A week today I will be on my way to cygnet in Coventry to begin my recovery journey. I’m feeling super nervous about going and my illness is trying to convince me I’m too fat to go there. I’m full of urges to end my life and/or abscond. I really don’t want to go.
I don’t know a huge deal about where I’m going, I don’t know whether I’ll be allowed my phone or iPad or be able to go on the internet so I may not be able to continue blogging.
So here goes, let the countdown begin.
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.
Yoda’s wise words “you must unlearn what you have learned” resonate a lot with me when it comes to recovery both with my personality disorder and eating disorder. I have to unlearn a lot of behaviours and thought processes that I have learnt.
I need to learn how to eat normally again. I’ve forgotten what an average healthy diet looks like and I need to learn this not only in my head, but my body needs to learn to tolerate a normal intake too. I need to learn how to just simply eat without compensatory behaviours afterwards. I need to learn portion sizes and be able to treat myself without feeling unbearably guilty or it turning into a binge. I need to learn how to deal with emotions and the total pain and anguish I experience without using self destructive behaviours.
I have been unwell for a long time and I have learnt to live my life this way, now in order to reach recovery and live a more stable life I need to unlearn these thoughts, beliefs and behaviours that enable me to cope with the world around me. Recovery isn’t just about learning, it’s about unlearning too.
Panic attacks are a frightening experience and involve feeling faint, heart palpitations, nausea and breathlessness. These symptoms can become so strong that a person feels like they are going to lose control or even that they are having a heart attack and are going to die.
Panic attacks can be triggered by stressful situations, such as taking an exam or a packed tube train but they can happen for no apparent reason at all.
Talking about them can help, there are breathing exercises that can help calm a person down or using distractions like ‘I Spy’ on a busy commute or listening to music. Talking therapies and medication can also be very effective in managing panic attacks.
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’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.
Okay so it’s been a while, I spent 8 months in a secure unit with my weight dropping and my mental health declining, then in December an eating disorder nurse from my home team came to see me at 8am in the morning. I remember being woken at 7am and having a shower on a chair because my legs would not stand and then being whisked off to the relaxation room to see her.
The nurse wanted to admit me to a general hospital for refeeding but I refused as it was so close to Christmas and I just wanted to be where I felt settled for the festive period. That night I was driven back to my home county and admitted to a general ward. I felt like I was living in a nightmare. I had an NG tube inserted and was started on a feed straight away, drips were in my arms and blood tests taken.
A month later, here I am, still in the same bed, still being fed through a tube and struggling enormously. I feel fatter with each day, the sips of ensure are getting harder and not easier. The plan from here is to go to an eating disorder unit in London which I’m super scared about. I don’t know any more. This battle is hard.