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.


  1. Dark place. I've been there, no doubt I'll end up there again. And again. And again. Because at the end of the day, being disabled is no fun, whatsofuckingever and people who *aren't* don't get it, even if they live with us.


    Practical advice: Antinausea stuff. Do whatever you can to help your nausea. I'm trialling probiotics (hideously expensive however) and I'll report back in a few weeks on my nausea levels. I've had good results with ginger and lemon tea insomuch as I can sip it and if I load it with sugar at least I'm getting calories.

    Nausea is the hardest part for me. Feeling sick constantly is hideous. If I eat whatever doesn't make me feel like throwing up, then I can usually keep it down. I find juicy fruit the easiest (watermelon etc).

    It's really hard when they just don't *get* it. When they love you and want you to eat more, but it ends up being patronising because FUCK, would you eat if you had a stomach bug? No? Well, that's what this feels like.


  2. I think this is a part of being disabled I am still coming to terms with. Before, when I was 'just' sick-in-the-head, I knew that if I got my head sorted, I had the potential to live a normal life. There might be relapses, but the bits between the relapses? I'd be ok. I have not yet fully-fully digested the horror of the present situation, in which things will only ever get worse. I have not fully come to terms with the idea that this is it, forever. Some days I can see that one day I will, some days when there are spare spoons, I can accept and Come To Terms but on a bad day? It's just horrifyingly bleak. It's so horrifyingly unfair. I never got to live a life in which I wasn't sick in some way. I had finally left my unhealthy relationship with food and in some cruel fucking twist of cosmic fuckwittery, my body collapse8/s while I'm signing the divorce papers. I hate it. I hate it. I had PLANS, god damnit. Doesn't the universe understand? Doesn't it see? Doesn't it care?

    re, nausea: I'm fairly lucky in that I don't have much nausea problems, my main huge problem is massive lack of appetite. When I'm tired or in a bad mood or stressed out, I almost completely lose any desire to eat. Last night it took me 40minutes to force down a small serving of stir-fry. I had to keep stopping and then forcing myself to go back. I only ever feel hungry when I'm in a good mood or in a good place. I can eat for England during those times, but otherwise, I can easily go 48 hours on virtually nothing. A packet of crisps or 4 crackers or a slice of toast or something ridiculous. Its irritating and frightening in equal measure. Irritating because jesus, I'm a grown woman. I should be able to eat normally, and frightening because I worry that if I dropped below 90lbs I would have a very difficult time keeping the side of myself quiet that I haven't seen since I got pregnant. I worry that if I got too close to what used to be my Goal Weight (88lbs) I would find it too tempting to try to get there, just to see if I could. I don't think I'm mentally strong enough to resist that temptation if it came too close to being in my grasp. The higher my weight, the easier it is to stay healthy. The lower it creeps, the more I am tempted to just give in, just try, just-this-once-I-promise.


  3. I've noticed that writers tend to relate to people really well, especially those of us in the blogging world. We really feel like we know each other after a while. You always make me feel better on shitty days so I wish I had something to say to make you feel better now.

    Oh, how about this?

    My best friend came over to my house last night and taught me and Andy "the secret masturbator". She would stand behind our kitchen curtain and "jerk it" so all we could see was the jerking motion behind the curtain. We also played this game hiding behind the closet door, the coffee table, and INSIDE the fridge.

    This is what I do on my Saturday nights.

  4. Sara, do you know what I love about you? I can always count on you to bring the class factor on any given day up a notch.

    They should bottle you and sell you as perfume.

  5. I am 46, been married for 21 years. My husband thinks that having 'a rest' is a cure all for the pain of EDS. Well he knows its not but he is a great believer in them, these days he suggests so often that I have a rest it makes me wonder if its me he needs a rest from! Then when I try and say actually sleeping hurts too he seems so surprised.

    Often I blame him for everything and I mean everything. When I need a hug the most it is him I reject. I don't know why I do this but its always been this way.

    All of his habits at times like this irritate me and I expect him to put up with all of mine without question. When my pain is high which is much of the time my sleep patterns are awry. Often he rings and wakes me up which makes me feel guilty for being asleep in the first place.

    I really understand how you are feeling and just how pissed off you are.

    After 21 years of being irritated with my OH I am not sure I would know what to do if he wasn't around to be irritating!

    My heart just goes out to you. I can't eat when I am stressed either or in pain. I do try really hard though to stay hydrated.

    I need to maintain weight also otherwise it affects my immunity. Nowadays if I don't eat I force myself to drink complan or similar.

    I like Kale too.

    This time will pass and you will laugh again.