I took the day off today to sort some chores out – and to sort Christmas out. As usual it’s snuck up on me. We’re going home to Ray’s family so i’ve ordered their pressies and getting them delivered to Wigan. Part of me loathes the internet stores, but as i’m disabled and i we don’t have a car, the convenience of ordering on line is just too good to pass by. Train travel at Christmas is bad enough without factoring in a pair of elbow crutches and parcels. Ray and i are planning on opening our presents at home before we travel. His are all wrapped up under our tree. Christmas cards are (made) and written, finally. I wrote them whilst listening to cheesy Christmas music this afternoon. I then had chance to phone Ray’s lovely mum. It’s a relief to know Christmas dinner will be at hers this year. Something i can tick off my anxiety list. It’s been a most productive day off. Come on Santa, i’m ready for you.
I woke up to the sounds of Ray getting ready for the above race. It was 7am on a Sunday morning. The next thing i knew it was 8.50am and time i really ought to be out of bed. I sat on the sofa with a blanket, 2 cats and a pot of coffee – a more ideal way to spend Sunday morning in my mind.
Ray’s home now – with his Christmas pudding. Not his best time, but he’s been a bit under the weather with a virus. I’m still dead chuffed for him. My running days are well and truly over. Today i’ll be spending a couple of hours filling out disability benefit forms as my mobility is exacerbating. I’m not jealous of Ray being able to run. I find a pleasure in seeing him train and i know how much fun he gets from it. I’ve been lucky in being able to once upon a time ski, run, ice skate. I can’t now, and there is no point dwelling on that. There are still tons of things i can do – mostly involving sitting down, lol.
Yesterday we had a last minute visit to Sheffield International Artist’s Book Prize at Bank Street Arts. There were 450 books of all shapes and sizes. It was quite stunning. As part of the exhibition the books must be able to be handled. To be able to touch some of the most exquisite pieces of art i’ve seen was just delicious. It was the last day of the exhibition so we caught it just in time. Being an art lover and a bibliophile i was in 7th heaven.
Mood wise i’m a bit all over the place. It’s a time of year which i can struggle with a bit.
Well, the last few days haven’t been so good. A long commute home on Monday due to two serious accidents followed by me being carted off to A&E via an ambulance yesterday.
I passed out at work and then threw up. Despite my pleas my line manager insisted on an ambulance and they insisted on carting me off to A&E. There were the inevitable questions on family health. I had to explain my estrangement – always a difficult thing to do. I feel such a failure. Then there is the question about mental health – another thing i find hard. The ambulance crew were brilliant dealing with both issues. I wasn’t made to feel judged, and they were very supportive. The staff in A&E equally sensitive and supportive. I had to again repeat my history and medical issues. When i spoke about my osteoporosis the lovely nurse asked if that was due to my anorexia. My reply was partly due to a lot of oral steroids, but mostly my fault due to the anorexia. Her reply was a very kind “that’s not your fault”. Fortunately nothing seriously wrong, just my blood pressure being out of whack. In the news there is a constant stream of NHS bashing, reports detailing poor care and a lack of compassion. The care i received was amazing. It was a challenging environment for the staff – an abusive person kicking off and swearing at them, repeatedly. A known person who is always in and always kicking off. They, despite the abuse, still treated this person with compassion…and still had time for people who weren’t kicking off.
One of the big issues with social media is that you have to be careful what you say about your work. Yet work has been tough for me and blogging is a way of getting that stress out. In the last 24 hours i’ve had some major news which proves i’ve not last my marbles and a fictitious report about me are wrong. In one of the cases it’s taken months to get this. It’s led to huge anxiety, a worsening of depression, and sleepless nights. This is round one, and i’m sure there are more battles to come, but the last 24 hours have made me feel more secure, more sane, and more determined to fight my corner.
As i type i have Bella on my legs (i’m laying on the couch). She’s fast asleep. A storm is raging outside and we’re all snug. I’ve been getting those awful thoughts of needing to be at home again. All the time. I’m hoping this is because we have builders in on Monday and Tuesday and they’re a threat (to my control freak head) to my pocket of safety, called home. It’s dreadful to be sat at work and just wanting to be home as it feels like the sky will fall in, even though you know it won’t…yet still it feels it…
Is the source of much head time. Billy Liar ED head hates me treating myself. Today i accidentally treated myself to the above product from Lush. I went in for essentials and spotted this…and as deep, hot baths help my joints…and i thought it was cheap, i bought it…then the shop person rang up my purchases, and i was very surprised at the total. I went back to work and told my friends there of my accidental purchase. They all thought i was worried what my amazing husband would say if he found out…i wasn’t, i knew he’d be pleased. It’s my ED head that’s yelling.
“What does it mean to have an eating disorder? What does it mean to be in recovery? We are given a picture of anorexia, a girl in her adolescence with protruding bones and terror in her eyes. Or every now and again bulimia makes an appearance, talking about the desperate obsession with food and a visual of a fridge locked shut.
I am in recovery from anorexia nervosa and I feel myself hurry to tell the worst stories, to shock my audience to understand how completely I lost my mind. But an eating disorder is not the worst story, the lowest weight, the biggest binge. For me, an eating disorder is the daily anxiety faced with breakfast, lunch and dinner. It’s the pain of shame that comes with being recovered in body but not in mind. It is an illness that becomes ingrained and a way of life. It begins with cutting back on ”bad” food because it gives you a sense of control and confidence. And then you must say no to a spontaneous meal out, because it feels more like a lesson in torture than relaxation. You might walk for hours with pain in your bones but there is no choice when you live with an eating disorder. An eating disorder means no joy or choice or life.
I don’t look sick but I feel it. Some days, I regret a biscuit so much that I claw at my thighs and wrists.
I have always used food for comfort and company. As a result I was morbidly obese by age 19. Confronted by grief, loss and illness, I dieted to cope. Restriction was self-punishment and self-destruction. A diet turned into a drive that I could not stop. I continued to lose weight until I found myself in hospital, a patient in an eating disorder unit.
It’s these stories people want to hear.
But now, almost three years later, I have a different experience of an eating disorder to share. I am a ”normal” weight, I have a job and I live independently. And I wake up each day and am met with a question, ”Breakfast?” I get up, have a shower, and decide what to wear. All the while I am mentally preparing to pour my cereal without weighing it. And then I get to the kitchen and I measure out my food because I fear pouring too much and overeating. Anxiety crawls up my throat and catches my breaths, making them short and sharp. I can’t face the challenge today.
I don’t look sick but I feel it. On a cold day I feel it deep in my bones and it hurts. Some days, I regret a biscuit so much that I claw at my thighs and wrists. I am swimming to the surface but I’m suffocating and I don’t know if I’ll make it.
There are moments that I can’t sit up straight because my chest feels weak and hollow. I live with a question, some days stronger than others: what if I can’t do this?
I chose to recover in 2011. I had dreams and hopes and suddenly I found a willingness to fight for them. I don’t mean it to sound simple – it was only with patience and help from others that I was able to move in a positive direction when every part of my body was pulling away from eating what was in front of me. It was a slow, painful process to gain weight. And then I woke up and found I had a life. I met my first boyfriend, I enjoyed studying and I allowed myself to enjoy going to the cinema and eating a choc top. I grew into my body and into my life.
I tell this story because we expect someone suffering with an eating disorder to look scarily thin, to have blisters on their knuckles or to refuse to eat. I don’t fit that description and yet I am not well. Some days I am consumed by the sensation that I am suffocating. I will never be able to adequately explain how frightened and vulnerable and angry I feel, because I ate breakfast or ordered something I wanted.
There are varying degrees; there is sick and defiant, there is sick and considering treatment, there is sick and accepting help, there is the journey into recovery and then, one day there is recovered. And I believe in recovery. I believe in treatment; when you don’t want to go and you ”don’t know what to say” because ”it’s pointless” and ”I’m not that sick” it is invaluable. But it’s an illness and it only gets worse if you leave it alone.
I still need support, yet I know I’m nowhere near as ill as I once was. I beg you; don’t dismiss someone because they look fine. Don’t dismiss yourself. Don’t wait to get help. I’m sorry that people are so judgmental. I’m sorry you think you’re not sick enough – not thin enough – until someone forces you into treatment. I’m sorry that eating disorders are misunderstood.
Just know, it’s not OK now but it will be.”
Being at a healthy weight is important, but it’s then that in some ways you need more help – different help. You’re thinking is less messed up than before as you’re nourishing your body, but often the things that tipped you into anorexia are still there. Then there is the constant need to be seen eating okay so as not to freak people out. A pressure to stay in recovery and not relapse. Trying to work out the universe without a map as the map you’d been reading from proved to be a lousy map, but it was all you knew. It was the only map you learnt to read. When you have a bad day in the office, restriction is no longer something you can do to cope with the emotions. You flounder looking for some “healthy” coping mechanism, but you might not have learnt these well enough. Sometimes i find recovery a different kind of lonely to the loneliness of anorexia.
I’m a bit of a chameleon. To my clients i seem the most cheerful person on the planet, to my colleagues i seem the bubbliest. To my friends i am someone who has to drag themselves to work despite how rough i’m feeling. I look everywhere to find something that will make me happy. It doesn’t have to be an item. It can be conversation from a cute child, geese flying above, or a rainbow, etc. At the weekends it’s Ray and the cats. I’m typing one-handed as Bella want her tummy rubbed. Today it was also the opening of a craft shop in a nearby town. We used get off the bus and step into an independent art shop. I would stock up on lovely things to use in crafts and card making. Then the owners retired. I was gutted. This little exploration every Saturday made me very happy. We still went to the town, but there was always a sense of loss as i got off the bus next to the empty shop. It’s now a cafe, and i wish them well. Today a major craft chain opened-up near the town center. It’s sad that it’s not an independent, but it will bring me and many others a happiness. Darian Leader, in his book The New Black talks of the importance of creativity in helping to dampen down melancholy. When i first read his book i thought it was a simplistic solution that could never work. A few months later i started at the eating disorder day hospital program and found that i wasn’t after all, completely un artistic. I also found that Darian was right, connecting with my creative side (that i’d presumed for 40 years i’d never had) has helped my mood a lot. I’m looking forward to playing and creating tomorrow.