Building a life worth living is a big part of DBT and it’s something I haven’t worked on much or even thought about until recently. I’ve been unwell for well over a decade and have been in hospital for a year and a half. I’ve never been a mentally well adult and have not been able to function at a normal level since school. For these reasons I have always found it very difficult to think of a life outside of my illness and in some ways that can hold me back in recovery. However just weeks before I’m due to go to a specialist unit which can help me I have an idea of how life will look when I come out of hospital.
I know I won’t come home fully recovered and jumping with the joys of spring but I imagine I’ll be able to function. I want to attend outpatient appointments with my mental health team but alongside that I want to work in a bakery, go to ballet classes, help out with the younger ballet classes and prepare and cook my own meals and snacks from scratch. I could then channel my obsession with food down a productive and enjoyable route whilst still enjoying dance and exercise at a sensible level.
If I can maintain that lifestyle for a while then the next step will be learning to drive and getting a place of my own even if that’s renting a studio flat. Then the next step, and the one I’m most excited about will be becoming a mother. I’ve already decided for very personal reasons that I want to be single so I will go to a clinic and use a sperm donor to conceive.
I think it is good to go to this new unit with an image of what I want my life to look like when I come home. So this is me thinking of building a life worth living.
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.
The complaint process is something I am currently going through and it has not been an easy ride. I was unsure of whether to complain at all because I didn’t want the hassle on top of everything else and neither did I want to make it awkward between me and the staff member I was making the complaint about. Then I realised that actually I matter and this matters. It’s important that the issue is raised and the staff member is educated otherwise her comments could haunt me for years to come. You are entitled to, and have a right to complain about the care you are given. If you would like to make a complaint about the care you have received then contact the service and ask for their complaints procedure.
The GP plays such a vital role when it comes to eating disorders. They are the key holders to all other services and provide referrals to eating disorder services and community mental health teams as well as referrals for the physical effects of eating disorders such as bone density scans.
The GP is the foundation upon which the rest of treatment is built. They often monitor the patient’s weight and do regular blood tests. They are often the first port of call for the sufferer. This is why it is so important that GPS have training and understanding in eating disorders.
I had been ill for years but when I went to the GP to ask for help I was terrified. It shocked me to see the words ‘anorexia nervosa’ on my notes and I so desperately needed help. Despite the low weight and terrible mental state I was told to come back in a month. A month is a long time for someone so desperate and poorly. I couldn’t see how I could get through another month and out of sheer fear and desperation I took an overdose which hospitalised me and resulted in a CAMHS referral and a referral to the eating disorder service.
Usually GPs continue to support the patient whilst they are under the care of mental health services monitoring both weight and bloods and it is important that GPs know how to support and talk to the patient in a way that is supportive and full of understanding.
When it comes to eating disorders, early intervention is so important. I often wonder what my life would be like if I would’ve had treatment much earlier on in my eating disorder. Looking back I just wish someone would’ve taken me seriously. My parents were called into school because I had been throwing my packed lunch away and concerned friends told teachers but other than that no action was taken. The school nurse’s response was to tell me that I didn’t want to end up like a girl in the year above me who had anorexia. On one occasion I did visit the GP but no further action was taken, there were no referrals to CAMHS or follow up appointments. I wasn’t referred to eating disorder services until I was 17, at which point I was years into my illness.
Early intervention is important because these illnesses are so easy to get stuck in. They take over the whole of who you are. Anorexia took over my body, my personality, my social life and eventually my identity. Food and weight were all I thought about and if I wasn’t obsessing over these I was exercising. It became my life and the longer it is your life, the harder it is to get out of. With early intervention comes quicker recovery and I believe there is more chance of making a full recovery too.
Early intervention isn’t just important in the beginnings of eating disorders but also when it comes to relapse. When I first relapsed with anorexia nervosa it took 13 months from referral to treatment by which point I was very poorly both physically and mentally. At the beginning of my relapse I had friends, a boyfriend, a part time job and I was studying A levels at college. At the start of treatment I hadn’t seen friends in months, I had broken up from my boyfriend, was unemployed and had lost my place at college due to my health. Now imagine if things had been different and I would’ve gotten treatment earlier on, I might’ve been able to make things work with my boyfriend and my job and college. I might not have lost my life to the illness and since losing it, I have yet to rebuild it.
Maybe with early intervention I wouldn’t be typing this from a hospital bed with an NG tube up my nose and maybe it would’ve saved a lot of heartache and pain not only for me but for my family too.
Eating disorders are potentially fatal illnesses and unfortunately some sufferers do die whether this be because of health complications or suicide. Early intervention would save lives.
So my message is this: Early intervention when it comes to eating disorders is key and life saving in more ways than one.
I was amazed to receive an email congratulating me on coming in the top 60 mental health blogs on the planet. Mental illness Talk came in at number 41.
The link can be found here
Today is Time To Talk day 2017 so take 5 minutes to talk about mental health. It is so important that we get these conversations going because they can save lives as well as working to stamp out stigma.
This Time To Talk day, I’m going to tell you a little bit about how I’m spending it. I’m currently in a general hospital being tube fed for my anorexia, I’m on 2:1 observations meaning I have two members of staff with me at all times and I’m on a level 4 which means I must be within arms length of the staff members, this includes when using the toilet. So there the facts about my situation but now it’s time to talk about how I feel.
I’m confused, recovery and weight restoration is being forced on me and I’m not sure that I want it. I’m scared about the future, my team are looking for a unit to send me to and so far none have accepted me. I don’t know what the near future holds for me. I’m homesick, I haven’t been home in 18 months and I would give anything to sit on the sofa with my family and dog and watch some rubbish telly. I feel alone and lost, I haven’t seen many people in the last 18 months and my grandmother has passed away during that time, I never got to say goodbye, I wasn’t well enough to go to her funeral and that breaks my heart everyday. I’m annoyed and angry at myself for losing out on so much. My goddaughter will be 3 in March and I’ve missed so much of her growing up, my dog is 14 and I’m scared she will die before I get home.
I have conversations about mental health every single day because I am unwell, but you don’t have to be ill to talk about mental health. We all have mental health, so please this Time To Talk Day 2017, take 5 minutes to ask someone how they are, send a text, natter over a cuppa, get the conversation going about mental health.
Happy Time To Talk Day everyone!