My blog, as relatively new as it is, has always been about what it’s like to be a 42 year old man living with two debilitating mental illnesses in order to express and educate. Today I am blogging as a one off, to write an open letter to you, Hayley Williams of Paramore. It’s to thank you for giving me an experience last night that was most certainly needed, definitely a reminder of what matters to me and, for one evening, took me away from all that binds me the rest of the time. All I’m about to say is still relevant to my blog, to my conditions, but both thanks you for your role in giving me a reminder of what matters to me most in my life and a feeling that I have long forgotten.
Anyone that’s been here before will know this but as this is specifically to you, Hayley, I have anorexia and was recently also diagnosed with Asperger’s. Life is confusing for me and living with an eating disorder is really tough, especially as I am already obsessed by routine and order. Anxiety features highly in my life, so to come to a gig of any size at the moment, even incredibly small pub gigs, is something of an achievement. To come to one of the size of last night has been nigh on impossible for the past couple of years.
When the tickets went on sale for Paramore’s tour I was actually in an eating disorders hospital and I completely ruled out any chance that I would be well enough to come. Even up until a few days ago I was adamant I couldn’t do it. The routines of my eating disorders behaviours, the fear of people, crowds, large open spaces – it was all too much. But reading reviews of the Dublin, Manchester and London shows was pulling at my desire to come and see you. I knew the tickets were like gold dust but as I started to look I happened upon a tweet from someone who had one available and took it. Factually this all sounds great and calculated. It wasn’t that easy. The past few days I have swung between “I can do this” to “what am I thinking? This is stupid, you are setting yourself up for more failure and regret!” You see, this is what happens. I want to do these things but the collaborative forces of both illnesses set me up for a fall on the majority of occasions and, as a result, the majority of the time I stay home, stay in my driven routines and don’t engage the things I used to love. And if I do try? I usually fail.
But I made it. Through the heat (my word, how hot was it?!), through the fear, through the tears (yes, lots), through the shakes, I came. I’d had to ‘pay the piper’ though. I couldn’t stick to routine (I have to be coy here and protect the sensitivities of anyone struggling and not go into details of my behaviours) and in doing that I was in a pretty weakened state. But I was there on the balcony. I didn’t kick anorexia for the evening, it still was in control because I had to make compensations, but I kicked my anxiety and I did it with YOUR help. Paramore’s music, my love of it, and specifically your lyrics were enough to drive me on. At the start of the set I was still a knotted up excuse of humanity, tense, hunched up, nervous. But you changed it…
I allowed the music & performance in, or rather you forced it into me. You see, that’s your power Hayley. What you do up there is more than just perform, you deliver something into people’s lives, you enrich, you bring joy and energy and you do it all without any pretence. The way you write is from experience, it’s from within. You aren’t “painting by numbers”, you’re actually telling things as they are and that matters a whole lot because it connects. Last night I got lost in the music in a very literal and real way. For large parts of the gig I forgot about my illnesses, I forgot about my problems or, indeed, the problems of the world. I was immersed in all I loved. Music, Paramore. It was the energy I needed right there, right then. I was totally at one with Paramore and the sounds coming from the stage and it was my life source, your words my inspiration, as were the things you said between the tracks. As the show ended I actually said “no, please don’t go, not now.” I didn’t want that feeling to end, I didn’t want the reality of life to come back, because it felt SO good.
Reality. Did last night heal me? No. What it did was remind me that music can give me time out from what destroys me the vast majority of the time. Even if I have to adjust behaviours slightly and go through a whole lot of anxiety to be there it CAN be worth it to experience those sensations you gave me. Again, does this set a new trend and will I be able to do it every time? No, but maybe I’ll be able to do it more often than only 1% of the time now.
Hayley, you didn’t know that you would have this impact on someone last night I’m sure, and maybe you hear stuff like this all the time. Maybe it’s not that big a deal…but to me it matters. You helped give me an escape last night, a reminder that sometimes I don’t have to be cowed by anorexia and Asperger’s 24/7. As I say, I’m not going to be healed by it, but the soothing power of music will forever be a comfort and you definitely reminded me of that. I’ll forever love you for that, I’ll forever love Paramore for that, and I’ll forever love you for writing the songs you do. Don’t ever stop doing it. You matter, more than you will ever realise. X
Blogging. It’s not just for story telling right? It can be therapeutic I’ve been told. This isn’t going to be therapeutic, I know this already. Why am I doing this? I think, as I sit here and write this, I’m again communicating what it’s like to live with two powerful mental health conditions and what it’s like when they collide. Believe me, today they’ve had a head on collision. They sped up, hit full speed and collided with me in the middle. And now I’m suffering.
I put myself in a bubble most of the time. I know how I am and how to be in order to have as peaceful time as I can living with both anorexia & Asperger’s. There are certain situations I avoid, as much as I don’t want to. They can be engaging in things I used to love, and given a chance would still love, or doing things everyone else does that are part and parcel of life. Very recently, I dipped my toe into such a situation, one that I deliberately had avoided, and now I am paying. I won’t say exactly what it is, and I’m sorry to the one person that will know what I am talking about – but suffice to say that it’s one of those things that people do that can so often lead to so much happiness. For me I know it’s tricky, especially from the perspective of Asperger’s and would definitely need understanding & patience with my eating disorder. I let my guard down. I believed that, maybe, I could have a piece of the normal world again. The combined forces of the two A’s had a different plan.
The horrible thing when all this happens is that any control is lost, and I’ve lost it. Suddenly some infrequent behaviours creep back in and I can’t stop them. Of the ones I will allow myself to mention self harming is probably the worst and most upsetting. It’s never severe, but visible enough to remind me that the control has gone, and just this afternoon it happened. I hate it, those compulsions so incredibly strong that no amount of “me” can stop it. It takes me down all kinds of dark paths, and I go over and over how I even got to that point. It’s like the combination of the two conditions are mocking me, reminding me that I can’t or don’t deserve to have any semblance of normality, happiness or enjoyment in life. And then I start asking what I am actually living for, what is the actual point. Don’t be alarmed, I’m not “there” at the moment. But that I even get to the point of questioning means I know I am in a spin. And the eating disorder behaviours are at their worst right now, the very worst. Don’t sit there thinking I’m in a mind of “woe is me” – I’m in a mind-set of “I’m sick of these fucking illnesses, but what the hell do I do?”
The irony of all this is that were it not for the fact I live with these things I could be blogging a very different tale and my life could actually be heading for the kind of utopic bliss I dream of constantly. This is my reality: I can’t have that, and no fight can change it, at least not as ill as I am now. Still, the sun is shining and it’s warm. I HAVE to leave on a positive.
I took this picture early one morning whilst accompanying my brother on a fishing trip. It was extremely cold that morning and, as anyone who is underweight will tell you, when it’s cold you feel it a lot more than anyone else. It’s almost like the cold is literally to the bone. Anorexics are actually at a much greater risk of things like hypothermia than most, something I would have done well to remember that day. The image is significant, it captures something that I will try and explain in this blog post that I find it hard to convey and often want to. It’s something I feel almost like I shouldn’t say, especially when people are being kind, trying to encourage me to be positive, but as someone who sees things in a very black & white way I have to explain, as I also have to explain why I see the world thus.
I’ve always felt a little disconnected from the world or, rather, from people. I see how people are, how they connect, communicate and react with each other and never seem to be able to attain the same level of interaction. It has been a constant source of frustration and anguish throughout my life, often seeing me withdraw from society. In my childhood teachers would often remark to my mum at parent evenings that at break times I would prefer to sit under trees making daisy chains in a neat uniform manner than interact and play with the other children. There are two things to comment on here. Firstly, I am a creature of habit and order. I like things to be “just so”, to be in order, to be lined up. I hate being late for things, I get unsettled if things aren’t to plan, I make lists, if something is out of place I have to put it right. I’ve always believed I had traits of OCD, however during my adulthood through various issues with mental health and certainly with my battles with anorexia, I have come under closer observation by psychiatric professionals. As I’ve touched on in a previous blog I have had initial assessments for autistic spectrum disorders and it is widely accepted that I have Asperger’s Syndrome. It was quite liberating to find this out. No longer did I feel “odd”, like an outsider, the kid who was weird and deserved to be the butt of every bully’s joke. I’m just wired a little differently to most people and there’s nothing wrong with that – I just see things a little different to the majority, I react in a different way and you know what, that’s totally fine. I can live with that. If I need to line things up, if I have to arrive early somewhere and sit in the car for 30 minutes just to be sure I’ll be on time, if I have to withdraw from society for a bit, if I need to shut up for fear of not saying things correctly – it’s OK!! I am who I am. Being on the spectrum doesn’t make someone a freak, it makes them unique. Celebrate it.
I’ve gone off at a tangent – another trait. The other night I went out to a gig. It’s a rare thing, such is my heightened state of anxiety day to day, both as part of my general state of mental health currently and anorexia. I find it hard to be amongst any number of people, especially people I don’t know, and only really feel comfortable with very close family. In order for me to go to this gig I needed to invite my mum & stepdad, had they not come there’s no way I would have gone. It was a big deal to go, even with mum there I was still having doubts up until the last minute and at the end of the evening there was a point where I knew I’d reached my “point” and needed to leave without being able to say goodbye to Emi, the girl whose gig it was that I’d gone to. I hate that, I hate not being able to finish things properly.
At the end of the evening I did, as so many people do, and posted pictures and a status on social media about the gig. I understand fully, and TOTALLY appreciate that people are encouraging, supportive, well meaning and good and I really love them for it. I thank them for it too, 100%. However, there’s something I need to explain, because sometimes I come across as very negative when people are being positive and it’s because I can’t convey what the truth is versus what they might see. Social media can be a shallow form of reality. People can sometimes be whatever they choose to be there, create a persona or a life that isn’t representative of reality. I try not to do that but I think sometimes that things get lost in translation and people assume that because I might be out at something social, or that I’m taking pictures of somewhere that isn’t at home, or that because I’m baking a cake that maybe I’m doing ok or things are improving. The truth is very different. Ok, I acknowledge that going to the gig was a good thing, that actually getting out was positive, but it doesn’t mean that I am suddenly getting better. Positive comments can sometimes be seized on by anorexia and be used against me. This can be the internal dialogue:
“So, they think that because you were out you are improving. I told you that it was a mistake. You can’t get away with this sort of thing. You’re clearly not ill enough. Stay in, eat less, exercise more, do more of the things you know you shouldn’t but you know you must to keep things quiet…”
It’s unrelenting. Someone took a picture of me at that gig and shared it out. I’m smiling in the picture (my best fake smile) but I don’t look particularly healthy. Again, anorexia loved that. The inner voice of the illness was making all the right noises, glad almost that the picture was out there and reassuring me that anyone that could see it would see that things weren’t actually ok…because they most certainly aren’t. How rubbish is that? I should be able to go out, enjoy something and look forward to doing it again without all this. Instead I actually go through this process every time and it’s a long time before I do anything again because it’s so wearing. The times I fight back and try again too soon have shown that things just get worse and worse so it’s easier to just wait, but it’s a nightmare.
The point of what I’m saying is this: if I reply to your positivity and it seems I’m trying to play it down I sincerely apologise. It’s not that I’m ungrateful, quite the opposite, I love you for it. However, I’m sorry to say that things aren’t ok really. I’m glad I got out but it’s been painful, and it’s more painful now. Celebrate with me for the fact I went, that’s a great thing, but I’m sorry to say that we’re not going forward here. I want so badly to pretend otherwise but I can’t live that fantasy life, I only do black & white. Please don’t hate me for this, know that I love you for your support and please, celebrate with me that, for this time and the next, for those moments I am enduring pain to just break free of what my illness wants.
There’s a beautiful sunrise behind those twisted branches. One day those branches will be ordered in a way that I can see more of the sunrise. I hold on to that.
This picture was taken whilst I was resident at my first inpatient admission at a unit in Norwich. It was part of a therapy task to depict how we were feeling about our illness at the time. I’d just purchased my camera so I was trying out different techniques and captured this. It summed up how I was feeling then and have felt since. The hair band that I’d borrowed from one of the other patients I used to hold my thumb and little finger in place, restricting the movement of my whole hand, not allowing it to be free to do as I would naturally want it to. That’s symbolic of anorexia. Food, in reality, still holds all the appeal that it always did before the illness took hold (if you allow logic to flow) and when you’re weak, struggling to function both mentally and physically in every conceivable way, you know it’s the only medicine you need. Yet anorexia stops you. It’s your Berlin wall, it has a gun to your head, it’s the ultimate fear inside. It makes you believe that food is the ultimate poison and that you must NOT eat, that it will be your undoing and that no good can come from it. It’s all lies of course, logic allows me to be certain of that, but remember this is a mental illness. A broken leg can be legitimized by the fact it can be seen on an x-ray. Just because anorexia is mental doesn’t make it any less real or controllable and no amount of logic can stop it.
That’s what makes all this so hard, that’s what makes certain attitudes so upsetting, scarring or just downright aggravating. Sorry to go back to her, (I won’t do it again), but that’s what upset me so much about Katie Hopkins at the time. It wasn’t just the lack of empathy she showed, nor the fact that she was protecting “brand Hopkins”, it was the fact that actually her public attitude towards mental health must have been her real one. The “get a grip” attitude. Would you tell someone with that broken leg to take their cast off, chuck the crutches away and go for a run? Nah, neither would I. Anyway, KH embargo from here on in.
After receiving the diagnosis things both became very real and very serious very quickly. I was immediately signed off from work both at the insistence of my care team and my employers. My boss, to be fair to him, had been very concerned for some time and was constantly nagging me over my ‘behaviours’ for quite a while. I kept laughing his concerns off but he wasn’t stupid and he wasn’t surprised when the truth came out. I was referred onto a day treatment programme at the eating disorders unit in the town I was living in at the time and it was there that I really began to understand just how unwell I was. Again, without saying things that might be triggering, I didn’t deal the programme at all, such was the intensity of the compulsions within me, such was the grip that anorexia had over me already. I was due to be engaged there for a period of 8 weeks but I failed to stick to the guidelines (which were in place both to help begin a pathway to recovery and to protect the recovery of other patients on the programme) and was discharged after a week. It felt like I was in crisis at that point. If I couldn’t follow the treatment offered there what would happen next? I knew I couldn’t do it on my own and with nobody at home to help keep me safe I began to fear everything and anything.
My care team called me back to the unit to tell me that they were now searching for an inpatient unit urgently and, two weeks later I was admitted to that unit I mentioned in Norwich. It was here that I TRULY experienced what anorexia is capable of. From day one you are confronted with your greatest fear and not given options. That word, “medicine”, is quoted time and time again. You are reminded why you are there over and over but with compassion and understanding. Care workers sit with you, holding your hand whilst you do what to anyone else is the most natural and rudimentary thing in the world: eat a meal. You cry, you scream, you’re sad, you’re angry. You throw things, you hit out. At times you become like a crazy person. You are anything but you. Imagine this: take your greatest fear. It might be spiders, it might be clowns, it might be heights, it might be staring down the barrel of a gun even (yes, I’m not exaggerating). Now, imagine having to confront it SIX times a day ,without choice, because the only way to deal with it is to do just that, confront it. And all the time you are confronting it the same level of fear that you always feel in that situation is there. Now magnify that fear by 100. No, you’re still not close. Now imagine you would do anything you could to get away from that situation yet you know the only way to get over it is to stay, however there’s a voice in your head telling you to get away. Now take that thought and multiply it by 100 again. Still not close. I’m trying to describe it yet somehow it’s still understated. It’s hell.
I spent 17 weeks in Norwich before I was discharged. It was useful in that I gained a greater understanding about the illness and how/why I became ill. I also became a lot more aware of how hard it was to overcome and, unfortunately, I left no better than when I went in. Physically yes, I was much improved, albeit actually lighter, but my vitals were improved and my cognitive functions were a lot better. Anorexia, however, was still ruling my life and it wasn’t long before all the behaviours that I was displaying before I went there were part and parcel of life – only this time they were worse. It’s almost like I was being punished for attempting to fight back, yet another symptom of this vile condition. Within a few short weeks the care team back in my home town had decided that I needed to be back in inpatient care as both the physical and mental effects took a firm grip on me and a bed was sought.
It took 4 months to find a bed. During that time I really did get very, very ill. The physical effects of a mental illness like this can’t be underestimated. Anorexia is a killer, the biggest killer of any mental health illness there is. I know, logically, that it has the potential to kill me at any point, despite the fact that it tries to convince me otherwise. Again, you might be reading this thinking “he’s writing this and he knows it, why can’t he just stop?!” Keyword: illness. Why did it take so long? Many units just don’t have beds for men. Of the units that do they usually only have one and if that bed is empty and they’re at capacity and a female needs admitting she will be given it. I have no issue with that, I would NEVER begrudge anyone a place, especially as I know what it’s like to be waiting and, obviously, to suffer this bastard of an illness. Clearly, however, provision for male eating disorders patients is inadequate in this country, especially in view of the fact that the prevalence amongst men is on this increase. I’ve been quite vocal about this and have appeared in both the national and local press and TV.
My second inpatient admission lasted only 6 weeks and was very much designed as an intervention to my symptoms. It would have been 8 weeks but, sadly, my much loved grandfather died whilst I was there and I didn’t feel able to stay. The interruption to the symptoms lasted as long as my stay, however the behaviours started again once discharged, tempered somewhat by my understandable grief for a man who meant the absolute world to me.
So where am I at now? I think the best way to describe it is that I am living in the world with anorexia leading me by the hand. What a horrible thing to type, but that’s how it is. After being unable to work for so long my contract was finally terminated last November. Every day now is purely functional. I try and do what I need to do to survive and that’s as much as I can do. I have little energy and anorexia has me at its mercy. Do I want this? Not one bit. Do I want to fight? I fight daily just to live, but I want SO much more. In my previous blogs I talked about some of the things that I loved in my life. None of those things are there anymore; I want them back. But for now I don’t have the resources within nor the answers to find my way to control this. Things are in transition. I’ve just moved to be nearer to my mum as I’ve previously said, so my mental health care team is changing. My eating disorders care team are waiting for that to happen so that everyone can get together and work out where we go from here. I feel like I am in limbo and whilst I am the monster, anorexia, is happily doing its thing. It’s easier to let it for now, it’s almost like allowing it for the quiet life. Wow, how rubbish is that? But it won’t always be this way. Let’s see what future blogs bring.
Blogs to come will be updates about how I am, but also be about things I might read and want to talk about and to do with other mental health issues. Asperger’s and borderline personality disorder are two considerations in my make up and I’m being screened for both. As those are explored I’ll talk more about it.
Finally, thank you to everyone who has been so kind about the blog launch so far. I was nervous about doing this; you guys have made me feel a whole lot better about what I’m doing x