There comes a point where your grief and pain rises up. It swells and expands, it whips itself up, it froths and rages.
You change your routine, you do anything you can to stem up, to calm it, to force the waters back down.
There comes a point where you fail.
There comes a point where your dam breaks and you stop, mid-attempt to stop it and the shaking takes you over and things slip from your hands and your face is wet before you figure out you're crying. And then the tears cover you, drip everywhere, you can't wipe them away as fast as they come and then you stop caring, you stop trying to stop it and just give in to it, hoping it makes you feel better, hoping it helps, hoping it fixes something, SOMETHING broken inside you.
But it doesn't. The crying stops, eventually, but nothing is better, nothing has been fixed, you've achieved nothing but a basket full of tissues and a damp t-shirt from after you gave up on even the tissues.
Crying doesn't fix my stupid broken womb. But neither does tidying, or reading, or laundry, or obsessively organizing bracelets. It might distract me for a day if I keep it up enough, but I always, eventually, reach the end of the book (or series, if the pain is deep) or the bottom of the laundry basket or run out of things to organize, or just the strength to do it with. And then I even run out of tears. And then I really just....don't know where to go.
7 pregnancies, one baby. The cruel, cruel twist being that with each one I want another baby more and more. I wish I could stop, just stop the cycle of conception and waiting and pain and broken dams, but I can't. I'm just too stupid or too self-destructive to give in and admit defeat.
Later, I might write something about the politics of miscarriage (including some of the stupid things people who've never had one say to you) but right now I'm busy trying to hold myself together and waiting for the patches of salt water on my clothes to dry.
Monday, 2 April 2012
Saturday, 25 February 2012
Bipolar Blossoms
The cherry blossom holds much symbolism within Japan. According to the Buddhist tradition, the breathtaking but brief beauty of the blossoms symbolizes the transient nature of life. The flowers last for at most a few weeks, but during that time, both the mountains and the cities are full of the delicate pink flowers.
For most of the last decade of my life I've experienced symptoms which baffled me. I was 14 when I first tried to take my life, and while at the time my reasons made sense, they seemed real and valid, and the pain I was in was chronic and unrelenting, trying to understand that state of mind in recent years has been difficult. The logic of my actions eludes me. I don't know if it's just that no adult, having left adolescence, can truly understand that pain. Having filled our lives with necessary mundanities, is it possible to comprehend the way your world falls apart at a harsh word? A perceived slight? A toppling in your social rank? When these things are everything to you, do they hurt just as much as losing your house, or your partner, or your reputation as an adult? I think they must.
I couldn't tell you much about my mental health before then, apart from that the eating disorder was all encompassing and I dismissed everything else as a symptom of that. But after that? There were moods so low it felt like someone had cut all the nerves to my face. I couldn't focus my eyes, I'd go days without talking, without looking up from my schoolbooks, without even sitting with my friends in the library or cafeteria. And then there were times when I felt like I'd been injected with dark energy. I wasn't happy, I wasn't alive, I was just.....everywhere, and everything, all at once. I was going to start a rock band, become a serial killer, an architect, a dancer. Careers and futures flickered through my mind faster than seems possible, but I was always so completely serious about them. Nothing was a whim. I was dedicated, completely and utterly, until the depression crept back and sucked me down again. I wouldn't sleep and then I'd leave the house at 5am, walk halfway across the city, just walk and walk and walk until I found something that seemed worth stopping for. In my later teens, I'd get into hideous relationships, I'd hurt people for reasons I didn't understand, and at one point I wrote a catalogue of poems about an ex-lover that shocked me when I recently looked up my writing account to take them all offline. I was vicious and cruel. I wasn't happy, but I was humming, positively crashing into the walls with dark energy. When I was 18 I came home from a family trip, turned on the computer, applied for any live-in job that was away from London and 3 days later I was on a train to the southernmost tip of the country for what turned into two months of drinking and fucking away the pain I was in.
But you see, at no point did it ever occur to me, or the people around me, that all of these things? The violence and the drinking and the promiscuity and the mad life changes and the dark energy? They were all heavy indicators that I wasn't just depressed. I was having manic episodes. My mania, though it went unrecognised for many years, has always come much closer to killing me than the depression has. Depression didn't put me in strange beds, in strange cars, in strange towns, with strangers. Depression didn't have me goading and fighting with anyone who came near me. Depression didn't have me walking the streets at 5 in the morning, defiantly iPod-deaf and not even trying to watch out for myself. Depression never told me I could fly, or live forever, or take on grown men in a fist fight, or somersault off a wall. Depression didn't have me planning weddings to three people, nor did it see my way to cheating on the third. It didn't tell me that I really could maintain a boyfriend and a fiance, that somehow it would all work out well. Depression was always realistic about life.
This week started out bad. I had a lot of set-backs, there was a lot of pain and a lot of misery and when I was already tired and close to snapping, we got some really bad news. I held it together long enough to make a phonecall to confirm, and halfway through that phonecall something inside me broke. The part of me that had been fighting and holding on just let go, and I sobbed myself to sleep. I woke up at midnight and started writing letters. Writing goodbyes, writing sorry's, writing I-love-you's. I tried to formulate words to leave my daughter. What could I tell her? What wisdom could I impart? How could I fit a lifetime of mothering into the hours between midnight and dawn? How could I warn her to watch out, to not let mental illness sneak up and take her down from behind? How could I explain that I loved her more than life itself, which is why I had to go, because I loved her too much to let her see me like this as she grew up? I loved her too much to risk my illness marking her life. I had promised not to let anyone hurt her, and the only way I could see to keep that promise was to leave.
At 4am, she woke up. I tried for an hour to get her back to sleep but it just wasn't happening. Nothing was working, so eventually I decided that we'd watch some TV and I'd endure the heartbreak of her being awake when I left.
She asked me to put Glee on, so I looked it up and sure enough, there was a new episode. I loaded it up. It was an act that would change our lives.
This weeks episode dealt with a suicide attempt, and the fallout after it. I could not have predicted, at all, that this would be the subject matter, or that the stars would align and force me to see it that morning. At first I was angry. I had made my decision. I didn't want to feel bad about it. I knew I was doing the right thing. Besides, I'd heard all the 'it gets better' bullshit before. Well guess what? When you have a chronic hereditary condition and debilitating mental health problems, it doesn't get better. It gets worse. Every day, every week, everytime you try to reach out and grab at life, it gets worse. I didn't want to hear it. I didn't want to hear about how selfish I was from people who couldn't understand my decision. I didn't want to hear that I was wrong in the eyes of a society that wouldn't help me no matter how hard I tried. I didn't want any of it. I'd heard it all before, and more, and none of it mattered to me or made a difference.
And then something got through. Through all those awful cliche's, through all the rubbish and judgement and all those actors' menthol-induced-tears, something hooked into me. It sunk in, with this idea, a small idea, but an idea nonetheless. I hadn't done anything yet. This, all of this, in my life, this is not what I'm living for. This is not the rest of my life. There is so much I haven't done yet. There is so much I'd pushed aside to make way for other people's needs, other peoples dreams. How could I be so selfless as to end my life for the sake of not hurting my child, when I wasn't willing to be selfish enough to make my life worth living in the first place? How could I hate myself for burdening my husband but not hate him for giving up my live, dreams, and future for the sake of his? Why was it always my responsibility to do the hard thing, the painful thing? Why couldn't I, just once, be irresponsible and happy? Why couldn't I, for once, put myself first?
So I did.
I left my house early that morning and I spent all day etching a permanent reminder on myself. A reminder that the mania is short lived. That it blossoms and dies and sometimes it is beautiful and sometimes it is terrible but it is never forever. That I am strong and solid and crooked and out of me, beautiful things flower and grow and I have made beautiful things before and I will make them again. It is also a reminder that if at any point in the future I feel that down again, that desperate and low, there is always an alternative. It doesn't have to fix anything, sometimes it can be crazy and stupid and expensive but if I always try to find an alternative and take it, then maybe, just maybe I'll outlive this. Maybe I'll see my baby have babies. Maybe I'll see those babies have babies. Maybe I'll get to tell those babies the story of the day I chose a reminder that death is always near, rather than death itself.
Friday, 3 February 2012
A shitty month in a lifetime of shitty months.
So, January was shit.
I made the decision to come off the contraceptive pill, because my migraines? They were *insane*. I was having between 2 and five a week, often with no break days inbetween. They definitely weren't rebound headaches because I have never actually been given proper migraine drugs to treat my migraines. I've been managing on co-dydramol, which I've had to limit because I need it to manage my joint pain too.
I was also having a hard time remembering to take the pill. My mental health is not all it could be and between sleep lags and just not being 100% present and accounted for in my own life, I knew I could not take it responsibly.
My sex life has not been amazing recently, by any means. Multiple illnesses have wiped me out, and Mr A has been doing nightshifts, so The Beast has been sleeping in our bed a lot, so that she sleeps better.
And yet, somehow, I still managed to get pregnant.
And of course, because I'm me, it didn't stick.
So while I was whinging on facebook about my hideous cold that went to my chest, what I was really crying over was pregnancy number 5 and its swift departure from my uterus.
But I couldn't dwell too long. I had my Disability Living Allowance tribunal on the 31st, I had to figure out a way to make it there and survive the ordeal.
It was.....horrifying. My appointment was for 3:40pm, we didn't go in until close to 4:30 if not after, and in the interim I got so anxious that I was freezing, shaking and sobbing in the waiting room while my poor friend and advocate sat beside me. I held a menthol scented tissue over my mouth the entire time I was in the tribunal because when I took it away I hyperventilated and got dizzy, and almost as soon as I got in there they told me they didn't think my case had enough medical evidence so they wanted to adjourn in order to collect more. I held it together until I left the room when I fell into a wall and broke down in anxious sobbing again. Eventually they called me back to confirm that they were adjourning for more evidence, and worst of all, that they would be sending a doctor to my house to examine me. At that point my world caved in and I just needed to be out of that building. I nearly collapsed in the lift again, dizzy and nauseated.
There is nothing, nothing I can imagine that they could do that would be worse than sending someone to my house, to examine me. I feel sick just thinking about it. My house is my safe place. My house is where I can be sick, where I can hide. They are literally invading my sanctuary and violating me inside it. They couldn't have come up with something more designed to make me want to close the whole case if they tried.
I got home that night and spent hours in shock, freezing cold and shaking, desperately suicidal. I honestly thought I was going to have to go to A&E and admit myself to keep safe. Luckily some good friends were around and verbally held my hand until the shock started to fade and they distracted me like the fabulous people they are.
You'd think, given that that's already quite a lot of shit for one month, that it would be over, right? No. My husband announces the next morning that we don't have enough money to move. Not devastating, I hear you say? Actually, it is. The flat we live in is wildly unsuitable to our needs, and I'm miserable, and moving was the only thing giving my near-future any structure. I *needed* the idea of moving to keep me putting one foot in front of the other. And now it's gone.
Simultaneously, the British Government were busy passing what I like to call the 'Fuck those dirty cripples' law, which is so horrific and vicious in its nature and so unrelenting in its hatred of disabled people that actually knowing that it's real and not something from a history book takes my breath away.
I am physically and emotionally battered. I feel like I've climbed out of a car-wreck and I'm wandering around the roadside, dazed.
January did not, in any way, start my year off well.
I made the decision to come off the contraceptive pill, because my migraines? They were *insane*. I was having between 2 and five a week, often with no break days inbetween. They definitely weren't rebound headaches because I have never actually been given proper migraine drugs to treat my migraines. I've been managing on co-dydramol, which I've had to limit because I need it to manage my joint pain too.
I was also having a hard time remembering to take the pill. My mental health is not all it could be and between sleep lags and just not being 100% present and accounted for in my own life, I knew I could not take it responsibly.
My sex life has not been amazing recently, by any means. Multiple illnesses have wiped me out, and Mr A has been doing nightshifts, so The Beast has been sleeping in our bed a lot, so that she sleeps better.
And yet, somehow, I still managed to get pregnant.
And of course, because I'm me, it didn't stick.
So while I was whinging on facebook about my hideous cold that went to my chest, what I was really crying over was pregnancy number 5 and its swift departure from my uterus.
But I couldn't dwell too long. I had my Disability Living Allowance tribunal on the 31st, I had to figure out a way to make it there and survive the ordeal.
It was.....horrifying. My appointment was for 3:40pm, we didn't go in until close to 4:30 if not after, and in the interim I got so anxious that I was freezing, shaking and sobbing in the waiting room while my poor friend and advocate sat beside me. I held a menthol scented tissue over my mouth the entire time I was in the tribunal because when I took it away I hyperventilated and got dizzy, and almost as soon as I got in there they told me they didn't think my case had enough medical evidence so they wanted to adjourn in order to collect more. I held it together until I left the room when I fell into a wall and broke down in anxious sobbing again. Eventually they called me back to confirm that they were adjourning for more evidence, and worst of all, that they would be sending a doctor to my house to examine me. At that point my world caved in and I just needed to be out of that building. I nearly collapsed in the lift again, dizzy and nauseated.
There is nothing, nothing I can imagine that they could do that would be worse than sending someone to my house, to examine me. I feel sick just thinking about it. My house is my safe place. My house is where I can be sick, where I can hide. They are literally invading my sanctuary and violating me inside it. They couldn't have come up with something more designed to make me want to close the whole case if they tried.
I got home that night and spent hours in shock, freezing cold and shaking, desperately suicidal. I honestly thought I was going to have to go to A&E and admit myself to keep safe. Luckily some good friends were around and verbally held my hand until the shock started to fade and they distracted me like the fabulous people they are.
You'd think, given that that's already quite a lot of shit for one month, that it would be over, right? No. My husband announces the next morning that we don't have enough money to move. Not devastating, I hear you say? Actually, it is. The flat we live in is wildly unsuitable to our needs, and I'm miserable, and moving was the only thing giving my near-future any structure. I *needed* the idea of moving to keep me putting one foot in front of the other. And now it's gone.
Simultaneously, the British Government were busy passing what I like to call the 'Fuck those dirty cripples' law, which is so horrific and vicious in its nature and so unrelenting in its hatred of disabled people that actually knowing that it's real and not something from a history book takes my breath away.
I am physically and emotionally battered. I feel like I've climbed out of a car-wreck and I'm wandering around the roadside, dazed.
January did not, in any way, start my year off well.
Tuesday, 24 January 2012
There are a lot of words.
Mostly they are coming out of my daughter's mouth. When I started this blog she was a squawking lump of refluxy, giggling fat. You could roll her across a room. Now, she has opinions. And good lord, don't we just know it. She will tell you, at length, what the other parent did that day that really pissed her off (although when she doesn't know a word, she replaces it with babble and outrage). She will delight in realising that she knows the word for something when we see it and that delight will lead to ten minutes of joyful crowing about the dog/cat/cake/bus/whatever. I can ask her a question and get a response. She can articulate her needs in more than just gestures and screeches. Words are amazing.
For the first time in her life I'm really enjoying being a mother. It's a good feeling.
However, everything else right now, it just feels bad. I'm so depressed most days that it chews at my edges. I cry every day about how bad a mother I feel I am, about my failings. Sometimes the crying is big, chest-shivering, full-body crying. Sometimes it's that silent, tearless, unsatisfying crying that happens when I'm so exhausted by a situation that my body can't even drum up the energy to cry properly.
I'm better now at recognising the signs of mania. The problem is that by taking pre-emptive action against mania, I trigger bouts of what I call 'riptide depression'. Little whirlpools of depression that arrive fast and fuck you up. The thought process goes thus: (real example from tonight)
While surfing the web: "Oooh, instructions on how to make herbal soap! That looks like so much fun, and I have some ice cube trays that would make perfect moulds! Maybe I should look into that."
While searching for a place to buy glycerin soap: "Wow, this could be a really fun project, maybe I could sell them? Or make loads of Christmas presents in preparation for Xmas '12! It would be SO organised, this is a great idea!"
After adding glycerin soap to my amazon basket, while looking for moulds: "What am I doing? I have 4 unmailed out orders, 6 orders waiting for me to start them, four unfinished personal projects, and a few dozen projects waiting to be put on Etsy. Why am I trying to give myself more to do? Why am I collecting a new hobby? OH. Because I'm manic. Right. Let's put a stake in this time-vampire right now."
Immediately, we hit the riptide: "Yeah, because I'm such a fucking idiot I can't even have a hobby, or buy soap. Why do I bother doing anything? I never finish. I'm an idiot. I'm a stupid, stupid, useless person. Why did I even think that was a good idea? Like anyone would want some shitty soap I made myself anyway. Like anyone wants to buy anything I make. They DON'T, that's why I don't make any money. And here I am, when we've just had a big fight about budgets, trying to waste more of his money buying materials for another fucking project that would only get forgotten about and half finished like every other fucking stupid thing in my stupid, pathetic life."
This happens at least three or four times I week. I'm swimming along, quite happily, then I over-reach, hit a riptide, and drown in self-loathing. Every time. I really desperately need my psychiatrist appointment to come through. I need someone to listen to me and help me. I'm trying to sort my life out but I feel like nothing I do makes a dent in the pile of shit it's turned into.
Some people on a forum belong to wanted to help me so much that they got together a lump sum of money and donated it to me, so I can hire a cleaner, because the place is such a mess I can't cope with it. I cried for days with gratitude. I looked up cleaners, and I sent one email out but never got a reply. After that I lost confidence for a few weeks, but finally the shame of the money sitting there made me move, and I sent out another email to a different company. But I mis-typed my phone number and so they sent me an email instead, but now I'm so embarrassed that I can't even type my own phone number right that I can't contact them. How stupid will they think I am? And when they see my flat....the shame of the state we live in....I can't cope with it. I can't accept help because my shame is so huge. It makes my fingers heavy and stops my hands moving and make my chest close in panic when I even try to move forward.
Shame.....my world involves so much shame. Shame over my mental health. Shame that I feel ashamed for being crazy. Shame for how I 'allow' my mental health to affect my family's lives. Shame for allowing my daughter to live in a dirty home. Shame for taking charity from my friends. Shame that even when people give me money to help me do something, I'm too pathetic to get it done. Shame that I can't even tell my friends about this because I worry they'll think I'm not grateful. Shame for being a bad businesswoman, and wife, and mother. Shame that everyone thinks I'm intelligent, and loving, and funny, and strong, and basically doing an ok job, when the reality is nobody really understand how very, very bad things are. Shame that I'm such a good liar that nobody even realises they're seeing a lie.
There are a lot of words, but 'shame' seems to be the only one I see right now.
For the first time in her life I'm really enjoying being a mother. It's a good feeling.
However, everything else right now, it just feels bad. I'm so depressed most days that it chews at my edges. I cry every day about how bad a mother I feel I am, about my failings. Sometimes the crying is big, chest-shivering, full-body crying. Sometimes it's that silent, tearless, unsatisfying crying that happens when I'm so exhausted by a situation that my body can't even drum up the energy to cry properly.
I'm better now at recognising the signs of mania. The problem is that by taking pre-emptive action against mania, I trigger bouts of what I call 'riptide depression'. Little whirlpools of depression that arrive fast and fuck you up. The thought process goes thus: (real example from tonight)
While surfing the web: "Oooh, instructions on how to make herbal soap! That looks like so much fun, and I have some ice cube trays that would make perfect moulds! Maybe I should look into that."
While searching for a place to buy glycerin soap: "Wow, this could be a really fun project, maybe I could sell them? Or make loads of Christmas presents in preparation for Xmas '12! It would be SO organised, this is a great idea!"
After adding glycerin soap to my amazon basket, while looking for moulds: "What am I doing? I have 4 unmailed out orders, 6 orders waiting for me to start them, four unfinished personal projects, and a few dozen projects waiting to be put on Etsy. Why am I trying to give myself more to do? Why am I collecting a new hobby? OH. Because I'm manic. Right. Let's put a stake in this time-vampire right now."
Immediately, we hit the riptide: "Yeah, because I'm such a fucking idiot I can't even have a hobby, or buy soap. Why do I bother doing anything? I never finish. I'm an idiot. I'm a stupid, stupid, useless person. Why did I even think that was a good idea? Like anyone would want some shitty soap I made myself anyway. Like anyone wants to buy anything I make. They DON'T, that's why I don't make any money. And here I am, when we've just had a big fight about budgets, trying to waste more of his money buying materials for another fucking project that would only get forgotten about and half finished like every other fucking stupid thing in my stupid, pathetic life."
This happens at least three or four times I week. I'm swimming along, quite happily, then I over-reach, hit a riptide, and drown in self-loathing. Every time. I really desperately need my psychiatrist appointment to come through. I need someone to listen to me and help me. I'm trying to sort my life out but I feel like nothing I do makes a dent in the pile of shit it's turned into.
Some people on a forum belong to wanted to help me so much that they got together a lump sum of money and donated it to me, so I can hire a cleaner, because the place is such a mess I can't cope with it. I cried for days with gratitude. I looked up cleaners, and I sent one email out but never got a reply. After that I lost confidence for a few weeks, but finally the shame of the money sitting there made me move, and I sent out another email to a different company. But I mis-typed my phone number and so they sent me an email instead, but now I'm so embarrassed that I can't even type my own phone number right that I can't contact them. How stupid will they think I am? And when they see my flat....the shame of the state we live in....I can't cope with it. I can't accept help because my shame is so huge. It makes my fingers heavy and stops my hands moving and make my chest close in panic when I even try to move forward.
Shame.....my world involves so much shame. Shame over my mental health. Shame that I feel ashamed for being crazy. Shame for how I 'allow' my mental health to affect my family's lives. Shame for allowing my daughter to live in a dirty home. Shame for taking charity from my friends. Shame that even when people give me money to help me do something, I'm too pathetic to get it done. Shame that I can't even tell my friends about this because I worry they'll think I'm not grateful. Shame for being a bad businesswoman, and wife, and mother. Shame that everyone thinks I'm intelligent, and loving, and funny, and strong, and basically doing an ok job, when the reality is nobody really understand how very, very bad things are. Shame that I'm such a good liar that nobody even realises they're seeing a lie.
There are a lot of words, but 'shame' seems to be the only one I see right now.
Wednesday, 9 November 2011
Oh, hi, what?
*stumbles in*
Shit.
*stumbles out again*
*stumbles back in with big bouquet of 'SORRY FOR BEING CRAP' roses, like every bad boyfriend throughout history*
So, it's been a really really long time since I updated my blog. Part of this has been technical problems -my laptop went in for repair and that turned into a three month long saga about how fucking shit the company I sent it off with are- and part of it has been health problems, and part of it has been that part of me feels like if I don't write it down, it isn't real. I write it down on Facebook but on facebook everything disappears so fast....everything is gone in a few days and you can forget. With blogging, things stick around. They stay.
*
Health wise, things have been shit. In late August I started having seizures. A lot of seizures. Between 2-6 a day. At first we thought I was just fainting. I have been known to faint quite a lot, so we didn't think much of it. But it got more and more frequent and more and more scary and it didn't seem to have any logical cause and I started shitting bricks about the fact that I was just randomly passing out ALL THE TIME. I scouted around a bit and eventually figured out that I wasn't fainting, I was having Atonic Seizures. We figured out a day when my in-laws could take Terror Tot so we could spend the day in A&E trying to get someone to figure out what was wrong with me. After a kerfuffle with a shitty A&E nurse, an hour and a half in another clinic and a seizure on re-entry at A&E, I was eventually admitted 'overnight'. 'Overnight' turned into 'for three days' and for one of those days I didn't see a single doctor or get given a single test. It was horrific, because the ward I was on at one point threatened to ban Terror Tot from visiting on the ward, because she was 'too loud' and could upset the other patients, so the next day I didn't see her at all, and Mr A had to go back to work while I was still in hospital, so for a day I didn't see her and only saw him for 12minutes. It was miserable and lonely and this coupled with having no friends come to visit me (despite a few FB hints (ok, a lot of FB hints)) made for quite an unhappy few days.
Eventually I had an EEG and a consult with the head of Neurology. The Neuro's felt that what I was having weren't epileptic attacks, but non-epileptic seizures. They bounced me to Psych, and together with Psych I decided to go on medication (SSRI's) to control my stress and anxiety and therefore control the seizures. They discharge me, I go home and hug the crap out of my baby.
I get hold of the tasty tasty psych drugs (Citalopram) and start taking them. Immediately, things go Really Quite Wrong Indeed. First of all I feel sick, and spaced out, and very very numb, and that lasts for a bit, and I think I'll be happy when it passes but I'm not, because what comes next is so much worse. Scary scary scary depression. Like, my friends are worried about my safety and I'm staring dreamily at kitchen knives and talking frankly about how if I wanted to die, no one could actually stop me and that my life is pointless, I'm just trudging through it until I get to a natural resting point and then I'll jump off a roof or something. It was horrific and I thought I'd be happy when it passed but I wasn't. because guess what? Yes. It got WORSE.
It started with a gentle but swift *pop* out of the depressive cycle. I wasn't any happy, but I suddenly had the urge to Get Up And Do Things. I started doing crafty stuff, to take my mind off and Make Myself Feel Useful. Then I started doing little DIY projects. Stuff I'd been meaning to do. Hells yeah, I thought, look at me, being all useful and shit! Look at me and my productivity! Medication ROCKS. Then I couldn't sleep properly. I'd sleep really fitfully and wake frequently, and I'd wake up early and not be able to get back to sleep again. I wasn't getting any rest during the day because I was So Busy Being Productive. In fact, I was SO busy being productive that some days I didn't sit down between waking up in the morning at 10 or 11pm, and even when I was sitting down I'd be at my sewing machine, working on something. I began to realise that I felt possessed. I wasn't productive, I was manic. I couldn't stop. I was miserable and exhausted and near tears all the time but the pills just would not let me stop doing stuff.
I went to my GP and asked her to take me off the pills, because I couldn't cope. Then came two weeks of misery while I weaned off them, and then a new prescription (Sertraline). We're currently about a week into the Sertraline and so far there've been no huge changes, but I am climbing out of a pretty big depressive-pit. The last week I've slept most days and I haven't really got out of bed in a while, because bed is safe and comfortable and warm and bed doesn't make me need to do things. If I'm in bed, I can pretend the rest of the world doesn't exist.
I can pretend that crippling manic episodes on low-dose anti-depressants aren't a giant red flag for Bipolar Disorder. I can pretend that Bipolar would explain....a lot. Like, my whole personality and everything I've done since I was 15. I can pretend that the few feelers I've put out with people who know about these things and who I trust to be honest with me didn't return the info that yes, bipolar seems likely.
I can pretend that I might not have another mental health label before I'm 24.
*
I've been doing a lot of craft stuff lately. I started an Etsy shop and it's fun and I like the community. I like having a sense of purpose. I like feeling good about myself. I like doing things with my hands. I'm not bad at this stuff, not by a long shot. I'm not amazing, but I'm better than the average person, and that makes me feel good.
*
Terror Tot is doing really well. She is officially no longer allergic to dairy and we're making up for 2 years without it with loads of everything she's never had before. I'm enjoying this stage of her life. She's so communicative and every new word is a revelation and every new quirk makes my heart skip a beat, and every new skill remind me that this isn't MY baby here, this is a person I just happened to give birth to.
And everytime she grows up a bit more I get a little bit sad that I'll never give birth to another baby. My heart dips and my stomach drops and my chest rises as it fills up with hurt and loss, and I swallow it down and breathe it out and scrub my wrist across my eyes and tell myself I wouldn't really want another baby. Not really.
Shit.
*stumbles out again*
*stumbles back in with big bouquet of 'SORRY FOR BEING CRAP' roses, like every bad boyfriend throughout history*
So, it's been a really really long time since I updated my blog. Part of this has been technical problems -my laptop went in for repair and that turned into a three month long saga about how fucking shit the company I sent it off with are- and part of it has been health problems, and part of it has been that part of me feels like if I don't write it down, it isn't real. I write it down on Facebook but on facebook everything disappears so fast....everything is gone in a few days and you can forget. With blogging, things stick around. They stay.
*
Health wise, things have been shit. In late August I started having seizures. A lot of seizures. Between 2-6 a day. At first we thought I was just fainting. I have been known to faint quite a lot, so we didn't think much of it. But it got more and more frequent and more and more scary and it didn't seem to have any logical cause and I started shitting bricks about the fact that I was just randomly passing out ALL THE TIME. I scouted around a bit and eventually figured out that I wasn't fainting, I was having Atonic Seizures. We figured out a day when my in-laws could take Terror Tot so we could spend the day in A&E trying to get someone to figure out what was wrong with me. After a kerfuffle with a shitty A&E nurse, an hour and a half in another clinic and a seizure on re-entry at A&E, I was eventually admitted 'overnight'. 'Overnight' turned into 'for three days' and for one of those days I didn't see a single doctor or get given a single test. It was horrific, because the ward I was on at one point threatened to ban Terror Tot from visiting on the ward, because she was 'too loud' and could upset the other patients, so the next day I didn't see her at all, and Mr A had to go back to work while I was still in hospital, so for a day I didn't see her and only saw him for 12minutes. It was miserable and lonely and this coupled with having no friends come to visit me (despite a few FB hints (ok, a lot of FB hints)) made for quite an unhappy few days.
Eventually I had an EEG and a consult with the head of Neurology. The Neuro's felt that what I was having weren't epileptic attacks, but non-epileptic seizures. They bounced me to Psych, and together with Psych I decided to go on medication (SSRI's) to control my stress and anxiety and therefore control the seizures. They discharge me, I go home and hug the crap out of my baby.
I get hold of the tasty tasty psych drugs (Citalopram) and start taking them. Immediately, things go Really Quite Wrong Indeed. First of all I feel sick, and spaced out, and very very numb, and that lasts for a bit, and I think I'll be happy when it passes but I'm not, because what comes next is so much worse. Scary scary scary depression. Like, my friends are worried about my safety and I'm staring dreamily at kitchen knives and talking frankly about how if I wanted to die, no one could actually stop me and that my life is pointless, I'm just trudging through it until I get to a natural resting point and then I'll jump off a roof or something. It was horrific and I thought I'd be happy when it passed but I wasn't. because guess what? Yes. It got WORSE.
It started with a gentle but swift *pop* out of the depressive cycle. I wasn't any happy, but I suddenly had the urge to Get Up And Do Things. I started doing crafty stuff, to take my mind off and Make Myself Feel Useful. Then I started doing little DIY projects. Stuff I'd been meaning to do. Hells yeah, I thought, look at me, being all useful and shit! Look at me and my productivity! Medication ROCKS. Then I couldn't sleep properly. I'd sleep really fitfully and wake frequently, and I'd wake up early and not be able to get back to sleep again. I wasn't getting any rest during the day because I was So Busy Being Productive. In fact, I was SO busy being productive that some days I didn't sit down between waking up in the morning at 10 or 11pm, and even when I was sitting down I'd be at my sewing machine, working on something. I began to realise that I felt possessed. I wasn't productive, I was manic. I couldn't stop. I was miserable and exhausted and near tears all the time but the pills just would not let me stop doing stuff.
I went to my GP and asked her to take me off the pills, because I couldn't cope. Then came two weeks of misery while I weaned off them, and then a new prescription (Sertraline). We're currently about a week into the Sertraline and so far there've been no huge changes, but I am climbing out of a pretty big depressive-pit. The last week I've slept most days and I haven't really got out of bed in a while, because bed is safe and comfortable and warm and bed doesn't make me need to do things. If I'm in bed, I can pretend the rest of the world doesn't exist.
I can pretend that crippling manic episodes on low-dose anti-depressants aren't a giant red flag for Bipolar Disorder. I can pretend that Bipolar would explain....a lot. Like, my whole personality and everything I've done since I was 15. I can pretend that the few feelers I've put out with people who know about these things and who I trust to be honest with me didn't return the info that yes, bipolar seems likely.
I can pretend that I might not have another mental health label before I'm 24.
*
I've been doing a lot of craft stuff lately. I started an Etsy shop and it's fun and I like the community. I like having a sense of purpose. I like feeling good about myself. I like doing things with my hands. I'm not bad at this stuff, not by a long shot. I'm not amazing, but I'm better than the average person, and that makes me feel good.
*
Terror Tot is doing really well. She is officially no longer allergic to dairy and we're making up for 2 years without it with loads of everything she's never had before. I'm enjoying this stage of her life. She's so communicative and every new word is a revelation and every new quirk makes my heart skip a beat, and every new skill remind me that this isn't MY baby here, this is a person I just happened to give birth to.
And everytime she grows up a bit more I get a little bit sad that I'll never give birth to another baby. My heart dips and my stomach drops and my chest rises as it fills up with hurt and loss, and I swallow it down and breathe it out and scrub my wrist across my eyes and tell myself I wouldn't really want another baby. Not really.
Tuesday, 7 June 2011
Oh, there I am.
We moved house, then I got sick, then I got better, then there just seemed to be an endless stream of really important things I never had the time to do, then we had to start preparing for our trip to South Africa, then we had to actually GO to South Africa, then we had to come back and deal with the aftermath of being gone for a fortnight and then we found out I was pregnant with a planned and much-wanted baby.
Now I'm sitting here going through my 2nd miscarriage in 11 months.
I have been a shit blogger and a shit friend recently, but I have felt *so* overwhelmed by everything. There are all these demands on my time and not enough of me or my time to meet them. I'm having worse partial dislocations and the 'normal' partials are happening more often. My mood is generally much improved but physically I'm beat up. I've been trying to be good to myself and part of that was stepping away from blogging, because I was getting so emotionally invested in what was happening that I was coming away drained. I don't think that's healthy but at the same time, it upsets me that there are people out there I care for who I haven't even 'seen' for months because I'm too weak to cope with reading about their lives. It's pathetic.
Right now we're doing a lot of thinking about the possibility of my hypermobility being connected with my inability to stay pregnant. The more I read up about chemical pregnancies/early miscarriages, the more I think that I've had more of these than I realised. There's definitely been one more, possibly more but a mix of bad memory and incredibly irregular periods makes this difficult to track. If your period isn't due, how do you know it's late? You can't. But I can know if it's suddenly much much heavier than normal, or much more painful, which has happened a few times.
It was my 23rd birthday yesterday, I dragged Mr Arienette to a theme park and we rode rollercoasters. I smiled so much my face ached. Life is ups and downs.
Now I'm sitting here going through my 2nd miscarriage in 11 months.
I have been a shit blogger and a shit friend recently, but I have felt *so* overwhelmed by everything. There are all these demands on my time and not enough of me or my time to meet them. I'm having worse partial dislocations and the 'normal' partials are happening more often. My mood is generally much improved but physically I'm beat up. I've been trying to be good to myself and part of that was stepping away from blogging, because I was getting so emotionally invested in what was happening that I was coming away drained. I don't think that's healthy but at the same time, it upsets me that there are people out there I care for who I haven't even 'seen' for months because I'm too weak to cope with reading about their lives. It's pathetic.
Right now we're doing a lot of thinking about the possibility of my hypermobility being connected with my inability to stay pregnant. The more I read up about chemical pregnancies/early miscarriages, the more I think that I've had more of these than I realised. There's definitely been one more, possibly more but a mix of bad memory and incredibly irregular periods makes this difficult to track. If your period isn't due, how do you know it's late? You can't. But I can know if it's suddenly much much heavier than normal, or much more painful, which has happened a few times.
It was my 23rd birthday yesterday, I dragged Mr Arienette to a theme park and we rode rollercoasters. I smiled so much my face ached. Life is ups and downs.
Wednesday, 30 March 2011
Disconnected.
Before we started moving house, I'd had lots and lots of partial dislocations (as is normal in people with my condition) but never a full dislocation.
In the last two weeks, I've had 6.
My mood is still up, my life is still good, but my body is struggling with the extra activity, and it's starting to weigh on my mind that my hypermobility may be even more severe than I'd previously thought. And I thought it was pretty damn bad before.
Dislocations *hurt*.
Anyway, laptop is now only opening in safe mode, and keyboard is ridiculously fucked up, so it needs to go to the laptop hospital. Poor laptop :(
In the last two weeks, I've had 6.
My mood is still up, my life is still good, but my body is struggling with the extra activity, and it's starting to weigh on my mind that my hypermobility may be even more severe than I'd previously thought. And I thought it was pretty damn bad before.
Dislocations *hurt*.
Anyway, laptop is now only opening in safe mode, and keyboard is ridiculously fucked up, so it needs to go to the laptop hospital. Poor laptop :(
Sunday, 20 March 2011
Alive with the Glory
I originally wrote this as a comment over on Veronica's latest blog post, but then I changed my mind and decided that really, it needed a more general audience and it's something I've been trying to figure out how to say here anyway.
Last night I was hanging out of the window of my new place, smoking my 'congrats for making it through the day alive' cigarette, and I realised in that moment that I felt alive. Fucking.....ALIVE. Like I could breathe again, not just go through the mechanical, necessary motions of moving air in and out of my lungs and heaving my chest up and down, but properly and fully, I could breathe. I could feel my skin and I could feel the tears in my eyes and I could feel that feeling I hadn't felt since I was 17, that wanttosingwanttodancewanttoshout feeling that bubbles up inside and overflows.
It was beautiful. For the first time since I started smoking again I didn't feel bad about it, or mentally justify it to the baying mob of better-mothers in my head. It was ok, because it was making me feel. It was ok because I wanted to do it and I am allowed to do things I want, even if I'm a mother. I'm allowed to want. I'm allowed to need. I'm allowed to be a person, with flaws and bad habits and things that have nothing to do with my child. I'm allowed to do things I'm not 'supposed' to. I'm allowed to go away for a night and NOT miss my baby. I'm allowed to drink a little more than I should at a special night out with girlfriends. I'm allowed to drop my kid off at granny's house and go home and have loud sex with my husband even when we were supposed to be running errands.
I feel like I've taken off a heavy winter coat and boots and hat and scarf and gloves and I'm glorying in the nakedness of freedom from guilt. I'm a person. PART of that person is a mother, but I'm so very much more than that too.
Today for the first time in years I smiled for no reason. Just because the sunset was beautiful and the air was crisp and I was alive, and it was enough for me.
Last night I was hanging out of the window of my new place, smoking my 'congrats for making it through the day alive' cigarette, and I realised in that moment that I felt alive. Fucking.....ALIVE. Like I could breathe again, not just go through the mechanical, necessary motions of moving air in and out of my lungs and heaving my chest up and down, but properly and fully, I could breathe. I could feel my skin and I could feel the tears in my eyes and I could feel that feeling I hadn't felt since I was 17, that wanttosingwanttodancewanttoshout feeling that bubbles up inside and overflows.
It was beautiful. For the first time since I started smoking again I didn't feel bad about it, or mentally justify it to the baying mob of better-mothers in my head. It was ok, because it was making me feel. It was ok because I wanted to do it and I am allowed to do things I want, even if I'm a mother. I'm allowed to want. I'm allowed to need. I'm allowed to be a person, with flaws and bad habits and things that have nothing to do with my child. I'm allowed to do things I'm not 'supposed' to. I'm allowed to go away for a night and NOT miss my baby. I'm allowed to drink a little more than I should at a special night out with girlfriends. I'm allowed to drop my kid off at granny's house and go home and have loud sex with my husband even when we were supposed to be running errands.
I feel like I've taken off a heavy winter coat and boots and hat and scarf and gloves and I'm glorying in the nakedness of freedom from guilt. I'm a person. PART of that person is a mother, but I'm so very much more than that too.
Today for the first time in years I smiled for no reason. Just because the sunset was beautiful and the air was crisp and I was alive, and it was enough for me.
Friday, 4 March 2011
Update very quickly.
My marriage is not over, but my keyboard is FUBAR so I can't write a big long update on what happened because right now I'm having to C&P in ALL my 'h's and that shit is looooong. What I might do is c&p in some posts I already wrote on a private group on Facebook where I've already filled in all the blanks, that way until I have a working h-key you're not all in the dark.
Wednesday, 2 March 2011
It's dark in here.
I think my marriage is over. I had my first night away from A.B on Saturday and it was lovely, but I was chatting with my friends, we were complaining about our relationships -as you do- and the things I was saying seemed so small, so insignificant, so stupid. I realised slowly over the next couple of days that all our fighting, all my unhappiness with the relationship, it's not because he's actually a bad person or a bad husband. I'm unhappy with him because I'm unhappy with EVERYTHING. And the worst thing is, I'm taking it out on him, blaming him for my misery as if he's causing it, when really all I do is drag him down and hold him back because he spends all his time looking after me. I'm so sick all the time, he's either at work or he's taking care of A.B and taking care of me. We fight over stupid things because I'm unhappy and never satisfied with life.
The truth is, I didn't want this. I got married because I fell in love but at the time, I wasn't expecting to live very long. I was very sick, and I wanted a few years of stability while I slowly wound down my life. It's easy to be in love when you think you're about to clock out. I wasn't expecting to get pregnant after 6 months of marriage, and when I did, I didn't want a baby. I continued the pregnancy for two reasons. I didn't think it would last (everything every doctor was telling me pointed to a negative outcome) and and I didn't think our relationship could survive any alternatives. As stupid as it sounds, I wasn't expecting to have a baby. No one, at any stage, had really prepared me for the idea that we would end up with a child. From the moment she was born, I went into a waking coma. My life just stalled and nothing I did, nothing that happened could re-start it. I tried over and over to do things that might make me come back to life but nothing worked. Blogging was supposed to help but while it was a good distraction sometimes, it didn't produce any real revelation like I was expecting. In fact the more involved I got with the disabled blogging community, the more depressed I got.
If I leave, they'll both be better off. He's an amazing dad and he'd be a better dad if he wasn't having to care for me too. I know people won't understand... it's practically accepted that fathers sometimes leave their children, but mothers don't. Mothers are supposed to be there always. Mothers are supposed to stay forever. But that's not what's best for her. What's best for her is to be with the best parent, and her father is the best parent. I'll stay around as much as I can to help him and I won't disappear from her life, but I think the only way to give her a happy, healthy childhood is for her to grow up in a home where there isn't constant unhappiness and fighting. I love her too much to ruin her life by staying around to poison everything.
I don't know where I'm going to live or how I'm going to live. I suppose these things have a way of working out. I won't pretend I have any answers at this point, or that I'm not scared, but there's no doubt in my mind that this is the right thing to do. Both of them deserve better.
The truth is, I didn't want this. I got married because I fell in love but at the time, I wasn't expecting to live very long. I was very sick, and I wanted a few years of stability while I slowly wound down my life. It's easy to be in love when you think you're about to clock out. I wasn't expecting to get pregnant after 6 months of marriage, and when I did, I didn't want a baby. I continued the pregnancy for two reasons. I didn't think it would last (everything every doctor was telling me pointed to a negative outcome) and and I didn't think our relationship could survive any alternatives. As stupid as it sounds, I wasn't expecting to have a baby. No one, at any stage, had really prepared me for the idea that we would end up with a child. From the moment she was born, I went into a waking coma. My life just stalled and nothing I did, nothing that happened could re-start it. I tried over and over to do things that might make me come back to life but nothing worked. Blogging was supposed to help but while it was a good distraction sometimes, it didn't produce any real revelation like I was expecting. In fact the more involved I got with the disabled blogging community, the more depressed I got.
If I leave, they'll both be better off. He's an amazing dad and he'd be a better dad if he wasn't having to care for me too. I know people won't understand... it's practically accepted that fathers sometimes leave their children, but mothers don't. Mothers are supposed to be there always. Mothers are supposed to stay forever. But that's not what's best for her. What's best for her is to be with the best parent, and her father is the best parent. I'll stay around as much as I can to help him and I won't disappear from her life, but I think the only way to give her a happy, healthy childhood is for her to grow up in a home where there isn't constant unhappiness and fighting. I love her too much to ruin her life by staying around to poison everything.
I don't know where I'm going to live or how I'm going to live. I suppose these things have a way of working out. I won't pretend I have any answers at this point, or that I'm not scared, but there's no doubt in my mind that this is the right thing to do. Both of them deserve better.
Thursday, 24 February 2011
Pointless Post In Which I Am Lame (and a picture of Baby A.B)
(This is pretty much the face everyone pulls around me, all.the.time.)
So today I discovered (read: saw on the side of The Bloggess' blog) an awesome guy called Josh Weed who is basically the blogger I wish I was, but mormon and with a penis and with three kids (my vagina just couldn't handle that shit.) I clicked on his link at about 9pm and it's now 00:50 and I have been reading almost solidly (except breaks to take a pregnancy test and make some cheese and crackers and eat a lump of danish blue cheese crackerless BECAUSE I'M FUCKING FEARLESS) and I have laughed more times than I can count. I could say a bunch of shit about Josh, like that he's witty, and sensitive, and shows a surprising amount of insight into the life of his wife (known as Wife) and a touching appreciation for what she does for him and her role in their family and in society. I could say that I think if I could ever persuade Mr A to go to counselling, he's the kind of person I'd want to explain my marital problems to. I could say a lot of shit, but instead I'll say this:
He is crazy in a way that I seriously appreciate and twisted and dark in a way that had me cackling.
If that's not a first rate endorsement, I don't know what is.So today I discovered (read: saw on the side of The Bloggess' blog) an awesome guy called Josh Weed who is basically the blogger I wish I was, but mormon and with a penis and with three kids (my vagina just couldn't handle that shit.) I clicked on his link at about 9pm and it's now 00:50 and I have been reading almost solidly (except breaks to take a pregnancy test and make some cheese and crackers and eat a lump of danish blue cheese crackerless BECAUSE I'M FUCKING FEARLESS) and I have laughed more times than I can count. I could say a bunch of shit about Josh, like that he's witty, and sensitive, and shows a surprising amount of insight into the life of his wife (known as Wife) and a touching appreciation for what she does for him and her role in their family and in society. I could say that I think if I could ever persuade Mr A to go to counselling, he's the kind of person I'd want to explain my marital problems to. I could say a lot of shit, but instead I'll say this:
He is crazy in a way that I seriously appreciate and twisted and dark in a way that had me cackling.
Anyway, in an example of how fucking convoluted and ridiculous my life is, about a million months ago (November) Josh wrote a post about The NeverEnding Story (if you have never seen TNS you are not old enough to operate the Internet. Please go crawl back into your crib and stop making me feel so fucking old) and it reminded me that for a brief, shining moment in my pregnancy, I was all 'LETS CALL THE BABY ATREYU!' and my husband was totes scared of me because I kept waking him up in the dead of night by slowly twisting my thumbs into his back and screeching "I just can't stand the way you breathe!" so he didn't immediately voice extremely loud objections and question my sanity, which I totally took as a green light. Little baby Atreyu B.J was going to be awesome.
So tonight I was thinking back, and then I started wondering about all the people little Atreyu went to school with, who would think we actually named Atreyu after the band, Atreyu (which they knew of as some weird oldies music their clearly awesome parents listen to) and then I had this insane urge to listen to some Atreyu, so I paused Snakes On a Plane and youtubed me some Atreyu, and it was while listening to 'Lipgloss and Black' that I remembered how fitting this song used to be to my life, and realised with sadness how fitting it still is.
For those of you with less than perfect hearing, or who just don't speak metalcore, I've included some of the lyrics (without the endless repetitions)
If I gave you pretty enough words
Could you paint a picture of us that works
With emphasis on function rather than design
Aren't you tired?
cause I will carry you
On a broken back and blown out knees
I have been where you are for a while
Aren't you tired of being weak?
Such rage that you could scream
All the stars right out of the sky
And destroy the prettiest starry night
Every evening that I die
I am exhumed just a little less human and lot more bitter and cold
After all these images of pain
Have cut right through you
I will kiss every scar and weep
You are not alone
Then I'll show you that place,
in my chest where my heart,
still tries to beat;
It still tries to beat
Aren't you tired of being weak?
Such rage that you could scream
All the stars right out of the sky
And destroy the prettiest starry night
Every evening that I die
Live, Love, Burn, Die
I spent my teen years writing poetry, trying to communicate what people clearly weren't hearing in my much more eloquent habits of casual sex and black-out drinking, and in four years I never wrote something that expressed what I was trying to say like this song does. I wrote some dark shit and it still kind of flummoxes me to this day that no one took me aside and went "Listen, I've read some of your poetry and truth be told, I think you're a little disturbed." I mean...my boyfriends were reading this stuff, and what I was saying by writing it was 'Please, please, I am so fucking damaged that I can't even tell you how damaged I am, please tell me you see it so that some of this pressure building up in here can release.' I still know some of my ex-boyfriends now, and I kind of want to shake them and ask them if they realised at the time just what they were dealing with. Mr A was one of the only boyfriends ever who has never read anything I've written, and I'm sure that's a coincidence, but sometimes I wonder.
More to come soon, on such diverse subjects as holidays, moving house, cleaning, and breastfeeding.
Actually, those aren't that diverse at all. They're all boring and mundane and domestic. Oh Josh, you had me pegged.
Tuesday, 15 February 2011
Avoidance and not-so-near-death experiences.
So, the Flu is gone, but it left me with what we thought was a fractured rib. It got worse and worse however, and on the night of the 13th, after what I thought was 3 weeks but appears to only have been one*, I was writhing around, in so much agony I couldn't breathe, screaming from every movement, convinced the the rib was breaking, splintering, and penetrating my lungs. I caved, and told Mr A I needed him to take me to the hospital. Four hours and an x-ray later it's discovered that I do not have a broken rib, but instead I apparently live in the 16th century. I have fucking pleurisy. Who even gets pleurisy? Pirates and poets, thats who.
I was released with a box of codeine and instructions to rest. The resting I was happy with but the codeine? Lets be straight here: I wouldn't say I'm an ex drug addict, but I'm an ex drug abuser. I didn't drink because I liked it, or because it was social, or because it felt nice. I didn't take drugs to achieve new experinces or enhance a good time. I did drugs and took alcohol specifically with the intention of getting fucked up. I attempted to obliterate myself with substances. I have abused everything from diet pills to ibuprofen to whisky to cocaine. You can't give me a drug and ask me to be sensible. I'm not. I don't have a filter, I don't have a valve that cuts things off when it gets too much. There is no shallow end of substance use for me. I always jump in at the deep end, and then I sink to the fucking bottom, because there is something wrong in my brain that won't tell me when to stop. Even when I was first given co-dydramol by my GP in response to my (at that point undiagnosed) hypermobility, I immediately started abusing them, however unintentionally. I was taking the maximum dose of co-dydramol alongside the maximum dose of ibuprofen, every single day, and I was still in pain. I weaned myself off them and now I don't even take them daily. Not because there's no pain, but because the fear of addiction and abuse is stronger than the pain. The knowledge of how easy it would be to slip up looms over me. The weight of this all is enormous.
So too was that box of codeine.
I turned it over and over in my hands. I didn't take any the moment she gave it to me, I made myself wait. Why? Why prolong my agony when I had a solution? I don't know. Just to prove I could, perhaps. Just to make sure I was able to. I waited until I got home, and then I waited until I got settled back into bed, and then I waited a little longer, and then I sneezed and then coughed and a scream ripped itself out of my chest and tears stabbed at my eyes and my vision sparkled with little white flakes of pain and I knew it was madness to wait any longer, so I took two tiny pills.
Ten minutes later I was filled with the knowledge that once the pleurisy is gone, the pills will have to be gone too, but I will probably spend the rest of my life hoping that something goes badly wrong with my body so that I am once again prescribed an opiate. Because I have never felt as at peace with my life and myself and the world as I do now. I have never felt as good as I do fifteen minutes after taking my pills.
And isn't it sad that that's a dangerous thing?
*Time has gone all screwy. The result of lying in bed for three weeks with the 'flu rather than drug use, because I was having trouble before the codeine, but still annoying. I was sure I'd been ill about 5weeks but first mention of it elsewhere on the internet is on the 22nd of January. I've been free of the 'flu but nursing the pleurisy for what felt like two weeks at least, but can only have been one. I'm a bit confused, to be honest.
I was released with a box of codeine and instructions to rest. The resting I was happy with but the codeine? Lets be straight here: I wouldn't say I'm an ex drug addict, but I'm an ex drug abuser. I didn't drink because I liked it, or because it was social, or because it felt nice. I didn't take drugs to achieve new experinces or enhance a good time. I did drugs and took alcohol specifically with the intention of getting fucked up. I attempted to obliterate myself with substances. I have abused everything from diet pills to ibuprofen to whisky to cocaine. You can't give me a drug and ask me to be sensible. I'm not. I don't have a filter, I don't have a valve that cuts things off when it gets too much. There is no shallow end of substance use for me. I always jump in at the deep end, and then I sink to the fucking bottom, because there is something wrong in my brain that won't tell me when to stop. Even when I was first given co-dydramol by my GP in response to my (at that point undiagnosed) hypermobility, I immediately started abusing them, however unintentionally. I was taking the maximum dose of co-dydramol alongside the maximum dose of ibuprofen, every single day, and I was still in pain. I weaned myself off them and now I don't even take them daily. Not because there's no pain, but because the fear of addiction and abuse is stronger than the pain. The knowledge of how easy it would be to slip up looms over me. The weight of this all is enormous.
So too was that box of codeine.
I turned it over and over in my hands. I didn't take any the moment she gave it to me, I made myself wait. Why? Why prolong my agony when I had a solution? I don't know. Just to prove I could, perhaps. Just to make sure I was able to. I waited until I got home, and then I waited until I got settled back into bed, and then I waited a little longer, and then I sneezed and then coughed and a scream ripped itself out of my chest and tears stabbed at my eyes and my vision sparkled with little white flakes of pain and I knew it was madness to wait any longer, so I took two tiny pills.
Ten minutes later I was filled with the knowledge that once the pleurisy is gone, the pills will have to be gone too, but I will probably spend the rest of my life hoping that something goes badly wrong with my body so that I am once again prescribed an opiate. Because I have never felt as at peace with my life and myself and the world as I do now. I have never felt as good as I do fifteen minutes after taking my pills.
And isn't it sad that that's a dangerous thing?
*Time has gone all screwy. The result of lying in bed for three weeks with the 'flu rather than drug use, because I was having trouble before the codeine, but still annoying. I was sure I'd been ill about 5weeks but first mention of it elsewhere on the internet is on the 22nd of January. I've been free of the 'flu but nursing the pleurisy for what felt like two weeks at least, but can only have been one. I'm a bit confused, to be honest.
Sunday, 23 January 2011
Thursday, 20 January 2011
Strangers.
The most bizarre part to me now, was thanking him afterwards. This man had just ripped my world apart in a matter of seconds. He'd destroyed me, and once I'd stopped being eaten alive by pain, I would go on and destroy all of my closest friends.
And I was thanking him. Sincerely, and repetitively, and robustly. I was thanking him for his time, apologising, all the apologising....I felt genuinely sorry that I'd dragged him into this, that my mumbled, hysterical, tearful voicemail had been left on HIS phone, that HE was the one who had had to destroy me, that I'd made that his role in the whole thing. He hadn't asked for it and he didn't deserve it. It was an accident of fate, and in one of the last feelings I was to have for 6 months, I felt bad for him.
In 2008, an ocean away from me, a good friend of mine took her life. The facts surrounding her suicide will never be clear. We will never know the truth of what happened, and that hurts. I can't last any of it to rest while there are so many pieces left out of this puzzle. We, her online support network, had known her for some years, and we were a tight-knit community. As far as we had known, she was in a residential psychiatric unit, so it was not at all strange to us that we hadn't heard from her in a while. When you're trying to bring the crazy under control, that can be a 24/7 experience, and access to the internet can be limited, if it's there at all. The first we heard that something was wrong was from an outsider, who sent the leader of the community a message saying that she was sorry to break the news, but J was dead. We, the moderators of the community, immediately broke into mass panic, and quickly mobilised in an attempt to find out whether this was true. We didn't trust any outside source to break news like this to us.
It was the Friday before a holiday weekend in Canada, and from my small flat in London I frantically phoned every hospital in and around her city, desperately leaving messages, trying to find anyone who could speak to me. When I reached a dead end (ha ha) with phoning morgues, I started on newspapers, figuring someone, somewhere, had to have a connection. I left strained, tearful, jumbled messages on answering machines, begging anyone who could possibly help to please please phone me or contact me.
At 22:15 on May 17th 2008 I received this message from a reporter at a local newspaper who had said he may be able to help me:
Three years later, it is easier, and less painful. I've shut J up in a box in my heart and the muscle around the wound there has healed over and sometimes I feel her when it beats. I feel the sharp edges of that box and I feel the ice that gripped my nerves that night, before I drowned myself in alcohol so that I wouldn't have to feel something so immense.
Two years later, I watched J's sister via facebook as she went through a pregnancy with a nephew J would never meet. I watched her give birth to a beautiful son, and I'm watching him grow up. He will never know his beautiful, damaged, once-in-a-very-short-lifetime aunt, although I know she will influence his life immensely.
Sometimes I am angry, sometimes I am overwhelmed. But always, always I am thankful to the man who listened to his messages and heard a girl sobbing on the other end of the phone, and put a dampener on his holiday and put his professional life at risk to try to bring comfort to a group of strangers. He made a sacrifice that day, and we will never forget him for it.
And I was thanking him. Sincerely, and repetitively, and robustly. I was thanking him for his time, apologising, all the apologising....I felt genuinely sorry that I'd dragged him into this, that my mumbled, hysterical, tearful voicemail had been left on HIS phone, that HE was the one who had had to destroy me, that I'd made that his role in the whole thing. He hadn't asked for it and he didn't deserve it. It was an accident of fate, and in one of the last feelings I was to have for 6 months, I felt bad for him.
In 2008, an ocean away from me, a good friend of mine took her life. The facts surrounding her suicide will never be clear. We will never know the truth of what happened, and that hurts. I can't last any of it to rest while there are so many pieces left out of this puzzle. We, her online support network, had known her for some years, and we were a tight-knit community. As far as we had known, she was in a residential psychiatric unit, so it was not at all strange to us that we hadn't heard from her in a while. When you're trying to bring the crazy under control, that can be a 24/7 experience, and access to the internet can be limited, if it's there at all. The first we heard that something was wrong was from an outsider, who sent the leader of the community a message saying that she was sorry to break the news, but J was dead. We, the moderators of the community, immediately broke into mass panic, and quickly mobilised in an attempt to find out whether this was true. We didn't trust any outside source to break news like this to us.
It was the Friday before a holiday weekend in Canada, and from my small flat in London I frantically phoned every hospital in and around her city, desperately leaving messages, trying to find anyone who could speak to me. When I reached a dead end (ha ha) with phoning morgues, I started on newspapers, figuring someone, somewhere, had to have a connection. I left strained, tearful, jumbled messages on answering machines, begging anyone who could possibly help to please please phone me or contact me.
At 22:15 on May 17th 2008 I received this message from a reporter at a local newspaper who had said he may be able to help me:
I would rather have spoken with you on the telephone about this, but it seems the sad information you have is correct. I have a source who just called me back and confirmed the news about J...... Once I got the information, I was sick with dread wondering if I should tell you at all...but I get the sense that you needed to know, one way or another. I am truly sorry for your loss.And I thanked him. And my heart washed over with ice water, and I thanked him. And my stomach puddled in a cold heap at my feet, and I thanked him. And I shut myself down at that moment and did not let myself open up again until November 8th, when 2 little lines on a little white stick threw me out of my orbit. And I thanked him.
Three years later, it is easier, and less painful. I've shut J up in a box in my heart and the muscle around the wound there has healed over and sometimes I feel her when it beats. I feel the sharp edges of that box and I feel the ice that gripped my nerves that night, before I drowned myself in alcohol so that I wouldn't have to feel something so immense.
Two years later, I watched J's sister via facebook as she went through a pregnancy with a nephew J would never meet. I watched her give birth to a beautiful son, and I'm watching him grow up. He will never know his beautiful, damaged, once-in-a-very-short-lifetime aunt, although I know she will influence his life immensely.
Sometimes I am angry, sometimes I am overwhelmed. But always, always I am thankful to the man who listened to his messages and heard a girl sobbing on the other end of the phone, and put a dampener on his holiday and put his professional life at risk to try to bring comfort to a group of strangers. He made a sacrifice that day, and we will never forget him for it.
Monday, 17 January 2011
Midnight in the Garden of Good and Toddlerhood.
Not-So-Baby A.B has recently decided to wake up between 3 and 4 every day and then stay awake, unless I lie down next to her for the rest of the night. This is infuriating and has the effect of making me so angry that tonight I found myself shouting at her, shouting at Mr A, shouting into my hands. Nothing will get her back to sleep except over an hour of lying perfectly still beside her. Now, under normal circumstances, this would be fine. Where else would I be at 3am except in bed? Except that HER sleeping badly makes ME sleep badly, so I HAVEN'T been in bed, or capable of going to sleep earlier (and even if I was tired, by the time I've done even 20 minutes of the 'make mummy pretend she's a statue' game, I'm so wound up and irate that I have no hope of sleeping) so right now, we're both pretty miserable.
I know you shouldn't wish stages of your childs life away, but I really can't wait til she can talk. It's so frustrating just not knowing what the fuck she WANTS. I'm tearing my hair out because she can't just tell me what's wrong so instead we're both upset and crying and tired beyond words.
It's 5:30am now, she's upstairs crying while her dad tries to get her to sleep, and has been for almost an hour, and I was upstairs trying to get her to sleep for at least 40 minutes before that. It's ridiculous. What's the problem? What's the matter? Why won't she just SLEEP.
I have no wisdom, no wit, no insight into the depths of mental health problems tonight. Tonight everything is fucked and I'm tired and I don't know what's wrong with my child and I just want it to stop.
I know you shouldn't wish stages of your childs life away, but I really can't wait til she can talk. It's so frustrating just not knowing what the fuck she WANTS. I'm tearing my hair out because she can't just tell me what's wrong so instead we're both upset and crying and tired beyond words.
It's 5:30am now, she's upstairs crying while her dad tries to get her to sleep, and has been for almost an hour, and I was upstairs trying to get her to sleep for at least 40 minutes before that. It's ridiculous. What's the problem? What's the matter? Why won't she just SLEEP.
I have no wisdom, no wit, no insight into the depths of mental health problems tonight. Tonight everything is fucked and I'm tired and I don't know what's wrong with my child and I just want it to stop.
Wednesday, 5 January 2011
To 350D or not to 350D, that is the question.
When I was a teenager, I was a member over at DeviantArt.com. My fellow London members were my only real friends. They were the group I hung out with and we had a circle of people that was just like a 'real life' circle of friends, except instead of meeting at school or whatever, we originally met online.
Within this circle, photographers made up the bulk of the artists. This meant we spent a lot of time talking technicalities. A lot of time. I soon learned to covet certain camera's, and among them was the Canon EOS 350D. I wanted a DSLR so bad. It pulled at my soul and everytime I'd fiddle with one of the boys' camera I'd practically salivate. I never got my DSLR from my parents, because the thought (fairly, to be honest) that I wasn't responsible with my belongings. I would have been with a DSLR, but I don't blame them for not trusting me.
A couple of years ago I was at a family event for my husband's family, and I wandered off with one of my father-in-law's millions of camera's to take pictures of horses and avoid the awkward lull in conversation that developed whenever I came near. I fell in love all over again. I took some absolutely stunning pictures despite not knowing a thing about the camera I was using. It was amazing, and I went home feeling a bit sad I had to leave it where it was. But DSLR's are expensive. I knew I'd never afford one, I just let it go.
Last christmas, I didn't really get any presents. We didn't have any money, and there wasn't anything I wanted. We kept saying we'd put it off til I found something I wanted. My birthday came round and it was much the same thing. Not much money, nothing I wanted. I was supposed to go to a comedy show with Mr A but A.B was refusing to drink anything and we couldn't leave her for long enough and we very unhappily had to cancel. For this Christmas just passed, I was supposed to be getting a backpiece tattoo as a BIG present for all the presents I'd missed out on. Then we realised that because of my moles, I'm going to need to have my back examined for changes fairly regularly and covering up a bunch of marks with a tattoo is not conducive to appropriate and regular checks of mole size. Damnit. So I started thinking of what else I could get. Mr A had vaguely suggested the idea of getting me a new digital camera as a smaller present before christmas, but I'd dismissed the idea. But slowly last night, I came around.
And so I did it. I 350D'd.
Within this circle, photographers made up the bulk of the artists. This meant we spent a lot of time talking technicalities. A lot of time. I soon learned to covet certain camera's, and among them was the Canon EOS 350D. I wanted a DSLR so bad. It pulled at my soul and everytime I'd fiddle with one of the boys' camera I'd practically salivate. I never got my DSLR from my parents, because the thought (fairly, to be honest) that I wasn't responsible with my belongings. I would have been with a DSLR, but I don't blame them for not trusting me.
A couple of years ago I was at a family event for my husband's family, and I wandered off with one of my father-in-law's millions of camera's to take pictures of horses and avoid the awkward lull in conversation that developed whenever I came near. I fell in love all over again. I took some absolutely stunning pictures despite not knowing a thing about the camera I was using. It was amazing, and I went home feeling a bit sad I had to leave it where it was. But DSLR's are expensive. I knew I'd never afford one, I just let it go.
Last christmas, I didn't really get any presents. We didn't have any money, and there wasn't anything I wanted. We kept saying we'd put it off til I found something I wanted. My birthday came round and it was much the same thing. Not much money, nothing I wanted. I was supposed to go to a comedy show with Mr A but A.B was refusing to drink anything and we couldn't leave her for long enough and we very unhappily had to cancel. For this Christmas just passed, I was supposed to be getting a backpiece tattoo as a BIG present for all the presents I'd missed out on. Then we realised that because of my moles, I'm going to need to have my back examined for changes fairly regularly and covering up a bunch of marks with a tattoo is not conducive to appropriate and regular checks of mole size. Damnit. So I started thinking of what else I could get. Mr A had vaguely suggested the idea of getting me a new digital camera as a smaller present before christmas, but I'd dismissed the idea. But slowly last night, I came around.
And so I did it. I 350D'd.
Tuesday, 4 January 2011
Hmm.
Yes. It all seems to have gone wrong there a bit, didn't it?
I'm still alive. I'm alright, although Christmas was stressful. I've just been struggling to cope with some things.
I had a bit of a freak out about some upcoming tests for possible gynae issues. I pretty much convinced myself I had cancer, and I didn't want to talk about it, because I felt stupid, and with so many friends who've lost people or had cancer themselves, I felt ridiculous. How on earth could I sit there and bitch and moan about being scared of MAYBE having cancer when other people actually DO have it?
My first test came back clear, which is good, but means that problems I've been experiencing are still a mystery.
I had my first hydrotherapy appointment and it went well. I have another one next week. I'm not too keen on sharing my therapist with another person in a small pool during sessions, but whatever. Limited resources and all that, it makes sense I guess. And I don't have to like it, I'm not paying for it, so I should be grateful I can have it at all.
I had quite a bad downward turn after my last entry, and was very very down for a couple of weeks. About mid-december suddenly the depressive episode was over and since then I've been clawing my house back from the wilderness that had taken over it. My husband has also been home a lot of the time (only been at work two days since December 10th) so I've been trying to not only get some time to myself, but fix my sleeping habits, get quality time with Mr A and also do a fair amount of housework. Unfortunately the problem is the more cleaning and housework you do, the more you feel you need to keep it up. And the worse it looks when it gets the slightest bit messy. I've yet to train Mr A to 'tidy as he goes' which is a bit infuriating when I go up for a bath and come back after only an hour to a destroyed living room. He also seems to be allergic to the dishwasher.
I don't really know what's going on with my life right now. I feel more directionless than usual, except before I was directionless and stagnant, now I seem to be moving forward but just in no direction, which almost seems worse. It scares me that a whole year went by and I don't have a single thing to show for it. Nothing happened. Nothing changed. Nothing was achieved. And that I have nothing planned for the next year. Nothing will be achieved, nothing will be changed (except a move of house). I feel like I'm just going through the motions and I honestly don't feel like anything will change until we move country in 2012. I feel like I'm halfway through a 3 year pause, and nothing can happen until I get off that plane and unpause. Then I can start my life again.
Honestly, I'm not happy, and haven't been for so long. I'm STILL waiting to hear about councelling, my doctor has tried to chase it up twice to no avail. At this point I'm 3 months away from moving, and once I move house I'll have to go onto a new waiting list in my new area. It's doubtful I'll receive any help in the next 6 months and I know my next GP will try to encourage my onto medication before councelling. I feel like I've fallen into a gap.
I'm still alive. I'm alright, although Christmas was stressful. I've just been struggling to cope with some things.
I had a bit of a freak out about some upcoming tests for possible gynae issues. I pretty much convinced myself I had cancer, and I didn't want to talk about it, because I felt stupid, and with so many friends who've lost people or had cancer themselves, I felt ridiculous. How on earth could I sit there and bitch and moan about being scared of MAYBE having cancer when other people actually DO have it?
My first test came back clear, which is good, but means that problems I've been experiencing are still a mystery.
I had my first hydrotherapy appointment and it went well. I have another one next week. I'm not too keen on sharing my therapist with another person in a small pool during sessions, but whatever. Limited resources and all that, it makes sense I guess. And I don't have to like it, I'm not paying for it, so I should be grateful I can have it at all.
I had quite a bad downward turn after my last entry, and was very very down for a couple of weeks. About mid-december suddenly the depressive episode was over and since then I've been clawing my house back from the wilderness that had taken over it. My husband has also been home a lot of the time (only been at work two days since December 10th) so I've been trying to not only get some time to myself, but fix my sleeping habits, get quality time with Mr A and also do a fair amount of housework. Unfortunately the problem is the more cleaning and housework you do, the more you feel you need to keep it up. And the worse it looks when it gets the slightest bit messy. I've yet to train Mr A to 'tidy as he goes' which is a bit infuriating when I go up for a bath and come back after only an hour to a destroyed living room. He also seems to be allergic to the dishwasher.
I don't really know what's going on with my life right now. I feel more directionless than usual, except before I was directionless and stagnant, now I seem to be moving forward but just in no direction, which almost seems worse. It scares me that a whole year went by and I don't have a single thing to show for it. Nothing happened. Nothing changed. Nothing was achieved. And that I have nothing planned for the next year. Nothing will be achieved, nothing will be changed (except a move of house). I feel like I'm just going through the motions and I honestly don't feel like anything will change until we move country in 2012. I feel like I'm halfway through a 3 year pause, and nothing can happen until I get off that plane and unpause. Then I can start my life again.
Honestly, I'm not happy, and haven't been for so long. I'm STILL waiting to hear about councelling, my doctor has tried to chase it up twice to no avail. At this point I'm 3 months away from moving, and once I move house I'll have to go onto a new waiting list in my new area. It's doubtful I'll receive any help in the next 6 months and I know my next GP will try to encourage my onto medication before councelling. I feel like I've fallen into a gap.
Thursday, 25 November 2010
Broken and Crazy: Part 1
So I'm splitting this into two parts, because I need to sort it out in my head that way. It's just what I need to do to make this all make sense. Part 1 will go into my recent physio appointment, and some physical stuff, and in part 2 we'll examine some recent mental health insights. Looking forward to it? OH GOSH I KNOW I AM!
Physiotherapy appointment. It SHOULD have been an hour, but for some reason that was never quite explained to me, it was only 30 minutes. I was just happy I got one, to be honest, after my projected callback time of 26 weeks, which would have put my assessment in March. For realz.
I get there and am presented with a form. What are you here for? How long has the problem gone on? What started the problem? Mark the area's affected. Does anything aggravate the problem? Name three activities that are difficult for you and mark their difficulty on a scale of one to ten. What do you hope to achieve with physiotherapy?
What do you hope to achieve with physiotherapy?
Hope? I'm so overwhelmed by this form and its questions that I only get to writing down the first word of my first of three named activities. I want to be facetious and write down 'Life', but I resist. There's nothing like a standardised form to make you feel like shit. Pathetic, whimpering, broken shit.
The physiotherapist [hereafter, physioT] takes me into a little cubicle and runs through the form with me. She seems surprised and a little suspicious about how much I already know about my condition. I'm embarrassed, flustered. I worry she thinks I'm trying to con her, trying to con everyone, going to extreme lengths for my scroungermoney. Later I feel a little angry. Why the FUCK should being informed about a diagnosed condition I've had my entire fucking life be suspicious? Am I supposed to stay wide-eyed and in the dark, put up with months of being uninformed and not seeking possible relief, just so that I don't arouse suspicion by being knowledgeable? Fuck that.
Her suspicions seem to be allayed during the physical exam, however. She gasps, again and again; short and sharp intakes of breath when my elbows touch behind my head or my arms bend backward on themselves or my hips, knees and ankles click loudly as I stand. Later she'll see me massaging what I accepted as a standard occurrence in my life, 'just' a dodgy knee to me, she informs me that my patella is subluxed, but for now she says I have one of the most severe cases of hypermobility she's seen in a while. I'm stuck between wanting to smile in pride and vindication and wanting to cry. On one hand, I finally don't feel like a faker, I finally have another confirmation of what I already knew: that my body is different. Part of me feels like if I MUST be broken and pained, then can't I be the best at that? It's an attitude I inherited from my eating disorder. Anorexics are competitive. Who will reach that impossible goal first? Who will get sickest, fastest? Who has most hospital admissions? Who is most shocking? No one with an eating disorder who's spent time amongst others with the same disorder can deny this phenomenon, or the strange feel of sickening pride you get in winning a round. It was strange to feel the Broken Pride again, and to feel it for something I have no control over. I'm 22. I win at being bendy. Do I get a trophy? Do I get a Bendy Badge? These questions remained unasked, and therefore unanswered. I have a feeling that's exactly as it should be.
The rest of the appointment is short and uneventful. PhsyioT wanted me to start a pilates class they hold there, but due to the fact that I can't get childcare on Thursday, I had to decline. She's referred me for Hydrotherapy instead, which I'm looking forward to, kind of. I have to get a swimming costume. In the fucking snow. I know right? She told me I can 'click' my joints all I want to if it makes me feel better, but not to purposefully sublux them if I can help it. She made me laugh a couple of times by giving me insight into things I didn't know about myself. She told me that my 'bad posture' is because I, like many hypermobile people, 'hang' off my joints, and that because it takes me more effort to sit up 'straight' and keep myself together, it's no wonder I bend and curve and bow all over the place. I suddenly had a memory of repeated tellings off by my mother, who didn't understand when I told her it hurt my back to sit up straight. Hydrotherapy should help develop my core strength and put a stop to all the slouching. Maybe!
I left with a better understanding of my condition, and a better appreciation of my body. I know I have it easy. I have online friends with Ehlers Danlos, and another with cancer, two more who've beaten cancer. I am lucky. I am also broken in my own right, and that's ok. I didn't realise that what my joints were doing were in fact partial dislocations. I have a lot more respect for myself for some reason now. Saying that my joints 'do this weird pop-y thing' doesn't have the same severity as 'partial dislocation'. Now that I know that's what it is, I feel relieved. I feel like...I'm not exaggerating how painful it is. I'm not being dramatic. Obvious full dislocations are worse, by far, but a partial dislocation is still a big deal, and multiple subluxations, dozens of them, all day every day for 2 years? That's fucking huge. That is just the most enormously huge amount of shit to deal with and I'm finally proud of myself for managing to do it, no matter the cost.
Physiotherapy appointment. It SHOULD have been an hour, but for some reason that was never quite explained to me, it was only 30 minutes. I was just happy I got one, to be honest, after my projected callback time of 26 weeks, which would have put my assessment in March. For realz.
I get there and am presented with a form. What are you here for? How long has the problem gone on? What started the problem? Mark the area's affected. Does anything aggravate the problem? Name three activities that are difficult for you and mark their difficulty on a scale of one to ten. What do you hope to achieve with physiotherapy?
What do you hope to achieve with physiotherapy?
Hope? I'm so overwhelmed by this form and its questions that I only get to writing down the first word of my first of three named activities. I want to be facetious and write down 'Life', but I resist. There's nothing like a standardised form to make you feel like shit. Pathetic, whimpering, broken shit.
The physiotherapist [hereafter, physioT] takes me into a little cubicle and runs through the form with me. She seems surprised and a little suspicious about how much I already know about my condition. I'm embarrassed, flustered. I worry she thinks I'm trying to con her, trying to con everyone, going to extreme lengths for my scroungermoney. Later I feel a little angry. Why the FUCK should being informed about a diagnosed condition I've had my entire fucking life be suspicious? Am I supposed to stay wide-eyed and in the dark, put up with months of being uninformed and not seeking possible relief, just so that I don't arouse suspicion by being knowledgeable? Fuck that.
Her suspicions seem to be allayed during the physical exam, however. She gasps, again and again; short and sharp intakes of breath when my elbows touch behind my head or my arms bend backward on themselves or my hips, knees and ankles click loudly as I stand. Later she'll see me massaging what I accepted as a standard occurrence in my life, 'just' a dodgy knee to me, she informs me that my patella is subluxed, but for now she says I have one of the most severe cases of hypermobility she's seen in a while. I'm stuck between wanting to smile in pride and vindication and wanting to cry. On one hand, I finally don't feel like a faker, I finally have another confirmation of what I already knew: that my body is different. Part of me feels like if I MUST be broken and pained, then can't I be the best at that? It's an attitude I inherited from my eating disorder. Anorexics are competitive. Who will reach that impossible goal first? Who will get sickest, fastest? Who has most hospital admissions? Who is most shocking? No one with an eating disorder who's spent time amongst others with the same disorder can deny this phenomenon, or the strange feel of sickening pride you get in winning a round. It was strange to feel the Broken Pride again, and to feel it for something I have no control over. I'm 22. I win at being bendy. Do I get a trophy? Do I get a Bendy Badge? These questions remained unasked, and therefore unanswered. I have a feeling that's exactly as it should be.
The rest of the appointment is short and uneventful. PhsyioT wanted me to start a pilates class they hold there, but due to the fact that I can't get childcare on Thursday, I had to decline. She's referred me for Hydrotherapy instead, which I'm looking forward to, kind of. I have to get a swimming costume. In the fucking snow. I know right? She told me I can 'click' my joints all I want to if it makes me feel better, but not to purposefully sublux them if I can help it. She made me laugh a couple of times by giving me insight into things I didn't know about myself. She told me that my 'bad posture' is because I, like many hypermobile people, 'hang' off my joints, and that because it takes me more effort to sit up 'straight' and keep myself together, it's no wonder I bend and curve and bow all over the place. I suddenly had a memory of repeated tellings off by my mother, who didn't understand when I told her it hurt my back to sit up straight. Hydrotherapy should help develop my core strength and put a stop to all the slouching. Maybe!
I left with a better understanding of my condition, and a better appreciation of my body. I know I have it easy. I have online friends with Ehlers Danlos, and another with cancer, two more who've beaten cancer. I am lucky. I am also broken in my own right, and that's ok. I didn't realise that what my joints were doing were in fact partial dislocations. I have a lot more respect for myself for some reason now. Saying that my joints 'do this weird pop-y thing' doesn't have the same severity as 'partial dislocation'. Now that I know that's what it is, I feel relieved. I feel like...I'm not exaggerating how painful it is. I'm not being dramatic. Obvious full dislocations are worse, by far, but a partial dislocation is still a big deal, and multiple subluxations, dozens of them, all day every day for 2 years? That's fucking huge. That is just the most enormously huge amount of shit to deal with and I'm finally proud of myself for managing to do it, no matter the cost.
Saturday, 20 November 2010
Hello chums
I'm still alive.
Things are just...things. Mr A is buzzing with nerves about a promotion, we've decided where we're moving to in March, I've been looking more deeply into immigration stuff for the move to Australia in 2011, Baby AB is now a Toddler, having discovered the ability to walk, she has 8 teeth coming through right now and we're trying to lay down the motherfuckin' law when it comes to breastfeeding, because feeding constantly to the level we were doing it was killing my soul.
So it's all been very....very. I'm so tired all the time but also so blank and uninspired and empty. I'm less depressed than I've been in a while but I'm feeling it more for some reason.
I have my physio assessment on Monday. I'm....nervous. I've all but weaned myself off my painkillers and I'm scared that I'll get in there are they'll ask me why the fuck I'm there.
Ho hum. Ho hum.
Things are just...things. Mr A is buzzing with nerves about a promotion, we've decided where we're moving to in March, I've been looking more deeply into immigration stuff for the move to Australia in 2011, Baby AB is now a Toddler, having discovered the ability to walk, she has 8 teeth coming through right now and we're trying to lay down the motherfuckin' law when it comes to breastfeeding, because feeding constantly to the level we were doing it was killing my soul.
So it's all been very....very. I'm so tired all the time but also so blank and uninspired and empty. I'm less depressed than I've been in a while but I'm feeling it more for some reason.
I have my physio assessment on Monday. I'm....nervous. I've all but weaned myself off my painkillers and I'm scared that I'll get in there are they'll ask me why the fuck I'm there.
Ho hum. Ho hum.
Tuesday, 2 November 2010
Sad Panda
Today I am a sad panda. No particular reason. Just am.
Except...maybe there is. Maybe I realised tonight that once again, I launched myself into something without actually thinking about the logical conclusion of my launch, and now that I am fully immersed, I've realised what a terrible, awful, ridiculous, stupid mistake I made. But it's too late now. There is NO going back without hurting people. Without letting people down. And while I probably overestimate my importance in peoples lives (probably? Definitely) I still am not enough of an asshole to think I can do whatever I like. And what's more, in the words of some anonymous philosopher somewhere, what is seen, cannot be unseen. I cannot bury my head in the sand now. I can't ignore what I know. And that is shit.
I've been blogging here for 10 months, which is longer than I lasted on any other blog.
Except...maybe there is. Maybe I realised tonight that once again, I launched myself into something without actually thinking about the logical conclusion of my launch, and now that I am fully immersed, I've realised what a terrible, awful, ridiculous, stupid mistake I made. But it's too late now. There is NO going back without hurting people. Without letting people down. And while I probably overestimate my importance in peoples lives (probably? Definitely) I still am not enough of an asshole to think I can do whatever I like. And what's more, in the words of some anonymous philosopher somewhere, what is seen, cannot be unseen. I cannot bury my head in the sand now. I can't ignore what I know. And that is shit.
I've been blogging here for 10 months, which is longer than I lasted on any other blog.
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