I’m sick. Rose has been sick with her cold, the ear infections, and a fun tummy bug as a little gift at the end. She’s on the mend. Zoe has been sick with a terrible ear infection. It’s improving but only slowly. She’s on steroids which make her eat and drink more and need to pee during the night so she currently sleeps in the laundry overnight so she doesn’t wet her bedding. I’m a mess. I’m extremely depressed and spend several hours a day crying. My fibro is bad and my pain levels have been too high for too long. I’m good at managing chronic pain but when the base line climbs too much I find that it effects my mood and thinking. My brain gets noisy, my mood crashes, and I find myself getting angry at everything and hating myself. I’m lonely and miserable and awful company. I have a bad sinus infection again, I’m now prone to these since my first severe one a couple of years ago which was caused by a rotten tooth developing an abscess that travelled into my sinuses. I’m beyond frustrated by my inability to stay well, and into a place of despair. How can I work when random months of the year my immune system crashes and I develop such terrible illnesses? Last time the sinuses wiped me badly enough that I also developed tonsillitis, laryngitis, bronchitis, fluid in my ears and a kidney infection. I was beyond miserable and in a private hell.
I can’t bear cheerfulness, it hurts, and it makes me angry. I feel so frustrated and enraged, so hopelessly inadequate. I get windows when the pain relief is working when it all goes away like a cloud blowing past. I come back, and I feel whole, and I can smile. There’s a playfulness, a gentleness in me, a sense of quiet hope. When the clouds come back there’s rage, and a self loathing so intense and overwhelming that I feel poisoned by it, impaled upon it and all efforts to lift myself off only drive the blade deeper into my belly.
Tell me you don’t want me to hate myself I sob to Rose. I feel like I’m trying to give you this gift, that I know I’m useless and pathetic and not trying hard enough, but don’t worry, I’m punishing myself. You don’t have to hate me, I’m doing it. She brings me tulips and watches TV with me. Of course I don’t, she tells me. I love you. I’m like a badly wounded dog, biting at everything. I’m scared I’m going to bite someone else so I’m gnawing on my own limbs and there’s blood in my mouth and up my nose and it’s only making it worse but I can’t stop.
My skin is blistering and my eyes hurt. Admin is a pit of terror, my own failure and inadequacy. Every day I’m a step closer to finding out how badly I have stuffed this up and put a number to the amount I will owe. I try to be stoic.
I have a big assignment due on Monday. I’m starting to fall badly behind in my studies. I listened to the tutor talk about so many artists I’ve never heard of, with such envy. That world is slipping away from me. I try to get the basic process of experimentation through my head, that is okay to ‘waste’ paper trying something out. It’s the simplest idea, but my brain is molded to years of poverty and lack, I can’t replicate it at home. So many dreams that feel as fragile as glass. I need to get better.
I’m writing. I can do that. It’s messy and the threads are hard to follow, but that can be fixed. I lose myself in it, I focus and fall into it and my mind is clear in that place, no noise, no biting. It doesn’t hurt. My wrist is braced while the tendons heal but the writing doesn’t hurt. I write in bed, in the garden, at my computer, in the bath, by the fire at my local pub. It feels tenuous, like a last ditch effort to have a toe hold in the world. It feels liberating. For so long I’ve been diplomatic with services in mental health who have broken my heart by becoming everything we don’t need more of. There’s a kind of freedom, a sadness, a gladness, a despair in nailing my colours to the mast and saying No! You are not lighting the way. You are part of the problem. (how am I supposed to get work, ever? This is hopeless) I can hear the critics in my head. The mainstream saying I’m far too harsh and the things I’m criticising them for are old problems, they don’t happen anymore (they do). And I can hear the outsiders saying I’m far too soft and give too much ground and people are never helped by the mainstream (they are). That’s a familiar place to be, in the middle of the war with everyone upset that I’m not on their side. That’s probably about the right place to be. I know who I’m writing for, it’s people like me 6 years ago, frightened and unsupported and trying to navigate the world as a newly diagnosed ‘freak’. Maybe something will come of it.