Easter with an eating disorder can be extremely difficult, just like Christmas if not harder. This year whilst I’m stuck in hospital being tube fed I won’t have to face any Easter eggs or family feasts which is a relief in a way but it also makes me feel sad. I wish I could join in with the world and celebrate. I wish I could be around my family and go for a nice Easter walk. I wish I could taste chocolate on my tongue. I wish I could tuck into a roast…but even when I’ve been home Easter has been a challenge.
Just like any other celebrations, birthday, Christmas and Easter became days I tried to give myself ‘off’ from my eating disorder but of course you can’t just have a day off from a mental illness. Generally suffering from anorexia means my diet is restrictive but on these days I would almost give myself permission to eat and with the mixture of excitement, fear, extreme hunger and excuse my language but ‘fuck it’ attitude I would end up binging. I would be scared of the Easter eggs I’d received and would want them out the way so I’d eat them all and then physically and mentally I’d end up feeling rubbish. But it wouldn’t just last one day, it’d last weeks. It’d trigger a splurge of binging and everyday I’d be cramming all the food I could find into my mouth. Easter would ‘ruin’ a restrictive intake and my weight would increase to a number and size I was uncomfortable with. One tiny day would make me spiral out of control for weeks to come. What was meant to be a happy celebration would become a nightmare.
I hope that next year I do get to have a happy Easter. I hope I’m home for it and that I can eat a cadburys creme egg and an Easter egg and have lunch with my family before going for a walk in the fresh Spring air.
I would like to wish all my followers a happy Easter and I truly hope it is a happy Easter. I send you all my best wishes and hope the day doesn’t bring trauma and fear to you.
This week my psychologist and I spoke about if I were to get well and what it would look like and my fears around it and to be totally honest I can’t remember what it’s like to be well. It has been over a decade of illness and nearly two years since I came into hospital after a handful of shorter admissions.
If I really try to imagine it I imagine a ‘well’ life to be quite good. I wouldn’t be in hospital and I’d be at home again with my family and my dog. I’d bake and cook meals and snacks for myself, I have hoards of recipes saved for when I get better and I can’t wait to try them out. I would enjoy eating, an idea that seems incredibly alien to me right now. I would go to ballet and help out with the younger classes. I would go to the beach with my friends and laugh the night away at karaoke. I’d watch telly with my family and go to the cinema with my dad. I’d play on the 2p machines at Barry Island with my mum. I would have my freedom back and I could go on walks alone, just my iPad and me. I’d experience new things, new foods, new places. I would live instead of exist. I would be able to be an adult although that absolutely terrifies me.
Everything about getting well is full of uncertainty and it completely overwhelms me. I’m scared to eat again, it’s been nearly a year since food passed my lips and it terrifies me to think of the day I have to put it in my mouth again. I don’t even know how my stomach would physically handle solid food after so long. I’m scared of the taste and texture and ‘greasy’ feeling food gives me. I’m scared to gain weight, to be fatter than I am now. I’m scared that none of my clothes would fit me. I’m scared that being bigger would make me hate myself even more than I already do. I’m scared of the responsibilities that come with life, I’ve got a lot to learn, and I’m scared of the day another of my loved ones dies, it feels unbearable to think about my mother and father dying. I don’t even think I could handle my dog dying. I need to reintegrate back into society and that scares me, even the thought of standing in a supermarket aisle terrifies me at the moment because I am so used to these four walls. I also worry that I wouldn’t have anything to blog about. My whole social media outlet is centered by mental illness and if I were to get well then where would that leave me? I’m not sure that I know who I am without all of this and the thought of being an adult terrifies me. I might be in my twenties but I don’t feel ready for that yet. What would I do for a career, I mean I don’t even have A levels, would I have to go back and study? A recovered future is full of questions. If I were to get well then I wouldn’t have a mental health team around me, these people I have known for years will not be in my life anymore and that really scares me.
I want a normal life, a recovered life but I’m not sure that it’s possible and that makes me feel a bit torn when it comes to recovery. Part of me wants to really give it a shot but the other part wants to give up and die and I can’t say which side is winning at the moment although it is probably the latter.
A couple of years ago I made a short video with Fixers about what it’s like to be sectioned for an eating disorder. This came about after I saw a comment online saying, “I wish I could be sectioned so that I could have a hug” I was utterly shocked by this. Being sectioned is not something I have ever wanted to happen to me and hugs are very rare when you are in hospital. After reading the shocking comment, I made ‘sectioned’ which can be watched here.
My life has changed a lot since then, a lot has happened and when I watch the video now I wish I could update it so I thought I’d do it in a blog post. In the video I had only experienced being sectioned under section 2 of the mental health act. I have now been detained under section 3 of the mental health act since 2015 and this is still on going.
In the video I talk briefly about the two weeks I spent on level 3 which is where a member of staff remains with you at all times, this includes in the shower/bath, on the toilet and whilst sleeping. I have now been on level 4 2:1 for 2 months and this is also ongoing. This means two members of staff are within arms length of me at all times. So now it’s not one pair of eyes on me while I sleep, go to the toilet, shower etc but two pairs of eyes on me. I haven’t gone to the toilet unsupervised since May 2016.
My ‘choice’ remains the same. I have to drink sickly, gloopy supplements or they go down the tube I have up my nose. The difference is that now I can’t bare to let it touch my lips and so everything goes down the NG tube. I say ‘choice’ because I don’t really get a choice, I have to have the supplement drink one way or another. Some days I am restrained whilst they pump the feed down my tube.
I still feel my skin crawling with calories, itching, bubbling. Maybe this sensation will always remain with me around food, maybe it will never go away and that scares me.
In the video, I say “The final section, I hope it was” and I am gutted to say it wasn’t, I have a few more to add to this list. I wish my update was that I was living a normal life and the facts of the video had not changed. I wish I could say I was well rather than wishing I could remake the video to fit with my current circumstances.
My message remains the same: Mental illnesses are not fashion accessories, eating disorders are not glamorous and being detained under the mental health act is not something to strive for. This is still my life and I would not wish it upon anyone.
As cliche as this sounds, I can honestly say that I would not be alive if it weren’t for music. Music has got me through the good times, the bad times and everything in between. I will never forget getting up in my hotel room and listening to ‘I’m on top of the world’ by imagine dragons whilst getting dressed before my appearance on BBC Breakfast. I will never forget listening to Meatloaf in the car on the way to the airport before we flew to Rome. That’s the funny thing about songs they hold memories and that can be a double edged sword. Whenever I hear ‘moves like Jagger’ I am plunged head first into the memory of sitting in the lounge in a psychiatric hospital whilst a patient dances around the room. Hearing ‘cake by the ocean’ will always remind me of the cold,hard days spent in utter boredom in the secure unit. There are Ed Sheeran songs that remind me of ex partners and no matter how much I like Ed Sheeran, I cannot hear these songs without feeling like complete rubbish. Music can be therapy but there is also a danger of music being harmful to the mind so be careful.
So, music and recovery. I use music at the moment to get me through my feeds as I’m currently being treated for anorexia nervosa and am being fed through an NG tube. I have a specific playlist named ‘Feed’ which consists of:
- I’m yours-Alyssa Bernal
- Boom clap-Charli XCX
- Learn to live-Darius Rucker
- Starman-David Bowie
- Survivor-Destiny’s Child
- On top of the world-Imagine Dragons
- Cold in Ohio-Jamie Lawson
- Living in the moment-Jason Mraz
- Breathe in, breathe out, move on-Jimmy Buffet
- Little me-Little Mix
- Scare away the dark-Passenger
- Superheroes-The Script
- Let it go-Demi Lovato
- Heroes-David Bowie
- Chocolate-The 1975
- Love my life-Robbie Williams
All of these songs I either find relaxing, recovery focused, feel good or they hold positive memories. I find feeds really distressing and I know a lot of recovery can be distressing, that’s why in DBT there’s a whole module called ‘distress tolerance’. For me, music is my distress tolerance. ‘Cold in Ohio’ always relaxes me whilst ‘living in the moment’ reminds me of mindfulness. ‘On top of the world’ is a proper feel good song and also reminds me of the positive memory when I went on BBC Breakfast. ‘Little me’ gives me the reminder that I want to make 4 year old me proud. Maybe I won’t be able to listen to these songs again once all of this is over but for now they are getting me through and that’s what recovery is about, getting through.
I just had a meeting with my psychiatrist, nurse practitioner and eating disorder nurse and I think it was positive. I felt supported by them and safe in their care and I felt listened to too. They have a multi disciplinary meeting about me every Friday so most decisions will be made tomorrow.
They wanted to weigh me and initially I refused because I believed I had gained loads of weight but then I allowed them to. They said it had dropped but I believe it maintained. I feel a bit less panicky and suicidal now I know my weight and it isn’t what I thought it was in my head. It just goes to show how much anorexia confuses the mind.
They’ve increased some of my medication but most of the decisions around ensures and leaves etc will be made in an MDT meeting tomorrow.
They also discussed the possibility of moving to a different hospital until I go to cygnet in May but I would rather stay where I am.
I also put requests in to see my dog and go out for my birthday. There’s a guide dog on the ward at the moment and it’s so nice to be able to be around and fuss a dog again.
I’ve really struggled the past few days but after our meeting I’m feeling a lot calmer and more okay about everything.
I’m by no means well. I’m typing this in a general hospital bed with a tube up my nose and two members of staff arms length from me but I’m better than I was. Yes, the slight bit of betterness was due to being forced into treatment (sectioned, force fed and having medication forced upon me) but I still am better than I was and I’m finding this whole thing really scary.
I can now sit up on my own for a good length of time, I can concentrate enough to read a book a chapter at a time, I can walk to the toilet with assistance, I can just about wash myself…these are all things I couldn’t do when I arrived on this general ward in December. Whilst it’s nice that I can do these things, it scares me. Without getting a little better I wouldn’t be able to type this post.
It’s scary because I don’t feel ready to be better, to live a well life and have a healthy body. It’s scary because life scares me, responsibility, finances, relationships, careers…the list of fears is endless and getting better means facing all of these things.
I’m used to feeling poorly, I had got used to the weak, frail, dying body I was in. I wouldn’t say I liked it but I was used to it and the change in health (whilst still not great) feels somewhat uncomfortable. I can’t get used to being able to do a fair amount of things by myself. I’m not sure why but I don’t like it and it really, really scares me. I want to go backwards to where I was in December and I know I shouldn’t want that but I do and maybe that’s what this illness does, I don’t know. I just know that I’m scared and confused and hugely uncomfortable.
It’s that time of day when my feed is normally due. The nurse is doing her medication rounds and I don’t know when she is coming to me. I am on edge. Distracted. Distant. Every time I hear footsteps outside my door I am thrown into panic and my heart races. I don’t want to do this. I’m so uncomfortable in my body as I am let alone with more calories being pumped into me. I need the control back, I wish they would give me some. I have no choice, I can drink the ensure, or have it put down my NG tube willingly or I can be restrained whilst the thick, calorific liquid is pumped into me…but I don’t want it. I don’t want it at all. I’ve had enough today and I feel that as an adult I should be able to control what goes into my body. I’m just so scared. I want to be left alone.
I have no idea what I look like. People tell me that what I see isn’t what everyone else sees but it’s so hard to believe that when I can see with my own eyes and physically feel the fat on me.
I hide under my blankets and dressing gown so that people can’t see how fat I am. I feel as though everyone is judging me and that they must be thinking she’s too fat to have a feeding tube. She doesn’t have anorexia. Everytime my feed is due I get in a state of panic and anger…why are people feeding me when I’m this big, the nurse giving the feed must think I’m a joke. I’m not thin enough to struggle this much with food.
When I look in the mirror I find my reflection disgusting. I don’t see a clinically obese person staring back at me but I see thick thighs, a double chin and sticking out belly. Physically I can feel the fat on me, I get physical feelings like a warm, tingly feeling in my fat places.
I’m told that I feel fat instead of feeling an emotion but I find this rather difficult to believe. The feeling is just so real to me. How can you disagree with something you see and feel?
I now know the plan with my care so I thought I’d update you all. I’ve been accepted by Cygnet Coventry, a brand new specialist unit that will open in May. They will accept me with the NG tube so there is no pressure to take things orally. Until then I will remain on the NG in general hospital with two members of staff at arms length at all times. It’s going to be a tough few months whilst I wait to go to placement but I’ll find a way to get through it.
Right now I’m laying in a hospital bed with an NG tube up my nose. I have no choice in it, it isn’t just an NG tube but an NG bridle meaning it’s tied to the bone at the back of my nose so I can’t pull it out. I have no choice but to be fed, I’m on a Section 3.
Five times a day the nurse comes in with a bottle of feed and syringes it down my tube whilst two people hold my arms. I feel out of control, as though recovery and weight gain are being forced upon me…which I guess they are.
I dread feed time, the moment I see the bottle my heart races. Watching her pour the gloopy, milky liquid into the cup engulfs me with panic. Then seeing that liquid being sucked up the syringe makes me nauseous. I want to runaway, I want everything to stop. Then the syringe gets attached to my NG tube and the thick liquid glides through the syringe, through the tube and into my stomach. I can’t feel it. I can’t taste it. It makes me want to tear my skin off. It makes me want to be sick. I hold in my tears throughout the whole process.
Afterwards I feel so uncomfortable, I can feel the rolls of fat on my belly and my double chin, my thighs thick as tree trunks. I fear the weight gain and I have no choice but to sit there and go through it. There’s nothing I can do about it and that’s what scares me most. I’m not in control.