Events have transpired to make things blacker than tar since last entry. Sorry for temporary removal of weblog to those who noticed and thought to mail. Weblog was too painful, but seems in retrospect like selfish act of a child smashing up favourite toy. Am in dire straits with seemingly nowhere to turn but can’t explain in public, much too personal – sorry.
An entry I wrote yesterday: my most shameful and dangerous, but why not just post it? It’s the truth about me, and how my days are. I feel like death today – on the edge of something very bad – so it may be gone tomorrow. I’ll take any help anyone has.
This entry deserves and will get no illustrations. You probably should not read it, and I probably shouldn’t publish it.
First memory of looking at the clock amidst usual mess of semi-lucid disturbing dreams. Usual sleep paralysis: heart-beating wildly, knowing I should wake myself to calm it, and sleep again. What am I dreaming: about work, about having to be at a meeting in town, for some reason with a schoolfriend, being late, stuck in a bookshop, and almost too ill to move: the usual mess of fears and being stuck, ill, wriggling in a web. Check: is my left ear screaming tinnitus? Yes… will it be a tinnitus day? Maybe. Pain in centre of chest. My hand stumbles across the bedside table to take a clonazepam: three a day, keep it up, and it might help me sleep – fleeting thoughts, always doctors – Dr Myhill says I need 9 hours a night – Dr Cheney says clonazepam protects the brain from the damage caused by CFS/ME. I dive back into the dream too quickly to wake and change it because my body’s too tired to do what it should and sit up for 2 minutes, I’m back in the bookshop, trying to keep a job, trying to keep my friend from when I was 14 happy, and worry worry worry. I’m late, always late, and clinging to the edge of the real world out there I actually left 6 months ago.
I wake finally, like dragging myself from quicksand. Oddest most unusual dream, so unlike me: I am with my Grandpa, who died 20 years ago. For some reason we’re in Montreal, where he’s moved to in my dream, and we’re walking down a street, and he looks healthy, his face is full and happy like I’ve only seen in photos from before my memory starts, and I have my arms round his neck and I’m hugging him and jumping for joy: I have a girl’s body, I have hips, I’m about 18, and I’m so happy when I wake I feel a real gorgeous physical pain in the centre of my chest where the fictitious heart is. “I didn’t know you could be this happy” repeating over and over to him in my mind as I hug and hug him and he looks embarrassed and happy and healthy, to have a granddaughter who loves him and loves just being herself hugging him as they walk down the streets of his new hometown.
Where on earth did this dream come from? My Grandpa was old and thin in all my memories, a shuffling humble quiet man, worried about her daughter’s car crash of a marriage. Was I his daughter in this dream, who he loved so much? Was I my own mother, now gone too? Did they two have this flicker of an experience once, of hugging on a street, of sheer joy at each others love, the simplicity of a love between a man and his own sweet daughter? Is it a gift to me, for a second, now they are gone? But I don’t believe in the dead living again, or messages from when they are gone. They did, both: “this world is not my home, I’m just passing through”. But my Grandpa moving to Montreal? Impossibly stupid thought from a jumbled sick sleeping mind: he always seem a frail ghost after his wife died, hobbling through the 80s, fighting against the wind. He would, could, never have left these shores for the west – he spent too long in the east when he was young. And I never usually dream I have a girl’s body, or that I am happy, much as I yearn that my subconscious would take me there. Why now? Darkness and loss and the stupid randomness of my dreams descend and the pain of joy in my chest just turns into mundane familiar pain.
Sorry for the break in transmission. My gastric symptoms really took a hold, and after a hyperactive mailing list day on Friday (sorry, robots) came a very big and I suppose, very predictable mood swing yesterday: so low and tearful and afraid I can’t remember when I’ve been like this for a long time. Just trying to tread tread tread water today, so writing this will either be therapeutic or another bad anxiety trigger. I may quit and run. Oh and my pee went green. Which apparently can be caused by asparagus, which I don’t eat because I don’t like any vegetables beginning with the letter A: there’s four I can think of in British English, count them out for me. So I guess it must be some kind of vitamin/mineral overdose from my silly scoop mistake, which by now three lovely people have apologetically laughed at, quite understandably. I hope last week was all about stupidity and not illness.
I’m currently very scared and feel my leg’s being chewed off by Wolf Dread, although, actually it’s a cousin of his, called Depression, and he’s a bad, bad wolf. It’s hard to describe just how he eats away at your bones. Someone in a #depression channel yesterday, bless him, suggested I “take up some hobbies” and take my mind off it. So hard to describe how, if you haven’t felt the deathly depths that depression can really get to when you can’t even think or move an arm without intense pain, guilt and fear, that stamp-collecting really wouldn’t help. To be bitten repeatedly by the wolves of anxiety, and then when they’re having a break and chewing at a detached limb, to have their cousin wolves of depression attack just doesn’t seem fair. But the jungle’s not fair, as taught by countless David Attenborough programmes about big monkeys eating little monkeys, and sea lions nibbling at penguins; TV that should have a health warning on it, because it’s so upsetting. Human beings can only bear so much reality, and some of us can only take a tiny scoopful at a time.
And it’s so chilling how intricate the details and subtle flavours of these mood changes are. Anxiety isn’t like depression, it evokes a completely different sensation to the palate, and you can taste the change immediately. And each episode of each condition has a differently horrifying flavour, like the exquisitely laid out dishes in Babette’s Feast; like you’ve never tasted this particular dish before. So you can’t prepare for it, or defend with previously stashed letters to self, diary entries or mental reassurances, because they aren’t relevant to the particular orientation of fears, loss of self-knowledge and disintegration that surmount you.
I get upset when people say depression brings creativity. Bipolar depression may bring on rushes of activity: I can’t speak for this. But it’s a 20th/21st century romance, or consolation, that depressives are at their most creative when beaten down by depression: a coffee-table thought. It’s a sickness, and while others may enjoy the fruits of dipping into that world at leisure in an art gallery before chocolate fudge cake in the nearby cafe and a poster for the wall, if the artist was truly depressed, then they should feel nothing but sympathy. Maybe it’s an expression of the empathy that depression can bring – if you’ve seen it in yourself, you know how unrelievable it is in others – but it’s not an LSD trip. I’m sure someone who’s down for a bit gets to consider things in their life that they may not have, and this may lead to fruitful creativity: but depression itself just suffocates and kills. The little I truly understand of it is that, just when you think you’ve reached the lowest level you could be at, a hundred more levels heave into view below, and you realise you could drop one thousand more. I’m quite sure I’ve only experienced hints of the kind of terrible loss of self and pain some feel.
I’m not going to go into the details of the fears, as from experience it only turns them up to 11; they’re illusionary triggers that try to divert you from the underlying chemistry of disease. I’ll just say one from today: ear fear again. Loud noise in my left ear this morning. Feeling of more deafness – panic. At least three people now have written to me about their ear problems, and some much more frightening than mine: and they have all dealt with them, by the sounds of it, with more dignity and courage than me. I must learn.
Three days ago I received my tinnitus retraining device (a misnomer – the audiologist wants to deal with my hyperacusis first). I have to build up to 8 hours a day. It’s a slightly scary thing to put in your ear. Recently on BBC2 there’s been a program called Tribe where a man called Bruce Parry spends time living with, and being initiated into indigenous tribal cultures all over the world (although, being quite posh, he’s yet to try being initiated as a Geordie). In one episode, he’s sitting in a clearing with his new Amazonian friends in his leaf underpants, chewing grubs, and knows that they sometimes use the grubs to clear earwax (eww..). So they pop one in and start laughing at him as he squirms (apparently the best joke in the Amazonian rainforest is to put the wrong kind of grub in someone’s ear). Anyway, this tinnitus/hyperacusis device has a little antenna, and is just like that: putting a wiggly grub in your ear.
And now it’s later, what I’ve written above seems like a weak attempt to talk myself out of some terrible fear with casual language, and my heart is like a rollercoaster ride.
Car coat, she has a quilted jacket with a hood if it rains
Big pockets for the pharmaceuticals she takes to fix her brain
Something is very bad inside and I have to stop typing now. Today I’ve had a lovely friend playing nice silly games with me online which have cheered up and made me feel more like me, and in another place, the insane breakup of a community of CFS/ME people which I’d just come to feel at home and safe in – and a new dear friend forced to leave – so much for the empathy of illness. Too much stuff. The supposed detached empirical approach of my last article has become a small mountain to climb, and I expect I won’t be writing Naming II today. I’m trusting that anyone reading this who might meet me online understands that there are levels of presentation you can sustain publically for a little while which belie what lies beneath: but only for a time. But you have to maintain those levels if you possibly can to keep yourself in touch: people can only stand so much misery and illness, just like I can only stand so many David Attenborough programs.
I’m just going to have to post this now, and then hide in my tent and wait out the storm.
Anxiety/panic and confusion over everything back very badly after an event two nights ago. Very hard to move or speak without hurting me or others, who understandably get frustrated, or talk coherently about what’s hurting. Wolf Dread came back and is baying for blood, taking snaps out of me. Thoughts of the most terrible outcomes and endings. Triggers; triggers, illness and sleeplessness. Stay in bed.
Maybe this is exhastion after staying up too late for too many nights talking to people who seem to have the key to my prison. What to do if you have to choose between fitness of mind and body? Maybe it’s an aftershock of a very quiet and lovely visit from friends yesterday, with no more exertion than sitting, watching TV, and talking – which means my life really is going to be very limited from now on; maybe it’s the 36 hours of anxiety over issues I can’t write about here. Maybe it’s illness: the distortional games CFS/M.E. likes to play on your brain chemicals, just for kicks. Or maybe it’s just how things are. But it’s so mean, after all the hope of the last week, and I feel it’s all my fault, for whatever reason I can find at the time.
Fear of sounding like teenage goth, so won’t type much more. Maybe type on another dry topic later to try and sound literate and detached, to attempt some real mental detachment. Stephen Fry said once (I paraphrase) “if you want to be something else, you just have to keep pretending to be it, until it’s you”. But this is closer to real-me: when you see those entries, that’ll be journo-me.
I say closer because I wouldn’t want you to see me in the hateful flesh now: barely coherent. Senses gathered briefly when my hands touch the keyboard, and wildly reeling when the efforts over, rests between each sentence. Not nice to be with.
It’s very hard to be truthful like this with the world watching (where my world is a few people). Please forgive me for my choppy-changy moodswings, and what seems like self-indulgence. It may be so: it’s just that I can’t tell, and hurt too much just now to be able to find out, or really do anything. This entry is a limited edition 7″, and may disappear at any time, through sheer humiliation. Who wants to read this?
My uncle wrote to me unexpectedly yesterday – we haven’t talked for years. He’s really a second cousin, and the remaining link to my mum who’s gone (her cousin and childhood companion). I dream about telling her she had a daughter all this time, because I know she would have opened her arms to it. I hope he won’t mind me quoting his letter:
You are in dire straits, without much wriggle-room, though I guess loving outsiders, perplexed by their helplessness are reduced to affirming platitudes and detachable encouragements which presuppose a kind of freedom and energy available to them but not to you. What, where is the key?
“We think of the key, each in his prison
Thinking of the key, each confirms a prison.”
I think of what people do in prison. Immense numbers of press-ups. Messages tapped out on walls or pipes. Treatises written on bog-paper. The gratifying fantasies of revenge. Commonplace rotting. I also recall (from childhood) that Bunyan’s Giant Despair is given periodic fits (just as hope itself) so that in a brief lapse of his tyranny the victims find the key that was with them all along in the dungeon.
I guess you have to wriggle-wriggle with what you have available to you, not the contents of platitudes beyond your reach, disqualified by your reality. All the time the choice of life over death is set before us. In some prisons, wriggling may be the only affirmation of choice.
P.S. There is a moment in each day that Satan cannot reach – William Blake
I dream of stumbling across some fragment of that gene of eloquence that he’s always possessed in some dusty attic of my mind one day. He probably won’t see this as I doubt he has internet connectivity these days – he prefers lonely estuaries to bustle – but his letter bears reading and re-reading for me. I don’t know if he’d be able to adjust to some of the revelations of this weblog, if he saw it. He once said to me with a huge air of sadness, when we discussed the loss of faith I, and he to a greater degree had suffered, that he was “last century’s man”. It was terrible to hear – his despair at the time. I hope he doesn’t think that still – he isn’t. Every century needs this kind of care and eloquence. I don’t talk to him enough, probably because I feel the weight of a childhood staring out of the wrong face at him, with the wrong assumptions coming back at me when I do, which is hardly his or anyone’s fault. Maybe this might change, if I tell him one day. Meanwhile, I’ll sit still, and wait for one of those lapses of tyranny. His Giant – my Wolf.
I promised myself I wouldn’t put entries here that were just “I’m ill again”. So I guess I will write this as a draft, and then if it looks like anything one other person might want to read, I can publish. I’m getting very anxious again, the word I always use for something which is more like dread, very hard to explain, or a very silent kind of internal extreme panic. Dread is the best word for it: the feeling that at any moment, something terrible is going to happen which is finally going to bring the curtain down. I’m about to die, or find I have some terrible disease. L is about to disappear. The few strings I’m hanging off are about to break, or something, something is about to happen to finish everything off. I used to be anxious – everyone is of things they are scared of and have to do, or of things that may happen to them – but it’s just not the right word now. Like describing M.E. as Chronic Fatigue Syndrome: it’s hardly the point.
And I swear it’s a thing-in-itself – no matter how attached your panic seems to the given objects – it has a life of its own. Maybe it’s chemicals. M.E. eats your brain.
So I’m going to call it dread because it’s something I couldn’t explain now to my earlier self of 10 years ago, and that word’s the closest to it I can get. It’s something like an evil cake-mix of extreme anxiety, internal panic, and clinical depression which pops out when the panic’s briefly masked by something in the foreground – but all chilled in a fridge into a horrible stillness. It’s like someone your whole life is built around has just died, and you’re reeling and don’t know how to keep standing up, and your legs are giving way. But this is all so unsatisfying because it’s all figurative – I could stand now if I needed, if my soul could tell my mind to tell my body to do it; if the house was on fire, I guess I’d find out. All I know is that I had it from Boxing Day until the first week in January and it’s back. It creeps back up on you like a wolf, you can hear it padding towards you if you listen hard the day it comes back into your neighbourhood – that was yesterday. Wolf Dread pads around you and tries to divert your attention from himself – whispers that you’re terrified of this, then that, any hooks he can find to divert your gaze to a passing object of fear rather than himself. So you think: “I’m scared that my right ear is going deaf, it just dipped in volume again, I’m sure”, and your heart races. You spend a few hours on that, then a few hours later, Wolf Dread’s whispering to you about how you’re never going to be well enough to get out the house again, and how the lovely ring of friends you once had don’t remember you much now, because let’s face it, you’re no fun anymore, you can’t post funnies to their mailing lists or go round and eat jelly with them, and who can blame them. You can’t go out to see them, and you’re teary on the phone, and who wants that for two years running? Then two hours later, Wolf D tells you that your heart’s racing and you feel sick and you can’t think straight because the one friend who still lives near you and visits is about to move away. Oh wait, no, it’s because you’re never going to be able to get back to work, your income will plummet, you’ll lose the house, your whole motivation to get out again, you won’t ever get another job, and with no sugar, wheat or dairy to eat, no friends, no music and no feeling of worth you’ll be dead in a year. Then he whispers that it might be a relief anyway, wouldn’t it? No-one lives forever. Apart from Wolf Dread.
When I was little, I had a repeated nightmare, which always ended vividly with a wolf walking up our driveway in my childhood home, opening his mouth, and swallowing me whole – at which point I awoke.
The problem with dealing with Wolf Dread is he doesn’t snarl, he doesn’t howl like wolves are supposed to, and he doesn’t even smell doggy. His plan is to get you to hang your dread on any hook you can find, and I have as many hooks as the entrance hall to a primary school. When he’s desperate and snarling for blood, and he’s so finished you off you’re wanting unconsciousness, he uses the last big hook: “you’re going to go into another month of dread and soon it’ll be all you are”. He makes you dread dread itself, because you know how it makes you feel and what destruction it does to the very things that might drag you out: people, enjoyment, peace.
All the panic disorder articles I’ve read tell me it’s all about this fear of fear, fear of pulse racing, fear of dizziness that sets up a vicious physical circle. But I don’t get this: I swear I don’t, so I can’t use these books. I can feel dread – it’s gnawing at me now – when my body’s completely quiet. I have awful self-inflicted shaming panic attacks, but that’s not Wolf Dread, that’s.. Squirrel Panic, and not a subject for today.
I don’t know where this dread is from: I don’t know why he picked on me. I can account for it logically with the build up of different predisposing factors from growing up as a little girl baffled to find herself in a boy’s school but not daring breathe a word, and instead ingesting it as guilt, from the disabilities and life-wrecking effects on any chance of a social life that a long-term chronic illness has (humans, like wolves, are social animals: he knows us well), from the partial or complete loss of the remaining source of joy – music – that my hearing loss is likely to bring. Or I can say it’s a chemical feature of the disease(s) I have. Or I can say it’s the months of Roaccutane I was put on a few months before I contracted the illness that switched on all my CFS/M.E. lights, 12 years ago. But in the end, I don’t know, and not knowing matters. It’s hard to explain this to people who say “live in the now, and deal with the now” – no, I need to know where to aim my glare, even if the object aimed at doesn’t flinch. Do wolves look away when you glare at them, like cats? I bet they attack.
Anyway, I heard him padding around me yesterday – you get attuned to his footfalls after a few years – and tried to dismiss it. Took some clonazepam. Last night, bad dreams, bad sleep. Today, mid-afternoon, rocketting panic based on a particular hook I hung it on, followed by generalised dread – now. My thoughts turn to this space. The only thing that’s seemed to make me feel better recently is typing here. Please, somehow, keep the wolf at bay – I can’t afford this to happen to me now, or to those I mail telling them I want to be gone – again – because it will make it even harder for them to stay my friend. And Wolfie knows that when I’m finally alone he has me completely his, and can gnaw at me with ease and at his leisure.
I’m fumbling around in the dark, alright. It’s like I’m waiting for some starting pistol or something to start this journal off. I find myself often refreshing it to look for new content, as if little pixies will add entries overnight. Something to do with long-term involvement with running mailing lists, the lazy person’s blog where others make up all the content and you get the credit, and something to do with my ingrained need for others to help me right now, I suppose.
I’m very self-conscious about the heading up there, the quote from Saint Emily – not the kind of thing I would usually do more than sneer at, then feel a little sink in the heart about. I’m aware how it looks – like a “Kick Me” paper signed pinned to the back of your jacket as you walk into school – and there’s a fair to middling chance I’ll replace it soon, so in this light, I’ll reproduce it here:
Nothing is done without difficulty;
Face difficulties courageously and with humour;
Every life has its hardships and frustrations;
Courage is not only necessary for saints, it is necessary for any well lived life.
The first thing I should say is that I don’t know which Saint Emily said it; there appear to be a couple of Saint Emily’s plus a Blessed Emily. I love how there’s a canonical list of saints – rather like Father Ted’s Canonical Priests List. The second thing I should say is that there’s a middling chance no Saint Emily actually said, as I found it tagged to a message on one of the Yahoo Groups for ME/CFS experimental research, looked it up, and only found a couple more references to it, from “Disability and Illness Quotes” pages, so it may be ecclesiastical myth. Oh and it’s attributed as a paraphrase; she probably said “cheer up, chuck” before toddling off to bingo.
It’s so un-me. Associating a quote like that with myself, even privately. Reading “Disability and Illness Quotes” pages. It all rings of flowers in an empty church hall, weak tea and – dare I say it – platitudes round a graveside to me. Very scary. And yet, when I read it for the first time, I guess in extremis as I am now, it struck me as maybe the only way through what’s happening to me now.
Everything’s changed for me in the last few months – it feels irretrievably, like light switches are being switched off round my body, slowly but surely, as a house says night night; or circuits blowing as the electricity grid shuts down across a city. When you’ve had CFS/M.E. for more than a decade, you distrust your body at every corner. When you’re transgendered, you add resigned, quiet hate to that at an early age. But at least with M.E. you aren’t habituated to think of bits of your body switching off forever: relapses ebb, remissions flow, and you ride on the wave when you can. But when, on top of all these decades of tightrope walking, something actually breaks – in my case my left ear – well for me it’s like the ground’s opened up. If my ear can go half-deaf, start ringing and clashing all day, and become suddenly so sensitive to sound that someone moving a plastic bag can make me feel like running to hide: if all this can happen in a moment, on a July day, when you’re doing ok, when you’re hanging onto work – and an ENT surgeon can declare it “severe and permanent” loss, and, after the requisite tests “idiopathic” – meaning we don’t know why and we’re not going to do anything about it – then what else might happen to my body tonight? Will it get worse? Will my other ear idiopathically break tonight and I’ll be plunged into the world of the deaf tomorrow?
I find it very hard to explain (my inner voice is saying “justify”) just why my world’s been shattered. Plenty of people are profoundly deaf, have chronic illnesses worse and more painful than mine, are deeply cut by gender issues, have to cope with terrifying grief and loss of those they love, have no money, no home, no hope. I can’t account for my own anxiety, depression, grief and deep swell of dread every day that I’ve had for 5 years now, and has suddenly accelerated into terror and a loss of (and loss of the wish for, coupled with a longing for) the outside world. Certainly what I’m experiencing isn’t the norm, and my dose of bad luck in the world isn’t quite average, but I feel an ache of guilt that I know others whose loss and pain on the face of it should be so much greater. I was going to describe the practical and shameful depths to which I’ve sunk in the last week here, but I think that’s enough wallowing for this entry. Think hippo, and replace mud-bath with self-pity and loathing.
Personal “weakness” springs to mind as an explanation for my lack of courage, out of fashion as that notion is with therapists. Were I living in Victorian times, a phrenologist would I’m sure be feeling the topography of bumps on my head to look for signs of weakened hereditary faculties of courage. I hope I’m not just doing the same by appealing to “courage” as a possible way to keep surviving. I have never felt I had any. Is it something you can just have, or can get? I know if I do have any, it’s tucked away under the stairs, and has never seen the light of day.
At least I suppose I’ve found Esme (“ee”) Fumblings’ middle name now, if anyone remembers her: Emily. Esme Emily Fumblings. She’s no saint.