My use of Twitter has become a day-to-day lifeline, a connect of my choosing of what my interpretation of the real world to be. Of course it’s not the actual real world, but by filtering it into my interests and passions I’ve let it become a window into the world I would want to exist in were things not as they are. This window contains three primary passions; Wolves, baking and music. Element one shows me things directly from the club and connects me to fans, people I’ve forged friendships with on various levels. Baking gives me inspiration for new recipes and interaction with people I aspire to get to be as good as. Musically I follow those acts I’m into, to keep up with new releases, their news and what they are saying. One of those accounts belongs to Lily Allen. I’ve been a huge fan of Lily since she used to promote her work on MySpace way back at the start of her career. Quite simply I love her to bits, always have & always will.
Last week I stumbled upon a tweet promoting her appearance as headliner at Southampton’s Common People festival. I had somehow missed the original announcement, not that it would have mattered. As you’ll know if you’ve followed my blog before the idea of me at something so vast is unheard of these days unless done in some way that avoids the crowds or in some madcap fit of bravery that takes me immense of amount of time to get over and often regretful of. There’s also the preparation for such a thing. I’d need strength. That means eating. That’s something that really has been a feature of my life that has got less and less lately. Like, chronically so. Apologies for highlighting that but I’m flagging it because things are so bad with it recently that it makes what’s coming up even more remarkable.
Sometimes I tweet things as they come into my head, not really giving it thought. It’s almost as though my thoughts play out in my tweets subconsciously. There have been times when I’ve gone back the next day and deleted things because I haven’t actually meant to put them out there. It’s probably a dangerous thing – step away from Twitter Simon! That’s what happened when I replied to Lily Allen that evening on that tweet. Here’s what I said:
This was very much one of those moments where my thoughts were aimlessly playing out. Yes, I did tag Lily in it, but as she has nearly 6 million followers and the tweet I was replying to was days old it was just a flippant tweet, my thoughts expelling themselves from my mind to the twittersphere. Sometimes it works to stop me getting too down about something I wish I COULD do but feel unable.
Right after tweeting that there was a fifteen minute gap as I got ready for and into bed. By the time I had Lily had followed me back & DM’d me. Remember, I’ve been a massive fan of hers for years, and although I’ve only been to see her once (pre-illness) I certainly own all she’s done and, as many of my friends will attest to, have always talked about my love for her & her music. Suddenly she’s following me and sending me a message. Not only that, in clear recognition of the issues I have she’s offering to sort me out with backstage passes! I lie there in the dark of my room, staring at my phone in disbelief for a few minutes, somewhere between blind panic, disbelief and total joy. Could I do this? Would my head let me eat in order to get the strength? Could I manage getting through the crowds to even get backstage? Could I find someone to go with bearing in mind my daughter (who is also a massive fan) was away this weekend? What was I even thinking? It’s Lily Allen! You love her to bits Simon! OF COURSE YOU’RE GOING!!! To hell with eating if it comes to it, to hell with crowds (keep your head down, they aren’t there), this is happening.
You see, the demons were all there, and they were all there fighting me as hard as hell for the 4 days between that tweet and the actual festival itself. Anorexia told me I had to be XYZ weight in order to have something to eat to be physically up to it. That meant not a morsel passing my lips until Saturday morning. I was already resigned to that even before all this, because that’s how things have been lately. Anxiety, there’s little I can do about. It is what it is, even at the best of times. Sometimes I can suck it up, most of the time I can’t. When anorexia is at its worst it’s harder to overcome, so those demons were really hard to battle. There wasn’t anyone to take with me – this really was going to be a “solo flight.” However, to see Lily Allen perform, from the relative safety of the backstage area first and a segmented viewing area, and to meet her? I dug in hard. You see, it wasn’t just about that, this wasn’t JUST about wanting to see & meet Lily…
Kindness & compassion are important in this world. I try to show it in as many ways as I can. It’s limited, I acknowledge that. There’s only so much I can do given my problems, but I do what I can. If it’s to bake a cake for someone to cheer their day, I’ll do it. If someone wants a birthday cake made I will, and don’t even THINK about paying me for it. I love to bake, I love to put a smile on someone’s face. If someone is struggling in some way and can’t make ends meet I will give what I can, and if I think they won’t take it, again, I will bake all I can and hand it over. Hell, I might not be able to eat but I LOVE knowing that others are, and if they enjoy what I’ve produced then I love it even more! So, when someone shows me kindness & compassion I’m bowled over, humbled beyond words, and often overcome with emotion. The thing is, as I’ve said before on my blog, I don’t feel worthy. The things in my mind that keep me as I am convince me that I’m not worth anything, that I don’t deserve good things. Lily’s act of compassion, of kindness, of understanding – it made me stop. She doesn’t know me, at least she didn’t at that point. Yet she was willing to do what she did because she recognised that I wanted to see her play and found it tough. She wanted me to be there & enjoy it as best I could. She felt I deserved it even if I didn’t. I still can’t comprehend it even now. But how amazing is that? That anyone should do anything for me makes me bewildered, but this is Lily Allen – a woman I’ve admired for so long.
So Saturday came. I ate something. My head beat the shit out of me. Sod it. So I drove down. I listened to lots of music whilst I did to shut my head up as best I could. I got to Southampton. It scared the crap out of me haha! I found my way to the festival. It scared the crap out of me again. There was a bit of a mix up over the access I had and I spent the first hour and a half rooted to the same spot having a mini(ish) panic attack. There were tears. And there was vomit. However, in what I now know as true Lily style, she sorted things out and there I was. Backstage. There were a couple of the All Saints girls milling around. There was James (the band) fresh from a rousing performance.
And there was Lily, getting ready to go on stage. There was also her partner, Dan. A truly stupendous guy who talked to me for quite some time and had some really thought provoking things to say to me. One thing he said has been going around my head ever since: “You can’t love Lily if you don’t love yourself first.” I mean, I CAN love Lily regardless, and on meeting her (coming to that) I can only say as a person I only love her even more now. But I became aware through that conversation that I really don’t love myself and I’m not sure I ever have. It’s something I guess I need to work on & lies at the root of many things. But I do love Lily, and to be honest I love Dan for saying that too. Lily & Dan are well suited I would say, she’s lucky to have him and vice versa. As for Lily, she’s just the most gentle and caring person I’ve met for some time. She checked I was ok after my initial panic. She made sure we had that picture before she went on stage and we had a little chat after she’d performed. It really was obvious that she cares. This was no PR stunt or something that she was going to get anything out of – this was pure humanity. It makes me sad that she gets flack in the media and stick off people on social media, because this is the person I felt she was all along. A humanist, someone with a huge sense of morality but also a whopping dose of compassion. There’s no grey areas, no agendas. Lily Allen is real, honest. What you see is what you get. A truly remarkable, driven, caring and amazing person. It’s time she was given the credit for who she is and what she stands for and not always be taken to task on every utterance. One thing is for sure, she’s made a huge difference to my life in the past week.
Has all this made me better? Let’s be honest here, no. I’m still as bad as ever on the anorexia side of things and taking a huge hit for having done all this on the weekend. The anxiety is still there over all the same things. Would I do it again? Yes, of course. The thing that’s good out of all this is that Lily has made me feel that maybe I am worth something and that when I put my mind to it I can overcome things in isolation. Dan has also shown me that I really need to start to put some value on myself. I guess they both have shown me that, collectively.
I’ll end this with a deserved and shameless plug. Lily has a new album out on 8th June called No Shame. Having heard a lot of it at the festival I can honestly say this will be the best album she’s done so far – it’s flippin’ insanely good!! Bloody buy it, you WON’T be disappointed. If I can’t give her anything else but my thanks, it’s at least this much. Lily – thank you. You are, and will always be, a 24 carat gem of a woman x
First of all, Happy New Year. It’s only right I say that as I am forever humbled by the fact that anyone comes here to read my blog, and I know they do from the stat reports I get. So thank you, and I hope that you had a good festive period. Mine was challenging in the ways you would expect it to be, although having faced a couple of Christmases already with an eating disorder I was mentally prepared and just accepted that, for me, it was easier just to treat the key days from the food perspective as any other. Self preservation works and allowed me not to get bogged down in the fact that I didn’t feel able to eat & drink as others do. I did enjoy my time with mum on Christmas day however, and visiting my dad on Christmas Eve. Presents? A plethora of recipe books by the likes of Nigella, Paul Hollywood, Nadiya and Mary Berry. Perfect – the baking bug is biting as hard as ever and my creative juices are flowing freely. Oh yes, that strange paradox is in full effect. I don’t question it, I embrace it and let it roll. No, I still can’t engage in benefitting from the end result but I don’t care; those that do are giving me the feedback I need to improve, that’s what matters. Judging by said feedback I’m doing just fine. As to other matters I’m afraid it’s a case of the same old situation.
I continue to be at a very low weight, in fact small amounts continue to drop. I still can’t eat any more than previously mentioned and other habits remain, although walking is a lot less purely down to my weakened state. The eating disorders services are now engaged again but it’s not clear yet what help they are prepared to give. I’m due to meet them soon to discuss the possibility of inpatient treatment. I personally feel this is the best way and will keep me safest, out of harms way, and will enable me to stand a chance at recovery this time. I feel ready, more than I ever have before. There are reasons now, I have plans & goals beyond. The baking, that passion for it, there are things I would like to do with it, but I need to be on that recovery road first and there is no way I can be on it as things are right now. Community care won’t be enough as I am so I hope they will hear me when I meet with them.
Next week I start seeing someone in relation to my Aspergers. I’m not sure what to expect exactly but it will be good to make sense of it all and understand the condition better. It’ll also be good to learn better ways of handling situations that I currently find difficult; things like social interaction, confidence, etc. I’ll ALWAYS find those things hard, autism doesn’t go away, but it’s finding ways to cope & deal with things more effectively. I’d love to find ways to deal with some of my sensory issues too – especially dogs barking!! They drive me mad – a cross I’ve carried all my life and never spoke of. I have to bite me arm to cope with the swell of frustration that builds inside me when dogs bark. Babies crying too. OMG. Understand, I know these are things that are natural but my brain can’t cope with the sensory reaction it produces. I either have to get away from the source or literally grit my teeth or self sooth/harm. It’s an odd thing. Anyway, the sessions start next week. Assessments first.
I did have some stuff before Christmas I got very upset/angry about. The DWP cut my PIP from enhanced to standard on the one area that causes most issue, that around food related problems. They cut 2 points from preparing meals section. Ridiculous. I’ve read a lot about how they are penalising MH applicants and have targets on appeals. Well, I’ve appealed. Needless to say even cutting points in that area has a direct impact on the illness itself. “Ha, they think you aren’t ill enough. Well…let me show you…” Fucking illness. Bloody DWP. If only they could stay here for a week and see what it’s like to be me, to be anyone with anorexia. Look, none of us WANT to have to claim, but when you are too unwell to work you have to rely on the state. I’ve paid in all my life until all this started, so I’m entitled to the help. I shouldn’t have to fight, and I shouldn’t have to prove just how ill I am.
Onto happier things. Wolves are riding high in first place at that top of the Championship by 12 points. Giddy isn’t the word!! Ok I haven’t been able to go much. One of the unfortunate things about my season ticket is that the seat is in the disabled area where the roof doesn’t come over and if it rains you get wet. My body won’t fight any infection so being cold is one thing, being cold and wet quite another. I’ve been avoiding going to rainy games of which there have been a number lately. I did ask if they would move me but that would have involved a cost – but they have agreed to switch the seat on a match by match basis if the forecast is bad now, so I should be going again soon. Love you Wolves!! It’s so good to be supporting them right now, not that I ever wouldn’t, but boy we’ve had some frustrating years!!
Hopefully next time I blog it’ll be news of an inpatient admission. I need to get some control. I fear I’ll be stuck in this perpetual hamster wheel otherwise.
Up the Wolves!
It’s World Mental Health Day. I’ve put a picture of a goat lying down and you’re probably wondering what the hell that’s got to do with anything. You’d be justified in wondering, I would too. I took this picture whilst on holiday last week in Zakynthos. This was the first proper holiday I have ever been on, the fact I was there was a minor miracle in itself, but as I meandered through the lonely hills of the island, away from the hustle & bustle of the tourist town of Alikanas where I was staying, I came across this goat. He was lying in a barren bit of land, attached to a pretty run down small holding, looking pretty glum in his own world. He wasn’t aware of the hardships of the island, the fact that everyone on it works 7 days a week just to make ends meet, that the Greek economy is such that the potential of this island can’t truly be met. The financial infrastructure isn’t there to back it up. The potential is there to see (there are some absolute beauty spots), but the people are letting it go to rack & ruin and seem to be just ticking over, leaving vast areas spoilt by unsightly rubbish and abandoned building projects. The goat reminded me of my own state of mind. He was locked in his own misery, just there with no apparent purpose (although probably used for milk), whilst the world around him carried on doing what it did, whether that be to tick over or, as we are more fortunate than the Greeks, to progress. I’m digressing at the moment – Asperger’s – I’ll get where I’m going shortly.
An update on my health. I’m still where I was, although an admission. I’ve developed bulimia. I use it to keep myself in check when anorexia isn’t enough, when I’m not strong enough to restrict. Wow, I can’t believe I’ve just typed such a weak minded thing, but that in itself is an indicator of just how bad I am. So, anorexia, bulimia, borderline personality disorder and Asperger’s – it’s little wonder that my latest letter from my psychiatrist again uses the word “complex” to describe my case. My weight is low, my strength is rubbish and my mind weak. My mood is stable but best described as “numb” and I’ve got little appetite for life at the moment. I have no goals to speak of and there are no treatment aims being talked about. The eating disorders team have made no contact since putting me on this “break” and I can’t see that changing. Heaven knows what will happen. Maybe the posts will stop one day – and that will be a sign that the whole thing ended badly. So yeah, that’s that. Oh – Wolves are doing well though. There has to be ONE positive, and that’s one that will always make me smile!!
So, World Mental Health Day. Why do we have to have one day when attention is brought to this issue? Should awareness not be something that should be accepted by now? Is it a case where for one day everyone is made aware that people suffer with mental illness and tomorrow people forget? Does the media forget that for people like me and the millions across the world with a mental illness there are 364 other days where this is STILL part of our lives? And WHY is this still needing to be highlighted in the way it is? Why is there still this stigma? Do we have a World Broken Leg day? Because that’s a normal, that’s something you can see so therefore it’s legitimised. Well let me tell you something. Have a look at me if you ever can. My mental illness has physical repercussions. I’d post a picture of myself in just my underwear if I didn’t think it would be triggering to some people just to show that there are physical consequences to some of the mental illnesses I suffer from. Would it get the message across to some of the ignorant then? Of course it would. BUT IT SHOULDN’T TAKE THAT!
Piers Morgan tweeted this earlier:
“On #WorldMentalHealthDay, a reminder that statistically, this is the safest & healthiest time to ever be alive in recorded history.”
The ignorance in that one tweet sent me to boiling point. He’s probably right, from a physical perspective. From a mental health perspective he is absolutely wrong. Social pressure, world pressure, means that we are probably living in the WORST time for mental health. People don’t realise it, but it’s a fact. How do we address it? It’s up to people with the most influence to ensure that they are using that influence for good, to be more aware of the impact they have on society and on people. And then we need to look at ourselves and how we are toward each other. We need to look within our schools and how children are toward each other. We need to look at how we conduct ourselves and interact with each other online. We almost need to start a collective think tank and start again, we need to learn how to be kinder to one another and see that these brains of ours are not indestructible. They’re fragile, they need looking after. WE need looking after as people. It’s not just our bodies that need maintaining, it’s our minds too. Piers Morgan’s tweet COULD be all encompassing if we learned just to look after each other better.
World Mental Health Day itself needs to be handled better. It’s good that people in the public eye are used to highlight the issue, but what about the people that REALLY suffer each day. The Royal family are all over social media today, pop stars, TV & film stars, all talking about the good work that people do or their own experiences…but what about people who live with these chronic conditions day in, day out? Give us a voice, give us air time. Come and see the reality of how this really is. Only then will acceptance of the legitimacy of mental illness come to the fore.
Finally, I saw Jeremy Hunt speaking at a ‘Time To Change’ event. This man is the Health Minister responsible for the vast cuts in the NHS, not least cuts in Mental Health care. It’s insulting that he is even invited to speak at such events, let alone that he even turns up. The government continues to cut funds, yet more and more people suffer, more and more people need treatment and more and more people die. To say it’s not good enough is an understatement. It has to change. One more death is a death too many. Jeremy Hunt & the government have so much blood dripping from their hands that I’m surprised they are able to grip a door handle. I couldn’t look myself in the mirror each day knowing I was depriving people of the care so many of us need. It has to change…and we must keep pushing them for that change.
Anyone viewing my social media accounts over the weekend might be forgiven for thinking that things might have been improving radically. I say radically given my last blog entry and because both my Facebook & Twitter accounts show a few days that reflect a life that I lost two years ago. However, as I hope people have come to know, the truth behind the pictures can often be very different. These mixed messages that I unintentionally throw out can be dangerous, triggering, and can cause me a lot of harm. They are the reason why I have taken the decision to stop posting on Facebook and limit my Twitter activity. I’ll stop short of removing the accounts altogether as some people contact me through them exclusively, but it’s safer not to post. Allow me to explain my thoughts and clear up the mixed messages.
My weekend began on Friday with a long standing planned trip to Lincolnshire with my brother. I had paid for a short break for his 40th birthday at a fishing lake complete with a stay in a luxury lodge right next to the lake’s edge. This all felt safe to me, my brother isn’t the sort that would pressure me in regard to my eating disorder behaviours and the location was remote enough that I wasn’t going to get overawed by interaction with other people. The lodge and settings were idyllic and, despite the weather not being ideal, our stay was good. I won’t pretend my behaviours were in check, they were as bad as they ever are, and in some respects when pushed were a little worse. However, they didn’t interfere with the stay and we had fun, did plenty of fishing, relaxed and my brother seemed to thoroughly enjoy himself.
We left on Sunday morning and whilst travelling back some seriously leftfield events occurred. There was one thing that saddened me and left me confused. Someone I had been growing close to recently suddenly hit reverse after I believed we were on a level playing field and scrambled my brain. Asperger’s. Relationships of any kind. It’s a toxic mix. I need to stop it. Anyway. I was aware that my favourite festival, Barn On The Farm, had been taking place all weekend. Last year, after 4 consecutive years of attending, I had missed it whilst being in the unit in Norwich. Had I not been, of course, I wouldn’t have been in any place to have gone. Even so I found it distressing that I was missing a festival that I adored whilst so many of my friends and favourite bands & artists were performing. It’s such a unique festival and my experience of it is, in itself, always unique. I’ve invariably been involved with one or two of the acts performing and have been able to have access to all areas. I’ve therefore been able to hang out with and meet some of the big names that have played there. It’s amazing, it’s like one big family year on year.
One of my favourite bands was playing this year, as they have for a number of years now, Amber Run. I had a ticket to see them in September but certain plans mean that I will no longer be able to see them. With this in mind suddenly I had a deep yearning to go to the festival that afternoon. All the fear and anxiety was replaced by a desire to be immersed by their music. Maybe it was that memory of being filled by Paramore’s music a couple of weeks ago, by forgetting everything else and letting the music carry me. How could I get through the rest of the day with 2000 people there? There was sure to be plenty of people there I knew. Maybe that would be enough to get me through and then I could rely on the music. However, I didn’t have a ticket. There had been lots of people selling some before, maybe someone had an unsold one going still. I began to look. Just as I realised this was going to be fruitless a friend on Facebook posted a picture from the festival. He is a sound engineer and had been working for a band there the previous evening. I asked if he was still there and he told me he would be doing the sound for Amber Run that evening and offered to get me in. I will forever be in his debt.
So, later that afternoon I was there. Barn On The Farm 2017. Was it easy? Not one bit. As I walked down that track in the picture I was an absolute bag of nerves. There was one event that made it a LOT worse. I seldom talk about this publicly, in fact I’ve never mentioned it on this blog and I never will after this. One of the first people I saw was my daughter. This was extremely hard. She stopped talking to me almost 3 years ago and has nothing to do with anyone on my side of her family. She has made it known that she doesn’t want people close to her to know that I am anything to do with her and I respect her wishes. It hurts, and there’s not a day goes by when I don’t wish that things were different. Seeing her sparked a whole wave of emotion and I thought about leaving immediately, but she saw me and headed in a different direction quickly, as she did the few times I saw her during the rest of the day. With her was her best friend, the daughter of the woman I was dating at the start of my problems (remember her?) Talk about triggering events.
I stayed. I went and stood by one of the stages, shaking with fear, triggered by what I just described, the people, just about everything that was going on. I’d wanted to run. Then someone I knew, an artist who had performed there many times but was there just to enjoy joined the crowd. I said hello to her and, after several glances she recognised me and greeted me enthusiastically. I was really glad but, again, it made me sad. The fact that I was no longer instantly recognisable made me feel uneasy because I’m not Simon anymore, or, at least, I’m a hidden version. The conversation was so quickly about how I am and not about the festival and the music. I understand, people care, people want to know. Just after that quite a few old friends appeared, including one of my closest friends from a time two years ago before I got so ill. It was great to see him. Great but so very difficult. I know he had found it hard to see me change, to see me fall from where I was to how I am now. I’d heard very little from him since those times and it had made me sad, but I know that this has been the case for so many people. Even people I still have contact with things are not as they were. I am not me, Simon is not the dominant character anymore.
The rest of the day was a paradox. On one hand it was fantastic. When music was the core, when conversations were centred around a time gone by with people from that time I felt calm, ok, good. However, anything about the present was all too real. If I was around food, or being encouraged to eat, or felt enclosed I felt horrible, I felt triggered. I was reminded that whilst I could talk about the past, be reminded of it, that reality was very different. The now is dark, the light is behind me. I can only view it as someone views a photograph, a memory. Reality has to be viewed through the eyes and that’s something I’m forced to do no matter how hard I try not to. I hate it. The worst thing is this; those people I came into contact with from my past all want the Simon in the photograph back. They don’t want to look through their eyes and have what they see before them, they want the memory. I do too, however the reality is different. He’s gone and I have NO IDEA how to get him back. You see, I take the positives of the day – Amber Run were sensational, it was lovely to see old friends and the pictures you can see of me with smiles on my face with those people are real – but the reality is different. I grieve for the same things all those people are grieving for. The Simon they loved has gone. Nobody wants to know who I am now, not even I do.
So why do I want to stop posting on social media? It’s back to the mixed messages. Someone said that it was great to see me making steps forward. Simply put, I’m not. I went because I wanted to hear music. It was great to see old friends. I was reminded, however, that I am not the person I was, or at best that person is buried by the mess that I have become. I’m trapped by a monster who has locked me up in a cage and has the key firmly in his grip. I can’t wrestle that key from him. He’s laughing at me. Whenever someone says I am making steps forward I get sad, angry, distressed and numb all at the same time. I don’t blame people for thinking it – anyone would – but it’s time for me to take control of what I’m putting out there. The best way to do that is to put nothing out. I will continue to blog but the only way people will come to it is if they look. I won’t alert anyone to it anymore. Twitter is different. I can comment on my football stuff, I can comment on a tweet about music. It’s easy, I don’t have to be personal about things. Facebook, however, I’ll keep my account but not communicate publicly. I have to be less mixed.
Maybe one day the photograph will come back to life. Maybe one day the photograph will be all that’s left. One thing is for sure, they won’t be my photographs. I’ve just sold my camera gear. No point keeping hold of things I can’t use. I’ve bought a point and go. That feels a lot more apt. Point and go. No mixed messages.
For the past week I’ve felt like I’m permanently staring down the barrel of a gun or completely trapped. It’s a horrible feeling, a feeling created by the worst of circumstances at a time when I probably need help the most. Those who are in touch with me on social media might be forgiven for thinking that I’ve been making an effort to do a bit more of the things I’ve been trapped from doing. My last blog entry indeed suggests this, but actually things are going badly. Very badly.
I had an appointment with my psychiatrist just over a week ago. He is part of the recovery team, helping me more with day to day integration, coping with my anxiety issues and Asperger’s. During that appointment he posed certain questions that unnerved me, centred around the possibility that I could be discharged from the care of the eating disorders service. I was stunned at the mere suggestion. Lately the anorexia side of things have taken quite a kicking and, with necessary sensitivity, it’s obvious that behaviours are out of control and physical repercussions coming to the fore. The justification for the suggestion was due to the lack of progress or engagement in any meaningful treatment since discharge from my last inpatient admission in February. As I pointed out this had been due to my moving and the eating disorders service wanting to ensure my work with the recovery team being established so that cross agency involvement could be created to devise a way forward. I hoped that he was simply “shooting fish in a barrel” and that I could query this with my care co-ordinator at the ED service at my appointment last Friday, but I didn’t like the fact he even brought it up. Anyone who has experience with eating disorders know that this kind of thing can be a trigger, and that’s the last thing I need when things are as bad as they are at the moment.
My appointment at the eating disorders clinic didn’t go as my care co-ordinator was obviously planning. I don’t think she had any intent of discussing any of this with me, indeed that was what she intimated as soon as I queried what had been mentioned in my appointment with the psychiatrist. She confirmed everything he had said and then detailed my options. I was horrified. They are indeed looking to give me a ‘therapeutic break’ from treatment (temporary discharge, let’s not dress this up) unless I took the only option open to me. This option, in reality, isn’t one…not for where I’m at.
Gloucestershire Eating Disorders Service is one of only a few in the country that offers a day treatment programme. Just after my diagnosis of anorexia I was referred onto this programme but was discharged from it after just one week. The programme is meant to last eight weeks. They have very strict guidelines, one of which is that all meals are completed within a set amount of time. These rules are there to ensure that you are committed to the programme, your recovery, and to protect the recovery of the other patients. I understand the rules, I accept them but at the same time I understand that if you can’t stick to them you can’t stay. I also acknowledge that if you can’t adhere to them that you aren’t well enough for the programme, and that your illness is more severe than that programme can accommodate. If that’s the case then other treatment MUST be instigated, simply leaving someone to fend for themselves should NEVER be the way.
My care co-ordinator says this is the only option open to me at this time. If the programme wasn’t right for me at the start of my diagnosis there is NO way it is right for me now, not when my illness is so much more progressed, my behaviours are far worse, my weight so much lower and my food fears so much more profound. I know exactly what is expected of me there and should I accept a place I am certain that I would be discharged very early on. The net result of that would be damaging in the extreme and that’s something I am simply not prepared to face. Things are bad enough as they are, why would I do it? This, to anyone reading who has no experience or understanding of eating disorders, must seem ridiculously defeatist. I am being nothing more than brutally honest with myself and what I know of where I am. With all the will in the world and desire to gain control over this BASTARD of an illness it has me on the ropes. Even if, hypothetically, I went and did the programme I would still spend 20 hours a day at home. That’s a lot of time at the mercy of all that goes on in my head, not being supervised through meal times, not being stopped from carrying through on behaviours that might undo anything I might do in day treatment. It’s all that happened before.
Our conversation then progressed and she posed the question of in-patient treatment again. I had been thinking about this as an offshoot of my psychiatrist appointment. He had asked me if I thought I would benefit and although I’d been resistant to this point I have become so desperate to regain some life back and some control that I realised that this might actually be the best way forward. I began to get tearful for the first time in a long time and nodded in agreement. I wish she hadn’t asked the question. It would seem that the NHS Commissioners will not sanction inpatient treatment for me again, especially in view of day care treatment being an option. Given the reasons I have gone over above this leaves me in the wilderness. Day care treatment would be, I believe, catastrophic and inpatient treatment isn’t allowed. I don’t blame the NHS for this, nor my care team really – this sounds like a funding issue and isn’t the first time I’ve been in this position. You have to admire our government don’t you? Oh no, you don’t!!!
So here I am. The wilderness. The eating disorders service haven’t formally put me on a ‘therapeutic break’ yet, they want to have a meeting with me and the recovery team, alongside my GP, and then they will. It’s here that I have to tell them my decision in regard to day treatment, but, in truth, I see no real prospect of me engaging with that for all the reasons I’ve said. Meanwhile I am physically getting worse as the anorexia has a field day with my vulnerable state. Even at that appointment with my ED care co-ordinator my weight had dropped and has continued to do so, not because I’m proving any point, but because I am that ill. And the worst thing? I’m still not 100% sure these professionals completely listen to me. Yes, I’ve always had mental health issues. Yes, I’ve always had food issues but just today I had a letter from my psychiatrist following up on our meeting suggesting that maybe all of this might just link back to my being on the autistic spectrum. It’s at times like this I am really at my most vulnerable, when I can’t see any way out. My sole issue right now, or rather my primary issue, is that of my eating disorder. I need help with that and that alone. If I can’t get it I have no future, it’s as black & white as that. Yet here I am facing the prospect of losing the support of both the ED and recovery teams.
I’m trapped. I feel like I’m staring down the barrel of a gun. I’m looking for a future that doesn’t seem to exist and all the while this pig of an illness is mocking me, making me scared and won’t let go.
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.