As football fans we await that first game of the new season in August full of hope, anticipation, dreams, wonderment. We’re keen to see how the first 90 minutes of what has been a long close season will unfold, eager to meet up with friends we haven’t seen for weeks. Hell we’re even looking forward to having that greasy substandard burger and overpriced dodgy tea, it’s all part of the match day experience after all. Football, for those of us that follow it and love our clubs with the passion that sees us part with vast sums of cash to actually go and watch the games live, is a unifying thing. These “rituals” are part & parcel of it all. Without it, in those long weeks of the close season, we are aimless creatures, just waiting for August to come around, for the madness to start again.
That’s how it is for the vast majority. That’s how it has been for me too in the past. Elements of it were there as yesterday approached, although clouded by the dog of anxiety, fear and nervousness induced from all those issues that are documented on these pages. Of course I was excited to see how we would play. We’re a Premiership club now, and we damn well deserve to be. We’ve made some astute & astounding signings during the summer and I’ve been chomping at the bit to see how they would perform up against Everton, the first team we were to face. I was also keen to see a few people too, people I’d not seen since the end of the season, albeit that I was already in a situation where anxiety was preventing me from fully engaging in a naturally social way. However, I’d done some baking and I really wanted to pass that on.
But the dog of anxiety. How is he driven? It comes from two strands, or rather, two illnesses. From an eating disorders perspective it’s all about self-consciousness. I am overly concerned with how I look, convinced that I am still huge, just as I was when I was over 24 stone. Logic tells me I’m not, the eating disorder voice tells me otherwise. I only need to see a shift of a single pound on the scales and it all goes off in my head. That there’s any kind of fluctuation is a mad thing given that I seldom eat anything of substance, often going days without anything at all. And yes, this has been a feature for a long time, and yes it has been just as bad, if not worse, during the time since I last blogged. Physically, again, this is taking its toll. Certain vitals are at low levels in my blood chemistry and injections & supplements have been prescribed. My left arm is totally useless, and tomorrow I go to hospital to start having tests to get to the root cause and to explore the way forward. Suspicions are osteoporosis, a common side effect of long term anorexia.
So how would that self-consciousness stop me seeing people? Apart from worrying about how I look it’s also worrying about how other people see me. There’s two ways I worry here. First, I worry that people think I’m fat. Totally illogical. Second, that I just look “odd.” Logical. Third, and this is the killer. I worry that people will tell me i’m “looking well.” This is the worst thing in the world for me to hear. It’s a tonic for most people, it’s what people like to hear. For someone with a mental health condition such as an eating disorder it’s one of the most inflammatory things. You mean well, I totally get that, and appreciate it completely. However, the eating disorder voice will play a game. “Looking well” means you’re putting weight on. “You’re having too much of a good thing.” “You can’t look well and be anorexic, the two don’t marry.” “If you’re looking well you’re getting better, people will think you’re ok.” These are examples of the bullshit of lies that an eating disorder voice will start telling you once those words leave your lips and enter my ears. And yes, I see it for what it is, lies. But that eating disorder voice, in my illness riddled brain, is convincing and I come to believe it. And so I get more ill, and I don’t look so well. I might not have even looked well in the first place, you might have been just trying to encourage me, being kind. Oh how I wish you’d said “how are you doing?” You’ll always get an honest answer, it might not always be the best, but it’ll be honest.
It’s why I back off on social media sometimes. It can happen on there. I’ll post a picture that includes me, someone will say I look good and BANG – a million alarms go off in my head. Alarms become explosions and the cavalcade of things that happen is uncontrollable. Self harm has slipped back into my “behaviours” and it’s not nice, I hate it. But it’s so hard to control it, as are all of these things. Were I able to control any of these things I wouldn’t be writing this now, I wouldn’t be so ill. And remember, I’m ill. Don’t lessen the legitimacy of mental illness. It really is real. By the way, I’ve made a pact with myself never to post pictures that include me again. It’s just safer.
The second strand is from borderline personality disorder, also known as emotionally unstable personality disorder. That second is probably more descriptive and apt in its name. It certainly describes me (and I had a little ironic chuckle as I typed that.) To try and describe what this is and how it affects me would take too long. I’ve had this for years, far too many years to think about. It’s better that I provide a link (for those who might be interested in reading more) and leave it there: Borderline Personality Disorder, MIND.
The thing is, these two illnesses just rub along together to make an impossible situation, and they are making life, and any enjoyment of it, unbearable. Even down to everyday living. For example, the arm issues; I’ve just had to trade in my manual VW Golf for an automatic VW Passat because the action of changing gear was unbearably painful. I loved my Golf. Don’t get me wrong, the new car is nice, but it’s things like that which remind me just how much life is being restricted by these issues. Today I was hoping to be at a festival I’m patron of. I thought about it for two minutes this morning. A minute later I was taking a laxative overdose so that, along with the anxiety, I ensured that I couldn’t.
By the time yesterday came around I had been so overwhelmed by my feelings that I had restricted my interaction to meeting one person, handing over the things I had baked for people (cashew salted caramel brownies & giant choc chip cookies) and then just getting into the ground for the game. I’d made a resolve to not bug out early to avoid crowds, I really wanted to try and tackle that one, but that was going to be the extent of what I felt I could manage. But no, it was never going to be. I couldn’t even face meeting that one person. The only people I was to see were the people I sit by. So I gave the majority of the stuff to my mum, took a couple of samples for the lads I sit by, cancelled meeting up with who I had planned to meet and set off. And why?
I know people are supportive, I know people want to help, and I am more than grateful to them for that, but I feel ashamed & guilty that I keep “putting on” people all the time because of how I am. It just makes me feel worse. I’m putting pressure on myself and making the match day harder than it should be for all, but mostly for me. It’s easy to take a smaller sample of things to Simon & Alan, I’m sitting by them. For now it’s better this way. Until I can stroll into a bar or pub before the game and hand over my bakes and be with my friends in person I’m not going to ask anyone to interrupt their match day fun. My problems, it’s up to me to live with them.
The sad thing was I saw so many of you. I can only think of this analogy. It’s like being at one end of the playground and seeing a large gathering of your pals at the other, all playing together. You want to go and join them, be with them, chat to them, have a laugh. But standing in the middle of the playground is the school bully, with his arms folded and a snarl on his face. You’re not getting past him, no way. Until I can get past him I’m not calling over one of my mates to lead me past Cyril Sneer, because I know that Cyril will kick the shit out of me later anyway. I need to be able to walk past him myself, or be able to deal with the kicking enough to give a sly dig back before I can do it.
I’m sorry if any of you saw me and thought I was being ignorant & didn’t come over. I wasn’t being, I was being merciful to the crap in my head. I was being ill. But I wanted to be with you all. Every part of me did.
The football though, that was great. We stood up to Everton. 2-2. Ruben Neves scored a worldie free kick right in front of me. That was worth the hell I went through even in that controlled way. Football. Wolves. Still has the power to give me the pinprick of light in my darkest of moments. I love them for that. I love you lot too. Please bear with me. One day I will shine a bit brighter. I can’t ever say how bright, but it will be better than this. I won’t ever be Premiership, but maybe I can get out of the National League some day.
Oh yeah, I made it til they held the board up for the 4 extra minutes. Meh. Almost.
Oh, and you might be missing out on the baked stuff at the moment, but you won’t for long. And anything that the guys I’m sitting by get to taste…you’ll get the recipe for it in due course. There’s a thing going on. Won’t say what just yet. All will come to pass in due course.
Well that’s it then, he’s finally lost the plot. He’s started his post about his holiday with a picture of lemons! Fear not, I haven’t lost it, at least not quite. I was thinking of the phrase “when life gives you lemons, make lemonade.” Does it go like that? If it doesn’t it does now, at least it does for me. Yes, I did take this picture over in Zante (I’ll call it that for ease, the island is, of course, actually called Zakynthos.) There are lots of lemon trees there, and the lemons on them are stunning, bright yellow, vibrant, and as lemons should be. What does this have to do with the phrase? Nothing of course. I’m doing the aspie thing. To the point.
Before I go over the week’s events let me say this. Nobody on social media did anything wrong. On the contrary everyone was, as they always are, supportive as hell. You all said the things that instinctively anyone would in reaction to what I was tweeting. Issues that will be mentioned were my fault. Actually, that’s incorrect. They arose because of my illness problems. And remember, I AM ILL. And yes, I DO fight, every day. But I am ill, and sometimes I have to back off in order to protect myself against the very illnesses that affect me. Fighting is sometimes best done by protection, and that can sometimes mean secluding myself. Also, sometimes I paint a picture of things that look very rosy, very colourful, very sweet. But sometimes life is giving me lemons.
After getting through the ordeal of the flight out (which I am eternally grateful to the collective reassurances and support of my Twitter friends for) I arrived in Zante just in time to witness the mother of all thunderstorms. Not long after we landed I’m informed that they had to shut the airport due to an island-wide power cut. Good job we got there when we did! I got to the hotel and dumped my stuff (hotel room was perfect for my needs) and headed to a restaurant that I’d been to when I went to Zante with my mum & stepdad last year. They already knew about my food issues so I felt semi-relaxed about going there, and I was only in for a salad.
I was greeted by the staff like an old friend, which was lovely. By this time the thunderstorm had become a monsoon, not so lovely! I’d narrowly escaped it walking to the restaurant, but was due for a soaking going back! The salad came, and this was the first warning that the week was going to be a slog. It was a bloody salad. I managed half. I felt deflated to be honest, but tried again. Greeks love a simple dessert of yoghurt, honey & nuts. Tried, two spoons, finished. Shoot me. I could feel myself getting upset – this was night one!! Thankfully the waiter, who I’d got to know fairly well from last time, whizzed me back to the hotel in his car to save me from getting soaked. Once I got back in (the power was back on) I really let the floodgates open. They matched the downpour from outside. I was so upset, I knew things were going to be hard, but over a salad and a bit of yoghurt? I mean, in reality I’d barely touched either!
And this is where I realised there was only one way I was going to be able to dance with this devil. I was going to have to counteract every food journey with lots of walking. I knew that I would have to do more physically than I was actually consuming to be safe, but this was going to be the only way if I wanted to get anything out of the holiday and it not be like at home. I was so angry, but really, did I expect that this was going to be a “week off” from my illness? I think somewhere I hoped it would be. But you can’t just have a week off from a broken leg or a terminal illness can you? So I was kidding myself. And the same was true of any reaction to anything people said to me.
I’d been tweeting pictures of some of the things I had been eating. This wasn’t because I was thinking that I wanted to share that it was good I was eating something (well, apart from a couple of things because I found it “funny” in some perverse way), but because I found the foods interesting, stunning, and I wanted people to see them. It was a mistake, because I know that this illness will use it against me. Seeing the words “well done” or “go you” or anything positive about me consuming food is a gun to the temple. I had to stop it. Because the truth is this: every bite, every swallow was torture. The voice in my head said no. The voice in my head said I would pay. The voice in my head said it was temporary. The voice in my head said I should be ashamed. And I was, because I’m conditioned to be that way.
People could say that this week showed that I was fighting, and to a degree I was. I ate every day. I ate something small at breakfast time, and I ate salad 5 out of 7 times in the evening and a couple of other things two other times. Those times I was so out of my comfort zone that I barely touched the dishes, but I ate. Mind you, apart from once I never finished the damned salads either! Yes, that’s fighting to have some of the holiday I paid to go on. However, to get the sights & sounds of the holiday I had to do it at a pace, and that pace was in the form of not being able to sit & relax AT ALL. I walked, constantly. I walked so many miles it scares me (and I had some not nice “warning” signs that I must go and get checked out.) I won’t put figures in case there are people reading that get triggered by it, but suffice to say for someone in my condition it was a ridiculous amount, in areas that were challenging and in temperatures that were above 30 degrees.
That’s why I stopped tweeting. It was after the England v Belgium game I think. Someone said something about my confidence growing and I thought to myself, “is it?” And really, it’s no different to how it ever is. I wanted to see the game, there was no TV in the hotel. I made my way into the bar, a guy called Loz spoke to me, he was a Birmingham fan, we got talking a bit, his wife appeared and after 20 minutes I didn’t see him again. I was on my own. I didn’t engage anyone. I did have three vodkas, I did have an ouzo, I did feel drunk, I did pay for it the next day in the form of walking even further. Did my confidence increase this week? Did I make any progress with anything? I went on holiday on my own. That was a thing, a big thing, something I couldn’t see myself doing going back a couple of years ago. Was it easy? Not a bit. Would I do it again? Yes. Would it be any different? No. Am I any more confident than before? NO. Has my eating disorder improved any? Here’s the answer:
I couldn’t wait to get home and STOP eating.
Do you have any idea how much it breaks my heart to type that?
I fought to experience what I could from that holiday. Life gave me lemons, so I made lemonade. But at a cost. Now, less than 24 hours after I left Zante I’m already trying to undo the small number of lbs that went on just because my body isn’t used to having food in it every day. Nothing to do with what I ate, and believe me, I was not eating enough to sustain the exercise I was doing. It’s just biology V what I’m used to. I still am dogged by this shit. But I made lemonade at least.
I really am grateful that people express themselves in a positive way to me in reaction to what I tweet, but I set myself up without thinking sometimes, and the collective forces of anorexia and borderline personality disorder leap on opportunity and work against me. What starts off as innocence can suddenly make me so unhappy. So I shut up for a few days. Seriously though, thank you. Please don’t think I was being defeatist, I was battling, but to get out of it what I could. I just can’t progress – but the towel won’t get chucked in, despite the times I stand on clifftops and wish it could all be over.
Of course, no holiday is complete without a “Shirley Valentine” story, right? Ok, well, I had my moment. More than a moment really, and it ticked some of the cliche boxes. Her name was Maria, she was a Greek waitress at a taverna called Memories. That’s one thing I will definitely have of that place for life – Memories. She sussed something was “different” about me within about 10 minutes of me going there and picked it out of me what was wrong. That girl said some of the most wonderful things to me I can ever remember. She told me about how elephants are trained not to escape the circus from when they are born and by the time they are adults they don’t need to be tied down with heavy ropes, a simple piece of string will do, because the elephant remembers that all the effort it went to as a youngster to break free was fruitless, so it doesn’t try. She said that it was a shame, because now it would be easy. And then she just looked at me in the eye (not easy for me) and she said – “Simon, you just need to think differently, because you are wonderful, you are special. I want you to look in the mirror each morning and tell yourself just how beautiful you are, how handsome you are and I want you to keep trying. Don’t be like the elephant, don’t settle for what you knew, try something different.”
It’s not cool to cry into a bowl of chef’s salad. I didn’t want to be cool. I wanted to hug Maria. I wanted to hold her gorgeousness in my arms and tell her that she was amazing. I wanted to bottle her words and digest them. My eating disorder mocked them: “she’s after a tip.” She got a sizeable one in a card with a letter on the last night, the third night I’d been there in a row. Fuck my eating disorder’s words – she was genuine. She gave me a letter too, three pages long. It included the story of the elephant, and loads of other things she’d said to me over those three nights. No, the beautiful Maria didn’t fix me either, but her words WILL stay with me. They are planted. I left part of my heart in Zante, I left it with her. And we swapped email addresses. I guarantee it won’t be the last time I see her.
I won’t ever forget that holiday, but it wasn’t easy. I will savour the sights & sounds, but they were all under a barrage of “abuse” from my issues. There’s no “well done” to be had. There was no “bravery” because I gave in to the control these things have on me, and please, don’t say any of that stuff to me – if you think it then thank you, that’s good enough. Tell me at a time when I might be in a better place x But I got my sun. I got my sights. I got my sounds. And, unexpectedly, I met the most perfect girl I think I’ve ever met.
It could only happen to me that’s she lives 1400 miles away and is probably about 15 years younger hahahah!
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Before I launch into this I need to make a point. I need to make it because I know for a fact people will get to the end of this and say “why should we listen to someone who clearly has an eating disorder?” So, read this and take it in. I suspect you’ll want to come back to it again at the end:
If you break your leg you don’t forget how to walk. Whilst it’s healing you simply can’t walk, your leg is broken, but you still know that you can when it’s healed. The same is true of my situation. Factually speaking I know I can eat, and that all I am about to say (or have said) applies to me. However, my mind is broken, and for the time being I simply can’t. In time, hopefully, that will change. A broken leg can be seen with an x-ray, a broken mind can’t, but it doesn’t make it any less real.
My grandparents lived to a really good age. My nan was 87 when she passed away of complications arising from dementia. Up until her dementia diagnosis she had been fit & healthy throughout. My grandad was 94 and, aside from the fact that he’d developed an extremely rare muscle wasting illness later in life, had lived a long & healthy existence. Both were happy, both were fit, both were healthy. I’ve deliberately used that last word a few times because it’s key. Healthy. They got to those ages in the days before social media, before the internet was a thing, before even personal computers were around. Hell, computers weren’t even dreamt of as they were growing up, playing in the fields and streams of rural Gloucestershire. In fact, it wasn’t until 1956 that televisions were even rising in popularity in the homes of the UK, so I doubt that either of them were influenced by anything coming from that medium.
Growing up for that generation was very different to what we know today. It had an innocence about it, yet at the same time it was about survival. Coming out of the first world war it was inevitable that times were hard. People lived off the land and you grew what you ate, you raised & killed what you cooked. Rolling into the second world war this was even more important as the stranglehold of rationing kicked in. I guess there were parallels of how it was back when we lived in caves. The survival mentality. The hunter gather. Don’t worry, I’m not about to go too leftfield on people here, I’m just drawing on comparisons on how things might have evolved back then. But I imagine that’s how it could have been. Self sufficiency would have very much been the key to things. It wouldn’t have necessarily impacted on the delights coming out of the kitchen though, people were exceptionally creative in the days when my grandparents were growing up.
I picked up a set of WI cookery books recently, some really old ones. There were some amazing recipes for old classics like spotted dick, plum puddings, suet puddings, steak & kidney pies and so on, all dating back to the days when “times were hard.” These would have been the sorts of things that adorned the tables of my grandparents, and I know they did because I still remember having them on my visits to them as a child. Those traditions didn’t die as they grew older. I have clear memories of those visits, of my grandparents house in a quiet hamlet of a village nestled between Gloucester and the Forest Of Dean. What I remember most is that grandad had a massive orchard with many apple & plum trees, further apple trees on the lawned gardens, a greenhouse that housed big juicy tomatoes, cucumbers & lettuces, a vegetable patch behind his workshed that had carrots, beetroots, potatoes, marrows, radishes and courgettes. Across the lawned gardens was another larger vegetable patch. Here he grew runner beans, broad beans, peas, sweetcorn, celery, onions. You know what? Over all those veg patches, if it could be grown he damn well grew it! Whatever was in season he would have it growing over those patches and he took care of them throughout, forever keeping them weed-free and the pesky crows & pigeons at bay. There was no need to go to the supermarkets for any of this stuff, that was for sure. Fresh veg adorned the plates of my grandparents table every time.
For all grandad’s endeavours, nan was equally as devoted to using the efforts of his toils in the kitchen. Whilst a lot were used as part of the meals as they were, much were used in vegetable pies, in salads, in stews (her stews were absolutely legendary, as were the dumplings that accompanied them) and many pickles & jams. It wasn’t just main meals however. Puddings & cakes were her absolute starring commodities. Her chocolate cakes were incredible, rich in chocolate, sponges done to absolute heavenly perfection. But it didn’t stop there. Her pastry on whatever pie she did was always on point, the fillings whether sweet or savoury were bang on, her gateaux were to die for, trifles thick with fruit, thick yellow custard, the best full fat cream and sprinkled with hundreds & thousands. And sherry, you could always taste the sherry. My 10 year old self used to believe he was having a crafty drink, somehow.
At tea time there were her scones with lashings of home made strawberry jam, jam tarts, raspberry flans, home made teacakes. Salads were served buffet style. Cold meats were laid out and large slices of ham with fat still on. And here we go with the point of all this.
You see, there was an honesty about all this. Nobody ever told them what was right or wrong. Nobody ever said this was bad for you or that was too little or too much. Instinct was enough. Listening to what their “self” was telling them was all that was ever needed. There was no pressure, there was no expert, there was no instagram picture to aspire to. I can remember (pretty much) what my grandad used to have in a typical day. He would have a full bowl of cornflakes with full fat milk and a banana cut up over it for breakfast followed by a couple of slices of toast & butter. He’d have a cup of tea around mid morning, always with a couple of rich tea biscuits, often with something like a lardy cake or a cream cake of some description. During the week lunch would typically be a couple of rounds of sandwiches, typically stuffed with ham (we’re talking thick ham, fat still on) with salad & loads of mustard. The bread would be thick with butter. This wasn’t shop bread, no, this was slice-your-own bread. Doorstep pieces. A packet of crisps. Something like a “Club” biscuit. An apple. Evening meal (or tea as we call it down this way) would be something like chicken or lamb, beef on a rare occasion, with potatoes (boiled AND roasted), green beans, carrots, cabbage & peas. Loads of gravy that was thickened with cornflour and the meat juices. Possibly a Yorkshire pudding. Good portions, not OTT, but enough to fill you. If there was too much on the plate you stopped eating. The dog would always welcome the leftovers. Pudding had to be considered after all. Apple pie or apple crumble. Or some other pie/crumble. ALWAYS with thick custard or ice cream. There might be a sandwich or packet of crisps for supper (or both). But it wasn’t always like that. Weekend breakfasts were fry ups. Eggs, bacon, sausages, fried bread, mushrooms – the works. And you know what? Often cakes would come out at random times. It was perfectly ok to have cake. Whenever you wanted. It’s ok. If you’re out and busy, if you’re expending energy and your body is telling you that you need something, why would it not be ok? And why the HELL do you need to look on the back of a packet at the numbers or contents?!
Who is sitting there shaking their heads or tutting or counting calories? I am. I shouldn’t be. I have an illness. That’s why I am. Why are you? BECAUSE WE’VE BEEN CONDITIONED THAT WAY. But they weren’t. This was how it was for them. Go back over what I’ve written. They lived to 87 and 94. Apart from when they got very old, they were never ill (save for the odd cold). No heart attacks. No cancer. They weren’t fat. Fit & healthy. They were active. They didn’t sit in front of the TV all day, they got out and did stuff. They socialised (that doesn’t mean sit in the pub all day). They met with friends and went to places, they explored. They saw a bit of the country. They weren’t afraid to go back somewhere if they’d been there before. It was ok to go back, especially if they’d enjoyed it the first time.
Yes, we live in different times and things are not as simple as they were, but let me get to the point of where I want to with all this. I sit here day after day looking at the TV schedules and through social media and all I see are people telling us what we should or shouldn’t be eating. How much is too much. How little is too little. Why we should eat this and why we shouldn’t eat that. And as soon as we have that information someone else comes along and tells us the complete opposite. We have “experts” – people who are nutritionists, doctors, professors, food scientists, sports gurus, fitness coaches, lifestyle coaches. The list is endless. Each one trying to outdo the other in trying to get us all to live at an optimum. Jamie Oliver, a chef, is forever telling people that they are making bad food choices. First of all he was telling kids that eating turkey twizzlers was bad for them and got them removed from school menus. He has no right to do that, no right whatsoever. We should learn from our parents naturally what’s good & bad, and as parents it’s our duty to inform our kids and nurture them from birth. It’s definitely not up to some “chef” on the bloody TV. His biggest crime was actually in not saying “actually, they just taste like crap.” Further, maybe it’s time we just made a bit more time to do a bit more ourselves. It’s actually really satisfying to create, to bake, to prepare, to cook. There’s nothing better than to hear someone say “thank you, that was lush” or “you know that cake you made? It was incredible!” I mean it, if it bothers you that much, having control over what’s in your food CAN be down to you.
In truth, nobody has the right to look at your plate and tell you that you shouldn’t be eating what you are eating. Further, nobody has the right to look at you and tell you that you don’t look good (unless you’re at the doctors and it’s a health matter, of course.) Society is responsible for creating the issues we are facing, and society is each and every one of us. We’re guilty for looking at someone the wrong way if we don’t approve of the McDonald’s they’re eating. We’re guilty if we make some disparaging remark about the size they are. We’re guilty if we comment that someone has “put on a bit of timber.” Similarly, we’re guilty if we turn our back when someone is struggling. And as for the “experts”? They’re now the most guilty of them all. SHUT UP. The lot of you, just SHUT UP. We don’t need all these TV shows telling us what carbs are good, what carbs are bad and actually, no carbs are good at all. We don’t need to hear about the crash diet you go on for 15 days and then gradually reintroduce food again and we’re re-programmed. We don’t need Joe’s look good in 15 book. We don’t need the 5/2 diet. We don’t want to hear about Hopkins and her Fat Club (shoot me right now that I ever got involved.)
What we need to do is simple. Look at our grandparents, or, if we’re too young that the generation is too recent, look at their parents. I bet most of them lived to ripe old ages. I bet they left the fat on their ham. I bet they dipped bread in the meat juices of the Sunday roast of beef. I bet they didn’t give a stuff what the scales said. I bet most of them didn’t even have scales. It’s time to stop winding each other up. It’s time to “just be.” Listen to your body. As Ruby Tandoh said in her book “Eat Up!” – if you want a Creme Egg, have a Creme Egg. Have two. Stop judging everyone, stop judging yourselves. You need what you need. Your body is a machine, it needs food to operate, and y’know, it’s OK to enjoy it in the process. There is NO bad food. Eat what the hell you want to eat, just eat it until you know you don’t need to eat any more of it. Plain and simple. Like my grandparents, they knew when they’d had enough. They had what they wanted when they wanted it but never more than they knew was comfortable. Pretty simple really. Want a tub of Haagen Dazs peanut butter cookie dough choc chip with extra gooey whatever? Fill ya boots.
Hell, I have anorexia nervosa. If I can see all this I am DAMN sure that someone without an eating disorder can. But just remember what I said at the start. And if you don’t remember, and you think “hold on, what a hypocrite, why should I listen?” go and read it again. I’m broken. At the moment.
Point made. Experts. SHUT UP. And whilst we’re here, put something entertaining on TV. We don’t need to be dictated too. Actually, a bit more “Bake Off” a little less (none) “How Food Can Kill You.” Ps…I’m not dictating, I’m just saying what I see. Ignore all this if you like. I’m still struggling, but tomorrow my head says I can eat. And guess what? I’ll enjoy it.
Dedicated to Wally & Hilda Stait. They knew.
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
Groundhog Day. It’s a film that so many people have seen, a popular film that for so long I hadn’t seen. I finally watched it a few months ago and thoroughly enjoyed it. Watching films is difficult at times, my attention span isn’t very good these days. If you aren’t familiar with the film you’ll at least be familiar with the concept. Every day being the same as the last. Well, that’s very true of my life as it stands, and as it has stood for a very long time now. I’ve been masking the truth of course.
Things are taking a serious nose dive right now. I’ve been in limbo for a long time, in a rut. I’ve danced to the tune of my eating disorder. We’d kinda done a deal, reached an agreement, and I’d stuck to my side of the bargain. I personify my illness, it allows me to cope with it better. A lot of sufferers do, and that’s ok. The first time I heard someone actually name it I was horrified and didn’t get it, I do now. If you can give it character it gives you something to take aim at, it gives you something to hate. Sadly, it also gives you something to talk to, to reason with, but it also gives it a voice. Sometimes that voice is loud. At the moment it’s the loudest voice there is.
Groundhog Day has, at times, been interspersed with nice things. The odd gig here (Paramore, Ricky Ross, Katherine Ryan) and, of course, the football. On those days the deals made are tricky. Ever tougher regimes in order to make up for the fact that I will need strength to get through those occasions. Strength means food. Tougher days follows those. Swings and roundabouts, but I have to have some break from the Groundhog. What I haven’t realised, until the past few weeks, is that the eating disorder has slowly been gaining an upper hand. The deal has been getting changed, it’s got stricter.
If you follow me on Twitter you see me masking a truth. I probably come across as quite content. You’re aware of my issues but I seem positive, at least I think I do. I talk about my baking and the Battling Baker project. I’m always posting things about what I’ve baked. You might think I am eating that stuff. No. I try bits, but it’s never more than a pinch. The truth. That was the aim, but the ED slammed that plan hard. Not that i’ll give up. My passion is too great, and one day, maybe, I’ll swallow more than a sparrow’s beak amount and not walk it off afterwards.
I find it hard to say all this on Twitter, or to anyone in fact. People ask sometimes. “How are you?” I almost dread the question because I WILL tell people if they ask, but when I do I hate that I’m saying it. I hate that I’m writing this now but I need to get it out there. Also, I hate that I have nowhere to turn. That’s the thing – I don’t have the help, I don’t have the therapy and I don’t actually have the means to ask anymore.
So how bad is it? Wolves played Birmingham City on 15th April. I ate a meal that day. I’ve eaten 4 other meals since then. It’s 10th May now. Other than that I’ve had an average of 2 of my own “rescue” biscuits per day to keep myself vertical. Yes, I’ve lost weight. No numbers – I know it’s not good to write that stuff down. What I will say is that the eating disorder tells me that in order to have the next meal I must be X weight, each time the X number must be lower than the time before I ate last. No amount of fighting from me stops the relentless attack mentally if I even try and break it.
I’ll tell you one story. It was the last home game of the season. I’d planned this. I wanted fish & chips. MAJOR for someone with my issue. Deal was done. HARD week before, but the figure the eating disorder set was reached. All the way home it tried HARD to talk me out of it, but I’d stuck to my side of the deal. I was doing it, even if I only managed half. By the time I got to the fish & chip shop I was already “talked” into only having small fish & chips rather than standard. OK, I was backtracking but at least I was doing SOMETHING. I was in a cold sweat going into that shop. It was so hard. There was a wait for the fish, they had sold out. Instant panic. Just wait it out, it was ok. 3 minutes passed. 5 minutes passed. My head was SCREAMING. I began to cry. Not just hidden sobs, this was proper crying. In a shop full of people waiting for fish to cook. I kept my head down but people noticed. I wish I’d run out but I didn’t. 10 minutes it took. The woman handed it over and apologised for the delay, maybe thinking my distress was over that. I thanked her, said it was ok and ran out of the shop. I’ll never go there again. I can never face that ordeal again. I ate half the meal. I’d wanted to enjoy it, it was marred.
Groundhog Day is more frequent now. The football is over until mid August. I have a week holiday at the end of June and that’s all there is to break it up. The deal for that is too severe to put down, but I am going to try hard to make that week as good as I can. However, things are SO bad at the moment. One meal a week is making me very ill. I have developed acute tendonitis in my left arm that starts in my shoulder and goes right into my wrist. Physio would help, but without muscle to build up strength won’t be very effective. Food will help build muscle. So the cycle continues.
I sit here this morning and I know I haven’t hit where ED says I can have a meal. I probably will tomorrow. HOORAY. Mum goes on holiday for two weeks. Two weeks I probably won’t see anyone, although I believe someone I have got to know on Twitter is popping in for a coffee on one of the days. The hardest thing in all this is the lack of support from the people who are meant to help. I can’t ask for ED services help now because they have said they will only help if I do their day treatment therapy. Well, if you read my previous post on that you will know I am in no place to be able to engage with it. There ARE other alternatives but they will just NOT entertain it. I can’t discuss it with my CPN because they don’t deal with eating disorders and have no experience. Psychotherapy team won’t engage until I’m eating. I can’t go private because I can’t afford it. I’m trapped.
Sometimes I sit here and I wonder what the escape route is. Do I just exist like this? Is there a way out? Sometimes there’s a dark answer and it seems a light one.
When I try and fight, when I look at my life as it was (the good bits) and fight for that, the power of this illness really does show its grip. That’s how I know just how ill I am. Yesterday, whilst out walking, I was listening to a song by Anne-Marie. She sang about not caring how she looks, about eating her body weight in chocolate, about loving herself for who she is, about being comfortable in her own skin, about loving herself for her. Suddenly I thought “yes, why am I being trapped like this? Who am I doing this for? Why don’t I like myself?” I started to fight a little. SLAM. Suddenly my couple of miles around the block became a lot longer. I was put in my place. I’m so ill.
So, the masking. It really is a mask. This is the truth. I’m REALLY struggling. I hate it. I want a way out and I can’t find it.
I’m sorry this isn’t more positive. I can’t keep masking. This is my hell.
I’m sitting here writing this with a smile on my face (and tears filling my eyes if truth be told.) It’s not something that Wolves fans have been too used to over the years. We’ve had moments of it in the past couple of decades; the play off final in 2003, a return to the Premiership in 2009, storming League 1 in 2014. However, for each of those moments of success we’ve had to endure much pain & frustration as fans. It’s not easy being a Wolves supporter, it’s not like it was in the heady days of the 60’s when we were the glory boys who won FA Cups & League titles with regularity & were feared by all. No, we’re often talked of as “sleeping giants” or the club that “should be in the upper echelons” of football. We haven’t been. To be honest we’ve been frustrating. At times dire. We’ve been run badly, had some terrible managers and players who just haven’t had the heart (save for some noted exceptions. Arise Sir Bull.)
Not today, however. Not this season, not anymore. Today we are going back to the Premiership as a force with a proper structure behind us. Players with heart. A manager who is a colossus. Owners with the financial clout of Croesus. There’s not a Wolves fan on the planet that isn’t smiling. But there’s another reason for my smiles. Wolves have carried me this season. Quite frankly, and I say this having duly considered it, they have stopped me slipping to a place where I could quite easily not be here anymore. I believe Wolves as a club, Wolves as a team, Wolves as a family, staff, supporters & reporters…have kept me alive this season. It’s a bold statement to make I know, but I was heading toward a destiny that would have seen my end and I needed something to cling onto. It’s as if without knowing it, Wolves have gathered me up in their collective arms and done enough to keep me standing, keep me breathing, give me enough strength to keep going. I’m not just talking to whichever collective of 11 players were on the pitch at any given game, no, this goes much deeper. I’ll start at my decision to get my season ticket to highlight how deep this goes.
Spending money on myself is something I find hard. It’s difficult to say which of my mental illnesses causes me to not feel deserving, but it’s irrelevant, I just find it hard. I like to have money in the bank, I feel secure if my savings are increasing, I don’t feel worthy of having anything of any significant value. I certainly don’t feel worthy of indulging in things that bring me pleasure. If I do anything that brings me pleasure I feel guilty about it. That hasn’t changed, and each match I go to I feel guilty about. If you see that I’ve been to a gig or that I’ve had a good day for another reason, yes, I feel guilty about it. I hate the way my brain is wired but there you go, it is what it is.
So, as I realised that Wolves were building something amazing over the summer, in terms of the appointment of Nuno as our manager and the signings we were making, the thought in my head that I would really quite like to get a season ticket and go to as many home games as my body would let me was met with very stiff opposition. I went through the motions of finding out if I qualified for a disabled ticket and this is where I first found out just how helpful and supportive people at the club are. Both Dominic at the ticket office, and ticket office manager James were superb, supportive and went above & beyond to give me as much information as possible. I had all the information I needed but, of course, was getting all this resistance from the beasts in my mind. Yet the desire grew stronger.
Tim Spiers & Nathan Judah were reporting from the Austria tour for the Express & Star. Their Twitter updates were just feeding my desire more & more and I began interacting with them. I’m pretty sure I said to Tim about how much I wanted to go to games, how I wanted to get a season ticket. Their reporting of the matches and the excitement they were generating throughout the fanbase at what they were witnessing on that tour was incredible. There was a war going on inside me, it was actually making me lose sleep. How mad does that sound? All my mental illnesses were working against me. Anorexia and all the weakness it causes me, the part of me that stops me deserving anything nice yet still…
I wanted something to cling onto, something to look forward to even if it was just once a fortnight (sometimes a little more concentrated) and something that looked as though it was going to be exciting. Tim & Nathan were being so good to me. They must have stacks of people tweet them all the time but they engaged with me, even followed me back and I felt like I was being included in the “buzz” of it all. I was so grateful to them for that, that sense of inclusion is something that has often felt lacking in my life. It’s something that has been a feature of this season and has constantly felt overwhelming in the best way.
Obviously the part of me that’s actually “me” won. I bought that season ticket.
Simon 1 Mental health shit 0.
Going back to Tim & Nathan, their support has carried on throughout the whole season. Tim has checked in on me via Twitter on a number of occasions and that has meant so much to me (as it does with anyone). But this was someone that, until this season, had never met me before. Now I truly hold him in the highest regard, not only as a reporter & journalist, but as a friend. Nathan too has been a great support and in him too I’ve found a true pal. I love his wit and his quirky style. His injection of humour and positivity has been brilliant. When little elements of doubt, even amongst the most positive of us has crept in, Nathan has been there to give us all a journalistic slap across the chops. He’s a breath of fresh air. I can’t remember now why I first baked them some cakes but at some point I did, and have gone on to do it a few times – both cakes & pies – and it’s been a pleasure to do it each time. It gives me chance to meet up with them and have a chat too. They’re great lads and I’ll say it properly now. Thank you both, thank you for being accepting of me, for being supportive, for being you, and for being the pro’s you are. Personally I think you serve the club & the media outlet you work for in an exemplary way, but above all you’ve been a pair of rocks for me.
Then, of course, there are my fellow fans. I didn’t know any other fans that regularly go to matches before the start of this season. I got to know a few during pre season through Twitter and, as the season has gone on, have got to know a LOT more. A fair number of them have now become, again, great sources of support and encouragement. People to talk Wolves with, to support the team with but also, as I found out more and more, are there to listen when I really am struggling. For that I can’t even begin to put into words my gratitude. It took until very recently for me to feel brave enough to meet up with any of them, such is my social awkwardness & fear. However, I did it at last & I wish I had done it sooner. What an amazing bunch! There are still a few I haven’t met yet but I know they will be just as awesome as the ones I HAVE met. There are far too many to name them all, and I’m grateful for every single person, so there’s no exclusivity here. However, a massive thank you to Kate & Neil Wright, Mark, Michael Petalengro (whose advice about learning to laugh at the world is something I’m trying to remember when things are difficult), Sophia Goldsmith, Rikky Roth, Stacey, Simon Layton, Dan Southall, Gareth Jones, Simon Spragg (who I sit next to and took AGES to speak to), Alan, and all the others who my brain is running out of steam to think of right now who have been so awesome. Without you all I wouldn’t feel as I do – that I’m part of one monumental family, a family bonded from the centre circle of Molineux then radiates around the world & is united & there for one another in good & bad. It’s a family I take enormous pride of being a member of. I don’t say that lightly.
Of course there’s where the success of the season came from. The players, the management, coaches, physios & staff that keep it all ticking over. Last but not least, those that run the club. Fosun. People like Jeff Shi & the staff employed by them. Laurie Dalrymple & Kevin Thelwell. What Fosun are building is nothing short of mindblowing. Exciting doesn’t even come close. There are still those amongst the fanbase who refuse to believe and I get that. Our history with owners is going to have left its mark, that pessimism is ingrained into some. But I believe. I believe that we can be as big as force as any of your Manchester teams, any of those London clubs. We can be giants of Europe again, we can be feared. We can stand in our shiny 50,000 capacity stadium and sing til our lungs are on fire and be proud. I believe. And I’ll be there, health willing.
I can’t end this without paying tribute to one man whose inspiration has 100% been a driving force to not just me, but to so many people throughout this season. When Carl Ikeme’s news came through we were all stunned but we rallied behind him. I am sure he took heart from it and it has helped him fight. I take that parallel. It’s like, people have got behind him and he has fought, just as I know he would have without it, such is his character. From that and the encouragement of the Wolves “pack” I too have fought to keep going. Our illnesses are very different, Carl’s is easier to understand for people and I get that. Both are serious in different ways though and both take a lot of fight. Carl’s bravery is a source of massive inspiration to all. It really has spurred me on to keep going, even if it’s just the days when there’s a match on and my own illness is trying hard to keep me home. Carl, keep fighting, if anyone can win it’s you. There’s only one Carl Ikeme.
There’s been some defining moments, and for me they came at the end of the season. I wasn’t at either match, away games weren’t something I felt secure enough to face. Those games at ‘Boro and Cardiff typified everything that Wolves have been. Fight, courage, determination. Everything I have needed to stay alive myself, everything I have needed to battle. The fans passion carrying the team, the team fuelling the fans passion, and so the cycle flowed. To borrow the word the brilliant Southbank Resistance used: kwan. Never more fitting and never more relevant to describe what has kept me going. The Wolves kwan has kept me alive.
It’s not been an unblemished record. I have missed 4 or 5 games. The illness did win over those times, but Wolves, and when I say that now you’ll understand that I mean it in the context I’ve written, have carried me through. Thank you isn’t enough. This club isn’t just a club. What is it Nuno says? “The strength of the wolf is in the pack. Together we are stronger.” Oh how true that is. Am I in any way better? No, but I’m still here and I’ll continue to be, because I’m one of the pack.
Tomorrow we play Blues, and courtesy of tonight’s Fulham result we are already promoted, obviously. It’ll be a celebration regardless of the result, however I’m confident we’ll do well, such is the way of things this season. I’m staying in Wolverhampton overnight, I want to soak up the jubilation of all that we have to celebrate, all that Wolves & those of us that love and understand what it is to be part of it have to be thankful for. I really want to capture memories and savour the sights and people who have kept me going, kept me alive, by keeping me a proud part of this glorious pack.
Wolves Ay We.
TOGETHER WE ARE STRONGER.
Posted in Uncategorized Tagged with: Anorexia, Blog, Carl Ikeme, Connor Coady, Diogo Jota, Eating Disorder, Express & Star, Jeff Shi, Matt Doherty, Nathan Judah, Nuno Espirito Santo, Ruben Neves, Simon Rickards, Tim Spiers, Wily Boly, Wolverhampton, Wolverhampton Wanderers, Wolves
This post very much follows on from my last blog entry but amends the idea for now. This follows feedback from a book publisher and subsequent thoughts about how best to tackle things. This is especially as, on one hand I’m making tiny little baby steps and, on the other, I’m getting battered by anorexia for even giving it a go. The site is aptly called The Battling Baker and can be found at www.thebattlingbaker.com
The publisher feedback was a reality check, a positive one but one I had not considered. In principle they would have been interested IF I had already been ‘recovered’ or, at least, sufficiently in control of my condition. However, they felt it wouldn’t have been in my best interests to go forward with it until such a time as I was confident that this was the case in order to deal with the pressures that might come with the book being published. An older version of me might have taken this quite badly, but I actually took this with dignity and totally agree. If I can get to a better place this could still happen – and that would be a celebration on so many levels. Also, it reminds me not to rush. True recovery needs time, and as I am learning already, this really will be a long, hard road. I’m not calling myself the battling baker for nothing.
However, I really wanted to share a part of what I am doing. I wanted to share my recipes and a little of the journey I am taking. I don’t want to say too much about the battle itself, that wouldn’t be good for those that are struggling themselves and I realise sometimes I say too much anyway. However, I want people to try my recipes! So, in a condensed form of what exactly I’m doing I decided to launch The Battling Baker. Now I can share my recipes, people will know that I’m fighting because I’m only going to post what I’ve created and tried, and people might just try the recipes out themselves. THAT will give me a massive boost! I know for a fact that bakers/cooks/chefs love nothing more than to hear from people who have tried out their recipes and loved them. So if you try mine – tell me (unless you hate them, then just file it under ‘bin’ and try a different one. They won’t all be bad. Promise).
So that’s it – The Battling Baker. Pop & have a look. Get your apron on. Get a bowl. A wooden spoon. A tin. And…..ready, set, BAKE!! (apologies to The Great British Bake Off).
Finally, it’s Eating Disorders Awareness Week this coming week. I hope that people will really engage with all the media activity that is bound to come and share things on social media. It’s important that we keep pushing for the important matters; things like early intervention in the treatment of ED’s and the right level of funding from central government. I might be doing this alone now (no comment) but I still recognise that the NHS works well for a great many people, it’s only right that they are given the funding they need to do it effectively for all. It’s also important that the public realise just how serious eating disorders are for those of us that suffer. Power, love & strength to all of you that struggle – I’m by your side even in my own darkness. x
Since I last blogged I’ve done a lot of thinking. This is what happens when you suddenly realise you’ve only yourself to rely on if you’re to get any control over your eating disorder. The obvious question has been going over and over in my head. How? No more why’s, what’s the point of that now. How am I going to get control of something so powerful, so domineering, so controlling? The answer came to me whilst baking a new recipe, a recipe that came from nowhere, as they often do.
As I’ve alluded to previously I have a keen passion for baking and it’s not going away. If anything it’s only getting more intense and the creativity side, actually coming up with unique recipes and my own versions of already established ones, is becoming more prevalent. The thing is, every time I bake something I’m giving it away, obviously without trying any of it. I’ve been hanging out for help, waiting for the day when things might be easier. I can’t do that any longer and if I wait for things to get easier I’ll be waiting forever. I have to do this myself. To explain I will paste in a segment of the book I have now begun to write:
“The point of this task is simple. I’ve already alluded to the fact that these foods that I produce are my “trigger” foods. Foods that are sugary or high in carbohydrates. These are foods I can’t eat, foods that my eating disorder absolutely forbids me from eating. If I am to battle this illness I need to reconnect with these foods. Be under no illusion, this will NOT be easy. There will be tears, there will be massive inner turmoil. There will be days when I have to take a step back but I am determined to do this, to get this book done. By doing so, by showing myself, the true me, that I CAN eat 100 different things I can constantly have a point of reference to show that vile inner voice, the one that lies to me constantly yet seems so convincing, that nothing bad will happen. At the end of each recipe and accompanying picture I’ll just write a paragraph describing the feeling of having eaten whatever it is I’ve made, even if it’s hard. This is a journey; I want to share it with you. I might not beat anorexia, but I am damn well going to try and control it and in doing so I’m going to create a storm in the kitchen, create some amazing recipes and share them with the world. Shall we do this together? Yes? Let’s do this!!”
So that’s the idea. A recipe book, only with a massive twist. It’ll be a journey, a journey where I learn to reconnect with food. I’m realistic, I’m not expecting to beat anorexia, but I hope to at very least learn to enjoy what I can, at best learn to control my eating disorder. Both scenarios would give me some enjoyment of life back to a greater or lesser degree. It may not work, I have no idea. It may just give rise to a banger of a recipe book and the tale of someone who was at least willing to try, or it might show some progress where there’s been none so far.
I’m going to need encouragement, but not too much, that could railroad things. Eating disorders don’t like too much in the way of congratulatory evidence, strange as that sounds. I will admit that I’ve already done two recipes and tried them. I span out both times, but hey, I ate two things I haven’t eaten in over 2 years. You’ve read it, say nothing, I’ll just take it you’re glad about it and we’ll leave it at that 😉 However, words to press on with the actual writing and sharing pics of end result recipes? Crack on with that please! Oh, and any exposure from people who can do that kind of thing, that would be welcome. I am going to want someone to publish this thing when I’m done so any exposure would be good. What exposure also does is keep me from quitting when the going, inevitably, gets hard. This is me taking ownership of my own recovery chances. I have to do this. This is my journey, it starts here.
By the way, the book is called: The Battling Baker.
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On a scale of one to “I’m in the bowels of hell” this really has been one of the worst weeks in a long time. I can tell you, the bowels of hell aren’t too pleasant. It’s been a mix of a continuation of assessment work at the autism centre, a lot of physical tests at the GP, meetings & reviews with my CPN and, finally, a showdown with the team at Gloucestershire Eating Disorders Service. The outcome of that meeting was, in short, not good. That’s an understatement to be honest. I am divorcing them, but only because they have engineered it in the most despicable way imaginable. They would say they are “getting tough with anorexia.” I would retort that within this is still a person, still Simon Rickards, still dignity. Why am I divorcing them? And in reality, am I ACTUALLY doing so or are they actually giving me no options at all? In reality, are Gloucestershire Eating Disorders Service washing their hands of me, giving me an option that they know I am in no place to be able to engage with and therefore fully aware that I am going to be off their hands anyway. And if they know this how can they happily allow it? Here’s the thing; I actually asked that question. The answer is horrifying.
As my physical health has been deteriorating lately with anorexia’s stranglehold taking an even stronger hold, I had begged for further treatment and, with advocacy from my CPN, the ED services had re-engaged with me. I begged them for further inpatient treatment, afraid of my own vulnerability at the mercy of the eating disorder’s will and not trusting of my own strength to be able to engage with their day treatment programme, the very one that I had failed at right at the start of my descent into all this when I wasn’t as bad as I am this day. There was resistance to my pleas but I felt like maybe I was getting somewhere, particularly given that the physical issues were becoming ever more serious. Yesterday’s meeting was with not only my care co-rdinator, but with the decision maker, the man who decides what options to give a patient in the services’ care. After keeping me waiting almost an hour past my appointment time and barely apologising for it they began a line of questioning that almost made me feel like they were calling into question my whole diagnosis. I stopped them and asked them if they thought I was making it all up, becoming emotional. They assured me this wasn’t the case. They checked my weight. Still very low. They checked my pulse. Still very low. They acknowledged my low body temperature and so on. They could clearly see just what state I was in. But they were being very abrupt, almost to the point of how a boss speaks to an employee that hasn’t been doing their job properly. Now, I know that people with eating disorders have to take some responsibility for their recovery, I get that, but at the same time when you are very ill, and have had zero help, support or therapy for over 12 months it’s bloody hard! Their approach took none of this into consideration and I felt like my dignity as a human being was being compromised. At this point we hadn’t even got to the hammer blow.
They have decided that under no circumstances will they offer inpatient treatment. They also regret ever giving me inpatient treatment in the past, suggesting it did me no good (well, it didn’t, but only because it was handled badly) and that it doesn’t matter how I am now or will be in the future it won’t be happening again. There are a variety of treatment options accessible through them, however I can only access them through one route; by doing their day treatment programme. Now, if you have an eating disorder what I am about to say may be triggering so read on with that warning in mind or close the browser now. Otherwise those without or accepting the warning; I haven’t eaten a proper meal since I left the last eating disorders unit in Bristol this time last year. Anything that I’ve eaten out of the boundary of what my eating disorder dictates…well, I’ll just say I deal with it, again as my eating disorder dictates. Rules of day treatment; eat ALL food within 20 minutes. There is NO flexibility. Outside of the programme, at home, you are to follow the agreed meal plan and not engage in any eating disorder behaviours. Ok, all fair enough – people go on that programme to get better and sign up for that. Understand this: I WANT TO GET BETTER. I want to get control. I may never get rid of this completely, but I want control. So take that as read before we go on. Back to my point. I have not eaten properly in over a year. There is no chance in hell that I am going to be able to go from where I am at this moment to eating a full meal (with pudding) in 20 minutes. There is no way that I am going to be able to spend 18 hours a day in my own company outside of day treatment, and weekends, and be able to not engage in behaviours that have dominated my life for approaching two and a half years. It doesn’t matter how much I want to be better than I am, I am mentally ill and at this stage, right now, as things stand, day treatment will not be an option I can realistically succeed in. They know this, I know this and I am sure that anyone reading this will understand and will come to know this too.
So I asked them this question: “If I come on day treatment and fail one meal, what will happen?” Their answer: “We will discharge you from the programme and from the service.” So I asked them; “What if I don’t do the day treatment programme?” Their answer; “We will discharge you from the service.” My final question: “So you would knowingly, wilfully and happily discharge someone and give no help to someone with anorexia, who is as ill as I am?” A one word, cold, emotionless response: “Yes.” It was at this point where they claimed they were being tough with my eating disorder and not me and didn’t offer any support when I was clearly distressed. They told me to think it over and tell them next week. In my emotional state I told them I would if “I was still here.” They knew what I meant, read between the lines and you will too. I didn’t mean it but I felt it in the heat of that moment. Their response was to quickly usher me out of the room and escort me out of the building as quickly as they could.
I have given them many reasons why I believe things could be different with treatment at this point in my illness. Sure, I am much worse than I have ever been, but I believe that if I can get on the recovery path there are things that I can focus on now as a way forward. I’ve not had that before. My passion for baking, healing broken relationships, real concrete and good things that weren’t a part of life when I tried to engage in treatment in the past. Before I came out of treatment to….nothing. Now it would be different. This situation I’m in now is frightening, because I am going to have to rely solely on myself. I now have nobody to turn to in a professional capacity to help me fight and get control of this illness that has controlled me all this time. I know now that I am stuck with this for life, and I need to find a way to survive it for as long as I can, so that I can live.
I‘m not going to do that day treatment programme. I don’t want to suffer the indignity of being thrown out of a building in front of 9 other people who are all struggling, I’ve already had that happen and it’s a horrible and embarrassing feeling. Dare I say, it’s even more triggering than some of the more obvious things people expect. Also, because of how I’ve actually been treated on a human level I wouldn’t want to be treated by the individuals who operate within that service. They place no value on me as a person, don’t allow me any dignity, respect and have never listened to any of my views about my treatment. This ISN’T just about them not giving inpatient treatment when I’ve asked, there have been many MANY other times when I have been ignored, belittled, talked down and insulted (once they actually had to formally apologise to me) and I actually think they have done and would continue to do more harm than good.
So that’s it, this fight will have to start again, only I can only rely on one person. Me. I have absolutely no idea where to begin, how I will make even a baby step forward let alone a normal sized one. At the moment all is as was yesterday, last week, a month ago. At some point I need to find a starting point. One things for sure, it won’t begin with that team, ever again.
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!