Irritable Bowel Syndrome

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.

Fighting An Invisible Fight

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

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

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

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

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

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

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

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

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

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

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

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

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