'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.

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.

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.

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.

Eh.

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.

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.

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.