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.
I wake into the darkness of my blackout-curtained room, like crawling from under soil, a mistaken burial; my body waking around me, reminding me it’s here, and hurting and broken. Tinnitus: heart sinking, not another day of screaming ears? After some minutes of trying to move my pathetically trampled body (thoughts of mangled butterflies) I switch on the tinny music from my little PDA by my bed – if I can blast enough quickly into that ear on waking I can sometimes lower the tinnitus for the day. Folklore from my memories of conversations with my audiologist drift in and out of my head as the only internet station I have programmed in squeals appallingly rousing or forlorn folk music into my left ear. I try to move my head on the pillow so the music gets into the correct ear canal, craning my neck, but I can’t sit up yet. Lots of things hurt.
My head is buzzing from that last dream – the pain near my heart, of the happiness (“I never knew you could be this happy”) of Montreal, and hips, and my healthy happy Grandpa loving his healthy happy granddaughter – where did it all come from? I’m awake in this broken, male body. I don’t stand a chance of walking down a street today. I feel such sadness and loss swoop down to pick me up in its arms, and dive to diversion: my PDA. Check my mail: nothing. Pathetic feeling of “I want friends”, while knowing I don’t mail others, because it all feels so pointless, as I have nothing nice to say: what do I have to bring? I check some people’s blogs: someone who’s mysteriously disappeared from my life like I’m poison, and I can’t read for long, aching for her real life, wondering why I flashed through her life so quickly and suspecting it was because I was too much to bear (I was) – but wishing she would answer my mail and just tell me so. I skip to another friend’s weblog, and she’s written six new entries since I last looked – where does she find things to write about? I read, methodically, through her DVD reviews, her lovely jousting style, like she’s right here, vividly nudging me and telling me I’m so wrong about everything, and laughing me out of my fear and dead-flowers-widow room. I read on: she’s so full of life, and I feel inhabited with ghosts: I know she’s had one of the worst weeks of her life and look at her? Bouncing and trying and living and succeeding. I read about her times with others, her supportive emails from friends, and I think: did I send any? Did she feel she could tell me enough of her last week’s horrors so I could support her in the same way? and know she felt she couldn’t. And that she was probably right: I am like glass, like lace, and I break so easily. I feel like the dying patient, hushed tones around my bed.
I read on. About her days in other cities, her meetings with others. I read others’ weblogs about meeting her. My stupid, pathetic jealousy about her being able to do this, go to places, meet people, make friends so easily: her unconscious simplicity of being in her body. I mourn the dream with my grandfather, of being in a skin I loved and hardly thought of (“I never knew you could be this happy”) as I read other men’s comments about her: as a woman. I know this will never happen to me, and it hurts me so, and at the same time I feel so guilty, like I’m pressing a flower between the pages of a book: stifling her three-dimensional life into my own two-dimensional fictitious longings, making a dream of perfect happiness out of someone else’s normal life. Such guilt, that I dig my own grave. I stop reading. I check my ear again as the tinny music bores a hole into my ear, winding through eardrum, hammers and cochlea, to seek out the tinnitus and turn its clang into whispers. I can’t tell if it’s going to work today.
“My weblog: so silent. Who can still be reading? I must write. What to write? I can write down my day, I can say what it’s like, for me. One day I may look back and understand all this.”
L comes in, a shock as I am writing this: clock: “it’s 1:30″. Brings me a flower: “I nicked it from a tree”. Feeling of terrible swooping loss sweeps through me in a wave as something from the outside pushes its way into my inside life: “I don’t know what to do with it”. “You put it in a vase and look at it”. L immediately angry, bustles out, gets vase, guilt as I lie like a straw doll in bed. Guilt, guilt: am I causing this? Could I have that life outside? Do I want it even now? Everything a start with no reason to finish. Why do I upset others so?
I hear L cooking, lunch for the sick after a morning’s work. Should I be forcing myself up? The hundreds of millions of words written about M.E. and anxiety and depression a useless jumbled algebra, telling me nothing about how to pace, when to move, when to rest. I just feel so guilty. I must be doing something wrong to be this ill. Yes? Same thoughts chasing around my mind for a thousand years. Such useless crashing waves.
I’m crying in bed now, stirring cauliflower round and round a bowl and telling L my dream. My arm is rubbed lovingly and I hear comforting words, but as if through sheets of ice, I can hardly hear. Do others lead simple happy lives? Am I conceited and selfish to believe they do? To live one happy, contented day seems to impossible to me now, and everything makes me think of the fewer days I have left, like some selfishly inward bereaved patient in an old peoples’ home complaining at her lot to anyone who will hear. I realise I don’t actually know if everyone is living lives of quiet desperation, but smiling, and it’s just that I am too selfish and cowardly to smile. Or if people exist who genuinely float along through life, waking happy at a new day. My ear screaming now. Higher blood pressure raises tinnitus. I remember another friend with M.E. telling me not to call myself cowardly: call it “gun-shy”. I look to see if she’s online – I should have called her when I said, everything went too sad and I couldn’t – but she isn’t.
L leaves for afternoon of work. I have to put jangly ugly music back to my ear to stop the ringing – I rest it on my shoulder as I lay in bed. I have herbal tea on a tray and a pear, for my afternoon. I don’t miss the things I can’t eat anymore: anything but a small amount of sugar in fruit, wheat, cereal, dairy, all gone. I think about my specialist putting me on this diet, and feel stranded now, stuck on it forever: when does she decide it isn’t working? What does she do then? I started in October, with a brief hiatus over Christmas. I’ve lost 50 pounds, because food is no longer something to enjoy. I’m no better. Or am I? Or is this illness fiction? Is there something else I should be doing? Same thoughts chasing tail, I try to jump out the hoop, but I have another afternoon, and evening alone.
I get a text message from my friend in Sweden: she is shopping with her Dad, and sends me a nice thought to cheer me, to give me a little break into an imaginary world. It does, and I think how lovely she’s been to me in the last month, on top of all the years she sat and waited while I never replied to her mails. Faithful, guarded, careful in her promises and true like a bell. I feel bad for my whines about having no friends. I feel fear she will disappear. I feel too fearful to reply just now. I think of her now, in a busy street, shopping, her life ticking by, and how simple-happy she says she often is, and imagine her walking amongst cracking twigs with her foxes. It’s going to be very hard for me to not imagine her in that video I sent her.
I think of my other friend in America, of our intense fierce love for each other that burned so fiercely for five years, and how hard we find it now to turn it down to a comfortable loving – I feel so sad and guilty, and miss the things we had so badly. And wonder if it’s my fault, over and over, and like every day, how to form the words to her. How I miss her gentle soft voice, which I can’t hear anymore but which kept me safe for five years, and where did it go? I think maybe I ruined it all. And how every day I want to mail, trying to find a way to her soft voice again, but how I fear the reply, because I am full of fear for everything. Gun-shy.
I realise I can’t post this publically.
I realise I didn’t take my lunchtime after-food medication, so I scramble in the box beside my bed:
1x essential fatty acids
1x multivitamins and minerals
1x vitamin C 500mg
1x vitamin D 1000IU
1x Gingko Bilbao
I add 1 cranberry pill for the cystitis I seem to have caught in the last week – L can’t find unsweetened cranberry juice, and I’m not allowed any sugar. I will double up most of these pills with my evening meal, and add zolpidem/ambien 5mg for sleeping, and more clonazepam/klonopin (1.5mg/day). I think of my weekly B12 injections, worry about whether it will be doubled, and if so, will two trips a week to the nurse provoke bad relapse? I jangle with pills like bells on a Christmas tree.
I drop the pills three times and scramble for them beside my bed like an OAP. I worry again about the antibiotics my specialist ordered for the (common) parasite they found in a lab test, my adrenal test kit I’m supposed to take, the calcium, boron, B6, vitamin A, folic acid I read on countless confusing websites I might have to take to counterract or aid the effects of the vitamin D and B12 I take – I try and remind myself to have faith in those who promised they would balance these for me and just keep quiet until I am told. I wonder if faith in supplemental nutrition to aid CFS/ME will be the joke of 2010: I am no better.
I realise I need to take the first of my “Magic Minerals” drink, as prescribed along with all the rest: this will require me actually getting out of bed, because a glass full of it turns green at a little point at the bottom: something from school chemistry makes me think this must be copper or iron, and I think of the luminous green some metals turn underwater: I remember harbours and boats and rusting iron and the smell of the sea; I wonder what colour my inside is after drinking it. I read the side of the powders: calcium, magnesium, potassium, zinc, iron, manganese, boron, copper, molybdenum, selenium, chromium, iodine, vanadium. Chromium? Sounds like metal polish. Iodine makes me think of purple and I wonder why. I have to drink 3 pints of water with this in a day: it’s a bit like drinking water with a sprinkle of sand in it. I wonder for the 5 billionth time if this is all a myth and I’m filling my insides with dangerous nonsense. I imagine a world-wide health scare over molybdenum in 2008. I think I’d quite like to know how I will be in 2008, and think of The Time Traveler’s Wife. He was dead by then.
I get up, then, to clean a glass. I wonder if a shower would ruin me for the day. I decide to risk it. I worry about my hair and feel ashamed at the worry. I don’t look at myself in the mirror. I battle fear and guilt and blackmail myself by turning on the shower to warm up as I wash a glass.
I delay by complaining on a message board, for no reason about something inconsequential. Someone nice who I know will probably read this later messages me from their work. I worry about patient-syndrome, but think how kind they are. I wonder what I offer others now. I get scared at a teasy well-meant comment about alcohol (will I ever drink again?) and reply with the most sour puritanical comment about my restricted life, as if they haven’t heard it a million times before. I apologise, and retire ashamed to turn on the shower.
I nearly give up because I can’t find a hairband for the shower. Feel very ashamed.
I return from the shower, having taken the risk and shaved as well, and feeling the shockwaves of exhaustion crashing in, I get back into bed instead of going to the garden room, as I planned, and promised someone. I try not to think of shaving as a mockery of nature: that and my fear of losing hair as the final insults my body can throw at a girl to really put me in the grave. Shaving is something to be proud of, or at least amused by if you’re a boy of 13: and something to be ashamed of as a girl. To lose your hair as a man is something disliked, and sometimes mocked by others in a friendly way – but to a woman, it’s seen as a shock, a medical condition, and one only deserving great pity and help. I wonder, terrified, which treatment I will receive, pray it won’t be soon, and think how in 20 years’ time male pattern baldness will be a thing of the past, an oddity like scurvy. People with fine curly genetically-modified hair at 80 will stare blankly at bald men in the past, and wonder what it was like. I think how mine is all just cowardly, umm, gun-shy fear: my hair is still here for now. I recall my sassy weblog entries earlier, about how it’s all about the insides not outsides, and their bravado stings and shames me.
The sound of the shower makes my ear ring badly, so I only stay in quickly. But baths are worse. My mind wanders off as I wash, and for some reason dreams up a new series of Through The Keyhole with David Frost, but for transgendered people: “Who’d Live In A Body Like This?”. The name of the program suddenly sounds disconcerting in this context, and I turn off the shower.
I shave as quickly as I can and flee back to bed. I realise I didn’t get the glass and spoon for my mineral drink, and walk slowly as I can to the kitchen, praying one will be clean. Heart too fast, sign of impending relapse. Ear clanging, things feel unreal. I return, pour bottled water and mix in powder, start to drink slowly my first of three pints of sandy water for the day. I realise my cystitis thing is back, and tease myself cruelly it is cancer and I will die soon. “This world is not my home, I’m just passing through”.
My Swedish friend is back from the city and messages me: I think “so early”, then realise it’s 4:30 even here. This illness is suddenly making the hours, weeks fly past like a fenchposts on a motorway. I talk to her, hate the clanging in my ear, and put on headphones guiltily: they may not be good for me. I listen to “Young Prayer” by Panda Bear, because I need something dissonant and disconnected, without emotion.
She refers to the people in medical units who take blood donations as “bloodnurses” – I love the way Swedish contracts words together, like Anglo-Saxon, even though I think she was just trying to translate it for me into something I would understand.
(honey) "bloodnurses" would be a good name for a swedish lesbian vampire film
Ridiculous weblog entry, this. If anyone sees it I will just feel shame – will I post it? I talk online, try to take my mind off things with a couple of nice people. One of them claims I am a “terrible flirt” – my goodness, I have never knowingly flirted in my life: as if anyone would like me. I think it’s his sordid imagination and way of cheering the ugliest girl in the world up. It’s nice of him to try and cheer me up though.
I never did get out of bed, did I?
L’s back and we’re going to have tea. It’s what we do next.
Talked more online trying to talk my fears away – felt some relief from the gnawing anxiety after talking with a friend. Realised I hadn’t taken my clonazepam and gulped it down. Eat with L and everything started feeling bad again – ear squealing, anxiety very high. Clonazepam seems to be working like a leaking radiator. Just had to sit in bed and talk talk and find things on laptop – 15 hours a day stuck to the keyboard, chasing… something that I never find, some peace of mind. By 9pm my anxiety, sadness and self-hatred is so high that I am ruining the only chance I have of relationships even online – real life ones shot to pieces anyway. I can’t get out of my self-hate loop, and my dearest friends online are having to literally dump me out of the sky tonight, for my own good, hit the off switch and get on with their waking lives, or sleeping dreams. “You can make you own hell, without any help from me” – Elizabeth Mitchell sings this to me as I type this. L staying away from me like poison, getting so mad everytime I get so anxious. Because I am like poison, when I am so anxious.
I used to say I get better in the evenings – I think I said after midnight – and I’m a sitting nervous wreck now, roadkill for any fear that takes its fancy. If I get better after midnight, what sense is there in the nagging guilt that my doctor gave me, that if I don’t sleep by 9pm, I will be ill forever? It gnaws at me like a curse. I’m alone now, online contacts scampered for cover, and it’s my fault, all. I feel like I’m bleeding grief and self-hatred through my eyes and just a wish for this all to be over now; I’m telling people online to find other friends, because I’m not going to ever get better, and they will need proper ones; I’m telling others that I can’t talk to them again because I get too upset and jealous. All around I am pushing people away, when I feel so desperately alone and scared and want holding and telling this will change. But I can’t see or feel or imagine any hope or change happening from now on – this is too set in now, I’m too deeply immersed in my own tangled bush of hopelessness and illness and sadness at the loss of any real gender I can be in the world. Oh, I can’t express it – a “bad day” – self-disgust – a longing for it all to end.
I didn’t take my dinner supplements, so I shove them down now, hating every gulp of this useless last gasp at witch doctory.
1x essential fatty acid
1x Vitamin D 1000IU
1x Vitamin C 500mg
and another cranberry tablet. Left ear screaming at me now, given up and blasting music through headphones at it. What am I going to do?? How will I ever get out of this, be like other people seem to be, have friends, have a life, if I’m too ill to leave the house, and if I did too terrified of what they think of me, too horrified by the thought of how I look, too guilty about those who might think “he” but say “she”, not wanting anyone to make an effort anymore? And if by some miracle I slipped through a hole like Alice and found an insane world where a cure for M.E. was to chew on a dock leaf, and I looked like an Alice, how could I still stand this clashing in my ear? I can’t imagine a bar, a restaurant, a cinema I could sit in without pain and unsociable deafness, and just wanting to flee. It all feels so overwhelming and hopeless. And I read about those who overcome such greater obstacles, and I feel like dirt on the bottom of someone’s shoe.
L brings me some soya milk with vanilla flavouring from a pod (no dairy, no sugar) just because of kindness, and I shout out my anxiety and fear and am alone again in an instant, understandably. “You can make you own hell, without any help from me”. Soya milk to me tastes like eating “fruit of peas”, which to me, isn’t a nice thing. I feel guilty for not liking my gift. Headache starts to build, but then that’s my fault too, right? I never did get out of bed, did I? My own hell, my own blame.
I realise yet again I didn’t manage my 3 pints of sandy mineral water, and hastily pour another half pint to try and get near. I worry what is causing my terrible sleep – could it be minerals too close to bedtime? Could it be zolpidem addiction? Clonazepam? These things are supposed to help. One of the 5000 other things I’m taking? Staying in bed all day (“sleep hygiene” – the mantra)? A broken hyperthalamus-pituitary axis, whatever the hell that is? Just being ill. Melatonin smashed my sleep into pieces. Do I dare take the dreaded mogadon the doctor gave me with a resigned look one day? I worry about medication all day, what I am doing wrong, whether I need to read the three hundred new articles I get from CFS/ME Yahoo lists every day – maybe the answer’s in there somewhere?
I read back through this entry, and think again how terrible it is, and wonder if I will ever dare post it – a snapshot of the real me. What would be my motivation? Sympathy? I’ve had enough shots at that. Help? I get more than my share of that. Hope? No-one can give me that, no-one can promise anything about this illness, or my future. I get very scared about work again – salary cut in half this month, and terrible fear that my working life is over forever. I wonder if I said this before in this entry? I said it to someone else today online; but my short-term memory is so shot now. This sets off a chain of panic about what caused this terrible drop in my health six, nine? months ago – the hearing loss, the neuro symptoms. The evils of M.E. decided to make a go at a V-Day landing, 12 years into the war, and successfully crossed the blood-brain barrier? – beach-landing successful, occupation permanent?
I’m cut short as I panic above: L comes in and asks how my milk was: I panic and talk about the clanging in my ear and am told “it’s just tinnitus” – I crack, fly into panic at the thought of living with this all my life;
[Content removed because I just can't...]
Everything’s changed and the house is full of ghosts. I am point-blank terrified just now as I type this. Yesterday is like today is like tomorrow and it’s all me alone, and these terrible internal conversations going on forever, and me ruining everything, and nothing ever making any sense again. I hear some banging sounds in the kitchen. I remember the weblogs of others with M.E., particularly one on livejournal, I think of the closeness and solidarity between partners there, and the bravery to fight on, and I feel shame, shame, shame.
I try and calm and work out why it went so so badly today, as another night begins. Was it writing this entry? Normally after I have written something here, some kind of truce descends inside me. I often call my illness “thinking disease” – that I think too much on every possible danger, magnify every fear and trample every hope. I thought today when I started this it would be instructive to me to see how a day worked: isn’t this the first step in behavioural therapy? It seems to have magnified everything and thrown me into hell. But I hate this being called a “bad day” – so many are like this. Good days do not follow bad days like day follows night, and I hold no hope for tomorrow. But introspection? For me? Like stirring a bee’s nest with your hand.