Awareness

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!

The Truth, the Whole Truth and Nothing But the Truth

This is an update on where I’m at, where I’ve been and where I hope I’m headed and an apology for the lack of mental health posts. Firstly, I’m sorry for the lack of posts about mental health. It’s not deliberate and it’s not what I’ve wanted but I’ve just not had anything to say on the topic. When you eat, sleep and breathe a subject, as well as suffering from it, you become pretty overwhelmed and saturated by it and while I’m hugely passionate about it still and am desperate to do anything in my power to reduce stigma and increase understanding, I’m having to learn to not do that at the cost of my own health and to stop before I burn out. I keep thinking up posts to write and getting half way through writing them and then struggling to find the words or be able to focus long enough to make it coherent enough for someone else to read. I’m also struggling because much as I’m a very open person and I pride myself on being honest, that’s not always total. I will never lie, I will never make anything up but sometimes I go quiet so that I don’t have to tell the whole truth. I find it very hard to let people in to the very depths of my thoughts and feelings and most of the time I don’t even let myself go there for fear of getting stuck or lost and not finding a way of returning and regaining control. But this means that I feel I’ve lost my way a bit with my blog. I set it up to tell you all the truth about mental illness. And not just the truth I wanted you to hear or the bits I wanted to vent about or challenge or address. My aim was to tell the whole truth. To tell you all the good bits, the bad bits, the achievements and the deteriorations, the ugly days, the real, hard, gritty bits that almost no one ever tells anyone because it’s just too embarrassing or difficult or upsetting. My aim was always to blog about those things so that you could see inside my world, see that depression isn’t always controllable and also isn’t always crying in bed all day; to see that anxiety controls every fibre of your being but that some days you manage to tame it and overcome it and do something you never thought possible and then the next day return to not functioning again.

I haven’t felt able to be totally honest recently because to me, I’ve failed. I deteriorated a couple of months ago thanks, largely, to the extreme pressure I’ve been put under by my psychiatrist to attend treatment that I cannot possibly attend. I’ve been hoping and pushing and trying to work towards it, all the while fighting and ignoring the anxiety that has now taken over completely that was telling me it was too threatening to do. Consequently, most of the progress I had made over the previous months has been lost. It’s not lost forever, I know that, but at the moment it’s out of my reach and back to being incomprehensible and inconceivable again. This has been utterly soul-destroying for me. I’m a very vocal person and I’ve talked to the people around me and my blog readers about every step of this journey through the world of anxiety and mental health treatment but the last few months I’ve got quieter and quieter about it because I simply don’t know what to say. So I’m here, being as open and honest as I can cope with to try and restore order and balance and to get back to doing what I feel I should be doing and want to be doing on my blog. I’ve written about what my conditions are like to live with, I’ve described my diagnoses, disappointment after disappointment with treatment (or lack thereof) and have previously been very honest about my levels of functioning. I kept pretty quiet about most of my achievements and I hope you’ll all forgive this. I wasn’t trying to pretend I was worse than I was, I’ve never ever lied, I simply didn’t want people using the dreaded “I” word (improvement) prematurely, and then being ‘disappointed’ if I was no longer able to do those things. I have achieved things over the past year and was going outside more often, though without any regularity, and was struggling a little less with it. I was managing to do more things on medication and pushed myself really hard to do a few things that I was desperate to do but none of these things were able to be repeated again. Each time I do something and then can’t again it feels a little bit like I’ve failed. I’m my own worst critic, I know, but I try not to get others’ hopes up prematurely because when I’ve done that in the past I’ve been berated for not trying hard enough or choosing to stay ill if I then can’t do those things again. I now describe good things as achievements rather than improvements because doing something on one day doesn’t mean I can do it again, as I keep realising throughout this period of illness. I was managing to go out more often and more easily and I was definitely making progress and heading in the right direction and now, since October, I’ve deteriorated in my ability to go outside and have only left my flat once alone in over 2 months.

So why haven’t I told you this on the blog? Why hasn’t there been a post about my deterioration, my frustration, my lack of functioning? Here I go with the honesty again – because I’m embarrassed. I didn’t want to have to face the fact that I’d deteriorated, I kept ignoring it and hoping I’d be able to go out alone tomorrow, but tomorrow hasn’t come. I kept thinking that if I just tried harder, it would happen. Ridiculous I know! I, of all people, should know by now that trying hard is not the route out of mental illness, that you can’t just will it away or hope your way out of it and yet that’s what I’ve been trying, very unsuccessfully, to do for the last 2 months. I didn’t want people to be disappointed in me for letting my functioning slide, even though it’s not in my control and hasn’t been a choice and that it slipped overnight thanks to the appointment where I was put under so much pressure. I thought people would be annoyed, or judgemental or unsympathetic because that’s the experience I’ve had in the past when I’ve been in similar circumstances and so I’ve kept quiet and not really told anyone. I’ve tried to deal with it alone and not mention how much I’m struggling and how I feel unable to do almost anything on my own. I’m still fighting, I still keep pushing through and try to ignore how insecure I feel and how incompetent I believe I am at even the simplest of tasks but it’s all there if you just scratch beneath the surface. Yesterday, for example, I made biscuits with my boyfriend and even that was difficult for me. They only contain 5 ingredients and are beyond basic to make but I still had to check every step with him, double check the measurements every time and get his advice on when they looked ready to come out of the oven. I can’t bake on my own because I get so anxious and any little problems turn into catastrophic failures in my head so I have to be babysat for tasks like this. It’s so embarrassing to me – I have a degree, I lived away from home and looked after myself for 3 years and now I’m totally reliant on the people around me to help me with basic tasks because they’re so overwhelming. In terms of going out, there’s very little to speak of. I’m still pushing myself to go to my grandparents’ and my dad’s whenever I can but these visits are more anxiety-provoking again which is so upsetting because I’d really combatted that since the summer. As for going out alone – I can’t. I try, every day but I end up physically rooted to the spot and can’t even open my front door because I’m so paralysed by fear. I do occasionally go out with someone but even that is now back to being very challenging and infrequent. It’s such a huge step backwards and I’m back to feeling imprisoned. Part of why I’ve not written about it is because I try to keep myself busy all day, every day in order to ignore how trapped I feel and how upset I am about this deterioration. I try to keep pushing through, to do at least something useful with my time and to achieve something, no matter how small. But I do feel crushed inside, so disappointed and I try to drown out the failing feeling as much as I possibly can.

So, that’s where I’m at and where I’ve been recently, with as much openness and honesty as I can cope with. As it’s New Year’s Eve and the socially acceptable (practically enforced) time of the year to look forward and prophesise about where we’ll be in future years, I’ll simply say this – I’m working my socks off, every day, to fight this condition, to one day be able to beat it. There are good days and bad days and better periods and worse periods and I’m currently struggling to see how I can get back to the level of functioning I was at 3 months ago, let alone the level of functioning I was at before being struck down by these hideous conditions. But, rest assured, I’ve done it before, and despite not having a clue how to right now and being scared senseless, I WILL do it again! I didn’t want to admit to deteriorating because I like to come across as strong. I’m regularly told I’m strong and I try to be that, to stay strong despite going through adversity, being dealt a shitty hand (sorry Nana), and not being where I want to be in life currently, but I feel weak and defeated currently and that’s the one thing that I don’t let people see or hear, but it’s the one thing that also stops me asking for help, that stops me from expressing stuff and that stops me from showing how scared I am that this will beat me. People around me seem to ‘know’ that I’ll be ok, that I’m strong enough to fight this and logically, I can see that and I know it too but deep down I don’t feel it. Deep down I’m terrified that that’s just a ridiculous, naïve hope and that this is as good as it’ll get for me. I refuse to accept that and I refuse to give up but sometimes those thoughts and worries take over and my strength gets up and leaves. That’s happened for the last 2 months and it’s why I’ve not told you all because I felt weak and admitting that felt like admitting my conditions have won.

So, there you go: mental illness – warts and all. This is an ugly post about the hideous depths mental illness takes you to, the warped thought processes it creates and the shame that often ensues. But I’m hoping it’s also got me back on track to be more open, be more honest and to really, truly tell you all The Truth, The WHOLE Truth and Nothing But The Truth about my life with mental illness. Happy New Year to all of you and thank you so much to each and every one of you for your continued support, for reading, sharing, commenting, emailing, anything you’ve done to interact with me and my blog. Having this outlet has made me feel so much less alone and has given me a platform to be able to help people which is my sole aim and purpose in life. Thank you all and see you in 2016, let’s hope there will be more posts about achievements and eventually even a post with the currently banned “I” word in the title but in the meantime I hope you’ll continue with me on my journey, the good bits, the bad bits, the ugly bits and eventually, I hope, the improvement!

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 5th or sometimes 10th. 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.

Anxiety and Depression: Eat Your Way to Better Health – A Recipe Book Review

Disclaimer – Please read this disclosure about my use of affiliate links which are contained within this post.
Today’s review is quite different but I like branching out and trying new things so here goes. This is a review of a recipe book called Anxiety & Depression: Eat Your Way to Better Health (The Medicinal Chef) which I thought was very relevant for my target audience and something that I’m very interested in myself. This book is written by Dale Pinnock and published Quadrille Publishing who very kindly sent me a copy. Now, I’ll start by stating that I’ve not changed my diet or lived off just meals cooked from this book for the past 3 months so I won’t be making any claims that it’ll change your life, cure you, or in fact make any difference to your condition because I’m simply not in a position to be able to say either way. However, I can tell you more about the book, the recipes, the layout and whether it might appeal to you or not.

As most of you will know, I have medication-resistant depression and my anxiety disorders are proving nigh on impossible to shift with meds too so I’m all for looking into other ways of helping myself. I’m not especially interested in “alternative” remedies because I’ve tried a number of them with even less success than conventional medicine and I’m not a believer of just trying anything in the hope that it’ll work. Trying things involves investing a lot of time, energy and hope into making something work for you and I’ve had my hopes dashed too many times so I really have to be persuaded into believing something might work before I’ll even consider attempting it. With that in mind, this is why I’ve not changed my diet or followed the suggestions in this book to the letter and therefore why I cannot make any miracle claims. However, don’t stop reading.

This book has a lengthy introduction about how anxiety and depression work on the brain, some of the common beliefs about where these conditions come from and the causes of them and then goes on to explain how foods can help and hinder the conditions and their symptoms. I’ve learnt during my own anxiety disorder journey that sugar is my enemy. As is alcohol. And caffeine. It took me ages to admit this to myself and I still battle with it but all three of those things make me very unwell, increase my already racing and irregular heart rate (I’m on beta-blockers to reduce and regulate this) and put my anxiety levels through the roof. I really do have to avoid them as much as possible. The information in the book explains why I’ve found this to be the case and suggests foods that can be great for stabilising your mood and your blood sugar levels so that you’re not cycling through highs and lows of energy all day with your body and mind never knowing if you’re coming or going.

I realised a long time ago that if I eat crap, I feel like crap. Don’t get me wrong, I’m not on some health kick where I eat every vegetable I can think of and ban cake from my house (even thinking about that makes me feel sick and somewhat blasphemous) but it has made me focus on what I eat and how it makes me feel. Sadly, like many people with mental illnesses, I also have IBS that in my case, seems to be almost solely induced by stress with the exception of onions which I discovered two months ago are the cause of intensely painful bloating and after months of denial and thinking that they couldn’t possibly be causing my pain because I eat them every day and don’t bloat badly every day, two days of eating accidentally under-roasted onion and having a rock solid stomach that didn’t move even when I tried to suck it in, I had to admit defeat and face the fact that onions are my nemesis that when raw make my insides feel like they’re waging war. This has made me realise that diet is important in helping to regulate and manage all of my conditions.

So, back to the book, Dale makes no claims about effectiveness and merely states that diet changes, alongside traditional forms of treatment, can optimise the functioning of the brain and nervous system. He explains how the central nervous system works and defines key neurotransmitters and the effect they can have on mental health. He then goes on to discuss in detail key nutrients for mental health, what they do and in what foods they can be found. Following this, he explains what anxiety and depression are, what happens to the body and what can be done nutritionally to help. It is worth noting that the introduction is very detailed and thorough but does take up a whopping 62 pages including quote pages and pictures. Image number 3 below shows where the recipes start in the book.

So, onto the recipes – the main reason why you’re considering buying this book. The recipes are split into sections: 6 Breakfasts, 15 Lunches, 24 Dinners and 6 Snacks and Desserts. About a third of the recipes have full page photos opposite and they’re all written in nice, clear text with a description at the top explaining which useful nutrients they contain. It doesn’t detail cooking times or calorie counts but does tell you how many servings it produces. I’ve made a number of dishes from this book including the Spiced Lentil Soup and Gorgeous Green Soup (both pictured below) and they were really easy to follow and very tasty – even the green soup of which I detest 50% of the ingredients!

This book isn’t ideal for fussy eaters like me because it uses a lot of fish, seafood and dark green veg. But, for those of you who aren’t so fussy it could be a great buy and would be well worth trying because the recipes are low fat and low sugar so not only may it help improve your mood, it may also help you lose weight. I can testify this has had a hugely beneficial effect on my own mood now I’ve lost 37lbs and counting since January (not through using this book I must point out). This book is clear and well-written, it’s very informative and explains things scientifically and uses research to back up any claims made but it’s not difficult to understand as it’s not full of jargon. As for whether it’ll help your mood, I don’t know, but it’s an interesting read that may help you gain understanding of your conditions and if nothing else, you’ll be eating some tasty grub! I’d love to hear from anyone giving this diet change a go to see if it has any effect or not and if you’d like to buy a copy of the book then head to Amazon via this link Anxiety & Depression: Eat Your Way to Better Health (The Medicinal Chef)

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.

  1. 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.

  1. 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!

  1. 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.

  1. 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).

  1. 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.

  1. 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.

  1. 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.

Now You See ME

This week is ME Awareness Week and today is ME Awareness Day so I’m here to raise awareness of the condition that I’ve suffered from for 15 years, since I was 9 years old. ME is hugely misunderstood, judged and stigmatised and so much more research needs to be done so that people like me can hopefully one day be cured. You can read more about my personal journey here.

ME is often dismissed, discounted, diminished and ignored. People pass it off as a non-serious condition that is preferable to many other diagnoses but recently it has come to light that many people who have other, arguably more serious conditions, would rather have those than ME because of the lack of understanding and treatment. When you’re diagnosed with MS people believe you, they have sympathy for you and don’t tell you try harder. With arthritis they’re aware that they may not be able to see the pain, but nevertheless if you say things hurt, there’s no need to question it. If you’re diabetic and you say you feel faint because your blood glucose levels have changed, people will do what they can to help. With ME you’re regularly questioned, tested, pushed, encouraged and often bullied. You constantly feel like you have to prove yourself and prove that you are as ill as you’re saying you are. Many people think we’re lazy, or just need to try harder but actually ME mostly affects people with a Type A personality who are extremely motivated and determined and it often takes us years to adapt to the condition and finally learn to pace ourselves so that we don’t constantly relapse.

Many people think that we’re making it up but I can promise you that we’re not. No one in their right mind would make up a condition like this and stick with the lie year on year while their life and opportunities pass them by. Anyone that knows me will tell you that I’m one of the most motivated and determined people they’ve ever met. They’re shocked that despite all of the excuses I could’ve made because of my condition that I still attended school, college and university as much as I could and got as many qualifications as possible, against the guidance of doctors and teachers. I’ve never used my condition as an excuse to perform at a lower level than I’d have expected of myself if I was well and everyone I’ve ever met with ME is the same.

This condition robs people of their lives. It takes away years and often decades and many of us never fully recover. People diminish it and suggest that we’re “just a bit tired” and that “everyone feels like that” and often then go on to joke that “maybe I’ve got ME”. We’re often dismissed when saying how bad we feel and are told “well no one ever died of ME” but that’s now known to be untrue. People have and are dying of it. It’s very rare but in the most severe cases people are dying of ME and having it listed as their sole cause of death on their death certificates. In those cases, their spinal cords are inflamed, their organs are failing and their bodies deteriorate with every new stimulus. So little is known about this condition and while promising studies are published every year suggesting a newly found cause, treatment or cure, nothing ever seems to come to fruition and help the masses. We still don’t know the cause or even if everyone with a diagnosis of ME has the same condition. In my view, it’s almost certainly a cluster of similar conditions that vary in severity and symptom-type and probably vary in cause and therefore treatment too. There are no treatments that help the majority and there is currently no known cure. There is no accurate prognosis because the condition varies so much from affecting some mildly for a couple of years and them making a full lifelong recovery, to those who are bed bound and hospitalised who eventually die, and everything in between. There is no blood test that can be used to confirm ME and diagnosis is still made through a process of elimination meaning there is a high likelihood that ME is indeed a cluster of conditions all of which have currently unknown causes.

Our condition is invisible to all but those closest to us. If you met me in the street you wouldn’t know that I have ME, you wouldn’t see the pain in my joints or the insomnia that keeps me awake til the early hours. You wouldn’t see the nausea, the headaches, the constant aching, the brain fog. No, unless you live with me, you’ll never see my condition. Even when I was wheelchair-bound I was accused of faking it because I could still walk short distances or I “didn’t look that sick”. Those closest to me can see the subtle changes and know all too well the white-grey colour my skin goes when the fatigue hits, the yellowish tinge I get when I’ve overdone it, the dark grey circles under my eyes that last for months at a time thanks to not remembering the last time I got a decent night’s sleep. Unless you look closely you won’t notice the tremor I’ve had in my hands since I was 15, or the fact that my legs feel like lead if I stand up for too long without moving, or my eyes glazing over when my brain is simply too tired to comprehend anything anymore. You can’t see my condition, but it doesn’t mean it’s not there and it doesn’t mean it’s not real.

Invisible illnesses are everywhere you look and often those of us with them are hidden away because we’re too ill to function outside our homes but when you see us on a good day and managing to smile, enjoy ourselves and have a rare day out, please don’t question us or assume that we’re making it up. You don’t know what it’s taken for us to be able to go out that day, the time we’ve spent resting, the help we had to have beforehand, the days afterwards that we may spend in bed because we’re so burnt out. The nature of ME means that we often pay the price for overdoing it a couple of days later so we’re forever doing too much without realising because our bodies don’t react immediately. This means we can do far far too much and then pay for it for days, weeks or even months afterwards. You may think we’re faking being sick but what we’re actually really good at is faking being well. We’re pro’s at putting on a happy face and ignoring the pain and fatigue and fighting our way through it so that we can attend important events, write that last essay or just be reminded of what doing normal things feels like. But you won’t see us when we relapse, when our legs give up and we have to crawl because they simply won’t hold our weight, when we have to be helped to bathe because our arms aren’t strong enough to wash or brush our hair, or the fatigue is so bad that we no longer have the energy to cry. You don’t see us when we need help getting dressed, or have to sleep in the lounge because we can’t climb the stairs, or those who are sickest who are hospitalised for months at a time and tube fed in blacked out rooms because all stimuli causes them physical pain. ME is not “just feeling tired”, it’s a cruel condition that is utterly debilitating and it needs so much more research to be done so that a cure can finally be found.

You may not be able to see my condition but I hope that Now You See ME.