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?

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 arienetteborealis@gmail.com.

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.

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.

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.

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?

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 clinic....off 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 masks....it 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!

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.

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.

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.

Progress

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'.

HOLLA

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.

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.

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.

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 '...you 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.

Good days

Today was a Good Day. I woke up at 2pm, which is more or less unheard of on weekends unless Mr A drags me out of bed. Weekends are when I catch up on the sleep I miss during the week. Without them I would collapse from exhaustion pretty quickly. I have two days a week to catch up on running myself down the other 5 days, so I usually sleep in what most people would consider a ridiculous amount. On saturday I got up at 4pm. Hey, walk a mile in my shoes, ok?

I literally collapsed into bed sometime between 3 and 5 this morning. I don't remember going to bed, Mr A woke up to A.B awake and 'playing' with my hair at 5am, I was out cold with no blanket on me (UNHEARD OF!) and when Mr A went downstairs all the lights were on, the TV was on, the netbook was open and running. It looks like I went up to feed A.B and then just passed out in exhaustion. Mr A thought I was dead! Ho ho ho.

Anyway, I woke up at 2pm, confused and groggy but feeling rested. I did a bit of laundry and then we decided to go for a drive. This is more or less unheard of for us, we never seem to go out on weekends except when we're running errands. We never go out just to go out. It always seems to be us hurrying out in a rush to rush around some place. It was really nice though. We had a really good long chat, we listened to some good music, we enjoyed ourselves. I'm so glad we did it.

Then when we got home I finished off the laundry and we made a kick-ass dinner and ate it outside on our deck. The deck is coming together really well, I'm really proud of myself. It was really bad befre, covered in junk and unusable. I worked really hard to get it to a state where we can use it. We've bought a string of solar lights and a kick-ass solar lamp. Added to the barbeque and the lettuce that I'm growing, it's looking really homely. Not spectacular, not Home & Garden-worthy, but there's space and we can eat out there and it makes me smile. Working on the deck is slow, four years ago I could have done in a weekend what it's taken me over a month to do now, but it is what it is. I get tired really easily working outside, especially in this weather, so I have to accept that I can do two, maybe three hours over as many days, maybe just that in a whole week, and that's ok. I have limits, that's ok.

Right now it's 3am and I'm taking a little break from tidying up the living room. We have a phone technician coming to the house on Wednesday because our phone hasn't been working for almost three months. The room is a MESS though so I'm a bit stressed out. Tuesday we have a paediatrician appointment so I only have tomorrow to get it sorted out to the point where I'm not embarassed to have someone see it!

I dyed my hair from pink back to blonde and I'm already a lot happier with it. I needed to go through a stage of dying my hair funky colors, I needed to be able to say I'd done it, but I would be lying if I said I felt happy with it the last few weeks. It just didn't look good and it was affecting my self-confidence, because I felt other people looked down on me and as much as I SHOULD just not care what they think, I do. I always do, always have, always will. I feel more confident now that I feel like a look more normal. I wish I had the self-confidence to carry off looking as alternative as I am at heart, but I've discovered that unless you have a community around you of alternative people to reinforce that what you're doing and wearing is ok, it's really hard. It's hard to be one person standing against a wave. I'm content that that doesn't make me a sell-out or a poser, it just means that I don't have enough support, and that's just not my fault, at the end of the day. It wasn't ME that stepped back when I got pregnant, it was my friends. They left me.

Today I am feeling peaceful. Now, back to cleaning!

Knock knock. Who's there? No one, I fell over halfway to the door.

So I promised I would come back and expand on Round Seventy Gazillion of the 'Ari Is Tired' game.

Last Week I was invited to attend a play on July 1st with a relative of Mr A's. This was exciting, and also anxious-making. It would involve a longer stint away from Baby A than I had ever had. I am also currently not on speaking terms with Mr A's parents and grandparents, so spending a whole evening with his brother and aunt? Ummmm. I had to think long and hard about it, but eventually decided that actually, I really did need an evening out, away from the house, being a grown-up. I was a Theatre and Drama student at school, I used to love nothing more than checking out plays. I haven't been to one since I finished my A-levels in '06. I haven't been out during the evening without Mr A or Baby A for 2 years. I really, really, really needed a few hours in adult company, doing something I enjoyed.

So, with much trepidation, I started to get ready. What to wear was a major issue. On one hand, I wanted/needed to be comfortable. On the other, this is my first adult evening in two years, and I wanted to look NICE. I ended up settling on a long red skirt with white spots, worn as a shorter dress, with a black silk belt, with red high heels and my hair pinned back as best I could (it's very short). Once I'd slapped on a bit of slap, I was looking pretty smoking.

We had an amazing dinner (steeeeeaaaakkkk MMMMMM) and the play (Women Beware Women) was spectacular, as was the conversation. I came home buzzing, elated, refreshed, and best of all, missing Baby A (why is that a good thing? Because 99% of the time I just resent her and want someone else to come and help me with her. To MISS her, to feel excited and elated to see her? Awesome feeling.) It was, on the whole, and amazing success and I'm so pleased Mr A bullied me into going.


However.

The effort required to pull this night together was enormous, and it knocked me flat on my ass. I got home barely able to walk, despite having worn flip-flops all the way into London from Home, only putting on my heels at the last minute. Sitting in the theatre for three hours and the all of maybe 15-20 minutes walking I did in total was too much for me. I burned out in a major way. It's now a week later and I'm still hurting. On Tuesday we went to IKEA for me second birthday, and we hd a great time but by the time we had zipped round to the market hall (maybe 45 minutes, tops, of light strolling) I was really hurting, could barely support myself, leaning heavily on the trolley to keep upright and avoid the embarassment of Making A Scene.
Apart from Tuesday I've been stuck to the sofa every day since Thursday, and sleeping til almost 1pm. I'm exhausted, in a huge amount of pain, and now, tonight, my chest has started hurting as well. It feels like I'm having an asthma attack, but a really low-grade one, for hours and hours now. I could scream. Mr A sent me to bed early (9pm) after a chat about how I'm not doing terribly well, but then we had sex and it woke me up and now it's 1:30am and I CAN'T SLEEP. I was supposed to be seeing a friend and her new baby tomorrow but may have to cancel at this rate. Luckily, she is AWESOME and understands and is willing to be cancelled on at the last minute. I'm frustrated, because I really wanted to get out, but what use is it pushing myself to the point of collapse? Where I'm at right now, I can honestly se myself passing out and leaving this poor woman trying to get help for me while looking after two babies. No, not fair.


As for the conversation with Mr A earlier... I am having a bit o a wibble at the moment, about my health. I'm 22. I should feel this fucking old. I feel geriatric. I'm always tired and always in pain. my life is a never ending list of compromises. Want t go out for a walk? Well you can't. Go sit on the balcony instead. Want to clean the house? Well you can't, settle for putting a single load of laundry on instead. Want to cook up a batch of food to freeze? Well you CAN'T. Settle for buying the ingredients and hoping you having the energy at some point and that this lot won't get thrown out like the last six lots (it did get thrown out, by the way.) I'm tired of all of this never-ending tiredness.
I finally narrowed down the list of GP's and found one nearby that ticks all the right boxes. Close by (although it IS uphill. Compromise.), two female GP's, excellent reviews on NHS Choices of the GP's treatment (although not of the support-staff's behaviour. Compromise). Next stage is phoning to ask if they're registering new patients and then finding a time when we can go and register.

I've had to stop driving lessons/practise because I wasn't safe behind the wheel. That was a massive blow. I love my car, it's a thing of beauty, and I love the wy I feel when I drive. But I was not safe. I kept forgetting about the handbrake, I forgot to check for red lights, I would zone out while driving. At one point I became REALLY sick while driving home and started greying out, trying not to vomit. I couldn't pull over because I couldn't turn my head or use my brain to figure out where would be safe. It was scary, and dangerous. This is bad news, because without a license I am really really limited. I'm getting better at taking public transport, because I HAVE to, but it's still difficult and it's still enough to keep me much more housebound than I would otherwise be.

I'm frustrated. I'm scared I'm never going to get any better, that my life goes downhill from here and never, ever gets better. I don't want to have peaked at 21. 21 is supposed to be the beginning, not the beginning of the end. I get so down about it. I shouldn't be reading all of this stuff about the DLA and benefits reviews, because I'm internalising a lot of the things being said by stupid, ignorant people. I'm internalising the belief that I'm scummy, scrounger, useless, work-shy. I already had a gold-medal in self-criticism, something I've fought hard to put aside in the last couple of years, only to have it all come crashing in on me now. Without any work or possibility or hope of work, without any indication that things will GET BETTER SOON, I feel like I'm collapsing.

(next morning)

I had to run upstairs to feed the baby and subsequently couldn't post this last night. I woke up at 6 this morning with a dodgy tummy and so had to cancel my outing today. Bah. Still having chest pains.

3am and that-time-at-the-bus-stop

I've spent the last day or so in a lot of pain* and so I've been just chilling out reading this and all the comments below it. And for some reason it dredged up this memory that I systematically repress every time it comes to the surface.

For back-story, I have been subject to sexual, emotional and physical abuse from many people in the course of my life-time. This ranges from childhood sexual abuse, to stranger-rape, to acquaintance rape, to parental violence/emotional abuse to extremely controlling emotional abuse from an ex. Until I met my now-husband, there wasn't a year in my life that went by that I wasn't subjected to some form of abuse. So I did not come to this situation wide-eyed and bushy-tailed and full of the fluff and joys of the world.

I had an office job in London Bridge. It's a densely populated area, with a wide-range of people. There are offices, shops, cafe's, homes...all sorts of people around, all the time, for all sorts of reasons. I left work one day and stood at my usual bus-stop, waiting for my usual bus. There were at least 10 people there, possibly as many as 25. It was on the main road, not tucked out of the way. I've included a picture of the street, the bus-stop is next to the black streetlamp that goes halfway over the road. You can see there is very obviously a lot of people that would have been around or within sight around the time that this particular incident occurred.

I was a young-looking 18, 5'6 and maybe 8 and a half stone, wearing office-clothes. It was April or May so still light out. I was standing with my back against the building, the normal London-Appropriate amount of space between me and the people around me, allowing for crowded-bus-stop-adjustments, of course. As I waited, I barely registered that a man was approaching, walking down the pavement. Without resorting to class-privileged snubs, he was clearly either homeless, or mentally ill or both. He was what most people would term a hobo, dressed in baggy dirty clothes, unwashed, long matted hair, carrying a blue plastic bag I would later realise was the type usually given out at cornershops and off-licences. As he came up to the bus-stop, he very marginally sped-up, and with no warning, swung out his arm and smacked me full in the head with his bag, which had cans in it. He swung it again, without even breaking stride, only missing my face because I somehow, through my shock, put my arm up and caught the blow. He didn't even turn, or slow down, he just carried on going.

And not a single one of those 10-25 people did a thing.
Not one of them tried to stop him.
Not one of them moved to protect me (although the speed at which the attack happened, I don't blame them for this really)
Not one single person asked if I was ok. In fact, they pointedly avoided even making eye-contact with me.

I was a teenage girl, alone, who had just been assaulted by a strange man, and sustained a serious blow to the head, and not one person acted as though anything had even happened.

I was fine, physically apart from a sore head. There was no concussion, no head injury. But there was a much much worse injury, which was mental and emotional. It was the knowledge that I was not safe in public, not because people might attack me, which was something I had learned many years before, but because no one cared. It was deeply and profoundly shocking to me to discover that my previous assumptions, that if any of my attacks or abuses had happened in front of witnesses that someone would have stepped in or helped, were completely off-base. That was worse, in a way, than the attack itself. I felt like by being silent and ignoring the attack, these people were sending me a message. Shut up. Don't make a fuss. Don't embarrass us with your hysterical display. We don't want to know or hear about your problem. Just forget it. I bit my lip and tried to stop my shoulders from visibly shaking as I cried in pain, fear, and humiliation. I got on my bus and stood shoulder-to-shoulder with people who clearly wished the ground would just swallow me the fuck up so I would go away. I ended up getting off the bus two stops later and walking the few miles home, chain-smoking and crying, calling my then-boyfriend (Mr A) and blubbering about how much I wanted to vomit.

Soon after this incident, abnormally soon, in fact, within days, I suppressed it to the point whereupon reading a line about it in my diary a year later, I couldn't remember what on earth it was referencing. In fact, I didn't remember it until I randomly remembered it about 6 months ago. I then immediately forgot about it again, after feeling overwhelmed by the apathy shown by those strangers at that bus-stop.

This isn't really going anywhere. Just a memory that cropped up in response to a lot of reading about rape-culture and it surprised me that I've suppressed it not once, but twice. It surprised me that at a crowded bus-stop a young girl can sustain a vicious and unprovoked attack and even when there is no risk of danger to them, the people around her will decide not to get involved, not even to ask if she's ok. Even as I write this, I'm making excuses in my head. I should have gone back into work and told someone what had happened. I should have screamed, to alert my fellow bus-stoppers that what had happened was Serious Business (because they might otherwise have assumed that getting hit in the head with a few full cans of beer wouldn't have bothered me, obviously). If I didn't scream, it's my fault, right?

NO. NO IT'S FUCKING NOT. This is rape apologist language applied to a much milder assault. And don't get me wrong. I know that this is nowhere near the worst thing that could have happened to me. I would rather take another 100 blows to the head than ever be raped again. But this particular instance and something that happened around the same time, when work-colleagues got me way-way-way fucked up, took me to a strange place and then completely failed to even attempt to throw up the vaguest concern for my well-being, which in turn led to them watching a complete stranger walk me out the door and into a cab despite the fact that I could barely stand, did a lot to wreck my trust of the average person. We live in a culture that allows this sort of shit to happen by not ACTIVELY and LOUDLY stepping in and stopping it happening. Why did not one single person at that bus-stop ask if I was ok, or offer to take me to the tube-station so I could find a police officer? I shouldn't have been getting on a bus. I should have been being checked out for a concussion and making an incident report. Because not one single person there acknowledged that something had even happened, I somehow felt like it was my FAULT. Like I was making a big deal over nothing, like this was something I should just accept, that he was allowed to assault me and why was I getting all fucking uppity over it?

This has been a blog about why I wish I had a son so I could teach him to be a Good Man. This has also been a blog about why I cried some tears of sadness when I found out I was going to be raising a daughter.


*I will talk about this soon. And not in a general 'I'm tired and in pain' way like usual!

How much will it cost the government to remove my Disability Living Allowance?

(Following on from immediately earlier entry.......)

Realistically, the govt. would pay me much more in working-benefits and subsidiary costs than it would save if it sent me out to work. I currently receive higher rate care and mobility. Let's call that £450 p/m (although because I have a car on the motability scheme, the cost is more but the cash is less)

Lets say that I get a job working 16hrs a week for minimum wage (I can't expect much more than that, to be honest) our total entitlement to benefits as a couple? £11,400.63. Now, that DOES include some things we already claim, like housing benefit and tax credits and child benefit (all things, I'd hasten to point out, than ANYONE is allowed to claim, working or not, except tax credits which are an in-work benefit). It's still a lot.

Now, add to that that because I'll be working, I'll be pushing myself past what I am capable of while still retaining any degree of comfort. This will mean that most likely, I will have to go on medication. Probably anti-depressants, anti-anxiety, and pain management.

I'm going to break this down as much as I can to make it a bit clearer. Obviously, these numbers are not accurate as, guess what? I don't have a direct line to the NHS offices to find out how much meds cost. But I'm going off searches of the things I would need and an educated estimate at how much they would cost based on the assumption that the NHS bulk-buys. For example, I got a price of 64p per pill for Sertraline if bought in bulk at 270pills, so I assumed the NHS would buy in even larger numbers than that, and just pegged it at 40p. It's probably less, but lets add some more for admin costs, the cost of my GP, the cost of the pharmacist, etc etc. Assume all numbers are accurate for the purpose of this excersize.

Assuming Sertraline at 40p per pill: £12.50 p/m
Diazepam (assuming 1-2 pills a week): £3 p/m
Codeine (assuming 28 a month, which I could easily do now, without a job): £5 p/m

That's £20.50 a month on pills alone, almost £250 a year. And because I will soon be diagnosed with a lifelong illness, I will soon get my prescriptions free, which means the NHS will foot the entire bill. It will also foot the bill for the support I will no doubt need. The 16 weeks of councelling I'm sure I'll be provided with (pffffft), the braces (£40 please) I may or may not need to hold myself together (chortle chortle), the hospital stay I may end up needing if I relapse and require hospitalization, or the hospital stay I may end up needing if my perilously low weight plummets any further (which it would do, if I was stressed and also having to be doing physical activity 16 hours a week more than I do presently. And lets not kid ourselves that a 22 yr old with no skills, qualifications, previous work experience AND a baby could get anything other than something that would require a large degree of standing on my feet all day, serving people).

If I was to get pregnant again (not unreasonable for someone my age, in a stable relationship, but also not something I'm planning on doing, but I COULD) the cost to the government would skyrocket almost immediately. I would be extremely high risk, I would most likely have to leave work fairly soon which would mean I would have to go on *drumroll, please* unemployment benefits, or maternity wages (the actual term escapes me at 5am, sorry) all of which come straight from the governments coffers, I would most likely have to have a high-risk birth which would cost some hospital a lot of money, if I have my baby prematurely (stress and weight problems would contribute significantly to this possibility) the costs shoot off astronomically. If I had to stay in hospital for any length of time on bedrest, Beastlet would have to go into full time childcare while I'm in hospital, AND GUESS WHO WOULD HAVE TO PAY FOR THAT, GEORGIE? The government, in the form of childcare vouchers. I haven't even accounted for the fact that I probably wouldn't find a job straight away that could take me, and therefore I'd be on JSA for posibly months before anything came up. That's another £250 a month.

This is all ignoring that the initial assessment, administration, and paperwork required to remove my Disability Living Allowance in the FIRST PLACE will all cost money. George Osbourne is basically saying he wants to pay me more money so that I can be poorer and in lots more pain while someone else brings up my child two days a week. Rightio then. That makes a ton of sense.

Originally I was going to round up this post with a definitive number for you, but I don't have one. The peripheral costs, the ones that just cannot be accounted for, calculated, those are the ones that will really get out of hand if G.O succeeds in his plan of forcing me back to work by removing my DLA and 'encuraging' me to get a job. It seems fairly obvious to me that continuing my DLA payments is actually the most financially sound option for the government, so why isn't it obvious to those who are in charge and should actually know what they're doing?

"...and then my boobs will basically explode and I'll die."

That is why Mr A should just google shit when I tell him I'm sick, instead of asking 'What's that?'

I'm getting over a bout of mastitis. The anti-biotics did a number on me. I'm nauseated, have a dodgy tummy, and keep feeling very... I can't describe it. Wiggly. Like all the molecules in my body are doing the mexican wave. Or something. BUT. That's all ok, because my boob no longer feels like it's going to explode and I no longer feel lie I'm sitting in an ice bucket even though it's 30 degrees outside.


I'm feeling better these days, and worse. I'm a little depressed about this whole shake-up of the DLA. I know I shouldn't get involved. I shouldn't. But I feel I HAVE to. I feel like remaining ignorant to the issues isn't right. But when I open myself up to the truth of the situation, I feel like I'm drowning.

I'm drowning in the futility of the situation: The big bad government against a small rally of educated cripples.
I'm drowning in the bad press; hyperbolic, sensational stories of benefit cheats.
I'm drowning in the ignorance of the average person about what DLA actually IS, and who can claim it.
I'm drowning in the truth of what will happen if I lose my DLA award.
I'm drowning in the feeling of being worthless, scum, a scrounger, no good, a waster.

...

I'm in tears writing this. The worst part? The words of fellow disabled people. People who feel that their disability is more worthy than mine. People who campaign for ramps and toilets and better chairs, but who would happily consign me to being sent back to work or, more realistically, just being much much worse off.

I try so hard not to judge people. In the car park the other day a man driving a car with a blue-badge rushed into a parent-and-child parking space that Mr A and I had been patiently waiting for. When Mr A pointed out it was a P&C space, not a disabled bay, and that the disable bays were further down (closer to the store entrance, in fact) the man became belligerent and rude. We drove past an empty disabled bay just 10 parking spaces down. He hadn't even bothered to check for one before taking the last P&C space. We had to park at the back of the car park so as not to get boxed in, and I had to limp across the car park.
That man judged me and my family. He decided arbitrarily that his desire to not bother to look for a more suitable space and his right to park where he liked, outweighed my need to park in a P&C space (for those without children, P&C spaces are important, because getting a baby into a carseat when you can only open your doors a foot is dangerous and difficult. P&C spaces usually also have safer routes to the stores, so parents don't have to walk children through open roads where there are blind corners made by badly designed carparks. Sometimes they aren't even closer to the store. Just safer and wider than regular spaces) He decided that I didn't need that space as much as he needed to stop driving RIGHT THAT SECOND.
Now, had there NOT been a free disabled space, I would have been the first to tell Mr A to give the space to him. But the act is that he can park in the disabled space, we could not. He had two spaces to choose from. We had only one, and he chose to park in that one space.

This is all getting a bit garbled. There was a point..... in that, people like him would look at me and go 'Well the medical assesment will weed out people like her! Send them back to work!'


I'm going to write a seperate entry about this...I started writing it in one entry but this deserves it's own one.

Tired.

Again.
It's been a tough few weeks. I've been over-stretching myself while simultaneously not getting anything really achieved.

It sounds stupid but my dental treatment is really stressful. The dental office is up a flight of stairs, which means that nt only do I actually physically have to climb the stairs, but it also presents the baby-problem. Firstly, there's getting to the place. It's a 5-10 minute walk, with no bus that goes there, so I have to walk. What does this have to do with stairs? Well, think about it for a second. I can either take her in the pushchair and then have to lug 12kgs of pushchair AND a baby up and down a flight of stairs, or I can not take the pushchair and carry the 20lb baby there and back. Neither of these options is actually any good. I can't really physically do either of them without doing myself damage. Forgoing the pushchair is the easier option, because I can take her in a sling, but that presents the problem that once she's in the dentists office and I'm in the dentists chair....what the fuck am I supposed to do with her? For my last appointment her godmother came with me, but I cannot and will not ask that of her again (except for when I go into hospital to have my wisdom tooth removed) I hate being in debt to people, I hate asking for favours, it humiliates me. The dental room is too small for her to be in there with me, so assuming I get there in one piece and get up the stairs in one piece, we then have the issue of who looks after the baby.

Are you starting to see why I'm extremely fucking stressed about this?

Yesterday I had a really great day out with a couple of friends, but the need to pretend that everything was great and I was fine and normal and wonderful meant that I massively over-excerted myself. Then we had a huge problem that took a couple of hours to sort of on the phone and that caused a lot of stress. Because we'd had a big day and then a stressful night we didn't end up having dinner, just a small snack. So today I woke up exhausted, in a lot of pain, with stress-whiplash, and the niggling guilt of having things that desperately needed to be done but hadn't been. I was also starving. But because I was out all of yesterday and out of spoons when I got home, there were NO clean dishes. At all. And no clean pots or pans or cooking implements or anything. The fridge was full, but not of grabbable, immediate-to-eat food. It taunted me with ingredients! They were all 'Ooooh, look at me, I'm a lettuce. If you took me out and chopped me up and added those tomatoes over there? You could totally have a really crappy salad. But you can't do that, CAN YOU? HA! YOU LOSE!'
Guys, it's a bad day when you're being taunted by lettuce. Lettuce is pretty much the wimp of the vegetable world. If you suck worse than the suckiest vegetable, then you suck a LOT.

I ended up having a can of coke, just so I would have the energy to grab a few sticks of celery and a jar of peanut butter. I wiped down the cleaniest of the dirty plates and after being up over an hour and a half finally had the oomph to eat something.

I'm in a guilt-spiral right now. A friend is very ill, and I bought her a present and meant to send it off a while ago, but didn't. The more time that goes by between when I MEANT to send it and the present, the worse I feel, and the less I can physically look at it. It is not all my fault, as I said it's been a tiring few weeks and honestly, I'm beyond exhausted. All the time. The 50 minute round trip to the post office (including standing around for 25 minutes in the que while A.B screams at me and my hips freak out) is something that I dread and that I've put off on thebasis that I can't push myself any more than I absolutely positively HAVE TO. And who always loses? My friends. My friends lose. And then I'm so ashamed of myself that I step back from them and then you know who loses? Me. And then I'm miserable and grumpy and guilty and who loses then? A.B and Mr A. So now EVERYONE HAS LOST. Awesome.

I also just got an e-mail from Mr A's aunt, inviting me to the theatre in a week. I could cry. I like this woman a lot, and I haven't been out by myself (as in, without Mr A) to an evening thing for over two years. I would love to go but I can't, because Baby A.B won't take milk from a bottle. And no one understand this. No one seems to understand that I can't 'just' leave her to starve. People don't understand why we don't 'just' get her on bottles. They act like the answers are so easy but they don't know her and don't understand what we've been through trying to get milk into her. They don't understand what it's like listening to your baby scream and cry and knowing that you can fix it. They don't know how hard it is to 'just' ignore that. And I get so tired of trying to explain why I can't 'just' leave her to people who don't understand why I bother to breastfeed in the first place, why I bother to breastfeed for 'so long', and why I care SO MUCH about breastfeeding her. They always feel like they need to offer me advice I don't want or ask for. Really, she won't starve to death? You don't say! Fuck off, even if she doesn't starve doesn't mean she'll be ok. There is a lot of bad stuff between being happy and starving to death. Bad stuff that I don't necessarily feel like inflicting on my baby.

See, I'm getting all defensive and angry and upset and.... I don't know. I'm stressed. I may have mentioned that.

I'm going to go drown my sorrows in some strawberry and mango tea.