For the past week I’ve felt like I’m permanently staring down the barrel of a gun or completely trapped. It’s a horrible feeling, a feeling created by the worst of circumstances at a time when I probably need help the most. Those who are in touch with me on social media might be forgiven for thinking that I’ve been making an effort to do a bit more of the things I’ve been trapped from doing. My last blog entry indeed suggests this, but actually things are going badly. Very badly.
I had an appointment with my psychiatrist just over a week ago. He is part of the recovery team, helping me more with day to day integration, coping with my anxiety issues and Asperger’s. During that appointment he posed certain questions that unnerved me, centred around the possibility that I could be discharged from the care of the eating disorders service. I was stunned at the mere suggestion. Lately the anorexia side of things have taken quite a kicking and, with necessary sensitivity, it’s obvious that behaviours are out of control and physical repercussions coming to the fore. The justification for the suggestion was due to the lack of progress or engagement in any meaningful treatment since discharge from my last inpatient admission in February. As I pointed out this had been due to my moving and the eating disorders service wanting to ensure my work with the recovery team being established so that cross agency involvement could be created to devise a way forward. I hoped that he was simply “shooting fish in a barrel” and that I could query this with my care co-ordinator at the ED service at my appointment last Friday, but I didn’t like the fact he even brought it up. Anyone who has experience with eating disorders know that this kind of thing can be a trigger, and that’s the last thing I need when things are as bad as they are at the moment.
My appointment at the eating disorders clinic didn’t go as my care co-ordinator was obviously planning. I don’t think she had any intent of discussing any of this with me, indeed that was what she intimated as soon as I queried what had been mentioned in my appointment with the psychiatrist. She confirmed everything he had said and then detailed my options. I was horrified. They are indeed looking to give me a ‘therapeutic break’ from treatment (temporary discharge, let’s not dress this up) unless I took the only option open to me. This option, in reality, isn’t one…not for where I’m at.
Gloucestershire Eating Disorders Service is one of only a few in the country that offers a day treatment programme. Just after my diagnosis of anorexia I was referred onto this programme but was discharged from it after just one week. The programme is meant to last eight weeks. They have very strict guidelines, one of which is that all meals are completed within a set amount of time. These rules are there to ensure that you are committed to the programme, your recovery, and to protect the recovery of the other patients. I understand the rules, I accept them but at the same time I understand that if you can’t stick to them you can’t stay. I also acknowledge that if you can’t adhere to them that you aren’t well enough for the programme, and that your illness is more severe than that programme can accommodate. If that’s the case then other treatment MUST be instigated, simply leaving someone to fend for themselves should NEVER be the way.
My care co-ordinator says this is the only option open to me at this time. If the programme wasn’t right for me at the start of my diagnosis there is NO way it is right for me now, not when my illness is so much more progressed, my behaviours are far worse, my weight so much lower and my food fears so much more profound. I know exactly what is expected of me there and should I accept a place I am certain that I would be discharged very early on. The net result of that would be damaging in the extreme and that’s something I am simply not prepared to face. Things are bad enough as they are, why would I do it? This, to anyone reading who has no experience or understanding of eating disorders, must seem ridiculously defeatist. I am being nothing more than brutally honest with myself and what I know of where I am. With all the will in the world and desire to gain control over this BASTARD of an illness it has me on the ropes. Even if, hypothetically, I went and did the programme I would still spend 20 hours a day at home. That’s a lot of time at the mercy of all that goes on in my head, not being supervised through meal times, not being stopped from carrying through on behaviours that might undo anything I might do in day treatment. It’s all that happened before.
Our conversation then progressed and she posed the question of in-patient treatment again. I had been thinking about this as an offshoot of my psychiatrist appointment. He had asked me if I thought I would benefit and although I’d been resistant to this point I have become so desperate to regain some life back and some control that I realised that this might actually be the best way forward. I began to get tearful for the first time in a long time and nodded in agreement. I wish she hadn’t asked the question. It would seem that the NHS Commissioners will not sanction inpatient treatment for me again, especially in view of day care treatment being an option. Given the reasons I have gone over above this leaves me in the wilderness. Day care treatment would be, I believe, catastrophic and inpatient treatment isn’t allowed. I don’t blame the NHS for this, nor my care team really – this sounds like a funding issue and isn’t the first time I’ve been in this position. You have to admire our government don’t you? Oh no, you don’t!!!
So here I am. The wilderness. The eating disorders service haven’t formally put me on a ‘therapeutic break’ yet, they want to have a meeting with me and the recovery team, alongside my GP, and then they will. It’s here that I have to tell them my decision in regard to day treatment, but, in truth, I see no real prospect of me engaging with that for all the reasons I’ve said. Meanwhile I am physically getting worse as the anorexia has a field day with my vulnerable state. Even at that appointment with my ED care co-ordinator my weight had dropped and has continued to do so, not because I’m proving any point, but because I am that ill. And the worst thing? I’m still not 100% sure these professionals completely listen to me. Yes, I’ve always had mental health issues. Yes, I’ve always had food issues but just today I had a letter from my psychiatrist following up on our meeting suggesting that maybe all of this might just link back to my being on the autistic spectrum. It’s at times like this I am really at my most vulnerable, when I can’t see any way out. My sole issue right now, or rather my primary issue, is that of my eating disorder. I need help with that and that alone. If I can’t get it I have no future, it’s as black & white as that. Yet here I am facing the prospect of losing the support of both the ED and recovery teams.
I’m trapped. I feel like I’m staring down the barrel of a gun. I’m looking for a future that doesn’t seem to exist and all the while this pig of an illness is mocking me, making me scared and won’t let go.