I've known today that I need to write, to offload. But sharing things with friends on Facebook or even with contacts on Twitter feels wrong here. Because noone who has or has had an ED needs to read of the problems faced by others. Even those people in recovery can falter when reading of specific difficulties with food or weight or shape.
But all these thoughts in my head need to go somewhere.
There's a word that is familiar to many people with EDs and the medical professionals that look after them: struggling. Its meaning is hazy, some kind of shorthand to describe any state of being that lies between very poorly and very well. Countless conversations unfold:
Me: Hi Frederica, how are you doing?
Frederica: Struggling a bit. But ok, really. How about you?
Me: Oh I'm ok. I've heard Iphigenia is really struggling. Not sure whether she might be heading into daycare.
To me, struggling has always referred to that place, the one that seems unending and infinite, where the anorexic thoughts are there, 24 hours a day. But so are the pressures to try to "do well", to maintain weight, to keep out of hospital. Struggling is where many people think you are ok because you eat (even if that eating is not "normal" in terms of choices or portion sizes) and your weight is relatively stable but where every day is an effort, every item that you put in your mouth represents an internal battle, where hope of change, of things getting better seems a long way away.
This week, it's redefined. I am struggling in a new way. The other health problems are scaring me and draining me. The asthma (or whatever it is) is not in control. It scares me and I suppose that my old instinct of finding control elsewhere becomes stronger. Furthermore, two emergency hospital admissions have messed up my routines and challenged my belief that I need to eat (after all, if I managed without food there for x hours, skipped most of the elements of my diet without it affecting me, why do I need to restart). Plus the physical symptoms (persistent cough, breathlessness, fatigue) are genuinely making it hard to get through a meal. I feel full after a few mouthfuls and have every reason to give up. Anorexia screams at me to just throw it away, to "win" by having a very real reason not to eat.
But logical brain, friends, family are saying the opposite: I can't hope to get over this if my body hasn't enough fuel to fight it.
Today, all this conflict feels too much. I don't know how to cope with it. I haven't the strength to do anything that I love : I can't dance; I can't sing; I am too exhausted even to write. My Sky+ box is almost full of tv programmes that I can't be bothered to watch.
My one glimmer of hope is that my semi-regular appt with my ED consultant is on Monday. It's only a glimmer because he's supposed to be in the process of transferring me to local services (on the weird basis that I'd been the same level of not better enough for about a year - whereas one would expect discharge to follow improvements). And either he will think that I'm "struggling" in an effort, whether conscious or unconscious, to avoid being discharged. Or he won't even want to talk about the current situation and the panic/distress of being transferred while I'm feeling this low will just make everything worse.
I'm seeing my therapist straight after. So another glimmer of hope.
Is it ok to say I'm struggling? that I'm not ok?