfish and you’re not self-absorbed either. The people telling you that are angry and they don’t understand your illnesses and so they’re lashing out in the hope that they can snap you out of it. You know it won’t work, eventually they realise that too, but right now it’s going to hurt like hell and you’ll spend way too many hours crying til you can’t see anymore and wishing even harder to disappear from the world. You won’t always feel that way and even though life at 27 and a half is a challenge that I wouldn’t even consider telling you about now, you’ll be helping people, you’ll be making a difference and no one will have called you selfish for a really long time.

You’re hearing voices and that’s ok. It’s terrifying and it’s something that you tell almost no one about because you’re convinced that you’re schizophrenic and you’ll get sectioned but it will be ok. You won’t get sectioned. You don’t have schizophrenia. And although you do get some worried reactions from people, no one leaves you because of it. You’re going to start hallucinating soon. You may have already started. It makes you feel like you’re going mad, like your mind is out to get you. It gets easier. You get used to it and it does stop, at least for the most part. Again, I don’t know when the voices stop, not for a while now but eventually they will and they certainly quieten and lessen over time. You’ll learn to over-power them, to drown them out or tell them they’re wrong. You’ll stop seeing hideous versions of your own suicide. The only hallucinations you’re left with in a decade are of bugs and those are only occasional and when you’re particularly tired. Quick tip – when that happens, go to bed, it’s a sign you’ve been up for way too long! You won’t be scared of it anymore and it isn’t anything sinister no matter how much it feels like it must be right now. You won’t believe this but it’ll actually help you with your future work, all of these experiences will help you be an awesome nursing assistant and they’ll help you to relate to patients and be understanding and empathetic. When you’re working in the future you’ll actually consider being grateful for these experiences because by then you’ll have learnt so much from them. I know that sounds crazy right now but trust me, you’ll get here.

I’m so sorry you’re going through this right now. I wish I could make it better, take the pain away, give you the map of how to navigate your way through it. The truth is that I have no idea how we get from you to me. If I could do anything to make this easier, I would. You’re feeling so alone, so hurt and so suicidal right now and you’re going through one of the toughest periods of life that we ever do but you will get through it, you’ll make amazing friends, you’ll choose a fascinating, worthwhile career path, you’ll do a degree that will make you meet even more fantastic friends and even the man you hope to marry one day. There will be some dreadful periods, times when you can’t see the light, when you won’t even want to try and look for it. But you’ll keep fighting, you’ll keep driving yourself forwards because that’s what you’re doing right now and by 10 years later you’ve got even better at picking yourself up, dusting yourself off and striving forwards to get what you want.

Take care of yourself, be proud of yourself and try not to fear the future, it’s terrifying, even worse than you’re imagining, but it’s amazing too and you’ll get here.

Love you,

Lucy (age 27 and a half) xxx

50 Words to My 15-Year-Old Self

A while ago, I read something online that asked what 50 words would you say to your 10 year younger self. I thought about this and thought about what age I was then, and what was going on in my life at the time. This coming December will be 10 years since I got depression – a whole decade, that’s a long time. In some ways it feels like a whole lifetime but I can still remember, as if it were yesterday, the days leading up to it where I felt happy and like I was managing, the events that triggered it to develop pretty much over night, and the all-consuming feeling that I woke up with the next day, and for countless days afterwards, that I could no longer cope. It was like the life and joy had just been sucked out of me and I was left, gasping for air, clutching at hope and feeling the most intensely bad things I’ve ever felt. I didn’t feel able to cope, I no longer wanted to live, I could see no other way out and I was scared of myself, of all of the horrible things I was thinking and of all of the bad things I felt I was capable of, not least of which was ending my own life. So, 10 years on, with more diagnoses than I care to remember and having gone through more suffering than I like to admit, this is what I’d say to the 15 year-old me. This is not what I’d say to a person with depression, or any other mental illness, it’s not what I would want someone to say to me now but, with the benefit of hindsight and with 10 years of experience under my belt, it’s what I would say to myself aged just 15 – sad, scared and suicidal.

You will be OK. You will suffer and it will feel unbearable. But you will bear it and you will come out stronger. You will fight harder than you realise is possible. But you are strong, you are a fighter and you will survive! Keep fighting. Keep going. Keep strong!

What would you say to yourself 10 years ago? What would you have needed to hear? I doubt that it would’ve have helped me 10 years ago to hear this, I doubt I’d have listened or believed it because the feelings were so all-consuming at the time but it’s what I feel like I needed to know, even if it would have just given me a glimmer of hope, that I was in such desperate need of at the time. I now try to tell myself these words every day. I don’t believe a word of it, but I know others do, and I know it’s what I need to hear and hold on to. I’ve got through nearly 10 years of depression, I can get through another few years of anxiety disorders too, I just have to keep fighting, keep going and keep strong!

Living My Life Online: One Year Of Blogging

A year ago I finally caved to suggestion and set up this blog. I didn’t know what to expect and I didn’t really think anyone would be interested in what I had to say. I thought that my mum, boyfriend and a few of my closest friends would read it and eventually I’d get bored or distracted and stop writing. Little did I know that in my first month I’d get 1000 hits and that these weren’t just from people who knew me in real life and either cared about me or were being nosey, but would also be from complete strangers from around the world who were going through something similar to me.

When I created the blog I wasn’t really even sure where to start. I’ve learnt a huge amount since then and there are things that I would now change if I started all over again but you live and learn. Choosing a title for my ramblings was really hard and originally I wanted a quote about mental illness from Alice’s Adventures in Wonderland – my favourite book, but that was already taken so I went back to the drawing board. I wanted it to be obvious that it was about mental illness but I wanted to avoid stigmatising language like Crazy. Some of the titles that didn’t make the cut were: Cupcakes And Down Days, Don’t Call Me Crazy and Mental About Cupcakes. Finally, it ended up between two In The Midst Of Madness and Refusing To Be Invisible. My favourite was In The Midst Of Madness and luckily the few friends I consulted agreed and so In The Midst Of Madness was born! Next, what was I going to write about? What did I want to tell people? I wrote a list of things that I had experienced and things that I felt people needed to know and started creating titles for those posts so that while I was setting up I had a good list to choose from when the moment took my fancy to write something. As I’ve gone through the year, I’ve still not finished working my way through that list because new things have cropped up because of media coverage, fluctuations in my conditions, events and awareness days/weeks and the themes they’ve suggested sufferers should write about.

So what has blogging done for me? I won’t go as far as to say it’s been therapy for me but it’s certainly been cathartic. Being virtually housebound means that I often feel incredibly isolated and lonely. There are very few people who visit me or contact me and I often feel alone and misunderstood but having a blog which is mine, where I can write whatever I fancy, has been really helpful in allowing me to have a platform to reach a much wider audience. It means that I finally have a voice. Despite being stuck indoors, I can now be heard. I can help educate others, help explain what these conditions are like, help give a voice to those that aren’t able to communicate their thoughts and feelings and ultimately achieve my goal of helping raise awareness, increase understanding and reduce stigma.

Throughout my time as a blogger I’ve been contacted by numerous people who’ve thanked me for my words, who’ve offered support and encouragement and most of all people who have or are going through the same things as I am currently. I feel honoured each time someone contacts me and opens up or confides something in me, I feel honoured to be on this journey with some of the loveliest people around, most of whom I have never and will never meet. I’m not a believer that illness happens for a reason, I don’t believe that God only gives you what you can handle or that I had some life lesson to learn which involved being ill for two thirds of my life but I do believe that illness changes you and while so many of its effects are negative and life-altering in a truly terrible and devastating way, it also changes people in a couple of good ways. Chronically ill people are often the kindest and most understanding people you’ll ever meet, they’re much more grateful for the little things in life because they are painfully aware of how important they are and how quickly the big things can be taken away when taken for granted. They’re also some of the most sympathetic and caring people and I find that they often make the best friends. If you’re friends with someone who’s chronically ill then you should count yourself lucky and cherish that friend because chances are they’re ploughing their precious energy into a friendship with you because it means the world to them despite often tiring them out.

Blogging about my experiences of mental illness led me in a very unexpected direction at the end of April when the Adult Colouring craze hit the UK and then the world by storm. As most of you know, I was already on that bandwagon but was a secret colourer at the time and was elated when it became fashionable and so many of my friends started getting involved and I no longer had to colour in secret. However, with the release of so many books, how did I know which ones to get? I’m on a very strict budget because we’re living off just my boyfriend’s income (we receive no benefits despite what many people may assume or believe) so money is very tight and the last thing I wanted to do was waste it on a book I wouldn’t like. I scoured the internet for reviews to tell me what the paper quality was like and whether my beloved fineliner pens would bleed through but I found nothing that had enough detail for someone like me who couldn’t visit shops and flick through the books. I saw that other people were reviewing books and being sent copies by the publishers but that these reviews, whilst very well written, weren’t suitable for someone who was entirely reliant on them to make a decision about where their money would be spent and so my reviewing venture began. I contacted some publishers, not expecting to even get responses let alone have any of them be happy to send me books, but that’s what a few of them did and away I went. I set up a separate blog dedicated to all of these reviews which I named Colouring In The Midst Of Madness to allude to the fact that I was not only reviewing adult colouring books, but doing it from a mental health perspective and I wanted it to fit in with my “brand”. That blog has overtaken this one in terms of hits and visitors and last month I received a staggering 100,000 hits thanks to being the second person in the world to publish a review online for the long awaited release of Lost Ocean by Johanna Basford (Colouring Book Queen and worldwide bestselling illustrator). I’ve now reviewed over 70 books and products and have a huge waiting list of books piled up in my lounge all waiting to be coloured and reviewed. I’m slower than other reviewers but that’s because of the amount of detail in my reviews and the fact that I always colour a full page in each book. I also have bad mental health days where I have to take a day off and just deal with how overwhelmed I feel at being out of bed and awake, without the stress of analysing intricacy levels and paper quality and trying to colour within the lines.

Having this blog and becoming a reviewer has taught me that I can write. I’m not amazing at it but I’m good enough that people enjoy reading it and come back for more which is the biggest compliment I can get! I’m hoping to broaden my reviewing horizons and start reviewing other products and services from a mental health perspective and if anyone has any ideas on things they think I could review then please do let me know, I love hearing from you and ideas are always welcome! Mentally ill people are often overlooked and the difficulties we can have when using products are not often thought about but given that 25% of us every year are experiencing some sort of mental health problem, it seems like a pretty good group to review for, even if I do say so myself! Ultimately, I’m hoping that all of this hard work will pay off and that I’ll be able to land myself some sort of writing job, preferably that can be done from home while I’m recovering until I’m unleashed back on the outside world and can realise my full potential again. I don’t want to be a writer for the rest of my life – I have big, grand plans to try and take the mental health world by storm and get mental illness on the school curriculum, reducing stigma before it’s even become ingrained and ultimately change the way it’s viewed and treated in this country. But, in the meantime, I’d love to use my skills to write and reach a bigger audience than this blog currently does. I’ve never been one to do things by halves and despite being virtually housebound I have big plans and I push myself to my absolute limits. I’ve challenged myself and been interviewed live on radio twice and was interviewed for a couple of media articles one of which was published in Nautilus magazine and the other in The Guardian newspaper. I would certainly push myself to do those things again and would love to be on TV and reach an even larger audience (from my own home currently of course). If anyone out there would like to employ me to write then please do get in touch, I’d love to hear from you – click here if you would.

As you can see, the last year has been fairly eventful thanks to blogging and the opportunities it has created. I’ve not made an awful lot of progress healthwise but this post isn’t about that, it’s about what I’ve learnt, what’s helped and what I plan to do over the coming year and beyond both on my blog and generally with my future career. On top of all of this, I spent 8 months last year teaching myself to crochet and then setting up a business on Facebook selling my crocheted items which is currently on hold because I’m so busy reviewing but I am looking forward to getting back to it some time when I have a bit more free time and share my woolly creatures with the world again. The picture above on the left was everything I’d ever crocheted up until that point and was the cover photo of my first ever blog post so it seemed only fitting to show you what the same shelf in my flat looks like now after making well over 100 crocheted items that have been sent all over the world.

The last thing left for me to do is to thank you, each and every one of you for reading my blog, whether this is the first and last post you’ll ever read or whether you’re one of my true and avid fans who’ve read everything I’ve ever written (I salute the few of you that have done this, it’s no mean feat now I’m reviewing books constantly). Your support means the world and I read every single email and comment and I do always reply so do check back. I hope that my blog has helped each one of you in some small way, whether it be picking out the right pens or the perfect colouring book, or voicing the feelings you’ve never been able to express, or just helping you to realise that you’re not alone. I hope I’ve helped, because that’s all I really want in life, to help others and to make a difference so that when I’m gone, people will know I was here.

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.

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

October the 10th was World Mental Health Day and this year’s theme was dignity. I originally thought this didn’t apply to my situation because I am, mostly, dignified whilst being ill and treated with dignity, or so I thought. I started this post by looking up the definition which I found to be as follows:
Dignity – The state or quality of being worthy of honour or respect.
As soon as I read that, I realised that I was wrong – while I may behave in a dignified manner, I’ve certainly not always been treated in a dignified way and have often not felt worthy of honour or respect because of the way I’ve been behaved towards.

Dignity is something that is often overlooked when treating people with mental health problems and we are often not given the respect we deserve. Sadly, this behaviour is often directed towards us by the very people who we have sought help from, who are trained to deal with our conditions and who we are reliant upon to offer or refer us for treatment. Is it any wonder then that it takes most people such a long time to even go to their GP when they suspect they may be mentally ill? Stigma is still rife within our society and while it is improving and openly stigmatic behaviour is starting to reduce, there is still a really long way to go and unfortunately, nowhere is this more necessary than within the medical community.

My experience of seeking treatment has been very varied and it’s often a very lengthy process. Even when I’ve gone to my GP about physical problems, I’m often disbelieved or it’s assumed that my symptoms are psychosomatic or even made up – all because I have a mental illness. I’m regularly talked down to, patronised and treated with condescension and this has very much put me off doctors and seeking help unless I really have to because I simply don’t have the energy to fight for someone, who should be understanding and sympathetic, to even believe me. Couple with this, the responses I’ve had from doctors when attempting to get a diagnosis or treatment for my mental illnesses and we’ve got one hell of a problem.

A month before I turned 16, circumstances in my life led to me feeling incredibly sad and low and unable to cope anymore, pretty much over night. Mental illness was not something that had featured in my life up until that point – none of my relatives or friends were ill to my knowledge and my only experience was that of over-hyped and dramatized portrayals in the media of violent offenders and people muttering to themselves and rocking whilst strapped into straight-jackets in padded cells. So when I started feeling low and it didn’t go away, I didn’t know what to do. I thought people would think I was silly and that I should just be able to cheer myself up because nothing terrible had happened, no one had died, I hadn’t been attacked, things were just going wrong at home. Eventually, after 2 months of never feeling better, I finally plucked up the courage to go to the doctors. I thought I was going to get sectioned or medicated but I didn’t know what else to do and the thoughts I was having were starting to scare me. I explained to my GP what was wrong and that this wasn’t normal for me. After 10 minutes she told me that it was “January Blues” and “every teenager in the country is feeling like this at the moment”. I said to her at the time that there would be a lot of suicides if that were the case but I was sent home and she did nothing. Two months later I went back, I’d started self-harming and was feeling suicidal every day, she took one look at me and referred me to the Child and Adolescent Mental Health Service because I was very ill and needed help. The first doctor I met there was great, he treated me like a person and was very respectful and understanding about how bad I was feeling and that something needed to be done about it. I wasn’t so lucky with any of the other staff I met there. I was allocated a nurse who I saw once a week who spoke to me like a child and contradicted me every time I said I was feeling worse. I was put on medication more than once and never monitored properly and then told off and admonished when I took myself off it because it was making me suicidal and I felt unsafe. I felt like a naughty child, not a 16-year-old who clearly knew their own mind and felt in danger.

Fast forward to 18 months ago and dignity was thrown out the window by my new GP who decided that telling me to “try harder” whilst dealing with crippling side effects from medications that were later described by a psychiatrist as “virtually poisoning you”, was the best way forward. I practically had to beg her to even refer me to a psychiatrist despite having a history of medication-resistant depression because she felt that I didn’t need one and she was doing a “perfectly good job of treating me herself”. Eventually she conceded and I was able to see a psychiatrist. This has been a good and bad experience. I’ve been lied to, fobbed off, ignored, disbelieved and dismissed. At points I’ve been spoken to like the knowledgeable, well-educated adult that I am who is well aware of the limitations of the NHS and who has studied, worked in and experienced as a patient, the mental health services in this country. But that has been rare. Instead of treating me with dignity and respect, most decisions about my treatment are made without me, often without my knowledge and my very character is often questioned when it’s assumed that my conditions simply can’t be as bad as I’m describing. I highly doubt cancer patients are treated like this when vomiting because of chemo or dealing with hair loss – are they told by doctors to just “try harder” or “stop focusing on the negative thoughts”? I think not! So why am I? Why am I dismissed and treated with so little respect?

It’s clear that many doctors have never been mentally ill, and they’re very lucky. But for those of us that are, it’s hard enough trying to deal with the conditions we have and the things that go hand-in-hand with that like low self-esteem and self-worth without having to deal with doctors judging us, accusing us of faking it, exaggerating, or causing it ourselves. It’s so hard to pluck up the courage to even go to the GP and admit that there’s a problem that you can no longer cope with or hide, without fearing how they might react to you. In an ideal world, we would all be treated as human beings, with dignity and respect, regardless of what symptoms or conditions we have. But currently, this isn’t the case. Something has got to change. Medical professionals, especially those that don’t work in frontline mental health services, are vastly ill-equipped and under-trained to deal with mental illness and instead of seeing people like me as people who are ill, they just seem to see us as walking labels. They still seem to have hugely stigmatic beliefs about us being in control of our conditions and able to just “snap out of it” or “pull ourselves together” and we’re treated accordingly, with disdain, coldness and even aggression sometimes.

First and foremost I’m a human being. After that, I’m many many things – I’m Lucy, I’m female, I’m 24 years old, I’m kind and caring, I’m creative, I’m a great friend. I’m also mentally ill but I’m not those conditions. I’m not anxiety, I’m not depression – I have those, but I’m not them. I am a human being and that entitles me to be treated with dignity and respect, regardless of what conditions I might have. The sooner I’m viewed as a person rather than a list of symptoms, the sooner I’ll be viewed as someone who is suffering and should be treated with dignity rather than a problem that needs to fixed or made to “see sense”. I might be mentally ill but I’m not mad, I don’t lie, I don’t make things up, I’m completely rational. If I say I’m ill, if I say I’m suffering then I’m not trying to gain another label or diagnosis for fun – I don’t get points for it, they certainly don’t convert to prizes. The only reason I seek diagnosis is in the vain hope that it might lead to treatment. Being spoken to in such a dismissive way has stopped me seeking help for most of my conditions and has had a major impact on my self-esteem because it makes me feel less of a person to have a doctor questioning me and treating me with so little respect.

Finally, while I’ve focused on the medical profession within this post, they are certainly not the only people that have not treated me with the dignity and respect I deserve. As you’ll have read in previous blog posts, I’ve been treated disrespectfully by a whole host of people throughout my time as an ill person and this has got to change. You can be that change. Next time you’re talking to someone who’s mentally ill, really listen to what they’re saying, don’t try to fix it, dismiss it, or make them see the positive – just listen. Then think about how you would want someone to respond if you’d just said all of that and were feeling that way. Chances are, you’d just want to be acknowledged, to be accepted and to feel heard. Most of all, you’d want to be treated with Dignity and Respect – you’d want to be Treated Like a Human Being. Be that change today!

N.B – A huge thanks goes to Steve “Squidoodle” Turner for his amazing Breast Cancer Awareness Ribbon Colouring Page which I coloured in green for Mental Health Awareness. If you’d like to get a copy to colour yourself, he’s generously offered it as a free download on his Facebook Page which can be found here. Enjoy and help raise awareness!

Fighting An Invisible Fight

Living with an invisible illness is like living in an invisible prison. No one can see the bars, the shackles, the chains and so they forget. They see you do the “normal” things that you’re capable of doing and then wonder why you can’t do the rest. Why you don’t do the rest. They think you choose not to do those things or that you’re not putting in enough effort. That if only you would try a bit harder then you’d realise you can do all of those normal things that are so natural for the healthy world to do. They don’t see the prison walls around you, the confines in which you live. They have no idea of the price you must pay or the pain you must go through to function. They try to cheer you up with encouragement and positive comments but these often just isolate you further as you realise just how little people understand about your imprisonment. They know little of the torture you endure as you battle your body, your mind, just to complete simple tasks that they don’t even think about. There’s so little comprehension of the hours spent worrying, planning, trying to appear as normal as possible – to function as best you can. You experience judgement, accusation, disbelief. You’re challenged, questioned, pushed, even interrogated and threatened. Then their frustration starts and turns into nasty comments and digs. You’re told you’re not trying hard enough, you don’t want it enough, you don’t put in enough effort, you’re too negative. You hear helpful suggestions like “think positive”, “smile more” and “if you believe you can do it then you will”. I grew up hearing this from all angles for year upon year and it caused me so much pain. Almost more pain than the condition I was trying to live with every day (ME). I couldn’t understand why people didn’t believe me, why they couldn’t see from my pasty complexion and dark circles under my eyes that I wasn’t well and that I needed to be listened to and understood, not pushed and made to “see sense”. These comments from so many sources have now caused me untold damage. From what my psychiatrist and numerous therapists over the years have told me, I now have secondary mental health conditions because I absorbed all of those comments – all of the misunderstanding and disbelief and turned it in on myself. I couldn’t comprehend how people that knew me so well could possibly think those things of me and be so wrong. The more people said it to me, the more I started questioning if I was mad, if they were right and I was making it up, enjoying it and seeking attention. Deep down, I knew I wasn’t, but when you’re 11 years old and countless adults and children around you are all accusing you of the same thing, you really start to believe it and question yourself.

Having illnesses that are invisible means that I’m entirely reliant on trust. You have to trust that I’m telling you the truth about my condition and I have to trust that you believe me. I can’t show you the exhaustion from the ME, the muscle pain, the headaches, the constant nausea. I can’t show you the difficulty I experience in dragging myself out of bed every day, when my depression constantly tells me there’s no point and that I’m worthless and useless and might as well be dead. I can’t show you the intestinal spasms that my IBS causes that make me wince and even double up in pain. You might think I’m being dramatic when my face contorts mid-conversation in response to the intense pain of what can only be described as feeling like my guts are wringing themselves out. But I’m not. I’m simply unable to hold up the “healthy” façade when there’s that much pain inside me.

Anxiety is invisible, it takes over like a parasite. It robs you of rationality and replaces it with constant worrying about ridiculous things that you know would never happen and yet still you can’t stop the obsessing going on in your head. Anxiety makes you fear everything. Things that were always fine and easy to do, suddenly become scary No one else can see or hear the terrifying voices in your head. They can’t hear the constant worrying, the constant stream of thoughts that you can’t do it and you can’t cope. They can’t see the effort you put in all day every day, just to get through 24 hours without a panic attack. Getting out of bed each day is a battle because in bed you’re safe, you can’t fail, you can’t let anyone down. But you also can’t achieve. You can’t succeed. You can’t thrive. You can’t effectively live. So you drag yourself out of bed and face the day and all of its challenges. You keep on top of your racing thoughts as much as you can and you force yourself to be productive and do things you need to do. But one small glitch, one badly worded email, one rejection for a review, one slight perceived criticism and the walls come crumbling down and you’re left trying to pick up the pieces. Again. You build yourself back up again, you plaster back together your already shattered self-esteem, you try to ignore it and not make it mean anything about you. You try to move on, to not mind, to not let it matter. You try to distract yourself knowing full well that most of the time when this happens, the whole day is ruined because you simply don’t have the energy that’s been sapped from holding it together all that time, to be able to stick yourself back together again. So you just count down the hours until you can go to bed and hope that will give you some respite and that tonight you won’t be plagued with nightmares or panic attacks and that tomorrow will be a better day. This fragility means you’re constantly at the mercy of anything negative that manages to seep its way into your life. When you have an anxiety disorder your resilience is almost non-existent. Things that you’d normally take in your stride, suddenly floor you. You get phased by everything. A simple request (when you’re well) becomes an unbelievably mammoth task that requires hours of questioning, wondering, planning and worrying. These are not things we choose to do, they’re the things that our anxious brain decides we must do, especially at night when we’re desperately trying to sleep.

I know I’m strong, I know I don’t feel it but experience tells me that I am, but that doesn’t make it any easier to get through the battles I fight every day to have even the slightest bit of normality. I don’t know how to “snap out of this”, if I did, I would have, a LONG time ago. But instead I have to muddle through each day trying to work out what works and what doesn’t, trying to deal with the fact that fluctuating conditions mean that my ability to do things changes on a daily, if not hourly, basis and just trying to keep up with that is exhausting. So many people seem to assume that once I’ve done something once, it’s easier, but the truth is that it’s not. I know that’s hard to hear, I know it isn’t convenient but it truthfully isn’t easier after the first time of doing something, often not even after the 5^th or sometimes 10^th. Just because I did something yesterday doesn’t mean that I can do it today. I may still be suffering from doing it yesterday or I may simply not be in a place mentally to do it again. Please realise, it’s not simply a case of putting my shoes on and walking out the door when I want to go out – the demons in my head fight back with a vengeance and more often than not they win.

Living with an illness that isn’t visible is a blessing and a curse. You can’t see I’m ill, or see that I’m suffering. I can hide it, act, pretend to be well. I can cover it up and look “normal” as if nothing is going on inside. But it means you can forget – you don’t realise I’m fighting, can’t see what my needs are and don’t notice when I deteriorate. You don’t see what I’m dealing with which makes this battle incredibly lonely and isolating. So next time you see me, or anyone else with an invisible illness, please realise that almost all of our energy is spent in an invisible battle and that despite what you might see or believe, we’re Fighting An Invisible Fight.

Crisis – Drowning and Trying Not to Sink Any Lower

Trigger Warning: This is not a cheery post and talks about feelings of hopelessness and worthlessness. Please don’t read on if you feel that this may upset you or cause you any form of mental distress. This blog is here to raise awareness, improve understanding and communicate difficult themes of mental illness that I experience, it is not here to cause any distress so please read with caution and look after yourself!

Crises are things that many of us go through at some point in our lives. Whether it be a mid-life crisis, a confidence crisis, a devastating loss, a sudden change in circumstance, they can all be crises to us that threaten to overwhelm, take control and force us to submit to the idea that we cannot and will not cope with whatever it is that we’ve just been dealt. I am very much going through this right now.

Despite being virtually housebound for 16 long months, I have mostly been able to keep plodding on, to keep my head just above water and to keep hoping and believing that I can and will get through this and get better. Sadly, this is a very fragile state for me and involves a lot of hard work and effort to keep the negative thoughts at bay and to keep moving forwards as best I can. I have to work at it every single day otherwise the drowning feeling quickly seeps in and takes over and I have to fish myself out again, always a little more damaged by the darkness that’s snuck into my head. Each time it gets a little harder for me to find the light, to find hope again, to believe that this may be temporary and I may be lucky enough to get my life back again.

So what sparked this crisis off? I’ve been waiting for the last month to hear from the support worker I’m supposed to have been allocated after my last psychiatrist appointment where I was finally diagnosed. I have been incredibly anxious about this phonecall and every time my phone has rung my heart has skipped a beat and my breath has caught in my chest while I check the caller ID and see if it could be them. But I haven’t heard anything. I’ve been feeling increasingly apprehensive about whether I’ll like the person, whether we’ll get on, whether the treatment will be set at my pace or whether I’ll be forced to do things I feel unable to do and pushed too hard or not be believed if I say that I cannot do what they’re requesting. I’ve worried about whether it will make me worse by pushing me too far too fast, whether it will indeed help and if it doesn’t, what, if anything, might help instead. All of these thoughts have been racing through my head every day for the last month and it’s exhausting. My head feels full, like it’s wedged full with cotton wool which makes concentrating on even the most basic of tasks increasingly difficult. It’s why my reviews are so sporadic, because some days I’m completely unable to get ideas down on paper or even pick a colour or a page to colour. Other reviewers complete around 5 reviews a week, I’m lucky if I manage half that despite not working, not having children and being a total disaster of a housewife because I find the task monumental and every single step takes longer than it should or would if I were well. I try to ignore this and just keep plodding on at my own pace but it’s hard not to compare myself to others and wonder how I’ll ever cope with a real job again if I’m struggling so much with doing this. Don’t get me wrong, I love reviewing and I’m unbelievably grateful that I’m being given the opportunity to write them for publishers who kindly donate copies of their books, but I find it very hard to keep on top of it and to not get overwhelmed. But, I refuse to give up – I refuse to surrender another part of my life to my condition. I have to challenge myself, to keep pushing my boundaries and to keep standing up to the anxiety or it will take over every part of my life and my personality. So I keep going, I keep fighting the demons, I keep telling myself that I can do it, that I am achieving something, that I am, in a small way, helping others with my reviews and that I’m not totally useless like I regularly slip into thinking.

Anyway, on top of all of these daily thoughts and worries about the support worker which are already added to my general every day worries and anxieties, I received a letter on Friday which was what triggered this crisis. I’ve been asked to attend yet another assessment, with another member of staff I’ve never met (this time a nurse) at a day centre I’ve not attended since I was 18. I don’t know what this assessment is for, or why I’ve been asked to attend. I’ve been sent a standardised letter which totally panicked me because the wording states that they’re assessing me “to determine the best course of treatment for you at this time” and that it will last an hour to “enable you to discuss your current difficulties and whether we can help you at this time”. I’ve already been given a treatment plan and was under the impression that the next step was a support worker being allocated to me and contacting me to arrange a home visit. None of this has happened and I have no idea what this assessment is for. I’ve phoned this week to ask my psychiatrist what’s going on and what it’s for but I’m yet to receive a response so I’ve now spent 6 days (and counting) feeling incredibly anxious to the point where my insomnia has worsened and I’m now unable to sleep before 4am instead of my usual 2am and yesterday I didn’t sleep until almost 5.30am. This then means that I’m even less able to deal with the anxiety and I’ve already had at least 4 panic attacks this week because of it.

Not only has my anxiety worsened significantly, I’m now able to do even less than I usually can because my baseline anxiety level is so high that it takes very little to push me into levels where I can’t control it or cope and have a panic attack so I’m now leaving the flat even less than usual and I’m now even more trapped in my own home and my own head. This has really scared me because normally a letter would shake me up for that day, maybe the next as well but I’m now at nearly a week later and I’m still not calming down. It’s got me questioning major parts of my life (hence the crisis) and I’m now wondering if I’ll ever get better, what might help, will anything help, what do I do if I stay at this level of functioning for a number of years without improvement? I have goals and dreams and plans for my life. None of these are especially big or outlandish. I don’t want to travel the world, if I can never go on an aeroplane again then so be it. I don’t want to bungee jump, skydive or put on a concert for 1000s of people. All I want is to be able to leave the house when I want to. I want to be able to work. To socialise. To get married. Most of all? I want to stop feeling scared. I’m fearful of so many things, it has taken over my whole life and I now overthink everything. I want to be able to get dressed and not worry about what people will think of what I’m wearing. I want to be able to work without the fear that I will fail or let people down. I want to be able to say no to people without the fear that I will be rejected and end up alone. I want to feel confident in my own skin, to feel safe, and to know that the choices I make are ok and accepted and that I don’t need to worry all the time. I want to stop feeling afraid.

This week has caused me to feel totally lost. I feel like I’ve barely made any progress since getting ill 16 months ago. I try my hardest every day and I challenge myself regularly. I’ll achieve something one day and then not be able to do that thing again for another month or even 6. At this rate of progress I still won’t be able to work in a decade and that’s hard to stomach when you’re only 24 and you have your whole life ahead of you. I want to be able to fulfil my modest dreams, to achieve the things I hope for. I want to know that somehow, someday, I will get better. That I will get my life back and grab it with both hands so that I can change the lives of others with conditions like mine. I’m desperate to make a difference, a bigger difference than I can possibly make sat behind a computer screen and trapped inside my flat. I have no idea how to get better, or what will work. I was so convinced that medication would work and I’d be back at work within 2 weeks. I thought I’d be able to drag myself away from the irrational fears and force myself into no longer being scared but that has not been the case. I’m rapidly losing hope and I feel like I’m pretty much out of options. I’m not religious, I don’t have faith, I don’t have the comfort of believing in a higher being that has a plan for me that I just have to wait out until it improves. I don’t have anything to rely on or to comfort me in these dark hours to prove that I will get better and that it’s just a matter of time. So I have to keep working, all day, every day, on trying to keep my head above water and when I can’t do that, like I can’t currently, I have to just try to prevent myself from drowning and falling further down under the water. My hope is that this anxiety will calm down again over the next few days and I’ll be able to build myself back up with the help of those closest to me who I know still believe in my ability to improve and get myself better. One thing I have in spades is determination so if anyone can do it, then I can, but right now that feels so untrue and so impossible because I can no longer think of a solution or method to improve and without that it feels like all hope is gone because I have nothing left to hope with. I have heaps to hope for but that just feels like torture, like showing a hungry child photo upon photo of plates of delicious food without giving them any way of having it. The hunger is easier to deal with and ignore if you don’t think about the thing that you want most – food. So I’m trying to ignore all of the things I’m missing out on, the things I’m desperate to do, the simple things that everyone around me takes for granted but that would make my day if I could just do them without fear anymore. I’ll keep on colouring and reviewing and keeping myself busy in the hope that it will keep my mind occupied at least some of the time and keep me distracted from the constant stream of “what if?” and “how the hell?” questions running through my head. Hopefully this crisis will pass as quickly as it’s hit me but for the moment I’m drowning and trying desperately not to sink any lower.

You Wait 15 months for One Diagnosis and then Three and a Half Come Along at Once.

Yesterday, my boyfriend and I went to see my new psychiatrist after not being seen by one since September because mine left and I never got put onto anyone else’s books. We were told we were attending to finally discuss diagnosis and I went hoping that would happen and I’d finally get a straight answer about treatment. Luckily, this psychiatrist is very thorough and seems to actually care. I met him once when I was 18 and liked him then as he was honest enough to tell me that because I’ve tried the main effective medications for my conditions with very negative effects to my health, I have medication-resistant depression and there was little to no point in trying those types of meds again in the future (sadly this information didn’t get back to my GP so when I originally became anxious I had to try taking these types of meds again before she’d try me on any new groups). The appointment was incredibly challenging. As usual, we were seen late and it turned out that slot had been triple-booked (I despair at the organisational skills of these places sometimes). I spent the entire assessment on the edge of a panic attack and cried twice because it was so overwhelming despite having taken diazepam in order to even get out of my flat to attend. I managed to get my points across though and have a tentative set of diagnoses that will be confirmed by letter within a fortnight. As a psychology graduate, I already had a fair idea that I’d be diagnosed with Generalised Anxiety Disorder as I fit all of the diagnostic criteria and have just about every symptom listed in the DSM (Diagnostic and Statistical Manual – used for diagnosing psychiatric conditions). What I wasn’t expecting was to be diagnosed with Social Anxiety and Panic as well. I always thought Social Anxiety was extreme shyness and an inability to be around people or to socialise. It turns out, it’s not that simple and that actually I fit very neatly into that box thanks to my fear of judgement from others and excessive worry about failing to meet others’ expectations or letting them down in some way (more posts in the future about this I’m sure).

I also got a big shock when personality disorders were mentioned. I have, at times, wondered if I had a personality disorder because many people with as many stress-related conditions as I’m racking up do have one. I’ve looked at the diagnostic criteria and got friends from my degree course to look as well and none of us think I fit the criteria so I really started to panic when the psychiatrist started to mention it because sadly, a diagnosis of a personality disorder leads to a great deal of stigmatisation, particularly within the medical community. Having worked with 10’s if not 100’s of patients with them, I’ve heard countless stories from them saying their doctors simply don’t believe them when they state that their conditions have worsened, they put all symptoms down to the personality disorder instead of looking at whether they have a second, third, or fourth diagnosis that needs to be made and they’re often labelled as manipulative hypochondriacs. Luckily, my psychiatrist agreed that these diagnoses of personality disorders are often very unhelpful and that in my case this would be true and I don’t fit into the criteria to be diagnosed with one because essentially I’m not severe enough. I was very relieved about this. He said, instead, that I can be described as having Adult Sequelae (seemingly not a diagnosis but a description hence the half in the title of this post). I’ve never heard of this at work or at Uni and when googling it, there is very little information, particularly for lay-people, just journal articles investigating links into drug addiction and alcohol abuse. However, how the psychiatrist explained it and what I’ve gleaned from the few studies that described it, is that issues from a difficult childhood or a pre-existing condition cause a second (or more) condition to develop as a result of the first. Because I had issues growing up, my ability to deal with stress has not developed and has left me very vulnerable to any future stress or adversity. I then develop physical or psychological conditions because of this lack of ability to cope and when I then learn to manage each condition but still not the underlying stress, I then develop a new symptom or condition each time I’m under severe stress or pressure again. It’s essentially like turning on a garden hose that has a hole in it. The water is the stress and the hole is a symptom/condition. I keep patching up the holes but then the hose bursts somewhere else (a new symptom/condition). I never manage to learn to turn off the water or re-route it somewhere else so I spend my life patching up the holes and learning to manage new symptoms and conditions without ever learning how to deal with stress or the issues from my childhood. This isn’t as severe as a personality disorder because seemingly, all of the other aspects of my personality are fully developed but my ability to deal with the negative events of my childhood and negative events that happen in my life today is still not formed. The psychiatrist has explained that I need to deal with the current issues of the anxiety disorders so I can get back to functioning and then work on learning how to deal with stress generally and combat the problems I’ve had since childhood. This means I’m going to be having a lot more therapy over the next few years and he did point out that while there is no reason to suggest I won’t improve, recovery is a much harder battle and one I’ve not yet won with any of my conditions as all those I’ve been diagnosed with still affect me to varying degrees despite my management of them.

Leading on from all of that, I’ve also finally had my treatment plan outlined! I’m to be allocated a support worker who will visit me at home and work on practical things to get me going out more. If/when that improves I will then be enrolled onto a group CBT programme at the local day hospital which I will attend with the support worker. After that, I may well be enrolled to attend the local recovery college where I will be taught about the conditions I have, how they work and what can be done to manage them. I’m not sure how much use that part will be given that I already have a psychology degree where I extensively studied these conditions and have not only worked for a total of 11 months with patients with these conditions but have also heavily researched them since becoming unwell myself but if I get well enough to attend then I’m certainly willing to give it a go to see what it’s all about and whether there’s anything new and useful I can pick up. After all of that, my level of functioning is meant to be a lot higher and I will then be assessed by a psychotherapist who will advise me about what long-term therapy I need to have and I’ll hopefully be referred to a highly skilled therapist from there for treatment which is likely to need to last 12-18 months.

So, I now have three and a half shiny new diagnoses and I’m still in shock about it all. I was so worried that I was going to be fobbed off again without knowing what’s wrong with me and what’s caused my life to turn upside down for the last 15 months. I’m pleased I now know officially what’s wrong with me, that I’m being offered treatment and now have a plan of what’s going to be offered and what we’re trying to tackle first, but naturally, now the worry is setting in about the pressure I’m likely to be under to improve, to constantly be getting better without being able to get used to any slight increases in functioning (there will be a lot of these in between being virtually housebound now and having a normal life where I can work and socialise). I’m worried about how I’m going to cope with a support worker when that’s the job role I was in when I became too ill to work, whether I’m going to get on with them, whether my treatment will be done at my pace or a pace set for me that I don’t get to have input into and a whole heap of other worries. The nature of Generalised Anxiety Disorder is that you worry about everything, particularly the unknown, so this is all very scary. I now have some labels that roughly describe what’s wrong with me and what I’m going through but I currently have no idea how long it may take to improve my functioning or even if the treatment plan will help. It sounds like the psychiatrist expects it to help but then he kept saying “if” so I don’t actually know what the likelihood is or what time-scale we’re looking at. I’m trying to just stay calm and take each step as it comes but such is the nature of the beast that I’m fighting that this is nigh on impossible for me to do and I’m already worrying about what if all of that doesn’t work and I’m left housebound still with another treatment option crossed off the list as not having worked. I’ll certainly be giving it my best shot and anyone that knows me offline will know how motivated and determined I am when I set my mind to something but the worries are still ever present. At least I know what conditions it is I’m fighting and have an action plan to try. Beyond that I’m just having to hope, and wait and see! Updates will follow as and when there are any. I’m still shocked and stunned that I’ve waited 15 months for one diagnosis and then three and a half came all at once.

How to Cope with Being Housebound – 8 Tips from a 14-monther

Update 23/3/20: For those looking for tips on coping with social distancing, self-isolation, lockdown and generally being indoors because of Coronvirus, please read my new and updated blog post here, written on the 23rd of March 2020. There are also lots of tips there that would be useful for those who are housebound due to anxiety as well as other mental or physical illnesses so do read that post in addition to this one as 6 years in, I’ve learnt a lot more since writing the original post below.

1. Try to get a routine

I can’t emphasise this point enough and it’s the only thing that keeps me even vaguely on track. I don’t timetable every little thing, that’s too restrictive for me but I have a basic list of things to do each day. One of the main things is get up at and go to bed at the same time each day. Try and eat at set times and maybe set yourself a tv schedule or activities at certain times so that you don’t become disorientated about time of day.

2. Get up

This is a hugely important point for anyone that doesn’t have to get dressed each day. Do it anyway! You may not think it makes much difference but you’ll be amazed how quickly your motivation disappears and your standards slip if you don’t get up properly each day. You don’t have to get dressed up, plaster yourself in make-up and curl your hair but do the basics of showering and dressing each morning (not in the evening before your partner returns from work) because at least then you’re starting your day right. When you’re out of work/sick/housebound it’s all too easy to stop caring, to stop bothering and to make your situation worse. These small things are so important to keep you functioning as much as possible so that you don’t fall into the depression pit.

3. Eat properly and regularly

This sounds obvious but despite having a lot of time on our hands, many of us really struggle at getting our eating under control. For the first 6 months of being ill, thanks to the medication I was on and sheer boredom I would just graze throughout the day. I was never properly hungry for meals because I kept snacking and I just ended up eating junk food because I felt sorry for myself and wanted to cheer myself up. This is a huge reason why Western society is becoming so fat, because we reward ourselves and cheer ourselves up with food. Food is not a reward, it’s fuel. Once it starts becoming a reward you end up on the slippery slope towards obesity. The meds I was on gave me super strong cravings for food that were so intense they’d stop me sleeping. In 6 months I managed to gain almost 22lbs. This then leads to major problems because when you’re housebound exercising is really challenging so losing the weight becomes very difficult. Trying to stay out of the fridge when you’re inside all the time requires an immense amount of willpower but take it from someone who knows, you will feel so much better if you stay a stable, healthy weight. I’ve now managed to lose 30lbs and still need to lose over a stone before I’ll be back to being a healthy weight. All of that is having to be done through food restriction because I can’t do enough exercise in my flat to be able to burn off the calories. It’s really really hard but I’m steadily losing the weight. Don’t use being out of work or being ill as an excuse to gain weight because it truly does make everything worse and it’s hard to fight the condition and boredom and weight loss on top!

4. Keep busy and learn new things

It’s all too easy to settle into a routine of waking up at noon, mooching about in your dressing gown, watching trashy daytime tv, snacking and not bothering to do anything but this is a sure fire way of maintaining and worsening your situation and state of mind. None of those things are good for your mind or soul and they’re a great way of becoming disillusioned, bored and unmotivated. Use the time you have to do something productive. Learn something new, contact friends and family, be creative – just do something! Since becoming housebound last year I’ve taught myself to crochet using youtube videos, I set up a Facebook page to sell my crocheted items and take regular commissioned orders, I started doing adult colouring, I set up this blog and very recently set up a second so that I can review adult colouring books for publishers, I regularly contact friends and family and try to arrange visits with them, I’ve been interviewed on the radio and I’ve learnt to bake lots of new things. There are days when I’m too ill to do anything and I just lie curled up on the sofa, watching tv, barely even able to make myself food or drinks, but on the majority of days when I don’t feel like that I make sure that I’m doing something useful and productive. It’s not the same as going to work or being the perfect housewife but at the end of each day I try to have something that I can show that I’ve done, something that I’ve achieved, something that I can tell my boyfriend about when he gets home from work so that I don’t feel completely useless and hopeless. My self-esteem plummeted when I had to stop work and I find it really hard to maintain my self-worth because I do just feel useless and worthless most of the time, however, being productive means that I can show myself that I’ve done something and that I’ve not wasted the day in bed. I’m not able to change lives at the moment like I hope to do in my future mental health career, but I will at least have things to put on my CV to show future employers that despite life being really tough, I still did my best to keep going.

5. Write a list of your achievements no matter how small

I always used to hate posts like this because they were full of either common sense stuff that was really obvious, or ridiculously positive bullshit (sorry Nana) that just made me want to vomit. I’m not an optimist and I’m certainly not one to look for the silver linings of the clouds that seem intent on constantly raining on me. However, I also know that I’m incredibly good at ignoring all of the good bits about myself and all of the things I achieve. Throughout being ill I’ve thought about the things I can’t do, the things that others can and are doing, the burden I have become and how useless I feel now I can’t work but this all means that I overlook all of the ways in which I’m trying, the ways in which I’ve not given up and things I do to fight this condition each day. On one of my particularly good days I managed to go to my local charity shop and found a lovely cupcake shaped cookie jar (I collect all things cupcakey) and that jar now has bits of paper in with all of my achievements on. These include managing to go to the shops, taking the bins out, standing up to people, visiting relatives, all of the things that a week after the event I’ve forgotten about and discounted because I’m still not cured and able to be useful yet. It’s not changed my life and I doubt it’ll change yours but it does make me focus a little more on each small success I have and I now have a record of all the things I’ve achieved that I can read through if I’m having a rubbish day (providing I remember the jar exists).

6. Be outside as much as possible

This sounds a little odd coming from someone whose biggest anxieties are focused on being outside and around lots of people but I’m also best placed to advise you that if you can go out then you should because being cooped up inside is unbelievably claustrophobic. If you can’t go outside, like I’ve often not been able to, then move rooms so you’re seeing and experiencing a different environment and if you can, open a door or window so that you can get some fresh air. I’m lucky enough to have a balcony so often when I can’t face going outside and being around people I’ll go and sit out there or even just sit inside next to the open door. These things really do help you feel less imprisoned which is a huge problem for those of us who are housebound.

7. Keep in touch with people and make contact

This is really important because, in my experience, when you’re out of sight, you’re often, sadly, out of mind too. When you’re newly housebound people will get in touch to see how you’re doing and offer advice or support but as the weeks and then months go by, many of these people drop off your mailing list and get back on with their own lives. It’s vital to make the effort and keep in touch with the people you care most about so that you don’t lose all contact with the outside world. It can be really hard to make contact because when you’re housebound you can’t talk about your job, or what happened last week on your commute, or that new restaurant you tried out and you may often feel that you have nothing to talk about and nothing of value to say – I certainly feel like this very regularly. Keeping in touch with others keeps you rooted in the real world though and means you can stay up to date with what’s going on in your local area, what’s happening at work in your absence and on the latest gossip about that girl you went to school with. These conversations help keep you in the loop and stop you from being totally isolated. Unfortunately, many people don’t understand what it’s like to be housebound and don’t know how to help and so they withdraw for fear that they may upset you or be rubbing your nose in it by talking about what they’re doing that you can’t. I can only speak for myself here, but I can’t think of any time in the 14 months I’ve been housebound that I’ve been anything other than grateful and interested to hear about someone else’s life. The mundane things to you are so much more interesting to us now our world has shrunk and I’m more than happy to hear about how dreadful the commute has been, how work’s been grinding you down or about the latest argument with your partner because it means that I get to share in the normal things, the everyday things, the things that make up our lives that I often no longer experience. This contact may also lead to people offering to visit and while this can be very challenging, particularly for those of us who are housebound because of anxiety, it’s always worth trying to fight the demons and have people over because in my experience it lifts my mood for hours if not days afterwards. Human contact, both physical and psychological is vital for us to thrive and when you’re housebound this contact is drastically reduced. As an extrovert, I love to be around people and can talk to them for hours each day and it’s something that has always made me thrive. Now I’m housebound, I regularly go for days where the only contact I’ll get is a 10 minute chat with my boyfriend between him getting home from work and then having to go to bed or a quick facebook message to someone. Keep in touch with as many people as you can so that you don’t become too isolated or forgotten.

8. Don’t give up – write a list of all the things you’re looking forward to

This can be a bit of a depressing activity because you’re reminded of all the things you currently can’t do and are desperate to. However, it can also be really exciting because we end up in a very special place where lots of mundane tasks that everyone else takes for granted become something we look forward to, work towards and cherish. Having your life taken away from you and being forced to live it within the confines of a few walls is really awful – it’s why we imprison criminals, it’s used as punishment and it often feels like you’re being punished or tortured when you’re housebound. But, you end up with a completely different perspective and I personally have an ever-growing list of things to work towards being well enough to do. Most people dread going food shopping each week but it’s something I’ve always quite liked doing, I can’t even express how much I’m looking forward to being able to take over the role of chief food shopper in my relationship again. I can’t wait to be able to browse in shops and take my time choosing fresh bread and comparing prices of tinned tomatoes to get the best deal. I can’t wait to be able to talk to shop assistants and train conductors, to be able to just jump on a train and visit friends and family. I daydream about spending the day at the beach, buying an ice cream, attempting to learn to run. I want to join a pilates class and go to a crochet group so I no longer have to crochet alone. Keeping all those things in sight keeps me pushing forwards and trying to improve and I’d really advise writing your own list so that you have things to look forward to and eventually, things to write down and put in your cupcake jar that you’ve managed to achieve.

Being housebound is one of the worst things that has ever happened to me and I wouldn’t wish it on anyone, but doing the things listed above gives you the best chance of staying as sane as possible and coping as best you can. These things will help you get through each day and hopefully keep you going long enough to get out the other side and released back into the outside world. I don’t have any quick fixes, no magic cures, no advice about how to stop being housebound and be able to no longer be anxious outside the house, I’m still fighting those demons and the majority of days they still win but these tips will help you retain a sense of self, a sense of achievement and stop you going stir crazy so give them a try – I’d love to know how you get on and whether you found any of them helpful.