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.

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.

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.

Sunday, 31 October 2010

'Just' a simple meal.

So last Thursday I went and had spontaneous coffee with a friend and then on Friday I went to a big baby-company exhibition with another friend and then on Saturday I had my second night out since I got pregnant two years ago and then on Tuesday I arrive at hospital at 7am and they put me to sleep and ripped my mouth open and yanked all my teeth out.

Well. Two of my teeth out.

But it might as well have been all of them because GOD DAMN MOTHERFUCK that hurt. So then I just basically cried for a few days.

And that is where I've been at. I've also been avoiding blogger a bit because, to be honest, the reforms are overwhelming me right now. The atmosphere when it comes to disability is so toxic, it's terrifying. I never log onto twitter because my feed is flooded with news of who hates me now and who's started a campaign to have me and people like me sent to work camps or just made into dog food. I keep down what I'm doing, plugging away, trying to inject a little bit of good into the world in the hope that karma will see fit to take mercy on me. In the last month I've donated £100 to Whizzy Wheels, because Eilidh's story makes me cry, and because I want so badly for her to grow up thinking not of the people who's policies and decisions in some back-room in parliament made it almost impossible for her to get the chair she needed without a huge amount of help, but rather of the good people, the strangers who have so much love in their hearts that they spread their arms right out, touched as many people as they could, and spared as much as they could. I want her to grow up filled with the joy of the kindness of strangers, not the bitterness and fear and hurt that I feel. She won't have a face to put to most of her joy, and that's good. I have a face to my hurt, too many faces, in fact, and that's not how it should be.

The week before last, I changed GP practices, and I spoke to one of my new GP's about my depression. The good news? My new GP's are like, 700 shades of fucking rock. It's an all-female practise, you can get appointments SO easily, they're ridiculously friendly and accommodating, and I've met both doctor's and the practise nurse and they're all awesome. The bad new is that they're up two separate and brutal hills. The first time I went on my own, and by the time I got there I was late, grey, sweating, hyperventilating but barely breathing (I'm talented like that) and my pulse was insane. This is just what happens when I do hills, but they didn't know this, and thought I was having a heart attack. They took good care of me though, and from now on I'll do my best to only arrange appointments when Mr A can drive me there.

Had a bit of trouble at the appointment though, when I tried to explain to my doctor how worried I was about my weight. I'd just finished explaining how much pain I'm in and how difficult it is for me to move around. Her solution to my weight problems? Eat 7 meals a day! Words failed me, but I tried a different approach. What about the days when for whatever reason, I'm not hungry (this happens often, between pain and fatigue I can have to force down food I will gag on that will sit heavily and painfully in my stomach)? Her solution: Smoothies! Make lots and lots of fruit smoothies!
I just....
I don't....

I don't know how to explain to people whats wrong with me in a way they'll understand. Clearly I'm doing a terrible job at the moment, if my doctor thinks I can cart a toddler up and down the stairs and stand around making a meal seven times a day. Even 'just' a sandwich requires so much effort. My friends, blessed as most of them are with pain-free, mobile lives, don't understand. Just make some pasta? Surely that's the simplest of simple meals, and full of carbs! Excellent! Yes, it would be. But lets dissect that, step by step:

  1. Get out of bed by climbing over railings at end of bed (bed is flush against both walls in teeny tiny bedroom)
  2. Pick up toddler, carry downstairs.
  3. Find somewhere to stash toddler where she is not in my way, or harms way.
  4. pick up heavy pot
  5. either fill heavy pot with water at sink and move now-very-heavy-pot over to stove, or move heavy pot to stove and reach UP into cupboard, or DOWN into drawer, lift up jug, fill jug with water, transport very heavy jug to stove, tip into pot.
Lets stop here for a sec. I have already pulled my wrists out, lifting and carrying. I am already tired, from the lifting and the carrying and the fighting-toddler-into-highchair. My back and shoulders ache from reaching up or down, and I'm dizzy, too.
  1. Turn and press stove knob while holding down ignition switch for five seconds.
  2. shake out hands, which are throbbing and shaking from the pressing and holding.
  3. wait for water to boil (even if I pre-boil water with the kettle [which is heavier and hurts my wrists more] this takes a couple of minutes)
  4. pick up jar of pasta, unscrew lid, reach in and grab handful (because I don't trust my hands not to spasm and tip it all in)
  5. wait 5-10 minutes for pasta to cook.
  6. lift heavy pot off stove, avoiding toddler
  7. carry to sink
  8. tip out water while trying to retain pasta.
  9. carry heavy pot back to stove/counter while trying not to drop it
  10. reach up and get bowl
  11. pick up heavy pot, tip pasta into bowl.
That was 16 steps, some of which could have easily been expanded into two or three steps of their own. 16 steps, every single one a potential to hurt myself. Every single one a drain on my very limited supply of spoons, every single one carried out while not only looking after myself, but after Tiny Terror as well. 16 steps for one plain bowl of pasta. Since I can't eat pesto (it has cheese in it) if I want any flavour in my pasta, I'd damn well better make it myself. That's another, what, ten steps? 11 of those steps were carried out AFTER I had injured myself, while I was weak and dizzy.

It really isn't ever as simple as 'just' a bowl of pasta.

Saturday, 16 October 2010

She's an insoooomniac in-sooom-ni-ac on the floor...

So it's been roughly two weeks since I slept at night for more than one night in a row. I think I've had one 'decent' (by decent I mean long) nights sleep in that time and that day I woke up shaking with withdrawal and in massive spasms of pain.

I have never slept well, but this is wearing me down. Most days I've been surviving on 3 or 4 hour naps, maybe 7hrs on a 'good' day, but always in the middle of the day which makes for incredibly unproductive, stupid days. I'm desperate to go outside, just get some fresh air, get dressed, have some coffee or a muffin or something. But if I wake up at 2pm and then don't sleep for the night, by the time it's late enough in the morning to go out, I've been awake for 18 hours!

It's also ridiculously hard looking after Bug in this state. We're living in bed at the moment, which sucks, I know, but I just don't have it in me to get up. Yesterday I called Mr A crying and he had to leave work because I couldn't cope with her. She was just screaming and screaming and I hadn't had any pain killers in over 36hrs and had woken up in this funk. I just couldn't make her stop and she was driving me to desperation and I wanted to jump out the window.
It's now 4:30am and I'm trying to figure out if I can cope with today. My body is exhausted but I can't sleep. I also can't get up or go out, or function. I'm just a zombie. But an angry one. With a toddler. Toddlers are not conducive to rest.

I'm going to load up an episode of Greys Anatomy, go get some fruit tea, and try to beat myself into sleepy submission.

Sunday, 10 October 2010

Let's just be real for a second here.

"Please pick up the plasters, pregnancy tests, pills etc that Bug has taken out of the drawers and put them back properly, like I ask you to EVERY TIME."

The 'every time' is underlined, violently, four times. I had originally started picking them up myself, but with every single plaster I put back in the box my rage increased exponentially until I yanked them all out and threw them up in the air, watched them land on the bathroom floor.

Mr A is a wonderful husband. I'll never deny that. But sometimes? He's a thoughtless fuckwit too. People can be both, I've found. Wonderful and fuckwitted, all rolled into one. It's rather annoying.

This week has been SUPERBUSY. On Monday we have Sushi Monday's, a new family tradition in the making. It means being out all day and lots of walking, but also enough sitting to make it good for me without killing me. I didn't sleep on Tuesday night, which led to me going to bed at 6pm on Wednesday night after a day of running errands, hoping that I could re-set my body clock. Except my body-clock is a dumbass, and woke me up at 3am. The Beast woke up at 4am and we ended up spending the whole day at an old school friend's house. She's expecting her first baby and it felt good to be useful to someone. But useful or not, it was a full day of activity, and I was zonked out at 10pm. I woke up at a rather alarming 2pm on Friday, completely burned out, shaking with soreness and tiredness and broken-ness. I didn't have the spoons to go and pick up my prescription, but luckily I knew I had just enough to last me until Monday morning, if I was careful. However, this is where Mr A and his Fuckwittery began surfacing. He came home, collected the baby from upstairs, where we'd been all day save for nappy changes and scavenging expeditions (it was strictly grab-it-and-run, I didn't have the energy for even so much as a slice of toast) and went to go make dinner. I'd asked for steamed kale, he'd decided to make tortillas, I couldn't be bothered to fight him, I didn't have it in me. Five minutes later he tells me the chicken he was planning on using had gone off. Already not in an eating-mood, this just made me feel sick. I told him to forget it. Did he? No. He bloody did not.
He came upstairs and asked what I'd eaten, in an annoying, patronising way. So irritated, tired, ache-y me said 'Food.' Then he pushed and pushed and the more he pushed the less I wanted to tell him, because WTF. I can't be trusted to decide whether or not I've eaten enough and/or whether I'm actually hungry, after TWO YEARS of being A-OK about food? AM I SIX? So he started a 'discussion' about how he's so worried about me, because I'm not eating and spending all my time in bed and blah fucking blah. I pointed out that I have been up and about and VERY active EVERY SINGLE OTHER DAY THIS WEEK, that I was awake from 3am until 10pm the day before and out from 9:30am until 5:30pm and that ONE day in bed is not all the fucking time, then I reminded him that I was sick last month and I am still recovering, that I don't bounce back from illness at the drop of a hat and that this is nowhere near as bad as earlier this year when I was bed-ridden for most of six weeks. I told him over and over that there was NOTHING to worry about but that stressing me out over food was not exactly the best way to get me to eat, or to talk to him properly.

I am so ANGRY. How much longer am I going to be subjected to random inquisitions on my food intake? At what point have I proved that I'm capable of deciding for myself whether or not my intake is ok?

And it doesn't even stop there. I didn't manage to sleep last night, fighting with him leaves me feeling sick and angry and too awake, and I was watching 'The Road' and it took me four and a half hours because I kept being upset and having to stop. By the time he left this morning I was feeling like someone had backed over me with a truck and then scraped me off the road, flipped me over, and had another go. I was so tired, and Beast woke up at 4 again, and I kept jokingly begging him to take her to work with him but I was only half joking, there was too much of the begging and not enough of the joking, and watching him walk out the door gave me little flutters of panic. By 7am I'd managed to feed her back to sleep, so I sent him a text asking him to phone me at about 12 to wake me up, so I could try and get some sleep without fucking up my body clock too badly and losing a whole day of productive possibilities.
At 10:40, three hours after I finally managed to force my body to submit to sleep, he phones. I ask him what the fuck part of '12' means twenty to 11 to him, but he just says they're getting busy. I hang up on him. I set my alarm clock for 12, change the baby, force a painkiller down, and cry myself to sleep, thankful that for once Beast seems willing to oblige with my crazy sleep schedule.
When I surface from sleep, I know something is wrong. Very wrong. The room feels wrong. I check the time and immediately exactly how wrong everything is is clear. It's 4:30pm. I had forgotten to change my alarm setting from AM to PM, so my alarm hadn't gone off. I have wasted a whole day. Two whole days in a row. Opportunities for productivity, for fresh air, for a chance to stretch my limbs. By this point I'm drunk on a horrific mixture of too much broken sleep, and exhaustion, I haven't taken my painkillers nearly regularly enough for them to be any kind of effective, and my entire body is shaking with pain and inactivity and lack of nutrients. All of which could have been avoided if he had just bloody well woken me up when I asked him to, not an hour and a half before. Even an hour late would have been better. I would have had enough sleep, uninterrupted, and still had time in my day to Do Things.

All of this goes some way towards explaining why, when normally I would have just tidied up the mess he lets the baby make, bitten my lip and mentally reminded myself to ask him again to clean up after her when he lets her fuck up the bathroom, when normally I would have just dealt with it myself (like the four dirty nappies he left on the living room floor that I put in the bin despite my complete fucked-up-ness this morning), I instead chose to write a stupid note that he may not even read and will probably not understand the implications of. This week has taken it out of me. This week I am more depressed (in a fundamental, state-of-mind kind of way, rather than an immediate, want-to-die, kind of way) than I have been in a while. I am trying my tired, bony ass off. I am Making Plans and Looking Forward and Living In The Now but sometimes The Now is shit and I'm tired and I just want more help instead of more articles about how soon, we're going to lose some of our income. Sometimes I want to cry in my mothers kitchen while she makes french vanilla coffee for me and cuts me some watermelon and tells me that if I ever need her, she's there. Even though she's not there, she's there, and there is 10 thousand miles away and that is too far. And 2012, the year we move out to be 10 feet away from her is too far too.

At times like these, when I am overwhelmed by how badly I'm coping with my life as it is, when all I see when I look at myself is cheekbones and too-thin arms and ribs and spine and things I wanted so much when I was 16 but which just make me sad now, I don't have it in me to pretend that tiny things that Mr A does, like forgetting to throw nappies away, or not tidying up when he lets the baby destroy something, or complaining that he wants to spend time with me and then immediately falling asleep once I've stopped doing what I was doing, don't make me so so so angry that I want to beat him in the face with a pair of his own dirty boxershorts. I don't have it in me to pretend that I am calm and serene and pondersome and zen. I am not. I am as un-zen as it is possible to get without becoming zen again. I am fuming. And I don't even care anymore that it's not fair for me to be fuming, that he works hard and that I expect too much from him. Because it's not fair on ME, either. Everyone and everything expects too much from me. I expect too much from a body that is disintegrating so fast it scares me. Doctor's expect too much from me when they send me away empty handed and tell me that I'm fine and to get on with it myself. My daughter expects too much from me when no matter how much of myself I give, she wants more. No matter how many episodes of Pocoyo we watch together, it's not enough, or it's not right. No matter how many milk feeds she has a day, I seem to spend half my time trying to get her to go longer between them. No matter how much I feel like absolute, flaming shit for not being a productive member of society, the press and the government wants me to feel worse.

My mother is always telling me to change my perspective, that things will be bad if I think they are bad. She expects too much of me if she expects me to spend every day skipping and laughing with the joys of sunshine and wonder, when every day I wake up overwhelmed by more greyness and pain and fog than the day before. I wish I was One Of Those People. One of those people who even on their death-beds keeps up the cheer, has a smile and a joke and a laugh and shoots beams of sunshine out of their eyes, one of the Criptastic. I wish I was ENabled and not DISabled. I wish I was Inspirational. I wish a was a Trooper. But I'm just fucking not, ok? The best I can do is pick myself up, dust myself off, be honest about the fact that this is shit and I hate it, and try to Look Forward and Make Plans for things that are not so shit, and that I don't hate so much. I try to participate in online life to make up for my lack of participation in flesh-life, because the people who are making up the network of blogs I read regularly understand so much better than the people who see me wince in pain, see me stumble, see my joints come out of place. Somehow, these people who have never seen me cry in pain and frustration understand so much better than the man who placed a ring on my finger two and a half years ago and vowed to take care of me in sickness and in health.

And that sucks.

Wednesday, 6 October 2010

One step forward, one hasty shuffle back.

So further to my post last night about the pictures on facebook, so far I've had a couple of shocked responses, some sympathy from a fellow Bendy Babe (HOLLA E!) and a whole lot of 'LOL I CAN DO THIS TOO!!!!' Well how wonderful for you. Come back to me when it stops becoming something to lol about and becames achingly, crippingly, disablingly painful and stops you living a normal life. Until then just please please please go fuck off and stop LOLING at me.

I've had a headache for three days and I'm in SUCH a bad mood. Taking my painkillers every 3 hours doesn't help, forgetting to take them is more common because my mind is just...elsewhere. I nearly dropped the baby five feet today because everything siezed up as I was climbing out of bed and I was so scared because if Mr A hadn't been there I would have been stuck instead of just calling for him to come and save me while I used up more spoons than I had to spare holding myself perfectly still without any arms to balance me.

I'm not sleeping, and it's going to fuck with me. But right now I'm stuck in this place where I can't go to sleep but I can't wake up either. My brain thinks I'm depressed. My body is all 'FUCK YOU EVERYTHING IS FINE GODDAMNIT.' and neither of them is really right. I'm somewhere inbetween a full blown depressive episode and just being generally run-down. I'm still hovering just above 90lbs after my stomach flu last month and my body can't really handle the stress of ANYTHING. But I don't have the option of not coping. I don't have the option of staying in bed for a full week to recover. I'm using up at least 500 calories a day breastfeeding and I know I'm not taking in nearly enough to counter that. But I also don't have the option of not-breastfeeding. The sheer effort involved in weaning her right now is beyond me. If I can't get dressed in the morning or manage more than one walk a week, I'm not going to be able to stay up all night fighting to get disgusting-tasting prescription milk into a violent toddler and then get up and spend the whole day doing the same thing while she cries and screams and paws at me and worst of all, she just won't even understand why. Knowing I'm causing her distress and that I could just stop it if I wanted would be impossible.


I have a post brewing in my head about post-natal depression and bonding and baby stuff, but as with all of the PND stuff, it's hard for me to write down and put into words. It scares me to admit to things that our society finds unnatural or wrong. There have honestly been times when I've felt worse than a child abuser because of things that people have said about feelings or thoughts I've had. Less than human. There have been nights when I've wanted to just get up and walk away forever because of how people think. I know I shouldn't, but I let it get inside my head and once it's in there it festers and rots and eats at everything good. I have a few good friends who tell me I'm doing a good job, and Mr A is filled with admiration, but as petulant, whiny, and selfish as it sounds, it's not enough. There isn't enough good people throw at me to fill in the black void of hate, insecurity, and terror that seethes just below the surface of me.

Tuesday, 5 October 2010

Step one.

Tonight I took the first step in being openly, publically, and unanonymously vocal about myself as a disabled person. I asked Mr A to take some pictures of me in various hypermobile escapades, and I uploaded them to facebook for everyone to see. I'll write a note explaining what Hypermobility means for me soon, but for now, the pictures are enough.

Immeditately, I was overcome with the desire to delete them. I thought 'No one will care, people will roll their eyes, wonder what the big deal is, confirm that there's nothing wrong with me, that everyone can do this.' Mr A didn't help much by being generally sleepy and saying 'Yeah, I can do that' when I bloody know he can't.
I'm scared, and that's ridiculous. to be disabled in our society is to be vulnerable. If you asked people if they would kick a disabled person simply because they were disabled, you'd be met with horror and vehement denial. Oh no no no! We would PROTECT the vulnerable! We would HELP! No, no they bloody fucking wouldn't. They'd bitch and moan about whether or not you were really disabled, accuse you of lying, kick you for good measure, then when you provide medical proof of disability, mutter 'well, doctors will label anyone disabled these days, just to get them out of their office. Half these bloody diseases and syndromes are made up anyway.' As a disabled person, you can't fucking win. To be 'allowed' to be disabled you have to be a blind, deaf, quadruple amputee with cancer. Otherwise you are FAKING and MALINGERING and should JUST GO BACK TO WORK.

So far I've had one comment, on a picture of my elbows bending 'backwards'. It was 'Mine do that too!' so not negative. I just hope that maybe by seeing the degree to which everything in my body is fucked, people can understand why I am the way I am sometimes.

Saturday, 2 October 2010

Thirteen. Thirteen. Fifteen. Eighteen.

The ages of the four boys who committed suicide in the last week because they were bullied for being gay.

Lets all take a minute to just absorb that, ok?
What were you doing when you were 13? I was still secretly playing with dolls in my closet. I hadn't hit puberty yet. I was a 4'11 baby, I loved reading Harry Potter and watching cartoons. I haven't yet held hands with a boy.

Fifteen: This year I will have my first kiss. I will rebel against my parents. I will go to my first rock concert, and afterwards, I will jump into a fountain with a bunch of other kids. I perform on stage at the Globe Theatre.

Eighteen: I haven't yet met the boy I will spend the rest of my life with. I will try sushi for the first time. I will get my first job. I well get accepted into university. My wisdom teeth haven't grown in yet. I am still hopelessly young.

These are our babies. None of these boys will grow up, grow older. None of them will move into their own places, experience life as an adult. None of them will know the joy of getting married or bringing up children. None of them will fulfill a lifetime of small and large achievements. None of them will hug their mothers on christmas day, or open another birthday present. None of them will travel the world. None of them was old enough to drink.

These are our babies. They were somebodies babies. Now they are sitting in some refrigerated container, waiting to be buried, or cremated. Waiting for the last suit they will ever wear, the last pair of shoes their parents will ever buy them, most of them before they've even grown to their full size. Tiny boys in tiny boxes, hounded to the point of taking their own lives because some fucking prick decided that his desire to taunt, tease, ridicule and humiliate over-rode these boys' right to LIVE. To EXIST.

I can't even understand this.

Wednesday, 29 September 2010

Dancing with myself

So. Did you know I used to dance? No? Well, I did. I danced a lot. I was in gymnastics since before I have memories. Then I dabbled in a bit of ballet and then I joined a drummajorette team which is hard to explain, because where I come from (did you know I'm not actually originally British? No? Now you do!) its a Big Fucking Deal. Like, national and international championship big. Like almost as big as Cheerleading is in America. Which is kind of how I explain Drummajorettes to English people. It's like Chearleading, except with 5 foot tall flags. And I was 4'9 at the time. It's 7 minutes of precision routine wearing a ridiculous uniform. You're performing a mix of marching, dance and propwork on a field with 30-50 other girls, some of whom are throwing mace's (a mace is like a baton, but hardcore. Like if a baton is Adam Lambert a mace is Ozzy Osbourne) 15 feet in the air. You have to be split-second in-sync with every single other girl on that field. You have to be PERFECTLY in time with your music or the whole routine looks unbelievably shit. I practised every single day for years, and I was at official squad practise 5 days a week, with competitions almost every single week, on top of going to school, on top of school sports teams I was also a member of, including the netball team in which I was an inter-school competitor. You have to be dedicated, and determined, and strong. You have to be really strong...we're talking about tiny 9yr old girls carrying 5 or 6lbs of metal and fabric onto a field while marching in time and formation and keeping on-choreography.

It was fucking hard.

And I loved it more than I can even explain to you. I loved it so much that when I watched this video I cried. It was the first point in my life where I had a group of friends. And when I won a place on my team's elite Indoor squad, it was the first point in my life where I felt like I was good at something. Where I felt important, or valued, or proud of myself. The indoor side of drummies was, as it's name would suggest, competed in indoors. It was much more like the group dance-acts you see on TV talent shows now...kind of a mix of chearleading and gymnastics and street dance. It was my life and I loved it.

When I moved to England, there was suddenly no more dancing. I tried to keep up my routines and my dancing by practising at home, but my parents said they would no longer be paying for me to attend classes like they did back home. Without any sort of formal structure, dancing slowly drained out of my life. Sports did, too. In England, sports isn't really valued at a state-school level. Not in girls. My brother would later join his school's basketball team and help win competitions within London, but for me, there was no more moving. There was no more belonging. There was just no more. The eating disorder that had been brewing for a couple of years exploded and took over my life; the more I lost the order, structure, and control that dance and sport had given me, the more I tried to claw it back, take it out on the body that I now felt was useless, surplus to requirements. I hated it. I called it 'the body'. I refused to consider it a part of me. I refused to care about it. What did I care if it was hungry? What did I care if it was weak? What did I care if it collapsed? What did I care if it didn't work right? I didn't. It couldn't do what I wanted it to so I would punish it mercilessly. I would starve it, cut it, beat it. Let others use it. It was no use to me. It was a hideous thing that trapped me, held me down. It was slow and stupid. It was ugly.

When I was older and wiser and better, I decided to take up dance again. I enquired about beginners ballet classes and joined my university's cheerleading team. But weeks later I discovered I was pregnant. And we all know what happened after that.

I love to watch dance videoes and movies now. I have come to grips with the fact that I will never really dance again. I have come to terms with the fact that my body is sick and broken. Of course it makes me sad. Of course it makes me angry. Of course I would love if dancing was possible for me without pain, or a very real risk of injury (fun fact: I pulled my wrist out picking up a fork the other day. Tell me how to do a pirouette without breaking something. Go on.) and people think I'm being negative when I say that, but I'm not. I'm being realistic, and I'm trying to come to terms with dancing not being part of my life anymore, or ever again. I don't want to 'think positively', as my mother puts it, when thinking positively means giving me false hope. I want to think realistically, and rather than think 'hey, maybe one day I'll dance again!' I want to think 'Hey, maybe one day I'll go a whole week without needing a 'bed-day'!' or even 'hey, maybe one day I'll run to the beach with my daughter.' Now the role that dance and gymnastics play in my life is strictly from-afar. When I watch dance video's, it does give me hope, but not that I could dance again. It gives me hope when my shoulders start twitching, when my hips move, when my foot taps. It gives me hope that I'm really coming to terms with what my condition means for me, and that I can still be positive and still enjoy the memories of my past, not look back on them with bitterness and anger like I used to. It gives me hope that my body and I are one again, a co-operating unit.

The Body did one thing right in it's entire life. It turned out to be the last right thing it would ever do, but do you know what? Looking at her sleeping next to me now, with her tiny red baby-curls and Hello Kitty pyjama's? Kind of makes up for all the shit we pulled on each other all those years ago.

Truce, Body. Truce.

Thursday, 23 September 2010

Defining yourself as a blogger

Defining myself as a blogger is something I struggle with. To be honest, I struggle with the label 'blogger' at all, I don't feel like keeping a blog and being 'a blogger' are the same thing. It's like the difference between keeping a diary and writing an autobiography. So when it comes to the question 'What type of blogger am I?' I just...don't know.

Am I a Mommy Blogger? Well, I'm a mommy. And I blog about my kid sometimes. In fact when I started out I just seemed to blog about being a mom. But I don't feel like it's enough a driving force in my blog to really define me.

Am I a Breastfeeding Blogger? Not really, although I have blogged about breastfeeding and how that works when you're dealing with other problems.

Am I a Disability Blogger? I'm disabled, and I blog quite a lot, quite consistently about my disability. But I don't actually blog about being a Disabled Person. I blog about being Arienette Who Also Has A Disability. I suspect that those of us with disabilities will understand the difference. There's no activism drive behind my blog, I'm not trying to spread a message (except maybe 'You're not alone! You're normal!') or change anyone's minds. If minds were changed that would be nice, but it's not my driving force. I don't blog about the disabled community or the threats we face, I leave that to more experienced, articulate bloggers with the sort of audience that reaches more people than I can. Occasionally I'll blog about the sort of problems I face as a disabled mother, but I still don't feel like I'm 'saying anything' here.

Am I a Humour Blogger? Er. No. Much as I would love to be, I will never be Sara, of Sara Swear A Lot. I may do the odd post where I try to be funny but I'm not very good at it, and I usually go back to being tiring and pondersome the next time.

Am I a Feminist Blogger? Definitely not, although feminist issues do get touched on now and again (there's a post in the making which talks a lot more about feminist issues and myself as a woman and what that means for me and has meant for me).

It seems to me like a lot of the community in blogging comes from having a somewhat narrower description than I do. I have friends from a couple of communities but the blogs I follow are strangely eclectic in their subjects, and I don't feel like any of those circles are really where I'm at. So I drift from one to another and I dip my toes in and then I come back to my blog and I feel like I'm trying to catch fish with a torn net. I have no focus for my blog but PICKING one feels disingenuous. It feels like I'm trying to force myself to be something for the sake of being able to call myself 'Arienette, Disability Blogger' or whatever. And that kind of defeats the purpose, doesn't it?

Sunday, 19 September 2010

A message to Achelois

You left a comment on my earlier post that has disappeared, but I received it in my e-mail and have read it. I'd love to have a chat with you about some of the things you mentioned, if that's alright, but your profile and blog have no e-mail address and I can't reply directly through e-mail to the comment. If it's alright, could you e-mail me at

For the rest of you, you should know that she rocks. Her comment left me with tears in my eyes and her blog is one of the ones I enjoy quietly reading through. Go say hello to her and give her a hug, she needs one right now.

Saturday, 18 September 2010

Frustration, hissy fits, and hypochondria.

I'm frustrated. Really really frustrated. Logically, there is no reason for this frustration. I should feel good, I should feel happy. I have a diagnosis, I have a referral. A small voice in my head keeps saying 'Come on now, what more do you want?' I listlessly scroll through the ARC webpage on Joint Hypermobility, clicking, reading half a page and then pushing away in frustration. The more and more I read, the more I look through pages, the more I think, the more I believe and simultaneously disbelieve, that I've been under-diagnosed. Part of me is screaming 'THIS CAN'T BE IT. THERE'S SOMETHING MORE WRONG HERE.' and part of me is muttering 'Oh shut up, please just shut up, you have your fucking diagnosis now please please just get on with your life.'

I have a 'modest' Beighton Score of 5, possibly 7 but I can't tell how far 'back' your knees are supposed to bend to 'count' [Edit: I got Mr A to have a look at the charts and then my legs, he says my knees definitely look like the ones in the picture. He also says my elbow is way more severe than the pictures of 'backwards' elbows. So that's a solid 7, meaning I only fail the pinky test!]. I am in pain almost all day, every day. I am always exhausted, I have extreme trouble with sleeping. I can't get off to sleep and then I can't wake up. I can't keep my weight up no matter what I do. I have had mysterious heart problems for years now, wherein my heart will start having palpitations or 'dips' or my chest will hurt or I'll have what feels like a heart attack. These are repeatedly dismissed either as panic attacks or without any answer. I pass the ECG, the nurse/Dr shrugs their shoulders, I am ushered out of A&E with no answers, still terrified I'm dying. This has become so bad that even when these 'attacks' are incredibly painful and even temporarily affect my vision, I no longer seek medical help.

I show SO MANY of the characteristics for people with joint hypermobility related syndromes. Even a quick browse through a list shows that. Lets have a look (I've italicised the applicable criteria):

Marfan Syndrome:

People with Marfan syndrome tend to have several physical characteristics, including:

  • being tall (I'm almost 5'7 and would have been taller had I not spent my teen years starving myself.)
  • being slim (I have never in my life been a 'normal' weight. I have always been extremely slim)
  • having long, thin arms and legs
  • having loose and very flexible joints
Other physical signs of Marfan syndrome can include:
  • small bottom jaw
  • high, arched palate (roof of the mouth)
  • deep-set eyes
  • flat feet
  • breastbone (sternum) that either protrudes outward or caves inward
  • crowded teeth
Many people with Marfan Syndrome also have vision problems. I'm short-sighted and my eyes are quite weird. They re-adjust and unfocus and re-focus much more often than is normal or necessary. This in itself doesn't necessarily mean anything but chucked in with everything else it feels significant. While I was in my appointment Dr Rheum kept asking if I had lens dislocations. He came back to it a couple of times, seeming to mull over it, which makes me believe he saw Marfan Syndrome as a possibility.

Then we have Ehlers Danlos Syndrome, which is what I was convinced I had up until recently.

Ehlers Danlos Syndrome:
  • skin problems
  • soft velvet-like skin
  • fragile skin that bruises or tears easily
  • stretchy rubber band-like skin
  • easy or severe bruising
  • poor and slow wound healing (usually taking weeks to months to heal)
  • small harmless bumps under the skin
  • joint problems
  • loose unstable joints causing frequent dislocations usually occurring in the shoulders, knees, hips, collar bone or jaw (see figure 1)
  • double jointedness (hyper extensible joints), extreme in some cases
  • eye problems
  • nearsightedness, occasionally extreme
That's a lot of italics. But the problem is, I could probably find a lot of italics on a list of symptoms for LOTS of problems that I genuinely DON'T have. Where do I draw the line between a logical step and an imaginative leap? I read two 'bendy-blogs' (Veronica over at Sleepless Nights and Bendy Girl at Benefit Scrounging Scum, both have Ehlers-Danlos) and SO MUCH of what they say and experience feels so close to my life. In e-mails with Veronica we've both felt that my problem extends beyond 'just being a bit flexible' but I think we've also both felt a bit helpless. She knows firsthand the issue with misdiagnosis. But again, I until I properly looked into EDS I was 100% sure I had Chronic Fatigue Syndrome! Admittedly the list of symptoms is almost identical to a range of joint hypermobility related syndromes + depression, which I had, but still. If I'd been a doctor I would have diagnosed myself with it on the spot. Then I read about EDS and suddenly I think I may have it. Then I read about Marfan and I'm all 'OMG, I'm tall! And thin! and my eyes hurt! I have Marfan Syndrome!' I'm my own worst enemy, the more convinced I become that I'm sick, the more convinced I become that I'm a massive hypochondriac. How do I shut this cycle down and just move in a straight line, preferably forward?

At the base of it all, this has been a horrific year. From January when I started this blog, when I was first realising that something just wasn't right and that maybe it wasn't all in my head, to my rapidly degenerating physical health, to the highs of getting a referral to a Rheumatologist and the lows of waiting to see one, to the emotional confusion of that appointment itself.

Today I watched my 14month old do the splits on a shop floor while the assistant looked on in wonder. "Wow, is she supposed to be able to do that?" she asked, clearly shocked. My heart lurched and I felt sick. I have to find out what's wrong with me so that when the time comes, Bug doesn't have to live in pain while waiting to find out what's wrong with her. As soon as she's old enough I'll be Beighton-Scoring her. She's not living like this, and she's not living with the thought that she must just be fucking crazy. She's always going to be able to say 'Actually, it really does hurt, it hurts because I have [whatever], which means [whatever].' She's never going to endure having her spoons snatched away from her by people who are forcing her to do things because she can't explain to them what's wrong in language they accept. She's never going to leave a doctors office crying and humiliated because some patronising prick with a PhD has told her that her pain is all in her head. She's never going to consider killing herself because she believes the alternative is to live in pain and the limbo of being labelled a hypochondriac forever, with all the lack of sympathy, empathy, and compassion that comes along with that. It may be too late for me, I may have done all the damage already, but she will go through the same struggles over my cold, dead body.

Thursday, 16 September 2010

There's diagnosis and then there's diag-no-help-whatsoever.

Just a short one (hopefully). Mr A is on annual leave from work until the beginning of next month, so I'm not around very much right now.

First, some amazing news! Mr A and I had discussed getting me a new laptop for a little while now. My old one had been dying for ages, then finally about 6 months ago died completely. Since then I've been using a teeny tiny 10" netbook which has been giving me major back, neck, eye, and finger strain. It also doesn't stream video or play DVD's or music or really do any of the things I relied on my old laptop to do. I also went on a self-imposed clothes-buying-ban earlier this year, in order to teach myself self restraint and hopefully to appreciate my existing (and fucking enormous) wardrobe a bit better. I've been doing really well, have not bought a single item of clothing (not including underwear, which is an essential) since I made the challenge. It's also been a tough year for me. I don't talk about my depression much anymore, but coming out of it has been an ongoing battle, and I don't win every day. But slowly slowly, bit by bit, I'm learning to treat myself well, and I'm learning to love myself and my baby. No. I'm learning that I DO love my baby. And I'm learning that I'm human, that no one expects the things from me that I think they do, that no one WANTS me to work myself into the ground, that no one thinks I deserve to be punished for the rest of my life for not living up to the impossibly high standards I set myself. My self-flagellation knows no bounds, really. But I'm learning to ease up on myself with the help of Mr A. I'm learning that when I inevitably fail because I've set myself yet another Promethean task, that actually, it's ok. I don't need to weep and gnash and beat my back with willow branches. But I'm not quite there with the loving-thy-self thing yet. Which is why when Mr A said he thought we should get me a laptop and because of all the things I mentioned above, then he said I could spend £500 on it (I had originally set the almost impossibly low limit of £350, forced up from £300 by the lack of ANYTHING in my original price range) and then said I could buy the lusciously pretty pink one I'd stroked and cooed at the day before in PC World, I told him 'No, nevermind, I don't want one. I don't deserve it.'

Luckily for me, I have a husband who knows I'm an idiot and every now and again he does things for my good. He came home from being sent out to fetch some vegetables with a laptop under his arm. Not just any laptop, but a beautiful pale pink top-of-my-price-limit laptop with enormous keys and a DVD drive and the ability to stream video's and it's perfect and I love it and I nearly dropped the pan of potatoes I was cooking and then I cried a lot. And then he panicked and threatened to take it back if I didn't stop being so bloody silly. And then I TOLD him to take it back, and he refused. So right now I'm typing on my lovely new laptop and it is lovely and all the keys work and I can use it without my hands cramping up and I love it and I could cry.

Secondly, good news and bad news. The good news? I saw the Rheumatologist and I have an official acknowledgement of hypermobility. The bad news? The appointment didn't quite go as well as I hoped it would. I forgot loads of stuff and as a consequence I don't think I really gave him a great picture of my condition. Like he kept asking about my hands and we'd just been talking about bendiness so I said my hands were fine, completely forgetting that while my hands aren't actually very bendy, that's kind of EXACTLY the problem. They cramp up incredibly fast any time I have to hold them in any position, especially around an object, for example while peeling veggies or writing. I also don't think I did justice to the constant exhaustion or what he referred to as 'clunking' and I refer to as all-my-god-damn-limbs-going-where-they're-not-supposed-to. He asked if I dislocate, and because I don't 'officially' dislocate (although sometimes I really wonder how I'd know. Sometimes my limbs do things that make me feel ill to look at, and it hurts, but 90% of the time I don't have to physically push them back in.) I had to say no, and I felt like once he heard that he kind of stopped listening. I know I'm nowhere close to the worst case of hypermobility he's seen, but I can click both hips in and out of their sockets like a light switch, for gods sake, and walking out of there with a bad 80's A.R.C leaflet and my name on the end of a 6 month long physio waiting list (I won't live in the area in 6 months time, by the way. Awesome stuff, no?) felt like a massive, massive disappointment.

On one hand, I feel validated. There's a bit in the leaflet that says 'You're not a hypochondriac. You're not making this up. Don't believe that.' and it's so helpful to read. To hear. to have a doctor go 'Yes, ok, there's something wrong, let's work on managing it.' is amazing. But at the same time he didn't address any sort of alternative pain management (except to tell me to take ibuprofen with my co-dydramol to help with swelling) and he just seemed to want me out of his office as quickly as possible. I know I should be grateful but I felt let down. I wanted answers. I don't know if I was just being unrealistic but I wanted something more than what I already knew and a joke of a referral for physio.

There's also a tiny part of me that died when he said 'No, this won't go away, it won't ever get better. You just have to manage it now.' I think until then and possibly still even a bit now, in my heart of hearts I hoped there'd be some magical House moment and he'd figure out I had some rare but entirely curable problem and I needed to take 3 spoons of grape juice an hour and then clap twice and I'd be cured and I'd go back to living like a normal human being who isn't already approaching her sell-by-date. But there was no House moment. I'm broken. I'm going to stay broken. From now until I die it's just a matter of keeping me patched up however we can.

In the last of the news I saw the dental surgeon. I have serious dental problem. Recurring infection in my bottom right wisdom tooth has caused bone loss around the tooth, and both the bottom right and bottom left wisdom teeth will need to be removed. I'm awaiting a call for them to schedule the surgery, I'm just praying they can schedule it for a monday. Mr A works Thursday-Sunday and is off work Monday-Wednesday and not having anyone else nearby means that he has to be the ones who looks after me and drives me home and looks after the kiddo. The longer I have to recover the better, but if they schedule it for a Wednesday it will be disastrous. I can barely take care of us both under normal circumstances. The day after surgery it'll be impossible.

Oh life.

Saturday, 11 September 2010

House of the Rising Temperature

I am absent. I came down with the worst stomach bug I've ever had in my life on Wednesday, Mr A had to take two days off work to look after me except that he got sick so instead of looking after me he fell asleep a lot and then didn't eat the food I dragged myself out of bed to make us. Because it was burnt. Because I was trying not to pass out while I cooked.

So I have stuff to say, but I will say it after I'm feeling a bit better. I haven't had a proper meal since Tuesday and I've lost 4lbs, which is fucking annoying and made me cry, because for the first time in months I was over 93lbs. I am so weak and tired, even though I've been over the worst since Wednesday night (when we had to call an ambulance because I passed out, hit my head and was convulsing on the floor. Good times.) I'm still so out of it and haven't recovered myself properly.

Somebody wrote on my facebook status 'You get sick so often!' and I felt taken aback, then defensive, then like screaming. Rightly or wrongly, I read it as 'Shut up, you attention seeking bint, and take some vitamins.' Yes, I do get sick so often, because my body is incapable of taking care of itself. Thanks for the unnecessary reminder. Will you let George Osbourne know? Only he seems to think that I don't spend every day of my life in pain, with the intermittent day of vomiting so hard and so often that I shit myself. He seems to think I just need a good kick up the bum to get me back out into the workforce.

Isn't it good that there are other people around to tell me about my life? I'd get it all wrong otherwise, wouldn't I?

Friday, 3 September 2010

Confusion and superhecticbusy-ness

First of all, I have FOLLOWERS, y'all. Actual people who like, follow my blog. I have two of them. Don't get me wrong, I'm incredibly grateful that anyone feels I'm worth reading, but I won't pretend it doesn't surprise me. I mean, seriously guys. Why?? I'm not that interesting! I spend all my time rambling about painkillers and babies! Also, I consistently forget to spellcheck my posts before posting them!

We've been superhecticbusy recently. There's been a lot of stress. First of all, we had a dairy challenge for Beast. Basically what this entails is exploring the severity of a child's allergy by bit-by-bit exposure and gauging the reaction. There are seven steps, the first being rubbing a drop of milk onto the child's skin, then a drop of milk on their lip, then 0.5ml of milk in 10ml of water, then on and on leading up to a full milk feed, over the course of about 5 hours. We were due to start at 9:30. We arrived on time and were shown into a children's ward. Immediately, we were nervous. We'd been expecting some sort of medical into a side room for the tests and then out into a playroom or something while we waited for a reaction. So sitting in a ward, with cots and emergency buttons and oxygen made me feel a bit sick. There was nothing for her to do except sit in her cot and play with toys or sit in the small playroom and play with toys. I put one of the sides of the cot down completely and sat on the cot with her to make it seem less scary for all of us, but it was hard. There were sick kids all around, a baby not much older than Beast, with an IV hooked up to her foot, suffering with an unknown infection, a boy toddling around with his arm in a sling, his little face white and pinched. I'm not afraid of hospitals, as such, but I don't like being in one with my young baby. No parent wants to see their child in hospital, no matter how non-emergency the situation is.
In the end, after making us wait until 11 with no explanation as to the delay, she started reacting to the first stage of the testing, but they pushed us through to stage 3 and tried to push to stage 4 before we put our foot down and said we were taking her home. We go back in 6 months to repeat the whole ordeal and hopefully by then she'll be allergy-free.

We're having a load of problems with our Housing Benefit claim. First of all they took 4 months to approve our backdated claim, citing that we should have just claimed earlier, ignoring that Mr A works full-time and that I can't really make it down to the office and sit there for a few hours waiting for someone to stamp a few bits of paper. I don't know why, but the air-conditioning in that building does something weird to me. Every time I go there I get dizzy and almost pass out. I actually get the same thing in Asda. It's really strange.
Anyway, so we finally got approved for the backdated payment for a SIGNIFICANT amount of money, and then we get a letter saying, word for word, 'We were going to pay you on Sept 6th but now we've stopped your whole claim'. Like, wtf. WTF. That is some cold shit. COLD. They've put a stop to not only the backdated payment, but also all our ongoing payments, until we supply PROOF that we're not behind on our rent, and a copy of our tenancy agreement. They already have a copy of the contract so I don't know WHY they need that again, but as far as proof of being paid-up with our rent, why couldn't they have made a to minute phonecall to our property managers? Surely that would have cost less time and money than the process of stopping the entire claim, sending out separate letters and then re-starting the claim, including re-paying the missed payments that will amount while they're faffing about? Not to mention that this is going to put a financial strain on us while we're not getting our payments. Yes, wah wah wah, poor me and my free money from the government. But seriously, they're creating work and expense for themselves for no reason. Aren't they supposed to be trying to save money? They seem to find a problem with our claim every 6 weeks. If I didn't know better I'd think they had nothing better to do.

We had our property inspection on Wednesday, so we've spent most of our spare time in the last few weeks trying to clean the place up and make it presentable. Housework falls by the wayside for me, because I never have the spare time and spare energy. I do what I can to stay on top of the laundry and nappies (diapers) and dishes, but almost everything else doesn't really get done. We have painted wooden stairs that need to be washed instead of just vacuumed, a small, cramped bathroom which would need to be emptied of about 10kg's of storage before I could clean it, a kitchen that is as devoid of useful storage space as it is over-burdened with space-swallowing-furniture, and we have a lot of 'stuff'. Just stuff that is accumulated over the years. I'm a terrible pack rat. Mr A has a box of colored pencils and random teenage-boy-desk-crap that despite NEITHER of us using or touching for over three years now, I cannot bear to throw away. I'm just convinced that one day, probably the very day after I throw it away, we will DESPERATELY need something in that box.
This all makes for a house that is pretty tough to clean, even if you are in full possession of your physical well being, and DON'T have a toddler who is never happier than when she's causing mayhem and won't allow you out of her sight for longer than two minutes.

Anyway, after next Friday Mr A is off work for 2 weeks, woo hoo! We're still trying to figure out if we want to take advantage of the time off and go away somewhere. We're thinking about a day in Paris, but it may prove to be a little expensive for just a day out, especially when Mr A isn't actually 'into' museums and the like. It'd be cheaper to stay in England or go to Ireland, but not quite as romantic or interesting. It may all be a moot point if the benefits don't get sorted out, as we may find ourselves short of money at the worst possible time. Bloody typical!

Thursday, 2 September 2010

It's never about what it's about.

I'm a bit sad today. I started an argument with Mr A over 'nothing'. I still don't really know what it was about, he didn't bite though, thank god, so all is good in the Borealis household. I'm just feeling insecure and confused.

I had my first afternoon away from A.B with a friend. It was less than three hours but it was great. I dressed nicely and A.B's Godmother and I had a fabby time wondering and chatting and not having to pause awkwardly every few minutes to chase the baby, or not being able to go into half the stores because of the pushchair.

We also had the property inspection today, which is why there's been quite from me recently, as I've been working my tiny, bony ass off trying to get the house in a presentable state. It's still not guest-ready, but at least it wasn't going to have the landlord cancelling our contract. However I did massively over-do it, and if it wasn't for the painkillers I wouldn't have made it.

Having painkillers is good and bad. Good, because I'm starting to live what is approaching a normal life. Bad because the more normal I feel, the more normal I assume I am. You know the mentally ill person who takes their meds, feels better, so decides they're cured and goes off their meds, only to go off the rails? That is LITERALLY me. I used to play chiken with my anti-depressants, forgetting to refill my prescription and going three days sans medication. This week I went through withdrawal and FUCK ME SIDEWAYS. That SUCKED. I wasn't even withdrawing off anything strong, but shit a brick. It was horrific. I never want to do that again, so despite my little cat-and-mouse game with myself (going from a pill every 3-4 hours to 2 pills in over 24) not going so wrong until very near the end, I will be refilling my prescriptions at the appropriate times from now on. Although there is still a voice in my head that goes 'You're just a massive, drug-addict hypochondriac. The painkillers 'work' because THERES NO PAIN. Co-dydramol? That's basically just paracetemol. You're MAKING IT UP.' And this is hard to deal with, because, guys? I actually kind of am a drug addict. Like, not in a terrible, heroin-mommy kind of way. I don't even drink. But I have an addictive personality and I have always always always preferred my state of mind to be altered. I don't even care what way it's altered. I just do not like being in my own headspace. It's uncomfortable for me. I've been taking substances to address the difference between where I am and where I want to be (read: anywhere else) since I was 12. A decade and a lot of bad experiences is a WHOLE LOT of time to think that everything is really just in your head. It doesn't help that my problems are not, as far as I can tell, quantifiable to me. As in, I'm not covered in postules. I'm not bleeding from my eyeballs. I look fine. Skinny and tired, but fine. I limp a little, but I look fine. Until and unless a Doctor does a magic test and tells me that I am Definitely and Completely Surely broken in some way, it doesn't matter what my body does...I'm just not going to believe it.

Thursday, 19 August 2010

Things Moms Aren't Supposed To Say

Sometimes I am sick of living a life wherein the best thing that happens to me all day is that the baby goes to sleep. Sometimes I want to be with all my old friends, all the people my age who are out having fun and not feeling crushed under a burden I wasn't prepared for.

Sometimes it's hard to be grateful for what I have when I feel like I had so much more 2 years ago. I know, I know. Every child is a blessing, every day your child wakes up and breathes is a miracle, but... She would have been just as much of a blessing in five years time when I'd finished figuring myself out.

Wednesday, 11 August 2010

Like Unwashed Windows

The funny thing about a long-term, pain-inflicting condition is that you don't fully realise or understand how much pain you're in or how much it affects your life until it's not there anymore.

Last night I got a reminder of what life is like when your whole body doesn't ache and stab mercilessly, all day every day. It was so bizarre, to not be in pain. My body felt numb, but it wasn't, it was just that the points of pain which have been identifying markers for so long weren't there.If I thought about it, I could still FEEL my hip, it just wasn't in pain. I could still FEEL my knee, it just wasn't in pain. Never having had any sort of severe condition, never having broken a bone or anything like that, I'd never experienced pain that lasted longer than a few weeks until suddenly I was in pain every day for 18 months.

Being out of pain for the first time was eye-opening. It was like I had been living in a house with unwashed windows for so long that I'd forgotten what the outside looked like. I'd forgotten that there was sun, that there was grass and trees and such beautiful things. Maybe I was just high, but for the first time since I was pregnant I could see things clearly. I could remember how I used to feel, before my whole life became about controlling and limiting my actions so I could control and limit my pain. My world had shrunk down so far, into what could be achieved without pain, or what had to be achieved and how much pain it would cause. You can't have a happy, fulfilling, and productive life if you focus it on pain. Or at least, I can't.

I have been such an unpleasant person over the last year-and-a-bit. I'm snappy, difficult, miserable, negative, impatient and withdrawn. I make an effort to be pleasant, cheerful, and delightful in public when I see people, but the truth is I almost never see people because it's just too hard. Most of the time I'm at home, alone, moody and brooding. There have been times when my world view is so clouded that I've had serious thoughts of suicide, and -more worryingly- divorce. It's so hard for me to see good in things when I feel bad all the time. Last night for the first time in ages I felt close to Mr A, properly close. Not just physically or out of gratefulness because he'd done something nice that day, but the sort of closeness that comes from feeling years worth of happy memories and good times. A stretching, reaching sort of closeness. A warm, safe feeling that wasn't interrupted by 'Ow, my hips' or 'Shit, my knees'. It was like someone opened the door of the room I was in and let in some light, and allowed me to see all the rooms I'd walked through before, with him.

The only real problem with this is that I'm becoming hyper-aware of when the pills wear off. The pain starts coming back, my mind becomes fuzzy and I get a feeling of slight panic. I lose concentration and start losing my train of thought. Not good, and I'm understanding more and more how people becoming addicted on pain medication. Before that, there's also a slight nausea that's near-constant, but it's worth it to feel this GOOD all the time.

Tuesday, 10 August 2010


This afternoon I was treated to a truly wonderous display of the way the NHS works when it really does work. As a dance of various components of our medical system, it wasn't a fine ballet, but there was a rythm and a beat and I wouldn't mind watching it again.

3:30: I go in to see my general practitioner. I explain that I am in pain, all the time, that my body doesn't do what it should, that my bits don't stay where they are put. I tell him I'm exhausted, all the time. After an initial confusion wherein he thinks I've already seen a specialist for this problem (no, I had an x-ray for a suspected broken foot in April) he makes an appointment for me with a rheumatologist for a day and time that suits me, as soon as the waiting list allows. When asked about pain, he asks how I've been treating it, then prescribes me stronger painkillers. When asked about the exhaustion, he says he doesnt think it's connected, and gives me an 'order form' for blood tests. I leave his office with a half-smile, clutching three very precious bits of paper. I don't pay a thing.

3:50: I enter the pharmacy, and hand over the prescription. I ask if I'm still entitled to free prescriptions on the grounds that I'm on benefits and low income. I'm told yes, I am. Ten minutes later, I leave with 60 co-dydramol tablets, enough for between 7 and 30 days, depending on how much pain I'm in. I don't pay a thing.

4:10: I walk into my local hospital's phlebotomy department.

4:25: I am called through into a room where a polite man in a clean uniform smiles at me, takes my order form, and within a minute, has gently inserted a needle into my arm, extracted enough vials of blood for the tests, applied a cotton swab and taped me up. I thank him, and he wishes me a good day. I don't pay a thing.

By 4:35 I am back in my car headed home, having experienced one of the most iffecient interactions I've ever had with our medical service. The most wonderful thing, for me? All of this, the initial appointment, the blood tests, the referral, an the appointment with the specialist, when it comes, as well as my rescription, was completely 'fre', in that no one asked me for any money, and I didn't have a moment of sitting there debating with my doctor as to whether I could afford the care I needed. That's not a factor. Whether or not I can afford to live pain-free existance doesn't come into it. Yes, I will 'pay' or these services in taxes, in the £200 a month the government skims off my husbands paycheck, but when I need them, I don't have to check my bank account before heading into the pharmacy or the hospital. My major worries as they're drawing my blood? Fainting, not my overdraft.

There is the small matter that the wait to see a rheumatologist is a frankly shocking 58 days in my local hospital, and a not much better 32 days at a further hospital which is the soonest we could get an appointment. But the thing is, I'll be able to see someone, and I'll be able to do it for free, and I'll be able to get answers that if I had to pay for my care I may not be able to afford.

In the mean-time? I have painkillers. The painkillers do, admittedly, kill the pain. I got to be pain-free for the first time in months tonight and it was exciting. When they wore off, a little shiver of panic and a whimper of grief scuttled through my body. However, they also make me dizzy, and extremely nauseated. I had to lie down for four hours until they wore off, because sitting up, standing, walking, everything made me want to vomit or fall over. That was on a 2-pill dose, though. I've now taken a 1-pill dose in the hope that that will kill the pain without killing my nervous system.

In other news, I looked up 'rheumatologist' in an effort to understand what I was getting myself into, and subsequently convinced myself I have Lupus. Yeah. Maybe I should rename this blog 'The Hypochondria Star'.

Sunday, 8 August 2010


I'm totes alive, y'all. I promise. The miscarriage is over and my hormones are starting to settle down. I am sorting through stuff in my head so although I have things to write, I don't really have the gumption to write them. Also, Mr Man is working ridic hours right now so The Beast and I are alone all day and that is SUPER TIRING Y'ALL.

I get southern american when I'm sleepy.

My pain levels are through the roof, and my legs are doing WEIRD THINGS that legs shouldnt be able to do. Tonight after having sex all the joints from my neck down just decided not to do their jobs. I tried to push up with my arms from lying on my stomach and my shoulders gave out, my legs were hanging out of my hips sockets and my knees were doing some sort of ridiculous thing where the kneecaps decided not to join the rest of my legs.

I've been thinking alot recently. I've never really believed I had EDS, or any sort of hypermobile problem. I always thought there'd be some other explanation, that it was too convenient that a friend should happen to be talking to me about her own EDS, should happen to send me a link to a blog to explain things, and that I should happen to find this syndrome so very like what I was experiencing. But the more time goes on, the more pain I'm in, the more my body does things that it just SHOULDN'T, the more I think 'Hey, maybe the universe had a plan, and who the fuck am I to mess with the universe?'

I went to a drop-in nurse last week, just to seek reassurance that all this stuff was abnormal. She took one look at my hip dislocating and relocating and immediately told me it WASN'T normal, that I NEEDED tests and specialist referrals, that something had to be done. The relief I felt was just astronomical. For someone to tell me that it wasn't all in my head helped so much. I sat down with Mr A and said I really needed his support in seeing a doctor about this. I needed him to come and hold my hand, because I was scared. We're making an appointment first thing on Monday.

Wednesday, 28 July 2010

Stuff and Things and Babies that weren't.

This is hard to write.

I've been a bit absent. Something happened. I was sitting in Inception on Saturday the 17th, enjoying it thoroughly, and it struck me. 'I'm pregnant.' It wouldn't leave. I thought 'No I'm not' and a little voice in my head replied 'Yes, yes you are.' Since the only day I COULD have gotten pregnant was Friday the 16th, I thought it was ridiculous to even think that I could know 36hrs later. That's not possible, right?

Except it was. The next Saturday, Bug-Baby's first birthday, we found ourselves staring at a positive pregnancy test. We got a positive result after a week with her, too. Apparently my body reacts to pregnancy ridiculously. I was having symptoms before the result, and by Saturday I was having serious problems. I was nauseated, really tired, and all my joints hurt like hell. We went out to wonder around our favourite market and have a picnic for Beast's Birthday, and I hd to hobble around using an umbrella as a walking stick. I also dislocated my shoulder picking up a bag of shopping. It was a heavy bag, but still. On Monday I went to meet friends and by the end of the day I was leaning heavily on the pushchair, using it as a zimmer-frame, my hips rolling in and out of their sockets like they were doing The Twist.

My body is a total drama queen.

I went to bed early and dreamed about giving birth to a tiny baby boy. This morning I laughed with Mr A when he came to wake me up about what we named him, and how in my dream I didn't give birth, they just said 'We have to deliver the baby right now' and then brought me this tiny little baby that could fit in my cupped hands.

I got up and went to the bathroom for my morning wee.

I was bleeding.

A lot.

It's been a week of turmoil. Nerves, sadness, worry, stress, tears, anger, pain, now a feeling of confusion. We had decided not to continue the pregnancy, because it was making me too sick, and because we were too concerned about my health and ability to take care of a toddler while bedridden for nine months. So what right did I have to feel emotional - nay, hysterical- when I passed that solid white would-be-baby? I don't. I have no right at all.

Friday, 16 July 2010

Nostalgia and why shopping doesn't work like prozac.

Last night I had a really EDS-y dream. I don't know why, I wasn't particularly researchy before I went to sleep, but there I was in my dream, dislocating and falling over like the best of them. And so was everyone else. And then there was Peter Pan*, an old flame, and we were madly in love again apparently. And I hate to admit it, but it felt really nice. It felt really, really nice to be in-love and excited and nervous.

It's hard to explain, I've been feeling sad recently. Today is Mr Arienette's birthday. He's on his way home from drinks after work. We used to always take each others birthday's off work, we used to spend the day having fun and showering the birthday-person with love and attention and whatever they wanted. This year was our first year of birthdays post-baby. My birthday was awful, as documented. Mr A's won't be a whole lot better, but at least I went to the effort today of spending a few pounds and a few spoons picking him up some presents. Only some fun socks, a pair of cool boxers and some (really expensive) jellybeans, but hey, presents is presents, right? It's three pairs of socks, a pair of boxers, and two packets of jellybeans MORE than I got.

We've been married two years and together for three. Whenever people give me That Look I tell them 'You don't get married at 19 unless you really love someone or they're really rich. And he's not rich.' In a way, it's true. We love each other a ridiculous amount, but in three years we've dealt with so much. Huge mental health problems, an affair, unemployment, homelessness, physical ill-health, constant poverty, pregnancy, a baby... We both came into this relationship damaged, and we both work hard to repair each other, but there are parts of me which will never really be fixed. I'm chronically fucked up. I have such severe abandonment issues that if he gets more than 2 text messages in a row I'm convinced he's having an affair. I have spent the last three and a half years waiting for him to realise he can do better and leave me. I'm the one who cheated but yet he's the one who trusts implicitly, I'm the one who's jealous. Because I'm the one who's bored. He always wanted to settle down, get married, have babies. That wasn't even on my radar until I met him. I haven't worked since 2 months after we met, he's been mostly employed the whole time (barring about 6 months over two periods when job markets crashed and his career-field was shoving people overboard faster than they could take a breath) so he has had adult contact, he has a feeling of security and grown-upness. I don't. Because I don't deal with the money, I never know how much there is. Due to the way my family moved around when I was a kid and my parents leaving England to live abroad when I was 19, this triggers off REALLY terrible anxiety attacks and makes me feel so insecure. I am constantly waiting for the rug to be pulled out from under me. Mr A is always trying to reassure me that things are fine, but then he'll come in and say 'Hey, can I used your account to pay the gas bill?' or I'll get a fucking summons notice for non-payment of council tax (it was a mix-up, but it nearly gave me a fucking coronary) and it makes me scared deep down to my core. If he leaves me, I'll be a young single divorced woman with a baby and no job skills or qualifications or family. It's a thought that makes me feel claustrophobic, like someone is putting a bag over my head. I can't even express how terrifying my position is. I am 22 and I haven't had a job since I was 18, and I've never kept a job longer than 2 months. Can anyone even comprehend how that, plus having a baby, will affect my chances of ever getting more than the most basic of employment? I'll never be able to fulfill my dreams of going to live in Australia because I couldn't take Beast so far away from her father. So I'd be stuck in England, with no connections, no family, no prospects. Terr. If. Eye. Ing.

So, why does all of this have the effect it does on me, which is to make me fantasise about going out like a single person again, and to go shopping? I couldn't tell you. I could hazard a guess that the fantasising is my way of working through the worst-case-scenario. I'll be on the bus or walking down the high street, mentally assessing my chances of getting every vaguely good-looking guy that walks past. Usually, they are slim-to-none. Babies are MASSIVE cock-blockers. Pushchairs turn you invisible. Every now and again when it's not IMMEDIATELY obvious that I have a baby with me I'll catch a guy paying a bit more attention to me and flatter myself that instead of being a creepy stalker perv, he COULD be into me, and by extending that line of thought I think that maybe, men that I'M into could be into me too** I have little daydreams about going out and getting a boyfriend, living the life of a young twenty-something like all my friends (when Beast is with her dad, of course) and it's nice for the three minutes when I suspend disbelief and make myself forget that I'm disabled, damaged, a mother, and not that attractive, especially with my post-pregnancy funbags. I don't have anything to recommend me that wouldn't be cancelled out by the problems. It all falls apart, this strategizing and damage-limiting. But I keep doing it, maybe in the hope that one day I'll convince myself that if he left, I would have a chance of being ok.

The shopping is harder to explain. Whenever my emotions get too extreme, I get compulsions to spend money. It doesn't matter what one, but the more extreme the emotion, the more I feel I have to spend. I'm getting better at calming it down. When I was pregnant barely a week went by when something didn't arrive in the post, and often it was multiple things a week. Now I only really have to do it when I'm anxious, although the urge is always there, under the surface. It especially pops up when I'm anxious about how other people see me. For instance, next week is going to be insane. We have a really important function for Mr A's work n the same day and Beast's first birthday party. We're attending the function but I have no idea what to wear. This may not seem like a massive issue, but it is to me. I hold this fundamental belief that if I just look right, no one will suspect that I don't belong. Every time I step into a new situation I wait for everyone to turn, look at me, and then cast me out with a quivering finger, screeching 'YELLOW SHOES?! GET THEE OUT!' My aim in life is to stand out just enough to not stand out at all. I want people to see a perfectly put together mask so that they don't probe any further and realise I am fundamentally broken at my core. So I will spend WEEKS trying to put together an outfit that says 'Look at me, I'm so stylish and so together. You can forget I'm here now.' and then hours on the day deliberating the outfit I've spent weeks on. I literally cannot just throw a t-shirt on. Every time I get dressed I think about what my clothing choices will make people think of me. It's horrible. So I'll go into a shop and be worrying about money and social occasions and I'll spend three hours trying to find the perfect outfit that says what I need it to say and then I'll stand in line to pay and suddenly, between joining the line and leaving the shop, at some point I will get The Guilt. The nagging, sucking, joyless vacuum that says 'Happy now? You can't afford that, you know. It'll probably be uncomfortable or it won't suit you or you'll wear it once. Why do you even bother, you never look nice.' and my palms will sweat around my purchases and they'll feel heavy and my heart goes numb and I feel sick and suddenly I just want to run away and cry in a corner.
So far over the last 6 months for this work function I've already bought 5 items of clothing. I've considered many many many more, and am, as we speak, trying to decide on another. I don't know why I'm bothering, whatever I wear won't work and I'll either be over dressed or under dressed or wearing the wrong color or will stain my outfit on the way there or Beast will throw up on it. But still I feel the need to carry on trying. Like the scorpion, no matter how destructive me behaviour, it's in my nature.

*Name changed to protect my sanity.
**Not massively likely. Almost every man I've ever been into based on looks alone has been completely indifferent to me. My 'type' is quite specific and they don't tend to look twice at me, because they're sucking-face with infinitely better looking women. Sucks. I think Mr A is slammin', and truly beautiful, but as he looks now I wouldn't pick him out of a crowded room.

Thursday, 15 July 2010

Write despite it.

A friend posted a link to "I Write Like..." and I have been having a lot of fun since plugging in different poems and bits of writing and seeing the results. I'm also having a lot of fun reading through my old work. I used to write a LOT. It was what I was going to do. I felt really really passionate about it. Also? I was good. And I don't say that with smugness. I haven't written much since I got pregnant, I have nothing to be smug about. But I consistantly got very high praise from anyone who read my writing, including my university teachers, who were writers themselves. A teacher at school was willing to pull strings to get me into the best Creative Writing course in the country. I Was Good. Especially looking back on things I wrote when I was 16/17. I really did have quite a remarkable way with words and language for such a young person. I miss it, but more than that? I miss being YOUNG and being good. Somehow being good now wouldn't have the same impact as being good at 17. Although of course when I was 17 I had no idea I was good. I thought I was rubbish and I wrote despite that, and I think that's probably what made me good. That I wrote anyway and that I was never complacent because I never had an inflated sense f my own skill.

Today was a good day again. I'm still in lots of pain (what's new?!) but I just had a good experience, on the whole, of the day. It rained again and that sucked but both A.B and I were in a good mood and there was much less grumping than usual. On both sides. The phone got re-connected and so now I can phone my mom and dad again and it'll make our lives easier to not have to rely on our mobile phones.

I wish it would stop raining and get warm again. I can't do washing if I can't dry it and I can't be bothered with all the lifting necessary to dry it inside.

We had a paediatric appointment yesterday, the paediatrician is very pleased with Beastlet's progress but once again managed to upset me with her anti-breastfeeding attitude. She's genuinely a nice person and I couldn't have coped without her listening to me when Beast was small and no one else did, but while she doesn't out-and-out tell me to stop feeding, she's really dismissive of it in a way. She'll be all 'You've done really well, she's thriving, but you know I had all mine off the breast at a year old' or '...but she really can do without the breast now.' or ' just need to break her will, she'll get hungry enough eventually and just give in.' Which really really upsets me. The idea of trying to break the will of a 12 month old baby, just starving her until she 'gives in' is just horrendous to me. I would make a complaint but other than her very un-hippy attitudes she's a great doctor and has helped us so much. I do worry about a less determined mother seeing her and maybe giving up breastfeeding because of what she says but I worry MORE about the mothers who desperately need help their GP's can't or won't provide, for whom Dr S might be a godsend. After our first appointment with her I sat in the car crying in relief. She bouyed my spirits. Without her I'd still be living in a nightmare and i definitely would NOT still be breastfeeding, because I wouldn't have been able to keep up with Beasties demand for extra milk to soothe the pain her allergy caused. So I put up with her occasional upsetting aside, because it's a compromise, and if there's one thing the NHS has taught me, it's that you compromise, every step of the way. You have to. You don't have a choice.