Invisible Fight

World Mental Health Day 2017

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!

Advertisements

I’m Not Okay

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.

3 Years On, 3 Years of Managing

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.

Just Do It.

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.

One Step Forwards, Two Steps Back

The time has come again, where my condition has changed. It hasn’t improved. I’m reluctant to say that it’s got worse but I’ve been consistently struggling with more things for the last month so I guess I’ll have to face facts. One aspect has been improving and I’m incredibly grateful for that, I’m coping a little better with being outside. It’s quite random as to when I feel better about it and I’m never quite sure how much of it is that I’m so used to this feeling of panic and anxiety that I’m now not noticing it quite as much when I’m out, or whether the sheer desperation to be outside, to be back in the real world is giving me the motivation and drive to push through the symptoms harder than ever before, or if the symptoms actually are a bit less. Either way, I’m coping better and staying calmer when I am able to go out. Something that is really helping with this is photography. Ever since I started trying to push myself back into going out when I first got ill and became housebound I’ve been using my mobile phone to take pictures of things I like when I’m out. When you’re anxious and on high alert, you notice a lot more about the world around you than most people do so I’ll see the slight movement of a bird landing or bees pollinating flowers, this is exhausting because I’m trying to process so much information so I always come home completely exhausted and usually feel quite rough for the rest of the day but it’s worth it. Photography is helping because I have a goal and it also breaks the walk down into smaller chunks because I’m just focusing on the next photograph rather than the whole walk. I also have to keep my breathing under control or I just get a blurry mess, especially when I’m trying to use the mammoth zoom on my shiny new proper camera and get it to focus on a particularly flighty bird. It takes a lot of focus but looking at the camera screen also helps me escape from the heaps of thoughts that normally fly through my head and I’m finally able to use the heightened hearing and vision to my advantage, it’s making me a great bird-spotter! While this is proving very useful, it does come with its own challenges, having a whopping great camera attached to me does make me feel like I’m drawing attention to myself and I have very very low confidence at the moment so this is really hard to deal with. I constantly remind myself that it’s just a camera and people will obviously know what I’m doing and possibly even be jealous, but it still makes me very worried and paranoid about what they might be thinking.

As for the negative bits, well those have just been a kick in the stomach. For a few months now I’ve been coping much better with planned visits to my Dad’s and my Grandparents’ houses and I’ve been settling really quickly once I’m there but ever since New Year’s Eve when I had a big panic about going out for absolutely no reason, I’ve been really struggling again and my IBS is back with full force making it doubly hard to even say yes to any plans let alone to follow through with them. Even the thought of having to go somewhere at a specific time makes my stomach knot now. It’s just horrible. I had done so well getting myself to that point and finally becoming more comfortable and it feels like such an enormous step backwards and it’s even more frustrating that I don’t know why it’s happened or what triggered it. Even when I think about going to someone’s house, there’s no specific thoughts about what I’m anxious about, I just have this really intense feeling of dread and a knotting feeling in my stomach and if it lasts long enough I get an IBS attack because of the stress.

On top of that, I’m also getting pretty bad health anxiety. Bad to the point where I start getting imaginary symptoms of illnesses that I can’t possibly have come into contact with and I’m now getting very fearful of being around people who might be contagious with anything, even a cold, because they make me so unwell because of my other underlying health problems. Again, it’s making me really anxious and makes me not want to go out anywhere or touch anything, I’m back to being overly worried about getting food poisoning from foods that I know are cooked and uncontaminated and yet my head still makes me ask questions about it and check things are hot enough and aren’t pink, my poor boyfriend must be going spare being constantly quizzed, he’s a chef, his job is to cook all day every day and not make people sick and yet I still worry, just in case. It’s not a trust issue, I’m worse when I’ve cooked stuff because I don’t have much confidence or belief in my ability, I just seem to be permanently switched on to worry mode. Again, I have no idea why, nothing specific has happened to cause this, just 3 weeks ago I had a cold and while it wasn’t nice it really wasn’t that bad and yet I’m really frightened of getting another one.

For those of you who know me in real life, please don’t stop inviting me to things, I’m desperate to be back to how I was before Christmas even and able to reliably say yes to plans at your house, but please understand that I may not be able to say yes at the moment or may have to cancel last minute. Even writing this is making me feel sick and anxious because I just feel like I’m letting people down. I’m so worried that my family and friends will think this is about them or something they’ve done or not done and it truly isn’t. I have absolutely no idea what’s caused this and it’s doing my head in that my condition changes so randomly and unexpectedly, it’s really unsettling. In many ways I wish my condition was constant because I’d know what I could and couldn’t do and could work on improving those things instead of working for months and months to get myself to a slightly higher level of functioning, only to have it taken away again for no reason and have to start from scratch again. I never have given up and I never will but my goodness is this testing that resolve. It seems like no matter how hard I try it’ll never let up, I’ll never actually get back on my feet without the carpet being pulled from under me again. I can’t even express how much it hurts to be back to struggling this much to go to places and see people I’ve known my entire life. I hope that if they’re reading this they believe what I’m saying and that this truly is just a random change in my condition and nothing that I or they have done. I love visiting my grandparents and helping look after my Grandad and spending time with them both, I had a lovely Christmas with my dad and his partner and her family and for the first time in ages I felt settled and not at all on edge and then under a week later I was having a panic attack and just feeling like my thoughts had been taken over again. I managed to pull myself together and calm down with the help of phonecalls to two family members and actually get to my dad’s but I just couldn’t stay calm, I kept feeling more and more on edge and unable to cope, with what, I don’t know, but just this rising feeling of not being able to cope and soon after midnight I went home and spent over an hour in floods of tears because I just couldn’t hold it together any more. I got in the same state a few times over the following two days, a great way to start a new year eh?!

Since then, I’ve tried to just think it was a blip, I really thought it was at first, I hadn’t been sleeping properly and Christmas is usually a tricky time for me so I thought a few good nights’ sleep and a bit of calm and distraction and I’d be back on track, but I’m not. I’m over-emotional again and randomly crying or feeling totally overwhelmed, I can’t keep still and feel bored most of the time, I often feel angry for no reason or like I want to run or jump or scream. I’ve got so much energy inside me and yet I can’t focus on anything for more than a few minutes most of the time, I can’t plan to save my life at the moment and then I get totally overwhelmed by all of the tasks I have to do or the mess around me and I don’t even know where to start with sorting it out. I feel intensely lonely when Joe’s at work and I find the computer and even my phone really intrusive and I regularly feel like throwing them out so I don’t have to deal with so many FB notifications or crappy emails or spam calls. I desperately want to be left alone, to have contact on my terms rather than being constantly contactable, but I also hate being alone, I can’t bear my phone being switched off because I get so anxious without it, it’s a real Catch 22! So currently, I’m trying to keep busy, as best I can. Joe’s helping make meals for me and helping me plan them to make sure that I eat properly on the days he’s not here. He’s helping me organise stuff so I know a priority order for my reviews otherwise I just do random tasks on loads of them and none of them end up ready to be uploaded, and I’m trying to get on top of the chores in the flat so that they’re easy to do and more manageable, even on my bad days. It’s really hard being this incapable. I’m good at seeming ok, readers of my reviews have very little idea of the challenges I face when writing stuff or getting it uploaded. I’ve recently even gone back to feeling anxious about posting them which is why I’m hardly ever sharing my reviews at the moment because I’m so worried that people will disagree or criticise me or that they’ll buy the item based on my review and recommendations and then not like it. It’s ridiculous, I know, but it’s really hard to talk myself out of thinking and feeling this way and it’s taking a lot of encouragement to get me to post stuff because my low confidence is affecting this too.

So there’s my latest update. Hopefully I’ll have better news soon and I’ll be back to enjoying visits to see my family without feeling cripplingly anxious ahead of time. In the meantime, I shall be keeping busy as much as I can and trying to be kind to myself, and also photographing everything in sight. My mum’s been into photography for about 2 years now and she’s completely obsessed and has been trying to persuade me to get a better camera for months so I finally have and in the two or three weeks since I’ve had it, I’ve taken almost 1200 photos, a huge number of which have been birds in the trees outside my flat so luckily even on the days when I can’t venture outside, I can at least take photos of things through the window and escape from my thoughts for just a little while. Below are some of the photos I’ve taken over the last couple of weeks, I don’t really know what I’m doing with a camera yet and I have no idea how most of its features work but I’m just so excited to be using it, and outside occasionally and able to be in the world and seeing everything, even frost-covered litter, to me it’s all beautiful because I actually got to see it and I couldn’t be more grateful for those times when I get to experience the outside world because my world has, in many ways, just got that little bit smaller and more scary and I’m glad that I can at least get a glimpse of it sometimes and record that forever, even if it is a case of One Step Forwards, Two Steps Back.

Should.

Should. It seems like a harmless word doesn’t it?! Just 6 little letters. We use it all the time, all day, every day. Mostly it’s about small things like you should get an early night, you should say no to that second glass of wine, you should be getting home now. Sometimes those things are larger and more meaningful, I should go on a diet, I should get more exercise, I should give up smoking. They’re all pretty harmless aren’t they. You’ll either do it or you won’t. There are no particularly huge consequences if you don’t, you know you should do them, but whether you will or not is a different matter. However, should isn’t always a harmless word, a case of being able to choose to do or not do something. Should has some dark sides, it makes us feel guilty, it makes us feel obligated, it’s a stick we use to beat ourselves with. Should, in my view, is a word that really ought to be banned. It’s caused me more harm than almost any other word I can think of. This might all sound quite dramatic and ridiculous, you might be wondering what I’m on about, how can a word so small, consisting of so few letters, possibly cause a person any harm, it’s only a word after all. Well, for a person with mental illness, or physical illness for that matter, should causes us a lot of guilt, a lot of bad feelings, and it causes us to ignore a lot of the signs our bodies and minds are giving us that we need to stop or slow down.

I should have a job.
I should be able to cope.
I should be stronger.
I should be thinner.
I should pull myself together.
I should be happier.
I should be studying for a Masters Degree.
I should be self-sufficient.
I should be doing more.
I should be trying harder.
I should be able to go out.
I should be normal.
I should be able to control my thoughts.
I should be able to go out without medication.
I should be more productive.
I should be improving.
I should be less of a burden.

It’s a bloody long list when you look at it typed out. Now you might be starting to see why should is such a problem, because having one thing in your head that you should do is ok, but having a list longer than you can possibly remember at one time is actually really overwhelming. Should drags you down. It makes you feel bad every time you can’t do something you should be doing.

Should serves no purpose. I realised this a long time ago but have never managed to properly apply it to myself. My go-to response in my head each time I can’t do something is that I should be able to do it. I don’t allow myself to accept that I can’t, that I’m unable to, by keeping it as a should it forces me into an automatic pattern of thought which leads to me feeling like I’ve failed because I’ve essentially chosen not to do the things I should. Should leads to unhappiness, it leads to depression, to unrealistic expectations, to guilt, to shame.

Instead of should we can break things down into two categories of want and need. Instead of I should go to bed early, I might be exhausted and burnt out and therefore need more sleep and to go to bed early, or I might just fancy a bit more time in bed, in which case it’d be me wanting to spend more time in bed by going to bed early. Either way, all of the shoulds that become wants instantly stop being a demand, they instantly become something you can choose to work towards, or to put off until another day. If it’s a need then you can put more time and energy into achieving those things because you know they’re more important than the wants and you therefore possibly halve your energy expenditure because you know the difference in importance of the tasks. There are all sorts of things that in today’s society we say we should do and indeed if you followed my categorising suggestion a great deal of them would be automatically placed into need to do, but some of those become less important if the consequence of doing them is that you get ill. I recently went through all of this with a friend of mine, she’s feeling very overwhelmed and knows she needs to change something but all of the things she does are things she feels she should do. When I broke it down with her she could only identify 2 things in her life that were wants, the rest were needs. Sadly, as someone whose life was turned upside down and almost all of the shoulds and needs turned into can’ts, I know this simply isn’t true, no matter how it looks. There are a few basic needs in life and as a psychology graduate I’ll actually show you this in a well-known diagram called Maslow’s hierarchy of needs. This hierarchy is brilliant and explains life so well. You have to achieve the base layer before being able to move up a level, the ultimate goal being self-actualisation where one feels happy, content and fulfilled, it’s not about winning the lottery or never having to work again, it’s about having all of your basic needs met and being content in the world and with yourself. This is something that mentally ill people really struggle with. Personally, I’m stuck working towards the Safety level because I don’t psychologically feel safe due to having an anxiety disorder, when I’m well I’m usually working towards the self-esteem level, again, difficult to achieve when you have depression.

maslows-hierarchy-of-needs

So back to the friend, we all have obligations in life and these feel really important, but the fact of the matter is that if you dropped dead tomorrow, or became instantly housebound like I did, the world still carries on without you. Almost none of the things you feel you should or even need to do would get particularly disrupted, people would just work around it either until you came back or you’d be replaced. This isn’t a fun concept and it’s not one that most of us, including me, are very keen on, we like to feel special and important and like we have a place in the world that no one else can fill and while emotionally that’s very true, physically it’s almost certainly not. When you’re off sick for a week, your company doesn’t fall apart, they call in a temp or other people work extra hours, something changes and the work gets done anyway. My workplace didn’t fall apart without me, as far as I’m aware, it’s still a fully functional hospital that’s still treating and saving the lives of the most severely mentally unwell people in our community. While I did make a difference in my job, I was replaceable. However, your health is not. You may feel like you should, have to, need, to do things, but most of these things would get done without you. What you really do need to do, is look after yourself and actually those are the only things I would say are acceptable shoulds, and even then, they’re actually needs. The biggest one for me is that I need to keep myself as well as possible. Within that are lots of little things which I need to do in order to keep myself as well as possible, these include communicating with people, trying not to take on too much, eating properly, showering every day, getting dressed every day, and getting enough sleep. These are all needs. These are all things that if I don’t do them, will result in me getting worse. There’s no should about it, I have to do those things. Just like a diabetic has to take insulin, I have to do those things to keep well. The rest of the stuff I should do is actually all just wants. I want to write reviews, I want to make my blog successful, I want to see people and to have a clean flat and to stop being messy, but none of those are needs, nothing awful will happen if I don’t do those things, my dust allergies might get worse, I might start getting angry emails from publishers, but if the reason I’m not doing those things is in order to protect my health then I’m doing what I need to do, the rest will have to wait.

Now this doesn’t come naturally to me. At all! I grew up being told I was selfish for saying I couldn’t do things and was often told it was just that I didn’t want to or couldn’t be bothered. I’m having to relearn that sometimes you have to put your own needs first and that it isn’t selfish to do that, it’s self-preservation and no one else will do it for you. I’ve always had an extreme sense of loyalty, a strong desire to do the right thing and because of that I have placed huge levels of pressure on myself and kept myself to impossibly high standards. This is all well and good but when you’re ill, you simply can’t do the same things you always could, you can’t do everything and yet that niggling should in the back of your mind keeps on telling you that you can, you just won’t. And then you’ve failed, again. And again. And again. Because the shoulds will keep on coming, the more ill you get, the longer the list of things you should be doing becomes and the more overwhelmed and buried you get. But what’s more important? Your health, or the rest? I’m not talking about family here or having enough money to survive but all of the things that we sign ourselves up to that sometimes need to be cut down or even out of our lives when our bodies or minds aren’t coping anymore. Most people battle on through, they ignore those warning signs and they keep on doing what they should and then often they’ll have a breakdown and then you’re forced to stop almost everything, far more than you would’ve had to do if you’d have just cut back. Sometimes even just being nice to yourself, taking the pressure of should off your shoulders, is enough to calm you down, help you see clearer and navigate your way back to being healthy again.

The media perpetuate this idea of should in our lives, you should all be dieting, you should all have perfectly tanned skin, white teeth, fantastic thin bodies, you should all be married with children, as a woman you should be the perfect housewife, business woman and mum, you should do workouts and cook from fresh every day, you should think positive and drink wheatgrass. Should is truly all around us and it’s very hard to even notice let alone break free from it, I’ve certainly not managed it yet. You might be wondering why I’m writing this when I’m doing such a bad job of cutting it out in my own life, I’m a pretty rubbish role model. Well, it’s mostly because of that friend I mentioned. Because I was reminded that all of the mentally ill people I’ve ever talked to say it all the time. Way more than healthy people do. We beat ourselves with this rubbish should stick and it just makes everything so much worse. I’ve never written this blog as a self-help tool, I don’t have any solutions or even really any useful suggestions to make most of the time about recovery, I’ve been blogging for 2 years, housebound for 2.5 and I’m no closer to knowing what the answer is but I do know that being kind to yourself is never a bad thing, no one ever got worse from doing that and part of doing that is removing should from your life. I don’t know when or even if I’ll manage to remove it but I know I want to and I know I need to try. Anyone who knows me in real life will know just what a big challenge for me this is, I’ve lived by should my entire life and while I can totally see the logic and reasoning, actually implementing it is a totally different thing. I do truly believe though that if you can break down all of the shoulds in your life into wants and needs, you’ll be in a much better place to tackle them head on, to manage any conditions or symptoms you have and realise what’s actually important for your survival (and hopefully thriving too) and what’s actually superfluous. Give it a go, you might be surprised at the outcome, you know you should!

Let me know in the comments what shoulds you want to let go of and whether they’re wants or needs.

Guest Post: Words

This is the first guest post I’ve put on my blog. A friend of mine who’s been reading my blog for a while got in touch recently to thank me for voicing what she couldn’t, it meant the world to me that she did that, but also made me so incredibly sad that there are so many of you out there who don’t feel able to talk, to tell others how you’re feeling. I offered to publish a post on my blog if she wished so that her voice could be heard and this is what she wanted to say, these are her words.

Words just taste like dirt, they crumble and fall out of my mouth as I try and speak about my problems.They hurt my heart as I force them out letter by letter, sound by sound, taking each and every ounce of strength I have to be truthful and honest, not only with the person you’re talking to but also myself. If I could tell a million lies just so that I didn’t have to admit that I have a problem with depression then you know what , I probably would take that risk! That risk of being caught out.
But I can’t.
Admitting to myself that I have depression and that I have struggled for years and years dealing with suicidality and self harm is the biggest challenge that I face.  Every day I make the choice to be honest with myself and admit my feelings, that these aren’t just made up. I am actually feeling something that people, my friends and family just can’t comprehend. Letting people know what I’m thinking and feeling on a daily (I mean hourly) basis is a struggle that is up there with the best of the difficult challenges that I have face in my life.

Just the idea that I could not be believed makes me want to shut down and hide away from the world, which in turn makes me feel more depressed and think that I’m a failure, I’m a nobody.
It’s a vicious cycle and somehow there has got to be a way to stop it.

That even though I wake up every day (most of the time I’m not grateful I have in fact woken up) and tell myself that today is going to be a good day, every day there is some emotion that takes me away from that happiness. I have tried to distract myself through the mundane , admire the beautiful in people and my surroundings, but unfortunately depression doesn’t work like that. It doesn’t care, it doesn’t care about gender, race, religion and it’s time that we wake up as a society and HELP those that have been courageous in admitting that they need support. Too many people are trying to communicate yet are to be misunderstood.

If only people could step inside my brain to see and feel what is going on with me on a day to day basis then they would have a tiny inkling of how difficult it is to keep up with The Jones’, to keep that smile on your face when you don’t feel like smiling, to be “normal”. That having conversations about things that you don’t give a flying rat’s arse about at lunch time without hitting out or shouting at someone means you have succeeded with life that day.
Talking is an aspect of life that we all need to be cautious of, that taking the time to sit and chat to me about who I am as a person not a person with mental illness would be one of the greatest kindnesses that someone could show me. Sometimes all I need is a hug and someone to say to me “are you doing okay today?” or “hey, you know what, I think you’re strong, you’re courageous and you just gotta keep on fighting”. If you feel it, you should say it, no matter how difficult it could be (Life Lessons 101).
What makes me feel more able to talk is a good cuppa, a nice calm atmosphere and no pretences, no having to make up some bullshit story about why my day has been ‘good’ when it clearly hasn’t. No having to fight through the words and the friend being able to understand when my words get muddled up or they just won’t come out. Looking at me as though I am an actual person, not some dumb witted half wit that I feel like I am most of the time. I don’t need you to be negative, I need you to understand and listen. To just simply be there to let me cry it all out.
Thank you, if you can do those few things for me I will do anything and everything for you. I once read something that said the kindest people are those that struggle because they know what pain is and don’t want anybody else to feel like that, it’s true.

It’s the Little Things

It’s the little things in a relationship that most people take for granted, that they don’t notice until they’re gone. Due to my conditions, or possibly even just my personality or my life experiences, I notice these things a lot, not just in my relationship but also with family and friends. The little things are the things that keep me going, that remind me that I’m loved, that I’m important and that I matter. Everyone thinks their partner is fantastic, and if they don’t they probably should be re-thinking that relationship, every time Valentine’s Day comes around we get to see unashamed declarations of love. Now I’m not going to post some vomit-inducing essay about why my boyfriend’s the best, I don’t agree with competing about things like that or making sweeping statements, my boyfriend isn’t the best (sorry Joe!), but he is the best for me. He’s not perfect, but he’s perfect for me, even if that version of perfect does involve regularly telling him to close the kitchen bin, take down his washing or tidy, well, anything!

It’s the little things he does that make my life that little bit easier, that make my day that little bit brighter. The little things like bringing me a cup of tea in the morning when I can’t face getting out of bed. Or getting in to my side of the bed to warm it up because he knows I’m constantly cold. The little things like making me a hot water bottle or giving me his hoodie so I stay warm and even letting me turn the heating on earlier because my hands and feet are going blue even though he’s only just put a jumper on.

It’s the little things, like when he went Christmas shopping two years ago he took photos of all of the Lego displays at the Lego shop so I could see them. He collected Christmas catalogues from all of the shops I’d be interested in so I could “shop” at home. He even bought me a beautiful cake home so that I didn’t feel too left out. He sometimes gets me macarons from the market because he knows I love them but we can’t bake them in our oven.

It’s the little things, like two weeks ago when he had to return something for me at a shop near the largest local garden centre, he took 40 photos of all of the different Christmas decoration displays that I might be interested in, firstly so that I could look, and secondly, so that if I’m well enough to be taken there whilst medicated I’ll already know what’s there and be a little less overwhelmed by all of the colours and choice. It’s the things like him hunting round town in all of the shops that I normally go looking in for Christmas decorations and reporting back about what they have and what I might like and even sending me photos so I can participate. It’s the little things like when he had to get glasses for the first time he knew I’d want to help choose frames so he sent photos of him wearing his favourite 5 so I could help choose.

It’s the little things like him trying to learn about different bra styles so that he could go bra shopping for me when I changed size after losing loads of weight. It’s when he then had to return almost all of the bras because I’d told him the wrong size. It’s when he then still didn’t mind doing it all again when I lost more weight and dropped another size. Don’t even get me started on the “fun” he had trying to get me jeans! I think it took 4 trips to Asda during which we discovered that I was a size 12 not a 14 like I thought and that their jeans are totally different sizes depending on what pair you happen to pick up, even when they’re the same labelled size, colour, and style. It was him not complaining about having to return heaps of stuff to H&M because despite finding out I’m a size 12, their sizes are ridiculously small and I was therefore a 14 there so he had to make the trip twice.

It’s the little things, like when he tries to explain about my condition and what life’s actually like for me, yet again, when someone has made a thoughtless comment or asked a silly question. It’s when I start explaining something about my condition and he reminds me that he does know and shows that he understands and has listened. It’s when we’re talking about something recent and he says why he knows I found it hard and can list all of the different aspects I struggled with. It’s when he reminds me to take my medication because I’ve forgotten it again and I’m feeling rough because my heart rate is through the roof.

It’s the little things like learning what I struggle with in restaurants so that he can help choose a table quickly that will suit me so that I’m not uncomfortable, I have to face the room and not have my back to it, I prefer being in a corner or against a wall so I feel safe, I can’t be near doors or draughts and I find mirrors really distracting if I can see myself in them, he knows all of this and also knows that I hate taking ages to choose a table because people end up staring at you. He also knows exactly what food I like and will help me choose when the menu is totally overwhelming and I feel like crying because I no longer know how hungry I am, what I fancy eating, and can’t even process what’s in each dish despite reading the sentence three times in a row.

These things all probably make me sound like a princess, and an absolute nightmare to live with but it’s fairly even, I also do plenty of things for Joe too and while a lot of the things Joe does are centred around my condition, when I’m well I do need a lot less “looking after” and I’m generally the driving force in the relationship, even now.

Today is our anniversary, 5 years together, and neither of us ever thought we’d be together for this long because we’re so different in personality and also in our likes and interests, but fundamentally, our morals and life goals are pretty similar and we’re striving for the same things. We’re a team and we work together, we never realised how important that would be or that we’d be tested quite so much so early in our relationship, I got ill just 2.5 years in and we’d been living together for 6 months. It’s been a real challenge and continues to be so but we try our best to work together and fight it, the little things in each day help us to do that. We laugh when he accidentally triggers a mini panic attack by moving too quickly near me on one of my flinchy days, we joke that I’m his pet because he has to feed me, shop for me, and “water” me, we’ve even jokingly considered getting our flat licensed for marriage so we can possibly get married before I’m 50. It’s the little things that help you get through the most difficult times, the big things help too of course but it’s the little things people do that have such huge importance. I don’t think many people realise what these small things mean to me, you may not even realise you’re doing them, or you may not bother because you don’t think it’ll make a difference, but trust me, these things make a difference. Every comment, text, email, phonecall, visit, chat, invitation, card, gift, anything really, is appreciated, I must be one of the most easily pleased and grateful people on the planet because I really do appreciate everything people do for me and I truly do notice all of the little things from the frequent “likers” of my FB posts, to the people who message me first, the regular commenters on my FB page and blog posts, to the people who offer to get things I need from the shops before they visit. Life is much happier when you notice these little things, especially when your world is quite small and not filled with the big things and gestures that most people hope for or expect. When you’re ill these little things are what keep you going and the more you notice them, the happier you are and the more you notice more little things, it really does spiral. I’d thought of a few little things that Joe does for me that I was grateful for but just in the process of writing this post I must have at least doubled that just in the time it took to write this because I thought more and more about the nice things he does.

I always love interacting with all you lovely readers so what little things are you grateful for? I’d love to know in the comments section below and make sure you tick the box to be notified about replies to your comment as I always do reply and that way you’ll know when I have! I can’t wait to read your Little Things.

Things I Wish You Knew

Following on from my post in July that focused on my response to the trending hashtag #ThingsIShouldHaveSaid, I got thinking more about my life. There are things I wish I didn’t have to say, and have never felt able to say, but things that I wish people knew so that they understood better, could have more empathy, and could realise just what a toll it takes being this ill for this long. So here’s my list of #ThingsIWishYouKnew, feel free to add your own in the comments, I’m always interested to hear what’s going on in other people’s heads whether it be related to a condition or not.

I feel like a failure, almost all of the time.

I’m scared I won’t get better.

I’m desperate to make a difference and I’m worried I won’t.

I don’t know what to say or what to talk about anymore, I don’t feel I have anything to add.

I second-guess myself all the time.

I’m sorry if my constant apologising is annoying but I genuinely am sorry if I’m at all difficult to be around.

I worry all the time that people are just tolerating me because they feel bad for me.

I’m scared.

I don’t know who I am anymore.

Sometimes I wonder if this is all I’ll ever be.

I don’t know who I want to be.

I no longer recognise the person in the mirror.

I don’t feel like the person in the photos.

I don’t recognise my thoughts anymore.

I dissociate regularly and often have very poor memory or concentration because of this.

I miss you.

I miss me.

I have trichotillomania – when I’m really stressed I pull out my hair. I’m so embarrassed by it and by how I look and I hate that it’s so obvious to everyone but I can’t help it. Almost no one mentions it now but I know people must be wondering why I have huge gaps in my eyebrows and eyelashes and I wonder if I’ll ever look “normal” again.

Periodically I get tempted to try medication again because I’m just so desperate to find a solution and I keep hoping that maybe this time it’ll be different and it’ll help.

I can’t tolerate change. I say I can, I try my best, but almost every change I have to deal with is extremely difficult to handle and often causes me significant anxiety.

I feel guilty all the time. About being a burden, being boring, being irritating, letting you down, and so much more. I feel guilty about all of it and spend hours trying to work out how to make it up to people.

I never feel good enough.

I hold myself to impossibly high standards.

I’m lonely.

If I spend too long thinking I panic and become overwhelmed so I constantly have to keep busy, often doing multiple tasks at once in order to drown out my thoughts.

My anxiety is starting to show on my face. I spend so long stressing and worrying that I end up frowning or stiffening up my face and now I’ve got lines across my forehead and above my nose which are becoming permanent even though I’m only 25.

I’m scared I’ll never fully recover.

I often wish I didn’t exist.

I often wish I could disappear and leave no memory of me so that my family and friends could get on with their lives and not worry about me or have to look after me anymore.

I struggle with basic tasks and feel extremely embarrassed about it because I simply don’t have the capacity to plan things properly anymore.

I’m scared of getting better and the pressure I’ll be put under to improve quickly and go back to work.

I’m scared I’ll relapse.

I’m scared I’ll put everyone through this again and that maybe next time people will be less understanding.

I question myself constantly.

I’m always looking for the reasons why I got ill and trying to work out how to get over those things so I can get better and stay well.

I spend huge amounts of time wondering why people don’t contact me, what made them stop being a close friend and what I did wrong.

I often wish I could just be invisible.

I often feel invisible.

I feel like I have to prove myself all the time

I’m sick of fearing everything and wish I could just be laid back and not care.

I spend hours most nights lying in bed unable to sleep and go to bed later than I should just to avoid this as much as possible, I even go through regular phases of dreading bedtime because of how anxious I get at night and I have to listen to audio books just to stop myself having panic attacks too often.

I’m exhausted.

The longer I’ve been ill for the more I feel like I’ve lost myself. For months I managed to stay being chatty and feeling like I had something to offer and now I’m often quiet because I don’t know what to say anymore and social anxiety just paralyses me because I feel boring or stupid.

I want to talk but I don’t know what to say.

I don’t know how to talk about being ill anymore.

I feel so overtaken by my condition now that I no longer see a line where it stops and I start, everything seems to be tainted by the anxiety and it feels like it’s killing me from the inside out.

I wish people would ask instead of guessing or assuming.

I wish people would just ask.

I desperately want my life back and to feel confident and capable again.

Why I Need to Stop Apologising

Recently, I read this article on The Mighty about a lady with a chronic illness who has vowed to stop apologising for the things she can’t do because of her condition. This really struck a chord with me and got me thinking. I spend a lot of my time apologising. Multiple times a day I’ll be thinking, typing, texting or speaking the words “I’m sorry”. But why? Why am I apologising for something that’s not in my control? That’s not my fault? That I would do anything to change but currently can’t? It got me wondering why I apologise, what circumstances illicit this, what is it I’m apologising for? Why does saying sorry come so easily to me?

Let’s break it down.

I apologise when I can’t do something. If someone invites me out and I can’t go, if someone asks something of me that I can’t do, if something has to be changed or altered in some way in order to accommodate me, I apologise. When I can’t make decisions, can’t concentrate, when I can’t pay attention, or have forgotten to listen, when I feel like I’m being irritating, or I’m repeating myself, when I’ve apologised too many times, or I feel like you’re fed up with me, when my symptoms are visible, when I’m shaking, stuttering, or unable to speak because the anxiety is too much, I say I’m sorry.

So why am I apologising? I’m apologising because I’m sorry for being difficult. For being awkward. For needing adaptations to be made. I’m sorry for the fuss that has to be made. That we’re talking about my condition – again! I’m sorry for being different. For being altered. For not being the person you gave birth to, became friends with, fell in love with. But for me, apologising goes much deeper and now serves a very ugly, nasty purpose. I’m so used to apologising for all of these things that my confidence and self-belief have now plummeted. I’ve noticed this for a number of months now. I keep expecting my self-belief to improve, for this unconfident phase to be over and to be reminded again that I do have a place in this world and that I do have things to offer, things of value. But it hasn’t passed. Instead, my apologising often now means I’m sorry for being me, and worse still, I’m sorry for existing. That’s not meant in a dramatic way, it’s also not an indication of suicidality. It means I’m sorry that my level of functioning is now so low, so intrusive, requires so many adaptations, so many considerations and alterations. It means I’m sorry I can’t change this. I’m sorry I’m the cause of all of these issues, even though I know deep down that I’m not the cause and the illness is, but the illness and me are so intrinsically linked now that I’m struggling to tell us apart. I’m no longer sure where the anxiety stops and I begin. My thoughts and feelings are so often taken over and hijacked and replaced with anxiety and fear. That wasn’t ever me, that was always the condition, but now it happens so often that those are my go-to responses and thoughts, rather than the destination I reach after a while of thinking or worrying about something. I’ve got a fast-track route to anxious thinking and it often feels like that’s becoming me. I fear increasing amounts of things, I worry more and more often about more subjects and matters and that is showing no signs of shifting. So when I say I’m sorry, I’m apologising for all of it. I’m not saying I’m sorry for the one decision I can’t make. I’m not saying sorry for the one plan I’ve not been able to commit to. I’m now apologising each time for the entire mess this period of my life feels like it’s become. It’s no longer on an incident by incident basis, it’s a blanket, cover-all apology that honestly does boil down to apologising for my existence.

This is something I’m trying to stop but it’s something that runs very deep in me. My need to fit in, to follow the rules, to be accepted and “normal” is part of why I have these anxiety disorders in the first place, it’s what helps feed the social anxiety, it’s what rules my decisions about what to wear, what to do, and how to behave. The minute I step outside that, I feel I must apologise for rebelling, for being challenging, for not fitting the mould quite as I should. It isn’t a choice that I make to step outside it. I do know that. But because the condition is inside me, because it is in my head, ruling my thoughts, it feels like it’s become me and as I’ve written before, it feels like it should be under my control. I’m aware that there are no ‘shoulds’ in mental illness, but it’s still how I judge myself and it’s still the guide that I measure myself against and use to work out when I need to be apologising for something. I know that I must stop apologising for things that I can’t do because of a condition that’s outside my control. I must because otherwise I help feed stigma. When I apologise, I accept fault and blame, I accept that it is somehow my fault, that I could have done it differently, that I chose not to. When I say sorry I admit that I’m wrong, that I’ve failed in some way, that there was a better, more right way of doing things. All of those things are stigmatising when you’re apologising for something that’s not in your control. My close family, boyfriend and best friends are starting to wise-up and can see that I’m over-apologising. They know that this isn’t right, that it’s not my fault and this is just how it is. They’re starting to pull me up on it and try to get me to stop because they understand that this isn’t in my control and apologising is just making me feel worse and is feeding the lack of confidence I feel. We’re working on it together because I don’t know where the line is anymore for when I should and shouldn’t be apologising. I’m having to relearn where the line between me and my conditions is.

This is yet another learning curve that I’m on. Another thing I’m having to figure out in the midst of the anxiety, the worry, the regular feeling of failure and letting people down. I’m now having to learn to not take responsibility for everything, to step back and realise that I deserve an apology just as much as anybody else does for all of the things I have to miss out on, worry about excessively, or change, just to be able to participate. So, I’m going to try to work on not being sorry anymore, to not keep apologising for things I can’t change or help, that a condition I’m at the mercy of affects. It makes me ill and lowers my confidence and that’s Why I Need to Stop Apologising.