(CONTENT WARNING: suicidality mentioned, eating disorders, mental health, unreliable therapists, sleepless rambling)
One day I want to write a post about the housing saga and have it be a POSITIVE one. I really do. Today is not that day.
It’s been 6 weeks since the hospital’s crisis team discharged me back to my regular department. During that handover meeting, my key worker (who I was meeting for the first time) promised me she’d set up a meeting for me and the team’s social worker with the aims of helping me navigate the council’s housing system without such a catastrophic effect on my mental health. The kind that saw a return of bulimic behaviours I haven’t had in 10 years. The kind that had me shaking and sleepless and suicidal in my GP’s office on a Saturday morning three days beforehand, with no idea where else to go to try and get help, desperate to stop myself from doing anything reckless. (Actively trying to prevent the loudest 20% of your mind from taking over the anxious insecure majority is a strange feeling.)
I went home feeling like the cork was just about jammed back into the bottle, aware that it would be very dangerous to let the pressure build back up again.
So, since then I’ve waited. For six weeks. In the meantime having no luck with my other housing options (see previous post). Mental health up and down, nothing as bad as it was when the crisis team had to get involved, because of the aforementioned cork keeping my distress gently bubbling away on the inside. Literally holding out for the help I was promised.
Today I left a voicemail with my key worker, chasing this up. Two hours later the social worker called. “K has just told me about your situation….”
I had to ask her if she meant “…for the very first time”. Yep – Just. Told. Her.
If I hadn’t called, how long could I have been waiting for this meeting? I have a horrid feeling the answer would have been indefinitely.
If I wasn’t so tired I’d be absolutely furious. I AM absolutely furious, but the tiredness means it’s coming out as defeatist sighs and the frantic need to write this all down before I fall asleep at the laptop.
I’m pretty sad too, though. I don’t find it easy to trust people, psych professionals even less than most, and I’ve already lost a huge amount of trust in my new key worker. I know that mental health services are getting cuts all over the place, everyone’s so busy and overworked, and she probably genuinely forgot. The problem is there’s a human impact on the other side of the safety glass. My life can’t be put on hold right now – I’ve wasted 6 weeks waiting, and my provisional deadline to move is now a month away.
The social worker said she would text me some potential meeting dates. I’m not letting myself hold out much hope of that without another prompting phone call. I’m also very glad that anxiety over being forgotten about is overriding anxiety about making phone calls right now.
My PIP assessment results arrived over the weekend. I’ve been awarded higher rate care component (as before), but also higher rate mobility. This is the part that enables disabled people to lease adapted cars, if they wish. Right now neither C nor I can drive so I won’t be using it for that, but the extra money will definitely be helpful right now. It came as a massive surprise – I was expecting to get nothing for mobility again because I can walk a small amount with crutches. Is this the one time they took “safely, repeatedly, reliably” into account?
Also, amazingly, I don’t have to be reassessed until 2020. That’s almost four years of not panicking over it, unless someone reports me because they saw me standing up from my wheelchair. I don’t trust the abled public not to be vindictive arseholes almost as much as I don’t trust the DWP not to send letters to terrify us just for shits and giggles.
And that’s the good news.
The other sort-of-good news is that I filled in the Council’s homelessness help form and I “may qualify for help”. Heartening. Now I have the next form to fill out, which I’ve already done (albeit before being given an eviction date), and it’s coming up on a year since they received it and I’ve still not heard back…hmm. Hopefully they’ll let me submit another one.
In other trying-to-prevent homelessness stuff, I’ve been looking on various websites for places to rent (with housing benefit) and one thing is standing out to me: nowhere, including dssmove.co.uk, which specialises in properties which accept housing benefit, has an option to search for wheelchair accessible properties. I did find a website claiming to list all accessible properties available to rent or buy in the UK but when I checked yesterday they had precisely 0 properties that met my conditions (to rent, in UK).
- My therapist has left the CMHT, which would be sad if I’d heard from him at all (aside from his farewell voicemail) since September. Still no word on when BPD group sessions start, so chances are I’ll have moved out of the catchment area by the time that happens.
- Still no joy getting a gut specialist appointment because I need to submit a stool sample first in case my obvious gastroparesis turns out to be H Pylori (hint: it isn’t). Trying to produce a stool sample with gut dysmotility and a stomach that won’t empty, at the right time of the morning to rush it down to the GP’s surgery… let’s just say it’s been *months* and it hasn’t happened. I asked my GP for a blood test instead and the hospital threw it away as they “only test stool samples”, and breath tests are only done on inpatients. Hell’s bells…
- It’s still my job to keep calling Stanmore and finding out whether they have reopened the waiting list for the pain rehab program.
- New GP seems fairly disinterested in helping me to find an accessible dentist or referring me to the hospital’s community dental clinic. Must push.
- Occasional suicidal ideation, mostly when I think about being placed in temporary housing – specifically B&B/hostel type places like when I was homeless at 17. I remember the fear and the desperation, and my brain goes “better kill yourself before it happens again”. No brain, stop it.
I’m using a lot of distractions this week. Mostly Poirot.
“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.
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.
[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.
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],
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.
I have had the same few items languishing on my to-do list for 2 months. I just scored one of them off by emailing in a complaint to the CMHT exec. In a way, I think it might have been easier had it been a phone call. Anyway, I finally did it.
In March I called the home crisis team number I’d been given for emergencies. It didn’t go well….
To whom it may concern,
Late on Saturday March 12th, I had a dissociative episode, and worrying that it would get worse and I would hurt myself, I called the circled number. Due to my anxiety,and especially compounded when dissociating, I am not great on the phone. The person who answered it (I can’t remember if they gave a name, but they were female) kept mishearing me or misunderstanding me, which made my dissociation worse (at one point she seemed to think I had children, and asked if they were safe). After a frustrating attempt to describe dissociative symptoms while dissociating, during which I was accused of not cooperating because I said I wasn’t feeling anything, I asked to see someone from the crisis team. It was then I learnt, for the first time, that in order to actually see one of the team, a “service user” must be pre-referred for community support, so all I could have was the phone call, which was making me feel worse. (In the end I hung up because I was scared it would push me past being able to recover that night.)
My complaint is that at no time before I needed to use the Home Treatment Team was I told that I needed to be pre-referred before I would qualify for home visits. Since a “service user” is unlikely to call a crisis number unless they are actually in acute crisis, this seems like a very risky policy. In my case, it made my acute mental health crisis worse to find that out after being further agitated by invasive questioning and allegations during the phone call.
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.
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.
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:
(no I’m not writing my own abusive comments – they just seem to lack imagination)
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.
“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.)