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Game Face

31 Saturday Dec 2016

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“I don’t think I can have you stay in my flat any longer. I want you gone within three months.” And with that announcement, delivered three days after Christmas, my father broke into a smile.
“There. Now I have that off my chest we can get on with enjoying the holiday.”

And remarkably, he has. Ever since dropping that bombshell on me over breakfast on the 28th, he has been eerily pleasant as if the idea had been pressing on his mind and now he had said it out loud it was no longer there. It’s crushing me, instead.

I wish I could say I was new to being thrown out by my parents. The fact is I ended up at my dad’s when my mum threw me out in early 2014. Before that we have to go back to 2003, age 17, when I wasn’t thrown out but more “had to leave” my dad’s flat for legal reasons – two years after my mum sent me to live with him when dealing with a suicidal teenager became too much of a hassle for her. After a period of homelessness and hospitalisation, I got my own flat in 2004, and stayed a tenant of a supported housing agency until I gave it up (and all the disability benefits too) to go to university. Although I knew my mental health was precarious, I had no idea at that point that I also had a genetic disorder affecting my connective tissue, and that within 8 years I would be a wheelchair user, unable to work, and back living at my dad’s because I couldn’t get an income.

 I have no idea how long he’s wanted to throw me out for. Periodically he’s complained that I’m not making an effort to find accommodation, to which I point out that I’m still waiting to hear back from the council – that private accessible accommodation that accepts housing benefit is hard to find is a gross understatement. Truthfully, my plan was to wait until I heard back from my last PIP assessment – firstly so I knew if I would be able to afford the move, and secondly (and more importantly) so I would not have to deal with two major stressors at once. Dealing with one thing at a time is how I manage my mental health. If I try to take on too much at once, it can go very badly. But he’s forced my hand here. I have to find somewhere to live before the end of March, even if I have to take my PIP claim to appeal again.

He’s always been very territorial about his flat. Despite my living there as a teen, it was always HIS. He resented that it was to his flat that my boxes would come back to when moving to uni, moving abroad, moving back in. He resents more when I get too comfortable. And heaven forbid I let my mother in….. part of me feels that my offhand comment on Boxing Day about mum “popping round” in the new year may have been the straw that broke the camel’s back. He’s expressed discomfort with my familiarity with the flat before. The few non-fixed adaptations and equipment prescribed by the council’s occupational therapist have mostly been consigned to the conservatory. He doesn’t want a cleaner in HIS flat (despite never being there to clean it himself). The powerchair in the hall is tolerated, although the wheelchair ramp, which I negotiated long and hard for, is considered a symbol of my “settling in”. Ironic, since it’s the thing which enables me to LEAVE the flat most of the time. Essentially, I’ve always known my residence would be temporary. I’ve been reminded constantly.

So, having had two days to take it in, I’m feeling relatively calm. Enforced calmness was necessary to avoid a stress induced breakdown 4 hours from home where all my information is, in a house where the internet is unreliable at best and any supportive family had left the day before. I had my necessary cry, and my small rage, and then I put on my grown up face and asked him to please give me a letter for the council stating intention of eviction by the end of next week. With luck, common sense will overrule spite and he won’t say I have made myself “voluntarily homeless” as he’s been threatening to. I’m not sure it would stand anyway, since I’m not a tenant and there was no contract for me to break the terms of.

In the coming weeks/months I will be blogging about my search to find a new home, and probably also drawing parallels with my experiences at 17 which so far I haven’t had the guts to because of associated PTSD. This is going to bring those memories bubbling to the surface though, so writing them out will be one way to take control. 

So. Let’s find an accessible place in London that also accepts housing benefit. Game face: on.

PIP – my recurring nightmare

17 Monday Oct 2016

Posted by in Blog, Disability, DWP, Mental Health

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Sunday night, late September

Well, it was a blissful four months without any DWP contact at all. A glorious summer devoid of this specific anxiety, along with the harsh, tinny compressed tones of the Four Seasons that inevitably accompany it (due to Vivaldi-specific PTSD, I will never listen to that piece for pleasure again). It was also a summer of drastically worsening illness, in terms of fatigue and autonomic dysfunction, but also, paradoxically, much improved mobility as my powerchair arrived in June.

Now summer is over. The brown envelope arrived the day after our return from our late holiday in Vienna. The timing couldn’t have been more symbolic.
Your PIP runs out on December 17th. Please reapply.
I knew I would be facing reassessment this year, even though I only received my first payment in January. I knew I’d only get a year. But I didn’t realise that I would have to fully reapply, not renew. This has sent me into something of a mental spiral, remembering all the stress, anxiety, extra dissociative episodes which occurred while trying to complete the original form – and realising that I will probably have to do this all over again – perhaps only to be told that I don’t qualify after all and that I will have to go through another appeals process.

It’s past 5 in the morning. I’m too anxious to sleep even though tomorrow is only the phonecall to clear up the renewal/reapplication confusion. My brain kittens figure it never hurts to panic early.

Monday evening, mid-October

The forms have arrived. It took me over a week to summon the courage to call the number and wait on hold through 40 minutes of pain and intrusive noise last month. I asked about reapplication vs renewal, and got told that whatever was on the letter I was sent, that’s what to do. So starting again it is. The deadline is November 7th, so I doubt I will be assessed in what remains of 2016 (last time I waited 7 months from sending the application to the initial assessment).
This means that I will lose almost £62 a week from December when my PIP runs out, until it  is (potentially) reinstated, as the Severe Disability Premium added onto my ESA is reliant on my getting PIP. It’s almost like they expect me to fail.

We’re doing the forms tomorrow evening, using the ones from 2014 as reference. I know that a worsened condition (both physical and mental) gives me no guarantee that I’ll get the points to reflect this. Cynically, I think it would be a miracle if I even matched last year’s results (Enhanced rate care; nothing for mobility). I had to go to a tribunal to get that. I’m not sure I can deal with another year of my life essentially put on hold so I can ensure I have the support I need. It’s a bloody grotesque system.

The email I wish I was sending.

04 Tuesday Oct 2016

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[CN: abusive parents, disability shaming, fat shaming, mentions of weight.]

I got an email from my mother last week, after we met for a coffee last Friday. It was the first time she had seen me using my powerchair and, looking back at the suspicious lack of comment, I guess she was saving her opinions so not to spoil the afternoon.

So the email came. Usual niceties “lovely to see you”…. then:

However, seeing you in the electric wheelchair, I can’t help feeling concerned about your well-being.

Followed by some information copied and pasted from the official EDS-UK page about how important exercise is.

I had to close my laptop before I wrote the email I wanted to reply with. It’s taken me up until now to feel like I can even write it as a cathartic exercise. I’m still not sure I’ll be able to send an actual reply without putting some sort of barb in there. Her attitude towards my newly-rediscovered mobility isn’t exactly a surprise; she has a long history of dismissive behaviour when it comes to my health, especially things which are visible. Here are a few notable examples:

  • I pulled tendons in my racket arm during a PE class when I was 13. That weekend said we could go out for a meal (a rare treat)….but only if I removed my sling.
  • A bad concussion the next year, via an accident in drama class, was dismissed with “just sleep it off”, although the school nurse had told her to take me to a doctor. I spent the weekend groggy on the sofa.
  • When I was 15 she gave my knee supports away to a friend’s daughter.

I suspect my childhood list only ends there because I stopped living with her when I was 15. I’m not even going to get started on the mental health stuff. That’s a whole other barrage of awful (“I think I’m depressed.” “Don’t be so silly.”). In adulthood it hasn’t gotten much better. I lived with her for a brief while after uni; on more than one occasion she barged into my room in the early afternoon, pulled my covers off, screamed at me to get up, to stop being such a lazy bitch. I didn’t have a diagnosis at that point, but tried to explain that it wasn’t just “being tired”. She shot back with “I’ve had two children under five, I was tired but I got up”.  In my imagination I shout “BUT YOU COULD!” after her. Now I do have a diagnosis, I’m not a “lazy bitch” anymore, at least out loud.
So here’s the email I wish I could write.

Dear Mum, 

Thank you for your email expressing concern over my newfound ability to leave the house whenever I want. However it has raised some questions for me which I hope you can answer. 

Are you embarrassed to have a disabled child? 
Because that’s how it’s coming across – that it’s fine for me to have this condition (that you never bothered learning about until you could try and use it against me like this) as long as it’s not visible to others and especially not when I’m with you.

Why the concern now? 
Was it not concerning when I was unable to leave the house for weeks at a time?
And if not, was this because at least I was being disabled out of the sight of others?

Why is my weight gain more concerning than my ability to leave the house?
(You are aware that I became exercise-intolerant long before I got the powerchair, right?)

I hope to hear from you soon. 
Love to you and [insert name of current partner],
Nina

That was far politer than I had intended. I can’t even unleash the fury on a vaguely-anonymous blog. In my head I’d made a huge list of things that were not “concerning” which had a far greater impact on me (such as when I told her my dad was physically abusive and she told me it wasn’t illegal so she couldn’t do anything) – but gain a stone and THAT’s cause for concern.

What I will write will probably be polite, terse, and contain a link to something about the detrimental effect of exercise on exercise-intolerant patients with chronic fatigue. No  questions, no accusations, maybe a “you’ve never been in my situation so stop judging me” at the worst. I wish I could send the one up there, but I’m scared of the reply. I’m embarrassed that her opinion can do this to me. Every time something like this happens I come closer to just cutting her off.

 

 

 

 

DWP: Disabled Writer, Persecuted.

12 Thursday May 2016

Posted by in Blog, Disability, DWP, Uncategorized

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I had two weeks of breathing easily, knowing I had all I was entitled to.
Two weeks of planning for the future, and not fretting for it instead.
Two weeks of optimism. Two weeks of happiness.
That’s all I got.

It took me 16 months after applying to get my ESA and PIP approved, the latter through a gruelling appeals process. It took another 5 months to convince the DWP that I was eligible for Severe Disability Premium so I could afford to pay for my own care. That fight took more energy than I thought I could ever muster; it could have mentally broken anyone, even if, like me, they didn’t already have serious mental health problems.

Then on Monday I got a letter. The brown envelope.
My rate of ESA is changing in December. Dropping drastically.
A phone call cleared it up:
I am being reassessed for PIP before December 17th, which Severe Disability Premium relies upon me receiving. So they will be taking it away pre-emptively, because they’re so confident they won’t need to reinstate it when I fail to cling onto the desperately needed PIP points. (It’s not even worth noting that my illness is incurable and progressive, is it?)

And just like that, my brief respite is over. My week has been punctuated with crying fits, temper, feelings of hopelessness. I am so scared that the remaining seven months of this year will go much the same as those sixteen limbo months, full of dread, apprehension, self-loathing and despair. I would have dearly loved a longer period of time without this hanging over me.

One week ago I was starting to prepare for the accessible-home-hunt, as things in my family home (which I was only ever supposed to be in very temporarily) are deteriorating. Now I can’t do it- not if there’s a chance I’ll lose PIP, and the Severe Disablement Premium with it. If that happens I’d have to move out again and back to here and that would take more energy and self-esteem than I could ever afford to give.

The Problem With Money Policing

05 Tuesday Apr 2016

Posted by in Blog, Disability, DWP

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When I deactivated my Ask.fm account over a year ago, in the face of multiple unpleasant messages (messages! not even questions!), I had naively assumed that the anonymous abuse would stop. I guess I forgot I had a blog.
There was the usual stuff about being fat, ugly, faking my disability yada yada, but in the blog comments there is also something quite specific to people who rely on state support to get by: money policing.

People who claim benefits are frequently subjected to scrutiny from the general public about where “their” (the taxpayer’s) money is going. Just look at comments on certain newspaper websites (or don’t, please don’t): any article about a family on benefits will have reams of comments underneath policing all aspects of their life from the flatscreen television to what they got their kids for Christmas, or their new-looking trainers, and whether the parents smoke or not. No one seems to point out that it’s more than a little difficult to get a cathode ray TV these days (never mind the fact that there’s no analog network any more), or that  these “luxury” items are often purchased on credit, or with the help of an unscrupulous doorstep loan company.  It’s not proof that benefits are too generous, it’s proof that even families in poverty want their kids to be happy on Christmas morning despite the cost, or to have the same as their more well-off peers. And the smoking? This seems to propel the commenters into an authoritarian frenzy; pre-paid “benefits cards” are a popular suggestion, redeemable only at supermarkets for “worthy” goods. Can you even imagine the exploitation possible here? Will one lucky supermarket chain will be chosen for the DWP’s partnership? What happens if a claimant is vegan, or coeliac, or doesn’t live near a supermarket, or is disabled and relies on home delivery (because I bet they wouldn’t let you use them on Ocado)? Not to mention the other things that people need aside from food: clothes, replacing broken appliances, kids’ toys….are tampons too much of a luxury? What about medicine? The bus fare TO the supermarket?

This brings us back to the problem of the public deciding what is a “worthy” use of “their” money. A cheque sent by my gran when I went away to university specifically had “not for raves” written on the back, but benefits aren’t a benevolent gift, they’re a payment that doesn’t depend on kindness but on eligibility. Once that money is paid, it belongs to the person who holds it in their account. But that doesn’t seem to stop members of the public weighing in what should and should not be done with it.
My luxury purchase (bought entirely with “taxpayers’ money”) will be a powerchair. A brand new powerchair because it’s the only one that will fit into the flat without removing the door-frame (and I’m definitely not allowed to do that). I had most of the money from a benefits backpayment but I needed help to raise the last quarter, so I set up a GoFundMe page (now closed, I met my target within 2 weeks).
It’s then that I realised someone was either on my Twitter or Facebook scrutinising it for things to complain at me about.

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Despite the accusation, I know I am not in poverty – not any more. Before January I was living well below the poverty line and had been for almost 2 years. Before I was approved for a travel concession I would exacerbate my condition by walking instead of taking the bus, so I could afford food. My own mother kicked me out because I couldn’t afford the tiny amount of rent she charged me (maybe I should have skipped the food?). I am well aware of how lucky I am to have a stable financial situation now, but the commenter seems to be shaming me for spending the money I now have.
It feels very strange to have to point out that seeing “The Manics” (twice) is costing me under 1/100th of the amount I put aside for the powerchair. That is an amount of money I can afford. I couldn’t (and still can’t) afford the target I set on the fundraiser within the time that I need the chair by. I don’t get how that’s hard to understand.
The more I catch myself justifying my spending the more I get angry with both myself for feeling like I NEED to justify it to the anonymous arseholes, and with the scrutiny that benefit claimants get over their spending in general.
Or even their future plans:

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(no I’m not writing my own abusive comments – they just seem to lack imagination)

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Heaven forbid I leave my flat and go out further than the nearest coffee shop, right? Oh, what? Coffee’s a luxury?
THIS is the problem with money policing. It starts with “no frivolities” and ends with “the bare essentials only”. Benefits don’t work that way. The DWP doesn’t calculate the bare minimum each individual needs to survive and award them not a penny more (though you could be forgiven for thinking that’s how it works). I realise I’m pretty lucky for someone in my situation. I’m not being charged for household bills, which means I have extra spending money (though I’ll happily forgo this in order to live somewhere actually accessible). I also have a part-time job under the permitted work scheme which the commenter doesn’t seem to have noticed me “regularly posting” about (which I do post about, because man I love grammar).They also haven’t noticed that before my benefits came in, after 18 months of waiting then the stress of an appeal, I didn’t do many of these things unless it was through my partners’ or friends’ generosity. Now I do have the benefits, I’m being policed over how I spend the money I am entitled to. I can’t win. This blog post might as well be called “The Pointlessness of Justifying Yourself to People”, and I might as well end by  saying, loudly:

What I spend my money on is my business and no one else’s. People who aren’t on benefits don’t have to put up with this money policing crap and neither should we. 

 

Malevolent Incompetence: a short post about the DWP.

24 Tuesday Nov 2015

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“It’s not enough that they’re cruel, they’re also incompetent with it and that makes it so much worse.”

My ex said that about the DWP sometime last year. I can’t remember over what, which is a worrying sign of how often they cause their victims stress and upset.
I’m still in pre-appeal limbo as far as PIP is concerned (occasionally sending them new and relevant letters from docs/specialists). But now my WCA has come up, and I’m having to try and deal with both benefits being “tested” at once.

My Work Capability Assessment was scheduled for the afternoon of the 11th of November. This didn’t happen. As soon as I got the letter with the date of my assessment, I called to request transport as it would be just too sensible for the assessment centre to be near an accessible station. I was told I needed a doctor’s letter for this. Fine. It took about a week and a half to secure an appointment, get the letter written up, and have it faxed over to the DWP, and then I called to see if it had been received. It had, but then I was told for the first time “We need three weeks to process it”. BUT I ONLY RECEIVED THE LETTER THREE WEEKS BEFORE THE APPOINTMENT DATE! They said they’d try to prioritise it, but the day before my assessment I was told that “it still hasn’t been checked by a medical professional”. That’s right, it requires a “medical professional” to read a letter stating that I can’t walk safely right now and can’t use stations without level access therefore can I please have a taxi to the assessment. My appointment was cancelled with authority, and I spent the day of the 11th a mess, full of anxiety and adrenaline built up for nothing, with no outlet, panicking that my new WCA and PIP appeal would be on the same day and both would therefore be cancelled. (DWP stress does interesting things to anxiety disorders.)

The DWP employee on the phone had been uncharacteristically reassuring, promising to phone me back personally when he heard any news of my rescheduled appointment. Any reassurance quickly dissipated from my mood when I got a form two swift and efficient days after my assessment should have been (how come they’re always quick with the bad things and not the things we need?). The form had questions (here paraphrased but not exaggerated): 1. Why didn’t you attend the assessment we had prearranged either by letter or by phone with you? 2. Why did you not let us know you could not attend your assessment as soon as you found out that you could not go?
The accusatory tone of the questions sent me into a spin. I felt like even though I could write “My assessment was cancelled by someone in your office on 10/11 because appropriate transport  could not be arranged in time”, the wording still made it sound like it was my fault, and as one of thousands of claimants flailing around in the huge system designed to fuck them over, why would they believe me? Anxiety through the roof.
That afternoon I got a phone call from Frank, the kind DWP employee. As promised, he had called to check up on me and update me on the situation. I told him about the form, and he told me it was an automated letter, in this case an error and not to send it back. Okay then, I had a minor meltdown over nothing.  Also would I like a normal taxi, or a wheelchair accessible one?

Another few days passed and Frank called again to tell me that I would have to be seen at Marylebone, not Neasden. But doesn’t Neasden have a lift? “Yes, but it’s policy that wheelchair users have to be seen on the ground floor.” Ah, so I’m guessing there’s a lift at Neasden, but no safety plan should wheelchair users need to be evacuated.

And now I have another WCA date. December 14th. I’m calling on the 7th to make sure there’s transport in place, and I’m calling Frank directly if not.

(Postscript: They forgot to send the taxi, any taxi. When a last minute taxi did arrive, it wasn’t a wheelchair accessible one either. Depressingly predictable.)

A Tale of Two Indignities

20 Sunday Sep 2015

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The first time my boyfriend came to my flat, I had to ask him to help me in the bath. He’d not had so much as a risqué picture message from me before, but here I was stark naked, with him gently manhandling my wonky body into the foamy water. He sat politely out of sight while I washed. Asking a new partner to help with something so intimate was daunting for the few minutes I deliberated over it, but when he turned up at the last minute in a bid to turn my bad week around with a night of films and food, and I realised I hadn’t washed in 3 days, I didn’t have much choice. In retrospect I think he might have been more anxious than I was.

It’s a funny story to tell on the surface: date turns up, girl demands bath. It’s less funny when you dig a little deeper. Since a major worsening of symptoms in December, I can’t bathe without at least having someone in the flat listening carefully, as I’m liable to faint in the bath, and I need help getting in and out on my worse pain days.  As I’ve previously written about, I am still trying to access Personal Independence Payments so there is just no money spare to pay for home care. I’m in contact with social services, but I’m still waiting for another meeting with my occupational therapist who seems to be my contact for all things useful.

This leaves me to rely on friends for now and it doesn’t feel fair on either party. But really, what choice is there? The choice between the indignity of being naked in front of someone who’s probably just as embarrassed by the situation – and throw in some body confidence issues too for good measure – or the indignity of not washing for several days. It’s the latter I’ve been doing lately, knowing that the next time my boyfriend comes over will only be a few days away. Dry shampoo and sink washes. There is no right answer, though. I worry that one day my brain will notice that I smell bad, that I’m wearing pyjamas in the afternoon, I’m not even trying to tidy my hair, and it will deduce that I must be depressed and then act accordingly. I worry even more now I’m having psychiatric appointments again, that unwashed hair and overcompensating body spray will by noted down as clinically significant (after all, my facial piercings were once used as a diagnostic tool, however [in]accurate).

I need to swallow my anxiety on this, and jump in. I’ve done it before years ago, in hospital. Evading being watched while washing on close observation order by having a bath with half a bottle of Matey poured in to protect my modesty. Maybe bubble-bath is the way ahead.

Why I Love My Fat Imperfect Body

15 Monday Jun 2015

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[Note: I wrote this a few years ago, reposted here from my old blog. I tried to be careful to leave out weights and details, but if you’re easily triggered with ED stuff be cautious just in case x]

First off, I just want to say that anorexia really fucking sucked. No matter how much I’d have insisted at the time that I liked feeling as if I was on the verge of fainting for most of the day, I really didn’t. I don’t much like the after-effects I still have 10 years on either. It wasn’t pretty, it wasn’t enviable; by the time I hit my lowest weight no one would have wanted to take my photograph for fashion magazines (excess arm hair and terrible skin aren’t much sought after). It started out like many cases do – a simple diet, possibly even a sensible one. I was fat. I’m not going to write numbers in here, because I know that’s not helpful. But I was fat at 16, by anyone’s standards. A lonely, depressed few years around puberty had meant I’d been comfort eating in a big way, occasionally binging and purging but mostly just binging. By cutting out junk food snacks, eschewing school lunches in favour of sandwiches brought from home etc, I was able to lose weight and finally see the benefit of my twice-weekly martial arts class. For a short while I was actually at my physical fitness peak. I got compliments from girls in my class on my appearance for the first time ever. Life, however, went sort of tits up. Family problems and mental health issues spiralled, and my diet was the one thing I felt in some way in control of (I’m using “control” loosely here. At some point I stopped being in control, badly). I stopped being toned, and started being thin. If my dad noticed, he didn’t mention it; he’s very British like that. My boyfriend complained about my ribs. I found it difficult to sleep comfortably because of my hip and pelvic bones. My periods became erratic, then stopped. I learnt how to throw up without using my fingers. If I hadn’t had short hair I would have noticed how much it was falling out. Numbers started being important. I didn’t just want thinner legs any more – I wanted to get down to the next even number on the scale. For an average student, fairly decent at a few things, being exceptionally good at shrinking myself became priority.
When I was 17 I had to move out of home. That’s for another blog that I probably won’t write (some things will never stop being raw). The stress of sleeping on friends’ floors, juggling college with housing applications, and still dealing with deteriorating mental health badly affected things and after 3 months hellbent on self-destruction I found myself hospitalised in an adolescent psychiatric unit (yet another future blog/novel…). While anorexia was not the main reason for this, it was made clear to me that I wasn’t going to get out of hospital without changing my behaviours. It was the first time I’d been forced to accept that I had to stop. I’d long since stopped caring that my boyfriend was upset that I wouldn’t eat. I’d stopped caring that my friend, who’d bravely taken on the role of  foster mum, was emotionally cut up. All I cared about at that point was destroying myself, even if it felt at the time like I was making myself a better (thinner) person. I remember writing a letter to a friend after I’d been in hospital for about 6 weeks, saying that this was the turning point; I’d thought of something funny while washing my face and grinned to myself in the mirror. I looked macabre. Skin stretched over bones, trying to mimic a smile. Something had to change after that. Putting it on paper, a proclamation to someone, that made it real. Six months later, I left hospital having gained about a stone. I’m notoriously stubborn, and had to learn to shift from stubbornly refusing to eat, to refusing to NOT eat, and refusing to let anorexia take over my life any more. Unlearning disordered eating habits sounds simple, but imagine that every time you prepare a meal, there’s a voice in your head telling you how many calories are in each slice of potato, each carrot stick. You get surprisingly good at maths. Before hospital, I didn’t have “safe” foods; no food was safe. In recovery I found a few foods I felt safe eating, and went on from there.

A book that I used to help with my recovery was Anorexia: A Survival Guide For Friends, Families, and Sufferers by Janet Treasure. Recommended by my therapist, this book appealed to me mostly because it wasn’t written by a former sufferer, therefore didn’t contain the details of their starvation regime (tips!) or details of their lowest weight (goals!), and there was no author picture of someone who’d made it out of anorexia while still retaining an enviable waif-like figure, unlike me, for whom recovery would inevitably mean (fat!) getting back to (fat!) where I started (fat!). The book taught me to think of the “anorexic voice” as more of a nuisance, an irritable demon clinging onto my shoulders, in stark contrast to the “saint ana” figure written about in numerous pro-ED blogs.

I’m not going to lie and say things were perfect from then on. I never relapsed badly, but getting back to a healthy weight took literally years. For a while I kept Ipecac in my bathroom in case of binging, but later threw it out in a fit of panic in case I had a black mood and drank it all.  A few years ago things were suddenly, amazingly, good. I had the realisation that I was more comfortable being a little bit overweight. Having curves and not giving a fuck. Obviously this is not an outlook that everyone will agree with, but when I was teetering between thin/okay I always felt pressure on myself to stay on the thin side. I keep a few extra pounds on now, mostly for emergencies, but also to say FUCK YOU to the occasional anorexic voices that come back to jeer at me for having “given up”. (When you’re in recovery they deal with the physical problems. No one warns you that you’ll still have internal monologues when you’re a healthy weight, even when you’ve been weight restored for a decade.) It goes without saying that I don’t own scales. I’ve learnt my body, and I know what’s comfortable. It feels good to write that. IT’S MY BODY. I don’t have to be thin. I can eat if I want to. I can eat WHAT I want to. I am back in control.

Zero Points – the PIP nightmare continues

28 Tuesday Apr 2015

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Zero points. When I first read the decision letter, I honestly laughed. Then I tried not to cry, and now I’m stuck in righteous anger mode (so apologies if this post is somewhat disjointed). But anger makes me productive, motivated.
Let me tell you how I got here….

It took me weeks to get my PIP assessment sorted from the time I was first offered one in March (after applying in August 2014). Initially they sent me an appointment for 8am – in Chelmsford. Since I’m in North London, this would have required me to get up at 4am to ensure I could take medication, get dressed, and leave the house in time to get the nightbus to the station for the first train. It wasn’t going to happen. I was allowed to rearrange the appointment for a more local centre, but missed it by 15 minutes – a broken lift at the “accessible” nearby tube station and a hellishly long walk to the assessment centre after already having done the station stairs on a bad pain day conspired against me. In the end I had to get Atos involved on my behalf when the DWP cancelled my claim, as Atos had promised me when I called them in tears from the assessment centre that they would send me another appointment. You’re only meant to be allowed one rearrangement, you see, and moving an appointment from another city entirely to one it takes under 4 hours to get to is counted as such.

The assessment, when I finally had it, left me feeling cautiously optimistic. The assessor was a nurse who’d specialised in chronic pain and had actually heard of Ehlers-Danlos Syndrome. He said he wouldn’t put me through the physical examination because he knew how painful the condition was.
Reading the decision letter over I can see now why there was caution in that mood:

“You said that you have difficulties with preparing food, taking nutrition, therapy or monitoring a health condition, washing and bathing, dressing and undressing, communicating verbally and engaging with others face to face. I have decided you can manage these activities unaided.“
It’s just a bit of a kick in the teeth isn’t it? I sat facing the assessor and told him that I’d managed to have a grand total of one bath and one shower completely unsupervised since January, meaning I often go for most of the week without a proper wash (ask me about that time I had to have my new bf to supervise me in the bath before we’d even seen each other naked!), and that I can only cook if someone is there to make sure I don’t fall (not to mention the issues carrying pans, chopping veg, opening jars etc). If I can’t get up on bad days, then I can’t get food, therefore I can’t take my medication. As for getting dressed? My partners learn quickly how to put tights on misbehaving legs. If I’m not leaving the house I just DON’T get dressed. It saves pain and energy.
“I have decided you can stand and then move more than 200 metres”
This was written without actually seeing me walk further than the short distance to the assessment room, on crutches, in pain. That is how I walk: in pain. He didn’t even want to see the letters I brought with me from the GP. Somehow I thought that was a positive thing.

So the next step is to ask for a Mandatory Reconsideration, and call a local disability service for more advice. I’ve checked with a few disability activists I know, and apparently being awarded Zero Points is fairly common – a tactic they use to discourage appeal (after all, it’s not even CLOSE to the minimum number of points needed for any award). It just disgusts me that they do this. I’m angry, and anger makes me want to fight it. Many other people in my situation may get depressed, disconsolate, feel helpless and abandoned. They do not fight. I’m angry for them. This system is incredibly broken if it thinks that only those who are strong enough to fight the decision made against them “deserve” help.

The *click* of sexual harassment.

01 Sunday Feb 2015

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Oh blog, I had such hopes for you. I will write once a week, I promised myself. Even if it’s just sketchy poetry. Then a fatigue crash happened in late December and I currently struggle to piece two coherent thoughts together one after the other, and don’t even try linking them eloquently. I will come back to this properly, it might be a winter darkness thing, or it might be the Mystery Heart Condition or just “hey you have chronic fatigue, this is just what you do”. But I’m not abandoning this one, even if I’ve already taken a small leave of absence.

I’m here today to rage about insidious sexual harassment.
It’s not easy for me to leave the house right now. It requires forward planning: estimating my energy levels, timing painkillers correctly and working out which of London’s many stations are accessible enough. I failed on the last front yesterday evening and found myself changing trains at Finsbury Park – which necessitated climbing a flight of stairs. I do not generally do well on stairs, it’s usually slow going and often painful and I’m concentrating hard on both coordination and not passing out. Still, I recognise the click of an iPhone camera when I hear it.
That’s a bit odd, I think, who would take a selfie on the stairs at Finsbury Park?
Then it hit me, as a man pushed up the stairs past me, with his phone in his hand, the screen still set to camera. That man has just taken a picture of my arse. Or up my skirt. 

There is a control room at the top of the staircase where the North and Southbound passages intersect. I fully intended to be late to meet my friend in order to report the guy right then and there, but as I reached the top of the stairs I realised he was right there, leaning against the wall of the tunnel, looking at his fucking phone and I got so freaked out that I just got the hell out of there as quickly as I could manage.
Once I was at the pub with my friend, I couldn’t get comfortable for a long time. The idea that some stranger had taken a photo of me without consent for sexual gratification made me feel really gross and upset and anxious. It felt like a part of me had been taken without my consent.
I started fretting about going home and going back through the station, and eventually asked my friend to come back with me. Having him there made me feel brave enough to stop at the control desk and tell them what had happened earlier. They called the British Transport Police and we were taken to the station next door to make a statement. It’ll go down as intelligence, so they can build up a pattern of this guy if more people report him, if he’s a repeat offender for this kind of thing.

I feel the need to stress the importance of reporting even minor harassments such as this if you feel able to. The trend for photographing women without their consent is really disturbing – from numerous Facebook groups for posting pictures of women in nightclubs (“Sluts Embarrassing Themselves” famously took weeks to be closed), to Women Who Eat On Tubes (misogynistic AND food shaming!) and it’s totally media-endorsed – how can someone taking a photo of me be any different to a paparazzi photographer shoving their camera up the skirt of a young actress as they get out of a cab? We’re viewed as public property. We’re on show, so why can’t people take home a souvenir? I’m incredibly pleased that it’s being taken seriously by the police, even if it’s not a serious crime. It’s insidious, creepy. Most women who are photographed like this probably don’t even realise it’s happened at all – even when the cameras make noise it’s hard to hear when you have headphones in, or when there are lots of people around.

I’m just thankful that I probably won’t be travelling that way through Finsbury Park again, thanks to the stairs.

(It’s worth noting that up-skirt shots were apparently such a problem in Japan that you cannot silence the shutter click at all on Japanese iPhones, and there’s no in-camera mute function on any iPhone.)