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
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!
I appreciate I haven’t said an awful lot lately. Those that follow me on Twitter may think that I’ve been ok as I’ve deliberately not been putting much about how things are. I try not to be that person who is a) triggering or b) constantly going on about their illness. I’ve been guilty of that in the past and found myself reading some of it back and being angry at myself. I don’t want to be a “victim” nor appear to be, or give people fuel to think I’m vying for attention – that’s something I was once accused of and it cut me to the bone. Indeed my Twitter posts have been mainly about how brilliant Wolves have been doing (I’m SO proud to be a Wolves fan right now) and all the different things I’ve been baking. What a contradiction for someone with an eating disorder right? But it’s a passion. I might not be able to partake, but I still love that creativity and the joy it brings people.
But here’s the truth. I’m gravely ill. I’m at my lowest weight since this eating disorder took hold and things have come to a head. My CPN intervened and now the eating disorders team are back involved. A section order was on the table, and still is. Yesterday I met with the ED team who are very worried about how things are and have sent me for an urgent medical assessment this morning (22nd November). The professionals involved in my care, the ED team, my CPN, my psychologist, psychiatrist and GP, are all meeting on Monday and will make a decision on how to act. This may be a section, it might be a straight referral admission onto an ED unit or they may try and do a community based programme that is far more intense than anything they’ve done in the past. This will all depend on the medical assessment and other factors. I think an admission is the preferred option, hopefully under referral.
I’m not scared, I’m relieved. Quietly I’ve been getting to a place where I knew I was in danger but felt unable to do anything about it nor ask for help. I’m glad my CPN noticed and stepped in. I don’t want to go on about it on Twitter so if I seem “normal” on there just know that I’m shielding the world from the hell I’m dealing with, they don’t need to see it. And hey, I like chatting about how awesome Wolves are. Speaking of which, I’m determined to go one last time on the weekend before I can’t anymore. It’s going to annoy me not being able to go for a while, especially when we’re doing so bloody well. Typical!! Although, if they do go with the community based approach I will still be able to go…long shot but fingers are crossed. AND I’ll be able to go to see Shed Seven (thanks Rick Witter). Anxiety permitting.
Thank you to those who have been so supportive – you know who you are – you have been incredible x
“With great power comes great responsibility.” Whether or not Louis Theroux has great power is maybe up for debate, but he is certainly an influential and respected figure. You only need read the reactions on social media to any announcement of, or feedback to any of his documentaries to know that he is both highly respected and revered by millions across the world. I include myself amongst his admirers. Indeed, I’ve spent many hours watching his in-depth look both into the lives of the rich & famous and tackling the dark worlds of subjects such as alcoholism and America’s gun culture. His unique method of engaging with the contributors, of gently exploring underneath the shell of the issue to pull out often difficult stories of why they lead the lives they do, is both skilful and, in some ways, really quite endearing. From a viewers perspective you can’t help but feel like you’d want him as a friend, a confidant, someone with whom you would run to if you were ever in need of a shoulder to cry on, not because he would necessarily have the answers but because you know he’d ask the right questions and would listen.
So, you can understand why when, in March this year, I was contacted and asked if I would be interested in taking part in a documentary in which Louis would explore the mysteries surrounding anorexia, I readily agreed. It would be an opportunity for me to fulfil two things. First, as someone who is passionate about showing that anorexia can affect anyone, regardless of gender, age, background, sexual orientation, and equally as passionate about ensuring that nobody ever gets to where I am now and seeks help at the earliest possible opportunity, I knew that I would get a chance to lend my voice and tell my story to an audience potentially far greater than most other documentaries that had been made to date. Secondly, it would be a chance to meet Louis Theroux. If you’re an admirer of his and the opportunity comes to take part in his work and you’re willing you’re going to want to do it, right? Let me make this abundantly clear however, the first part is the most important. It was never about getting my face on the TV, there are much nicer ways of doing that and anorexia is not something I want to be known for (quite frankly it can get stuffed). However, I would do anything I can to stop someone who is heading this way in their tracks and to seek help, and that was my sole intent in agreeing to do it. Meeting Louis was the “nice bonus.”
Between March and July I met and had discussions with the producers who explored more about how anorexia had & is affecting me and what would happen when Louis came and filmed. When that day eventually came it was what you would expect from a viewers perspective, however being the subject was very hard. Nothing quite prepares you for the reality of how Louis does things. There’s no secret way he does it, it’s all as you see it on TV, but it really can break you down in the moment. My interview largely centred around me engaging in something I do a lot – baking. I made Louis & the crew flapjack whilst he interviewed me, asking me about how the illness affects me day to day, how it gradually became a feature of my life, what influences allowed it to take hold of me, what I felt I had lost materially and otherwise. My mum was also included and he asked her about the changes in me and how the impact of anorexia had affected relationships within the family. There were some tough scenes including one when the illness itself stepped in and made me “jittery,” reminding me that I should be taking laxatives and an emotional discussion took place with Louis almost trying to talk me out of it, me breaking down in tears and, in the end, me taking them anyway. Maybe it’s a good thing that wasn’t shown in the end (I’m coming to that), although maybe it should have been – seeing the power of anorexia in its most raw form. There were some lighter moments too. As Louis tucked into a large piece of the finished flapjack he said that I should go on “Bake Off” (I really want to do this people, I’ve just applied!) and we had a good giggle about that. It wasn’t all dark.
As those of you that watched the documentary tonight will know (Louis Theroux: Talking To Anorexia) this was cut from it. I had already been told that this would be the case. They like to do follow up interviews and check on progress and logistically it wasn’t feasible for them. In fact, the documentary featured 4 women staying in 2 eating disorders units in London, entirely not representative of the fact that anorexia (or ANY eating disorder) can affect ANYONE regardless of all the things I mentioned above. I also knew that this would be the case and had already been quite upset. I was upset at being left out without there being any men included and I was upset that I’d laid myself bare to Louis & the production team on camera and didn’t get the chance to do what I set out to, to hopefully make a difference to at least one person’s life, to stop someone ever getting to the point where their entire existence is determined by what goes on in their head at the hands of this illness. It was so important to me that everyone that COULD be affected by this monstrous illness was represented and I really felt, having been part of it, that they would be. That was as important to me as helping to stop anyone getting to where I am. I’m so disappointed that arguably one of the most influential documentary makers in the world has omitted the voices of a true representation of the indiscriminate power that anorexia has, especially as I vocalised how important I felt that was. For me he’s dropped the ball for once, and it’s a great shame.
On the plus side I do believe that they’ve captured some of the true hell that this illness dishes out. The inner conflict, the power it has, how it refuses to let go of its victims and, ultimately, all it wants to do is kill you. If we’re all honest with ourselves, or allow logic in, we know this. But it silences logic all the time – we must do what it tells us, it thrives on our fears. That very fear of letting go of it, of recovery, is what keeps us enslaved. For many recovery comes, for too many it doesn’t. Louis has done well to show why we are as we are and for that I respect what he’s shown. But I can’t get away from the fact that there still should have been a wider representation of the type of people it can affect, i.e. anyone. We spent the time, we had the material, it should have been used.
Don’t get me wrong, one mistake doesn’t change my view. I still think Louis Theroux is a great man, a great documentary maker and I still admire him immensely. The producers have promised to send me a DVD of our interview which is good, I hope that one day I’ll be able to watch it from a place where I have control over my illness as a reminder of where never to go back to. I say control because, as I’ve said in the past, I know that I will never be fully rid of this. But I have hope that maybe, just maybe, I’ll get help one day (if the eating disorders team ever change their mind and actually help me) and find a way to control things.
Sadly, I’ve taken a hit over all this. Anorexia, by it’s nature, will always seize an opportunity.
“They didn’t think you looked ill enough. You weren’t in hospital so they didn’t take you seriously enough. You’re too heavy. Do something about it.”
That’s what anorexia tells me since I took the call just over a week ago. Not anyone’s fault, that’s the nature of this beast, this illness.
I’ve lost just over half a stone since taking that call.
Anorexia. That’s the true voice, right there.
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.
Seven years ago today I drove into Gloucester for an appointment with my psychotherapist. The appointment was at 10.40am. By 11am I was outside the psychotherapist’s building in the back of an ambulance. I was hooked up to a heart monitor, having injections into my stomach and listening to paramedics tell me that I was having a heart attack. For the next few days I was to battle for my life until I was stable enough to have a life saving procedure to have two stents placed into my heart. I guess today could therefore be classed as an anniversary, the anniversary of the day that I almost died. The day that my body almost gave up on me. The day that over-eating, drinking and smoking took their toll on my heart and it said “enough is enough. I give in.” The weird thing is I was at my psychotherapists, it’s an oxymoron. Twelve months before that point I’d tried to take my own life because my mind was broken, but I was in a better place at the point where my heart decided to work against me.
Fast forward to today. You would think that I would be looking back and reflecting on the fact I survived. I should be using it to help me change where I’m at now, to drive me onward in my battle with Anorexia, Borderline Personality Disorder, anxiety and to help me better manage my Asperger’s traits. I’m glad I survived and been able to enjoy the times I have up until two years ago when Anorexia came knocking. However, if I’m being wholly honest, lately I have been spending a lot of time locked into a mind-set of wondering whether I would be better off not being here at all. This might sound dreadfully defeatist, a little self-indulgent in the misery stakes and might provoke annoyance in some people. But when you are faced with this illness, and have been for so long, when you aren’t getting the support you so desperately need and you are living the same routine each and every day with no end in sight, you really can’t see a way out other than the eternal comfort of the never.
What have I been doing lately? Very little different. I’ve baked a lot. Most of it has been very driven by the eating disorder. Sometimes the compulsion is so strong that I just make something and then get angry and throw it away. Most of the time I make stuff and Mum takes it away for herself, my step Dad and her friends & neighbour. I get inspired by Bake Off a lot and try and recreate a lot of the things they are making. Don’t get me wrong, this isn’t all ED inspired, there is a creative element there and a joy. I just can’t indulge in any of it, there’s no way anorexia will allow it. If only.
I’ve been to all Wolves home games so far. I leave 5 minutes before the end of each game to avoid any kind of chance of getting crowd panic. It cost me the other day when Danny Batth scored a late equaliser, but that’s the price I pay to keep myself feeling safe. It’s a struggle at times, especially feeling week and having to amend my ED habits, but I tend to just not eat at all on match days. It’s easier to keep the ED voice quiet. At least I get to go!
But that’s the thing – dancing with the devil in my head in order to do anything I want to do takes away the full pleasure of doing things. I hate that. Why should I have to compromise everything in order to do anything? This is why I spend 99.9% of my time locked away in my flat watching Netflix and running back and forth to the bathroom. This is why I wonder whether I would just be better of having not survived seven years ago, or not surviving now. I’m going on a week’s holiday with mum & my step dad shortly. It’ll be nice to get some sun but, of course, the whole thing will be tempered by the ED and a lot of what I wish I could do I won’t be able to. When I get back I had been thinking of just giving into everything the ED wants and just allowing it to slowly take me for good. I echoed this to my CPN recently. I have a new referral to a psychologist as a result. Hopefully this will lead to some more meaningful treatment because, again, nothing has been happening. I’m still eating next to nothing, getting lighter, bombing laxatives, walking when I can. Still no ED support, no therapies elsewhere. I had to have a course of injections to right some imbalances in my bloods. Physically I’m a wreck really.
The life I wish I could have isn’t there. I can’t get it back myself. The professionals don’t seem able to help. The system is failing me. This anniversary – I wish I could celebrate it. I survived. I can’t celebrate that. What a shitty illness this is. Fuck you anorexia. You are worse than that heart attack. That was fixed by two stents and the skill of a team of doctors. You have far more power and you are looking more likely to kill me. Bastard.
Fingers crossed for that psychologists appointment this week.
There has always been a need for mental health issues to gain greater media coverage to ensure wider understanding and breaking of associated stigmas. Thankfully, over the past few months, there have been a number of high profile campaigns to ensure this has happened, and I’m glad to see that on the subject of eating disorders there have been a few stories run. I myself have been both the subject and included in a few of these stories, and have always agreed to do them for that purpose; to help educate and encourage anyone suffering who hasn’t already got help to do so.
Tomorrow (24th July), BBC Panorama will be broadcasting a programme called ‘Men, Boys, Eating Disorders’ featuring international rugby referee Nigel Owens, MBE. Nigel has been struggling with bulimia for the past 27 years and will tell his story and meet other sufferers throughout the programme. Some of his story has been published today on the BBC news website and can be read here.
I’m full of admiration for Nigel for sharing his story in such a public way, especially in view of his profile, and really hope that this will do exactly what is needed – both educate and inspire those who are suffering in silence to get help. Also, as a man, I hope that it will again show that eating disorders don’t discriminate. They aren’t confined to teenage girls, they can affect anyone regardless of gender, age, sexual orientation, colour of skin or whatever. They are real, legitimate, debilitating and vile illnesses that destroy lives. I urge anyone that can to watch the programme and really try to understand what sufferers go through, as hard as I know it is to understand.
Of course, media attention and understanding of these matters are only one part of a wider issue. The focus needs to continue, and the media coverage needs to maintain in order for people to continue to be educated and inspired to get help. However, in order to get the help needed there needs to be the support services and right treatment available. As I said in my last blog post I have withdrawn from social media in terms of posting about my illness and I’ve stuck to it. I have continued to use it for posting about everyday things, but on the subject of my own health I have said nothing, even when asked. The truth is I continue to be very unwell. Anorexia is grinding me down, depression has crept in and I’m heading toward my lowest weight at any point since I was diagnosed. All eating disorder support that was previously there has now been withdrawn.
As I discussed in that last blog post the ultimatum was day treatment or a “therapeutic break.” As I said then I know in honesty day treatment would cause me far more damage than good and that I’m honest enough with myself to know exactly what I need. However, the commissioners won’t allow it, the NHS cuts being such that the money and options aren’t there, and so I’m without the help I need. Where this will end I don’t know (sorry, I’m repeating myself) but I’m numb to the worry of it. I’m a hamster in a wheel, days are all the same, anorexia has become the larger part of me and I haven’t got the treatment options open to me to help me to fight it.
I don’t believe this is the case for all, however. I think this is a case of a ‘postcode lottery’ and that because Gloucestershire has the day treatment option it’s something that has to be tried first. Truth is I have, it’s just that they insist I try again, ignoring my own thoughts on the subject. There has to be flexibility, they just won’t budge. There’s enough of my mind intact to know what’s damaging and not in terms of treatment. C’est la vie. In other areas of the country I know that treatment options are a lot better for people. Don’t be put off by what’s going on for me – GET THE HELP YOU NEED as soon as you can and be forceful. Meanwhile we must push government for more funding into the NHS for mental health care. Nobody should be held back from options based on where they live, nobody should have anything but the full range of options open to them and EVERYONE should have a voice in their treatment.