Knowing what to say to someone who’s feeling suicidal can be really difficult but saying something rather than nothing could be the difference between that person being able to seek help or remaining feeling alone and worthless. Here, I talk about what helps, what doesn’t, the difference you could make and the thoughts and feelings that go alongside feeling suicidal because of mental or physical illness.
Unsolicited Advice is something many of us with mental illness and long-term physical illness experience and at best it’s an irritant, at worst, it can be damaging and harmful. As a sufferer of Depression, Generalised Anxiety Disorder, Social Phobia and Agoraphobia, amongst other conditions, I receive a lot of “advice” that’s not asked for, nor wanted, and some of this has been possibly dangerous if I didn’t have the knowledge that I do.
Living with mental illness brings many different types of days, today my depression has really taken over and rather than cover it up and film on a different day, I thought I’d show you, warts and all, what it’s like to live with and how it affects me and so many others.
Hello lovelies, friends and family have been suggesting to me for the last 3.5 years to do Vlogs and I’ve never felt confident enough or had any particular desire to do it so I’ve always stuck to just blogging. However, I’m getting a bit bored currently and really want to branch out and get my voice heard just that little bit more and video posts seemed like the best way of doing this and after a fabulous pep talk on the phone with a Uni friend today, I decided to bite the bullet and record something. It was meant to be 2 minutes of me just saying Hi, but it turned into something a lot longer and a bit more informative. Please do give it a watch and let me know what you think of it. I’m hoping to use these videos to expand more on my blog posts, to reach a wider audience and to help you see the face behind mental illness and invisible conditions. The link to the post about Trichotillomania that I mention in the video can be found here.
I originally wrote this post in October last year (2016) and never got round to posting it, therefore all of the dates and amounts of time are wrong by a year. I haven’t yet written a review of the lightbox that I mention in it but briefly, it definitely helps me, it’s not a cure but it’s significantly better than not using one and it definitely helps with my daytime sleepiness and feeling low and unmotivated, it’s still really tough going but it really takes the edge off and makes things easier.
As winter approaches, a large number of people around the world start to get a sense of dread. The nights start drawing in, it gets colder, darker, cloudier and rainier, and your mood starts to lower. For most people this time of year isn’t a problem, many are looking forward to Halloween, Thanksgiving, Hannukah or Christmas, the changing colours of the leaves, Bonfire Night etc. I look forward to the festivals I celebrate amongst those but mostly, I feel dread and this year it’s been particularly early and particularly pronounced. Most people have heard of Seasonal Affective Disorder (SAD), most of us have heard of someone we know having it and most of us aren’t exactly sympathetic about it. I’ll freely admit that as a long-term (10 years and counting) sufferer of depression, I didn’t have a lot of sympathy for people who only felt low for 3 months of the year when I got a jolly helping of it all year round. It sounded a bit like an excuse from people who didn’t like getting out of bed on a cold morning and didn’t fancy venturing out during the darker days. Oh how wrong I was! Despite having depression for a decade, I’ve never been particularly affected by the weather. I was always worse at Christmas but I’m as sure as I can be that this was due to family pressure, coursework deadlines and exam dates looming rather than anything to do with the light levels or temperature outside. I know this because come the middle to end of January, my depression would ease up just a little and I’d be back to muddling along as best as I possibly could. I also remember often being worse during any school/college holidays because I had to spend more time with my family and had less distraction and structure so weather and light levels really didn’t seem to be playing a part.
I happily went about thinking that SAD was a bit of a wishy-washy diagnosis for people who were a bit more sleepy in winter until I got ill and became housebound with my anxiety disorders 2.5 years ago. I’m now approaching my 3rd Winter of being predominantly indoors and I can safely say I’m dreading it. While I’m not diagnosed with SAD, it’s obvious to me and anyone around me that I have it now. This year it’s started kicking in earlier than ever, I’m normally safe until early to mid October but I’m already over 3 weeks in to feeling sleepy, drained and generally crap and this is unlikely to let up until February or even March. For those in any doubt, and for my cocky, accidentally judgemental younger self, SAD is not just feeling a bit sleepy. For me, it involves being barely able to wake up in the morning, even with my usual alarm, and usual amount of sleep, it’s being so painfully tired that I literally can’t face getting up and have to go back to sleep for a bit. It’s being cold. All the time. It’s also being awake for under 3 hours and then being so tired that I’m unable to stay awake and ending up falling asleep sat up and no amount of food, drink, or needing to go to the toilet will stave it off for long. It’s also like someone comes along and stuffs a huge bag of cotton wool inside my head that doesn’t shift for at least 3 months. Everything takes longer. It’s harder to think, harder to concentrate, harder to motivate myself to do, well anything! I also crave certain foods which I never crave the rest of the year, I just want to stuff my face with carbs, sugar, and high fat food, probably in the hopes of hibernating or giving myself energy to actually feel properly awake for once. My body just stops producing heat so that it doesn’t matter how many layers I wear or just how close to looking like the Michelin man I get, I’m producing no heat so the layers just keep in the cold. My feet go blue, as do my hands, my joints seize up and I ache. I find sitting up a struggle because I’m so tired but sleeping doesn’t help, I never feel any better so I just lose hours of my day to napping and get nothing done because I feel so groggy. Then the depression kicks you hard. Everything is so much harder and you start wondering what the point of doing any of it is. I know that I’ll be lucky if I get through half of the short list of tasks I’ve set myself each day which means each day I fail. Each day my to-do list gets longer because I’m so unproductive. Nothing helps, not eating, not sleeping, not drinking, not forcing myself to get things done. It’s relentless!
As you can imagine, I’m very keen to discover anything that might help with alleviating any or all of the symptoms. Sadly, most of the treatments for SAD are the same as for depression and are therefore things that I’ve already tried and that either haven’t worked, or have made me significantly worse so it’s not looking overly hopeful for my feeling better any time soon. The NHS website recommends being outside as much as possible (not particularly possible for me), sitting near windows (I do this as much as possible), regular exercise (again, not especially easy for me) and trying to avoid stress (yeah right!). More medical treatments include medication which I react very badly to, therapy that I’ve previously had and that there are months long waiting lists for and light therapy which has mixed evidence regarding its effectiveness so there aren’t any ideal options!
I hope my description of how it affects me will help other disbelievers to realise how debilitating it can be and that it’s a condition that has a long list of symptoms that are really difficult to deal with, I’ve certainly had my eyes opened after suffering from it for the past 2 years and entering my third! Various members of my family now also suffer badly in the Winter and while none of us are diagnosed, again, it’s very clear that they have SAD too. My mum very kindly bought me a light box which is recommended for the treatment (not cure) of SAD and I’m now using it, as is my boyfriend, and two other family members have them too. I’m tentatively optimistic about it as it definitely seems to be helping me and I will write a full review in a few weeks’ time once we’ve all had a longer chance to use it and decide if it’s the light or external factors that may be helping us. All 4 of us have very different symptoms, diagnoses and lives, as well as being different ages and genders so we should be a pretty good cross-section of people to test it. I’ll report back soon. If anyone is interested in reading more or testing out a lightbox themselves then below is a link to the one we’re all trying out as it’s one that’s cheaper than most while still being approved as effective and having great reviews. I have no affiliation with the company and will be (as always) providing a full and totally honest review, the link below is an affiliate link which means that a small percentage of any sales made through it will be paid to me and help towards the running of my blog, I never promote items that I don’t believe in and would never give false hope to sufferers of what I know, from my own lived experience, to be hugely debilitating conditions. If you get one then please do let me know how you get on with it and whether it helps you!
Amazon UK – Lightbox 10,000 Lux
It’s so hard to write this post, I’ve been trying to for over 2 years but I’ve always stopped part-way through because I worry that others will view my thoughts as judgements about the decisions they may make and I want to categorically state now that this isn’t the case. The thoughts and decisions I have about this are my own, about my own life, experiences and conditions, even if someone else were a carbon copy of me, I wouldn’t advise the same so please read this as my own decisions based on my own experience.
So, when are you having kids? This is a question I’ve been asked a number of times over the years, I’m sure almost every female of my age has, it comes with the territory of being 26 and in a long-term relationship. It’s amazing how little a person needs to know you to feel comfortable enough to ask you such a personal question and sadly, answering it is very personal indeed. So, when am I going to have kids? Well, the short answer is never. In fact though, there’s no short answer and no matter the answer I’ve given to people I’m usually told I’m wrong or that I’ll change my mind.
You see, planning a family isn’t so easy when you’re mentally ill. I’ve never been very maternal or had a strong desire to have children and for that I will always be very grateful. Many people when I state this look at me as if I’ve said that I hate children and all who bear them, or that I’m selfish, or I don’t have what it takes to be a mother, to put another human being first. The truth is, I’m all too familiar with doing that, in fact, I worry a lot that if I ever had a child, I’d struggle to be left with any identity at all because I’m so giving of myself to others and I can’t even imagine how much that would be amplified by that person being my own child. Anyone who knows me would describe me as caring, someone who goes above and beyond and who gives too much of themselves, this isn’t something I’m bragging about, or even something I’m proud of, it causes me a huge amount of problems because I’m so often taken for granted or taken advantage of. Imagine how I’d cope with a child when my self-esteem is such that I believe I should always come second to everyone around me?! Deciding not to have children is not a choice I’ve made for myself, it’s not for selfish reasons, in fact the vast majority of my reasons are for that child, rather than for me.
I’ve been mentally ill for 10 years, since just before I turned 16. Luckily, I hadn’t thought a great deal before that about wanting a family and I didn’t get into a serious, long-term relationship until I was nearly 21, by then, I’d decided that I wasn’t cut out to bring children into the world and therefore made this very clear to the boyfriends I had. Sadly, this isn’t a choice that many people accept as final, I’m told I’ll change my mind, that I’ll get broody, that I’ll get over my fears. Thankfully, this hasn’t happened yet and what the people saying these things don’t realise is that I have to fight quite hard to stay firm in my beliefs. I regularly waver, I consider having a family, being pregnant, having a mini me, I want to see what I’d be like as a mum, see my boyfriend be a dad, see my parents be grandparents and so much more. But I can’t allow those thoughts to take over because for me, the idea of being a mum to my own biological children is not a sensible one. There are so many reasons for this choice, one of the biggest being that I don’t want to pass on my genes as there is a large genetic component to all of the conditions I’m diagnosed with. Another, is that I’m untreatable with medication and due to having long-term depression and severe anxiety, my likelihood of getting post-natal anxiety or depression is very high and I’m yet to find a treatment that works that would therefore get this under control. I also have a lot of very severe fears that verge on phobias including needles, vomiting, hospitals, and pain. Each of these would be difficult to deal with on their own but combined they feel impossible to tackle and I therefore do everything in my power to avoid them, including getting pregnant. Mental illness is often exacerbated or even triggered by environment and therefore possibly giving my child a genetic predisposition and then having them live in a mentally ill environment is going to make them more likely to become ill themselves, something that I’m personally not willing to risk.
While I do have very sensible, logical, and robust arguments against having my own children, as I mentioned before, this doesn’t stop me from wishing it were different or regularly contemplating the idea. You can probably imagine that when people then ask me when I’ll be having children or why I don’t already have them, it’s a difficult topic to talk about. You all know that I’m very open and honest and I’m happy to have difficult conversations but most people aren’t prepared for this when they ask these seemingly innocuous questions, they don’t think about the people who can’t have children, those who are trying but not having success, those who’ve lost children, or those like me, who would love for life to be different but have made the difficult choice to not have children. Most people around me don’t understand this, most people who want kids say they wouldn’t let anything get in the way, that having kids is everything to them and even in my situation they’d still have them but you can’t possibly say this because you’re not me, you haven’t lived my life, you’ve not walked in my shoes and you don’t think about the world in the way that I do. So many people think I’m wrong for making this choice, that I’m selfish, but I’m making the right choice for me because I believe it would be selfish to allow my desire for children and to be a mother to take over the fact that I’m pretty sure that I would be bringing a disadvantaged child into the world, that I would be giving them a very difficult start in life based on mine and my boyfriend’s genetics and that I don’t want to risk that or risk feeling guilty or responsible for the rest of my life. I don’t want to make my child or children suffer and I can’t put myself through the fear or worry of knowing that it might, let alone try and get through the ordeal of pregnancy or giving birth that I’m so not cut out for. Living life with anxiety is extremely difficult, I can’t even imagine trying to do that whilst looking after a child, I’d just obsess over everything, worry over every cough or sniffle, and probably never let them out of my sight; we all know how much new parents worry, add an anxiety disorder on top of that and I’m not sure I’d do anything other than worry and panic.
However, this doesn’t necessarily mean that I won’t be a mother. I do believe that I have a lot to give, as I said before, I’m extremely caring and I would love to look after and nurture a child, but I don’t want to be biologically related to them. I really hope that one day my boyfriend and I might be able to foster children and possibly even adopt if our circumstances change and become more stable, it’s certainly something we’re working towards. I think we’d make great parents, even with my health problems, because I’ve learnt so much compassion, understanding and awareness. I’ve learnt to read people, to understand emotions and feelings and the issues that can arise if we go through adversity in our childhood and more importantly, I’ve learnt a huge amount of skills and techniques to identify those issues and change or improve them. It’s these things that make me think I could be a great mum, an understanding foster carer who could help guide a struggling child, to help them find themselves and become who they want to be and to get them back on the path to a better, happier life. I think I could love and care for a child whom I have no genetic or chemical bond with because I want to help, I want to offer a safe and stable place for them to call home, I want to be a person in their life who will never leave or knowingly let them down. There are so many children in the world who are crying out for homes, for parents, for love, and I feel that I could offer that, I just can’t for my own biological children, the world doesn’t need a mini me, it doesn’t need an extra child or two of mine, but it does need people to help those already here who are struggling and that’s where I think my place is. If I believed in God, or a higher power then I guess I’d describe it as my calling though it’s not half as dramatic or profound as that, more a realisation over the years that while I can’t face creating and bringing up a biological child, I have far too much love and care in me to never be a parent. I don’t feel that I was born to be a foster carer of an adoptive parent, not like I do about working in mental health and making a stand about that, but I do feel drawn towards it, towards helping those who’ve not been given a great start in life and to try and make that better with them. I don’t know if it’ll ever happen, I don’t know when or if I’ll ever be stable enough health-wise or financially to be able to even consider fostering, but the hope is there.
As you can see, it’s not a simple question, and it certainly doesn’t have a simple answer, it’s one of the most personal questions you can ask a person and yet so often it’s asked by strangers, in an offhand way, catching you off guard and giving you no chance to fully explain what you want the people around you to know and understand. I’ve always told people that I don’t want children, it’s easier that way, it means that I get the comments about changing my mind or being selfish but it’s easier than having to listen to people try to persuade me into having children that I don’t want, and it’s certainly easier than trying to explain that I have to work very hard to stay this strongly against having biological kids because I wholeheartedly believe that it’s in my, and theoretically their, best interests, that giving up the idea of having children is as far from selfish as I could possibly be and is actually me trying to be selfless and put them first, ahead of me. I’m not religious and therefore I don’t believe that any of this is God’s plan or destiny or anything pre-determined like that, I don’t believe that it’s God’s will for me to have children or that I’m deviating from the path set out for me, I’m using my free will to decide that procreation isn’t for everyone, we’re already in a pretty sorry state thanks to the sheer number of people populating the planet and I don’t want to contribute to that, I don’t want to add to that burden, or make myself ill, for the sake of carrying on my genes. I don’t need to be related to my children in order to be a parent or a mother, I don’t need to give birth to them in order to love them and protect them. I know that if I become a foster carer or adoptive parent, I might be in the firing line for judgement from those who might believe that I can’t possibly love my children quite as much as those who’ve birthed them, that it’s not the same if they don’t look or act like you, that you don’t have the same bond if you’ve not parented them since birth, but I simply don’t believe those things to be true and as with all of the other things I’ve received judgement about in my 26 years, I’ll fight the stigma, I’ll fight to be understood, because I may not be a mother yet, but I’ll fiercely fight as if I am one.
Today is World Mental Health Day and I’ve been umming and ahhing for days about whether I was going to post anything. The theme this year is mental health at work so I kind of opted myself out of writing anything because I don’t exactly have much to say on the matter having been out of work for 3.5 years specifically because of my mental illnesses. But, it seems like a wasted opportunity if I don’t write anything. I’ve been very good at opting out of writing things recently, I’m never quite sure what to say and then my anxiety takes over and decides that anything I might say isn’t worth saying and that no one will read it and if they do they’ll be bored or judge me or even unsubscribe from my blog and so the urge to write quickly dissipates and I go back to my reviews, watching tv or feeling a bit lost and unproductive.
I wanted to write something today because even though today is the one day of the year where the mentally ill are most celebrated, most accepted and most listened to, our mental illnesses still work their hardest to crush our spirits, silence us, and even make us feel like we’re not part of the accepted mentally ill group. That’s certainly been my experience today and has been for any awareness days or special events for at least the last year. I fall very nicely in the box of mentally ill and therefore you’d really think that today is the day I get to stand proud, shout from the rooftops and use my blog to do what I set it up for 3 years ago, to raise awareness, increase understanding, and reduce stigma. But instead, all day, I’ve felt a bit rubbish, quite low and I’ve been spectacularly unproductive. It’s 10.30 at night and I’ve not even showered or got dressed, I can’t even remember the last time I shaved my legs (it’s literally been weeks) and I’m surrounded by used mugs, bowls, plates and an empty crisp packet. You’re probably now either judging me or feeling sorry for me and wondering if I’m getting worse again, the truth is, that I’m not. I’m fairly stable currently and about the best I’ve been in the last 3.5 years but this is often my reality, I’m not tidy, I don’t have the capacity to be, I don’t keep on top of all the things I should and I’m a truly terrible housewife. Mental illness doesn’t switch off for our awareness days, we don’t suddenly become capable, functioning human beings if that isn’t our current norm, in fact today, for me, has been worse than any other days in the last few weeks, I’ve been doing a great job of showering every day, of clearing used crockery out of the lounge and getting at least a few bits done for reviewing but that really hasn’t happened today and I’ve only just realised that it’s probably because it’s WMHD and I’ve not known what to write about.
I’m afraid this post doesn’t really have a point, I don’t have a message to get across today, nothing huge to blow your mind or make you think differently. I just very much feel that I should write something and so this is it, rambly, messy, confused, very much like the inner workings of my mind. I can’t even keep my email inbox tidy, I currently have 82 unread emails, many dating back months! I’ve read all of them but I mark them as unread when I can’t deal with them immediately so that I don’t forget to deal with them later only I then get overwhelmed by how many there are, feel guilty that I’ve taken so long to respond to people or worried that I’ll offend people if I don’t want to review their books or can’t because I get so swamped. It’s such fun being an anxious person! On Thursday last week I was interviewed by BBC Radio 4 for You and Yours and the interview was aired yesterday. I told almost no one that I was doing this because I was so nervous about how it would sound. I was told by those I did tell that I should be announcing it on my blog, on my Facebook pages, emailing family, but I just couldn’t. To me, that seems big-headed, and I was terrified that I would sound awful and people would judge me and I didn’t want that so I said nothing. When I was listening to the programme I was sat colouring trying to keep myself calm and remembering to breathe. It was actually pretty good in the end and I’m really pleased with the reaction I’ve had from people since so it was most certainly worth doing but it’s a shame I had to feel so bad ahead of time. I don’t remember much of yesterday after the interview because I was still so wired and keyed up that my brain was all mushy and I couldn’t concentrate on anything I was doing well enough to actually commit it to memory, this is the story of my life, it’s why I was so worried about the interview itself because when I’m anxious I don’t know what I’m saying, my filter goes and I don’t remember things well so I could have said anything and I wouldn’t have known!
I don’t even cope well with good news most of the time, my body just gets flooded with adrenaline and I don’t know what to do with it. I end up pacing around and flapping my hands a lot, I can’t sit still and will keep getting up and sitting down, wiggling my feet, making weird noises, rocking, anything that gets some of the nervous energy out. My partner got offered a new job last week that we’ve been desperately hoping he’d get for months. I was so excited when he phoned to tell me, it was better than Christmas (and I really love Christmas!) but within an hour I was worrying that it would fall through or that he’d fail his medical for some unknown reason or that they’d just rescind the offer. He’s got his medical tomorrow and we should know very soon after that if it’s all going ahead and then he’ll finally be able to sign contracts, I’m hoping that will calm me down and my condition will stop making me think the absolute worst. I don’t even believe those things will happen but my conditions really do and so I’m forced to sit and think about the possibilities and how we’ll deal with them and what we’ll do if he hands in his notice and then ends up jobless. It’s exhausting and relentless! Anxiety doesn’t let you just be happy. This is the best news we’ve had in months, possibly years, I should be on top of the world, but instead the anxiety creeps in and takes over my thoughts. It’s really no fun.
However, in happier news, my “anxious eyes” (previous readers of my blogs will know that this is how I describe my visual hypervigilance) meant that when I went for a walk with my mum at the weekend, I was able to find some fly agaric mushrooms that we’ve both wanted to see our whole lives, hiding in some brambles that we were able to photograph. I even found a discarded horseshoe, almost entirely buried in mud which I’ve “rescued” and brought home to wash and clean up and add to my “collection” of objects from walks, it currently joins a deer antler that I found a couple of months back. I did have a panic attack whilst out because I found a spider crawling on my hand and then another on my cardigan later on but apart from that I managed well and had lots of lovely chats with my mum. Being outside is so good for me when I’m in natural places, it’s just so difficult trying to keep the anxiety at bay, I jump at every noise, I get stressed out by insects or animals getting too close to me, I hate coming across dogs which I’m terrified of, it’s a really difficult juggling act of being desperate to be outside the four walls of my flat and trying to do deal with all of the ridiculous things that being outside makes me anxious about. The photography definitely helps but it can also be frustrating because I don’t have a good attention span when I’m anxious and therefore I can get bored or move on from a subject too quickly before getting decent shots; I nearly threw things in frustration when I couldn’t get my camera to focus on most of the mushrooms we found and just ended up giving up and trudging about a bit.
So there you go, I’m not quite sure what this post has turned into, it’s kind of an update, kind of an explanation and a bit of awareness raising too. I’ll leave you with the link to my radio interview and some pictures of the mushrooms I found with my mum. A snippet of me speaking can be found at 00.43 and the actual interview can be found at 09.19 minutes in. Do let me know what you think of it!
As open as I am, I hate admitting to not being okay, to being worse at any point. I always put it off and tell as few people as possible in the vain hope that it might just go away if I don’t think or talk about it. This is a ridiculous way of thinking and behaving and yet, it’s what I do every single time. It’s not working though, it never works, and it means I have to struggle and deal with it all on my own rather than with help or understanding from those around me. So here I am, again, sadly having to say that I’m worse, that I’m not okay. You might be wondering why so many of my posts seem to be about deterioration and why so few are about me getting a bit better, I wonder this sometimes too, I think it’s because the better bits are still so challenging that it doesn’t often feel like an improvement, just a bit less bad (I know that sounds pessimistic but that’s how it feels, owing just £1000 instead of £1050 still means that you’re in debt!). I think it’s also because I’m busier and happier when I’m not as ill and I don’t immediately think to blog about that stuff, I just make the most of the things I’m finding a bit easier or become able to do because I’ve very much learnt the lesson that it may not last and that it may get taken away again.
So yes, I’m currently not okay. I deteriorated at the beginning of May and didn’t get back on track after that and then last week I got a lot worse again and am now struggling with any type of commitment or decision-making, even deciding what or when to eat is really hard now. I feel on edge almost constantly and just feel like I can’t cope. With what? I don’t know. There’s just an overwhelming feeling of not being able to cope. My IBS has also got a lot worse recently. I’ve mentioned before that it got worse at New Year, specifically the morning of any visits or trips I was making, this then got loads better for over 2 months and now it’s back with a vengeance! I’m in pain every day, whether I eat, don’t eat, or have something small, I’m in a lot of pain, suffering from terrible bloating, getting random attacks and severe toilet urgency. This then makes my anxiety worse because I worry about getting attacks, about being unable to do things and about having attacks outside my home. For those of you who don’t have IBS, you might not understand why this would be an issue but with toilet urgency I’ll have no idea I need the loo and then suddenly have a very urgent need to go and if I don’t get to a toilet within a few minutes then I’ll likely have an accident so when I’m feeling like this I’m very limited in where I can go out to and even panic about people using my shower for too long as we only have one toilet in our flat.
Unfortunately, this deterioration has also caused a bit of a confidence crisis in me. I get these every now and again and they’re really difficult to deal with, especially when the anxiety is bad because they feed each other. This deterioration has happened so suddenly and so out of the blue that it’s really had me questioning what the cause is and how and if I’ll ever get better. I’m very good at coping day to day, I plan short term and I focus on getting through today and tomorrow and this week or fortnight if I’m well enough to think that far ahead. But when the rug is pulled out from under you and you’ve got no idea why, or when it might be given back, it’s difficult not to start panicking about the future and wondering if you’ll ever be free from this. The randomness of these episodes is a constant reminder that I’m not in control, not of my condition, or of my life, that I’m at the mercy of my anxiety and the environment around me and that’s a really scary thing because if I can’t control this then who’s to say it’ll go away? Who’s to say that I’ll ever get better, ever be free of this, ever be “normal”? I mostly get through each day because I “know” that I’ll get better, I “know” that one day this won’t be my whole life, anxiousness won’t be my first thought, but during times like this I’m left wondering if that’s just denial or wishful thinking, if it’s all just my imagination and actually this is the best I can hope for. This is why I keep so busy all the time, why I’ve always got multiple activities on the go and I don’t stop, it’s why I always have the TV on, multiple social media accounts open, my phone next to me and heaps of colouring books started, because I have to move from one activity to another, to another, because otherwise my thoughts catch up with me and I just can’t let them. I can’t keep wondering if this is it because it leads me to really dark places, really quickly. If this is it then I can tell you now, I’m not ok with that, I don’t want to live like this long-term. I keep trying to kid myself that 3 years is temporary, it’s not forever, it won’t be like this always, I steer clear of listening to the voice inside my head that whispers each time “but what if it is?” because I don’t have a solution. I felt suicidal for 3 years in my teens and spent every day thinking up all sorts of horrible ways to end it all, I’ve realised since that I don’t have it in me to act on it. Many of you will think this is a good thing, I know my family are hugely relieved when I tell them this, but it’s very hard having that option taken away. Most people I know who are mentally ill have thought at some time that if it ever got bad enough, if it got just that little bit worse and even less bearable, that they’d end it all. Can you imagine what it feels like to know that you couldn’t do that? That you don’t have a way out? That you’re at the mercy of whatever happens to you because you can’t take that ultimate step to take control and take yourself out of the situation? For religious people they almost have a safety net, they believe that God will never give them more than they can handle, that they’ll never be alone, but for those of us who aren’t religious, who don’t have faith in a higher power, you can’t feel more isolated or scared than when you realise that you can’t and won’t end your own life. Those who say it’s the coward’s way out or that it’s easy couldn’t be more wrong, if it were easy I’d have done it, years ago, I wouldn’t have kept going and gone through all the things I’ve had to. I’m glad I haven’t, I’m glad I’m still here, but I’m not glad that my way out has been taken away, that I’m at the mercy of my conditions and that no matter what they throw at me, I’ll have to keep living through it.
Trying to get through each day currently is a real challenge. I don’t even want to get out of bed because it means I have to face things I don’t want to or feel able to face. I don’t want to have to see people or make phonecalls, I don’t want to deal with messages or emails. Decisions are an absolute nightmare, from when to shower, what to eat, which book to review next, to whether I should phone the doctor, go out, or visit family. My head feels so full, like it’s about to explode. I’ve had vivid, bad dreams every night for at least three weeks, I go to bed too late every night because I’m scared of shutting my eyes because I don’t want to have to live through these horrible dreams for another night. I stay up watching TV on my own, trying to tire myself out, trying to distract myself enough that maybe tonight will be different and I won’t dream that my boyfriend’s left me or that my brother’s been in an accident or that I’ve been in multiple arguments with people. I’m so terrified of failing, of letting people down, that I’m now managing to actually do those things, the anxiety is so bad that I’m unable to do things I’ve signed up to do, I’m having to cancel last minute because I’m feeling so close to vomiting or I’m rooted to the spot because I feel like I’ll collapse. I can’t cope with any pressure or demands because it just reminds me that I “have” to do things and the voice in my head screams that I can’t, that I can’t cope and then makes damn sure that I won’t be well enough to even try. It’s getting so bad that I’m considering multiple times a day just cancelling everything, refusing any more books to review, saying no to all visits or trips, and logging out of all methods of communication so that I’m not feeling bombarded by demands. But I know I can’t.
The last appointment I had with my psychiatrist has stuck so firmly with me, he said that avoidance was the worst thing I could do and would only make me worse. I know this. I know that on paper this is true, I know that avoiding just reinforces that I “can’t” do these things and will then make me question even smaller tasks but I also know that the things I’m told about how to get better just aren’t working for me. I was told that going out would get easier, it randomly does, and then for no reason it gets harder again with no pattern to it at all. I was told that after doing something once it gets easier, I can’t think of a single time this has happened. I was told that if I tell myself I can do it and that if I have positive experiences that I’ll regain functioning in that area. From day 1, I’ve pushed myself to go out, I’ve forced myself out of my ever-decreasing comfort zone, I make myself see people, make phonecalls, send scary emails, I can honestly say that almost none of it gets consistently easier. There is so little that I can do now that I couldn’t do 3 years ago. Even the photography isn’t helping as much as it was, though I’m very hopeful that once I’m a bit calmer and better able to focus I’ll be right back into it again, but even the thought of all the things I could photograph didn’t stop me being paralysed by fear this weekend and having to cancel plans for my boyfriend and mum’s birthdays. I know that part of why I’m worse is because I’ve put so much pressure on myself to be ok, to not affect other people’s plans and to be able to participate because I’m sick of things being altered for me but this time I pushed myself way too hard and didn’t manage to do any of it. I’m trying to give myself a break, to not give in to the screaming thoughts that I failed, that I ruined their birthdays (I know they’ll be furious that I’m even suggesting thinking that way), that I should have been able to do it and should have just tried a bit harder. I know that the truth is that I couldn’t have tried any harder, I’m burnt out, I feel completely crushed inside, I don’t have any energy left to fight any harder at the moment and almost all of that energy is going into just keeping swimming, keeping my head above the surface and not falling into the abyss, not giving in to the incessant worry and anxiety, not giving up altogether and just cancelling everything because I know I’ll just feel even worse, even more of a failure if I do.
You can probably see why I don’t tell people about this stuff often, because it’s scary and it’s depressing. It’s not just one deterioration, it’s not got a proper reason, it doesn’t have a time limit, and my worries aren’t limited to just this period of being worse, they drastically expand so that I’m then worrying about the future, about the rest of my life, about whether my boyfriend or indeed I can possibly cope with this for whatever length it lasts. It probably sounds like I’m feeling really sorry for myself and having a pity party and in many ways I am but I’m not seeking sympathy, I don’t want people to feel sorry for me, I just want to stop feeling scared, to stop deteriorating for no reason, and to be able to cope with normal, everyday things without wanting to just scream at everyone to leave me alone and stop putting pressure on me. I feel like a child at the moment, I’m scared of everything, unsure of myself and feel unable to commit to anything or deal with any stress or pressure. I’m trying to take pressure off myself, not give myself deadlines, have a break and get more sleep, I’ve gone back to taking my beta-blockers regularly instead of as and when I need them, I’m trying to up my fluid intake and am now taking a multi-vitamin in the hopes it might help me as I’m almost certainly deficient in things with my digestion being so poor at the moment. I’m even considering starting Yoga or Pilates videos in the hopes that it might help calm me down, get out some of my nervous energy and maybe even help my sleep. I’m doing everything I can think of to help myself, but right now I’m scared because this might go away tomorrow and I might be back to my “usual” level of functioning, or it might take weeks or even months for me to get better again, I could even get worse. I’m doing my best to stay positive, to stay busy and not to think too deeply or often about this, I’m trying to talk about it so that people around me know what’s going on and what will and won’t help but even when this deterioration passes and I go back to my “usual” level of functioning, I don’t get to just make the most of that, I’ll still be anxious every day, I’ll still struggle to go outside, to do anything remotely normal, and I’ll still have the threat of deterioration hanging over me every day because I’ve still not worked out what causes or triggers these dips and therefore still have no idea how to ward them off or even see them coming.
I feel so utterly overwhelmed, so consumed with fear and worry. I wonder when I’ll ever be okay. I wonder if I’ll ever be okay. Most of the time I can’t even explain all of this, or any of the other stuff swirling around my head, I can’t explain what or why, what the reasons are that I don’t feel able to cope, why today is different from other days and I’m rooted to the spot when I normally fight my way through. I can’t express how tired I am, how much my body aches, how uncomfortable it is to be able to feel your intestines wrenching in every direction, how it feels to be in my head and feel like your thoughts have been hijacked, like you’re no longer in control or have any say over your life. I don’t want to express how tired I am of fighting, how angry I am that every day is a struggle, that I can’t change the world like I want to or make the difference I feel I was born to make. I just hate having to face up to the fact that I’m worse, that this has happened again and that three little words are so capable of instilling fear and feelings of failure in me – I’m Not Okay.
Today marks 3 years of suffering from anxiety disorders and being unable to work or leave my house much. I’m never quite sure what to write in these posts and this one is particularly difficult to write as I’ve been so up and down over the past year, there have been high points where I’ve been able to go out on my own for up to a couple of hours whilst taking photographs and there have been real low points where I’ve been unable to leave my flat for days on end and have had to cancel visits or leave early because I’m simply not coping. In some ways I feel stronger and a little more able to cope and manage, I’m not sure what’s caused this but I do think it has a lot to do with how long I’ve been experiencing these symptoms for, after a while you do get more used to it and while you’re still suffering every day, you learn to sit with that for longer and put up with it more before it gets to the point of overwhelming you. I also feel though that I’m much more all over the place and less stable, in some ways this is good because it means the good bits are a bit better but it inevitably means that the bad bits are often worse too and more unexpected. I wrote recently that I’d been really struggling since New Year’s Eve and that lasted nearly 3 months, I think I’m finally coming out the other side of that now and tentatively I’ll say that I think I’m feeling a bit stronger and more capable again but my IBS is still kicking in every time I get stressed or have to go out anywhere even though all of these places are very familiar to me so I’m certainly not back to my pre-Christmas level of functioning yet. I think I’m gradually going off the idea of analysing a whole year at once, while it’s important to look back and to see how you’re doing in comparison to various points in time, I also find it unhelpful because a year is a very long time, especially in the world of a sick person and it’s easy to generalise and view the whole year as being worse or the whole year as being better when this wasn’t actually the case. I prefer to be realistic and break it down a bit further and that has helped me see that certain aspects are a bit better and certain aspects are the same or worse and that these often change.
So where am I at now? I’m starting to get a bit stronger and I feel a bit more resilient, though ask me on a bad day and that sure as hell won’t be the case. I often wonder how realistic my view is because on good days I wonder why I’m at home, why I’m not working and whether it’s all imagined and then on bad days I don’t even know how I get out of bed, let alone run a blog, manage any deadlines (though I’m pretty ace at missing most of those I set myself) and actually make any meals at the right time. My view of the world and myself is very changeable and very much affected by how I’m feeling at the time. Generally though, I’m pushing myself really hard and doing my best to keep challenging the anxiety and live as normal a life as I possibly can within its confines. I struggle a lot with people not understanding and I now feel like I have to explain many of my actions or not show everything because so many people think that doing something once means it was easy, fun, or that I can continue to do it. I can’t stress enough how unhelpful or inaccurate this is. When I do things outside my home they’re rarely fun or enjoyable, I have to focus the entire time on keeping my breathing under control, I need a lot of reassurance and my thoughts are always racing, this doesn’t mean I don’t have a good time but it does mean that what you might see isn’t usually representative. I’ve become a master at covering up how I’m feeling and disguising how hard I’m finding things, I’ve spent 3 years trying to manage the panic symptoms so that I rarely have panic attacks whilst out but I’ll often have them when I get home because I’ve forced myself to hold it together for too long and that energy and fear has to come out somehow. It’s exhausting feeling like this and then being misunderstood and assumed to be “better” because I’ve done something once. 3 years of being ill has taught me that doing something once, even 10 times, doesn’t mean it gets easier, it doesn’t mean I can do it every time and it doesn’t mean that it won’t get harder again. Anxiety is very random, it’s very changeable and it usually does what you least expect. Instead of telling me that I’m better or telling me that it’s great I’m going out more, perhaps you could ask how I’m feeling, ask how I’m finding it and what I’m experiencing, rather than assuming, or worse, telling me how I must be feeling. If you look closely enough, you’ll see the signs of anxiety and stress, you’ll see that I’m stiff, my shoulders are up, I’m very jumpy, my eyes are wide and scanning the room, I’ll rub my hands together and rub my legs hard to try and get out some of the nervous energy and I’ll dig my nails into my palms. The signs are there but I’m very good at covering it up by smiling and joking and pretending as hard as I can that it’s not happening and that I’m in control.
Over the 3 years I’ve been ill, I’ve learnt a few coping strategies, these have varying levels of helpfulness and success but I do have more of them to try now than I ever have. Keeping my hands and my mind occupied is really important, colouring and crochet are great for this as long as my hands aren’t shaking too much and I regularly use both to help stay calm. I have grounding stones, 2 bright blue glass pebbles, that fit in the palms of my hands that I grip onto when I’m out if I’m feeling really stressed and they’re nice and flat so I can easily put them in my pockets and no one will notice. I also try not to bite my nails so that I can dig them into my palms if I don’t have the stones. I also like to bake though I usually need a bit of moral support as my confidence isn’t very high but I love being able to make tasty things and it’s a great distraction. My newest coping strategy, as mentioned in a previous post, is photography. This is mostly great for my anxiety and helps keep me calm and focused on the present and means that I stay outside for longer (more on the benefits can be found here). However, it brings its own anxiety with it, for a start, I can’t bear being watched or looked at by strangers and having a massive camera hanging round my neck or bending down to take photos means that people notice me. It’s also difficult because I want to be able to post my photos on social media when I’ve managed to go out, I’m really proud of some of the shots I’m taking, the things I’m noticing and the things I’m doing but as mentioned above, this can elicit responses from people wrongly thinking I’ve improved or that I’m finding it easy. Sadly, this isn’t the case and while I am pushing myself harder than ever and photography is making me that bit more determined, I’m still really struggling to go out and this ranges from being scared of my door being knocked on to occasionally being able to go out alone for a couple of hours, and anything in between. I cannot plan trips out without huge anxiety for days ahead of time, often I can’t follow through with plans and even when I do, I struggle throughout. Having to go through this suffering, dealing with these symptoms every single day for 3 years, and then having it simplified into “yes, but you did it” the few times I do succeed, is very difficult to manage and to tolerate. I don’t want to be negative but I also don’t want people around me to force positivity onto me. I’m so grateful and proud every time I set foot outside my front door, whether that be to take the rubbish downstairs, or to go on a trip out, but I still have to deal with the constant stream of fearful thoughts, the flinching, the feelings of being totally overwhelmed whilst fighting to be outside because I feel like I’m going mad indoors and just have to get outside and see something other than brick walls and my possessions. Trips out aren’t split into good and bad for me, they’re a mixture of both every time, I absolutely make the most out of them and focus on the positive and rarely even talk about the bad bits (except whilst blogging) unless someone tries to force positivity onto me and make out that the whole thing was sunshine and rainbows. When I’m not dismissed you get the full picture, you know that I struggled but that I’m proud beyond words, that I’ve now got photos of every trip out, every little thing I noticed from ice-covered litter and animal bones to birds, flowers, sunsets and even deer! Those are the things I want to be able to share, to be able to show off but that I usually feel unable to do with most people because it feels like I’m not believed when I receive comments about how much better I appear to be doing.
However, in the spirit of pushing myself and trying to combat the anxiety I’ve decided to post some of my favourite photos below because I really am proud of what I’m achieving and how hard I’m trying and I don’t want to have to hide those things because of the fear of misguided comments. I’m really hoping that over time I’ll stop worrying quite so much about what other people think though this is very ingrained in my personality and something I’ve always struggled with. I wish I could just brush off what other people think and say and just do things for me but sadly, that’s not how Social Phobia works, it’s a condition that means that every confrontation, every interaction, every glance or even future event has to be analysed, worried about and obsessed over, I try to just think ‘sod it’ but I just can’t, it matters so much to me to be liked, accepted, and above all else, believed. I really am going out on a limb every time I post photos from outside my flat, it might not seem like a big deal but to me it’s akin to posting half-naked photos of myself, I feel exposed and it means that people can, often accidentally, attack me in the most damaging ways. I’ve always strived to tell the truth, but telling the whole of it is a real struggle for me. I never, ever lie but I often don’t feel able to tell the whole truth because I’m often not given the time or space to fully explain a situation and then assumptions are made that I’m improving or achieving more than I actually am. I probably sound completely mad and totally paranoid but I’ve been receiving these comments throughout my life, from the age of 9 when I first got ill with M.E/CFS and my biggest fear and hate in life is not being believed so for me the stakes are really high every time I open up enough that someone could disbelieve me.
I hope you’ll all enjoy my photos, I’ve loved taking them and am really pleased with them. One thing the anxiety is great for is anxious vision, or as I call it “anxious eyes”, it means that I notice everything around me and I know that’s making me better at photography and noticing subjects to capture. I’ve had my camera for 2 months and have already taken over 5000 photos, a huge chunk of which have been through my lounge and bedroom window of lots of birds that visit the trees outside our flat, I couldn’t be more grateful for them on the days when I can’t get outside and I’m regularly known to take 1-200 photos of a pair of birds in under an hour in the hope of getting a perfect shot. It’s a great distraction and it’s lots of fun. 3 Years On, 3 Years of Managing.
Before you ask, no, this isn’t a post about Nike or indeed anything sporty but then knowing me, you probably guessed that! Just Do It is what we all need to do when we’re considering whether to do something but aren’t quite sure whether we should or not. Just doing anything is not something that comes naturally to those of us who are anxious and being told to just do it or just give it a go is truly unhelpful, so why am I saying it?! Hypocrite? Maybe. But go with me on this. This is a specific Just Do It.
Are you wanting to compliment someone or thank them for helping you in some way but aren’t sure whether to do so? Just Do It. Are you considering emailing a blogger or commenting on something that matters to you? Just Do It. Are you wanting to tell someone you care about them or wondering how they are? Just Do It. You might be worried that you won’t express it well, that they’ll think you’re silly or that it won’t matter to them if you do it or not, I often receive messages from people saying just that, that they’ve probably not explained properly, or I must hear it all the time, or that it may not mean much. I think this too but what a lot of assumptions we all make about other people’s lives. When people message me they seem to assume that they’re one in a huge string of people that I get emails from or that they’re the latest in a long line of people who’ve commented but this isn’t the case. Even if it were, each message would mean exactly the same to me, but the truth is I receive about one or two messages a week from people thanking me for my blog, telling me the difference something I’ve done has made to their life, or telling me how much they love a book that I’ve recommended. I can honestly say that these brighten my life for hours, if not days!
Blogging is very odd, it’s faceless and feels quite anonymous even though I’ve put a face to the blog a number of times and you all know that I’m Lucy, 26, with various mental illnesses and an unhealthy obsession with colouring and buying pencil sets! But I don’t know all of you. I don’t know who’s reading, who you are, your name, your life story, your conditions, your hobbies, what mood you’re in when you’re reading this, what your reasons are for reading this, I don’t know anything about you. Writing a blog is like writing a message in a bottle and setting it off on its journey into the sea, you just write and hope for the best. I’m always a little nervous that it might reach someone on a bad day and make them feel worse, that they might follow my recommendation for a book but then hate it or that my experience may be so different from theirs that my description angers them enough that they tell me. You can probably see now why receiving messages of thanks are so important to me because I get to know a little bit about one of my readers, I hear that you’re struggling too, that I explained something you couldn’t, that you now feel less alone, that you’ve found another wonderful book to colour in or you’ve found the perfect pencils for your aching hands. Hearing from readers of my blogs makes all of this worthwhile, it gives me a purpose and spurs me on to keep writing.
It’s hard to send these messages sometimes. I often want to get in touch with people who I miss or haven’t spoken to in a while or even get in touch with artists to thank them for their work and I rarely ever Just Do It because I feel scared, worried I won’t get a reply, worried it’s silly or that it won’t mean anything and many more random worries. But, I try to think about how I feel when people send me these messages, when a friend who I’ve not heard from in months or even years gets in touch to see how I’m doing, when a reader contacts me or when someone sees something that reminds them of me and gets in touch, just because. I can safely say that I’ve never wished they hadn’t, I’ve never received a positive message that I’ve felt was silly or wasted. I’ve appreciated every single one. I’m sure most, if not all, of you are the same. Negative thoughts or opinions are very welcome to be kept to ourselves but positive things and feelings should definitely be shared. I don’t know if it’s a British thing or if it’s universal but we’re far quicker to criticise or comment than to compliment or thank others. It’s just not what we do. We suck at taking compliments too, if someone says we look nice we’ll tell the person it’s good make-up or a great hairdresser or a flattering dress that was a bargain. It’s never because we look nice that we get compliments, it’s because of what we’ve bought to alter our appearance. It’s quite sad when you think about it. Today for example, I received a wonderful compliment about my photography, I don’t think much of my photography right now so before I’d even finished reading the comment I’d already decided that it was very kind but not true, that it was all luck and nothing to do with me. In writing this post I’ve realised this simply isn’t true. This next bit would probably sound big-headed but remember it’s being written by someone with self-confidence through the floor who doesn’t often believe they have talent. My instinct to this lovely comment was to dismiss it as either luck that I got those shots or that it was something anyone could have done, but I’ve had a proper think and I’ve realised that yes, luck does have a part to play, especially in nature photography, you can’t take a photo of something that isn’t there, however, thanks to my anxiety, I do have a great knack for noticing birds that others wouldn’t, I have patience to wait and take heaps of photos knowing that just a handful will be usable, I have great vision which helps me notice the slightest of movements and I’m starting to be able to identify flight patterns and songs of birds so I can work out if they’re things I want to photograph or if it’s yet another pigeon! These things are taking time and effort and, I’ll reluctantly admit, skill. I’m certainly not going to be able to sell photographs any time soon but I can see that in just one month since getting my camera I’m already improving and learning loads and that I need to take these compliments rather than just putting it down to luck or the camera I’m using.
You might now be starting to see why it’s so important to Just Do It when it comes to complimenting people or thanking them. Many of us with mental health problems have low self-confidence and low self-esteem and we often don’t believe in ourselves or think very nice thoughts. While we may not believe things from others, or it may take time to sink in, it’s always lovely to hear those things because eventually it does start to sink in and we realise that maybe we aren’t so bad and maybe we are making a difference or do have some good qualities. Remember all of this next time you’re considering sending a message and Just Do It. It won’t do any harm, and you might just make that person’s day, certainly whenever I receive such a message it really does brighten my day and often leads to me crying happy tears because I don’t really think much of what I’m doing and it’s wonderful hearing that I can make such a difference even to just one person who’s struggling. No matter what it is that you’re thinking of sending, even if it’s been a really long time since you were last in touch, stop thinking, get writing and Just Do It.