Category Archives: Mental Health

Lockdown Privilege?

17 Friday Apr 2020

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So it’s been almost a month of lockdown in the UK, and we’ve been told there’ll be another three weeks on top. No socialising with those outside of your household, essential travel only, no unnecessary trips outside. Many people I know are struggling with this, missing friends, their social lives, even work. But me? I feel in a weirdly privileged position because not very much has changed for me at all, if anything things are better than they usually are. I don’t know if that’s more fortunate or a sad indictment of my normal daily life.

I’m feeling fairly mentally resilient at the moment –  this is a situation that I am not only prepared for, but thrive in. Because of my varying health I tend to only leave the house a few days a week, not usually to socialise, but often just to write, or read newspapers in the coffee shop as I find it easier to concentrate out of the house. Replacing the coffee shop with a Nespresso machine was fairly simple, a bit harder to find my motivation though (more on that in a bit). My quizzing life, too, has been almost seamlessly replaced with an online league via Zoom, which has zero accessibility issues for me unlike most of the venues we quiz in normally. I’ve been out a few times for rolls around the neighbourhood – not “exercise” but arguably good for mental health and vitamin D levels – except the fear of contagion slightly diminishes the mental health aspect, so I have invested in a hammock for the garden so I can enjoy the sunshine secure in my safety.

 

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A rather nervous roll around the neighbourhood.

 

Self isolation means a lot of people are spending more time on their own than they ever have before, but for me and Chris, my partner, it’s been a sudden cohabitation simulation! He knew I wouldn’t be able to physically cope on my own for however many months we thought this might last, so just before the lockdown was announced he went back home and packed a bag of clothes, cooking ingredients (yes really!) and his Apple TV plug in. Unlike normal life, where I mostly rely on ready meals, I’ve been having fresh home cooked meals every evening and company for most of my waking hours. I’m so used to being alone for most of the time, it’s both weird and lovely having him here all the time like this.

Lockdown has made me feel a little pressure to *do things* while it’s on, a sort of pretend deadline since I don’t actually have a job or commitments to return to when it’s over. I’m ignoring the existential doom of the latter fact and enjoying having some structure via activities which I will definitely carry over to my normal life: Duolingo (picking up Hebrew again after having to drop out of my postgrad course); planning out short stories  after maybe 10 years since I last wrote fiction; and photography – earlier this week I had an email from the editor of the local independent newspaper asking if I could go and take some shots in my area of pictures and messages of hope people have put up in their windows, which I was more than happy to do. At normal post-work rush hour, the streets were nearly empty of people or traffic, and the air smelled like grass and trees, not of car fumes.

There is a down side to lockdown life, even for quasi-hermits though: everything medical has been pushed back months, if not more. It’s understandable due to the unprecedented situation, but when I’m still having allergic reactions to unknown triggers, and the deteriorating hip situation was only very slightly ameliorated by a new mattress, the fact I likely won’t see either the allergy or pain specialists this year again is frustrating. I’m still talking to my GP about managing the allergies/MCAS?/whatever is going on with that, but still have a whole list of tests at the allergy clinic to get through that can’t be done over the phone. Ditto with finding an effective regimen for breakthrough pain. I have waited years for treatment before though, I can grit my teeth and wait again.
However, one long delay has made me feel rather lucky despite it being a major bugbear for the last few years – housing. Self isolating in my dad’s large, airy ground floor flat with garden access (and, notably, without my dad!) is far easier than I imagine it would be in wherever I move to next, where I don’t expect I will have a garden of my own or anywhere near as much room to temporarily cohabit in. So I guess I can be wryly thankful to the council for their mismanagement of my housing case up until now.

I’ll sign off with this picture of me being a pod-person. I hope you’re all keeping safe and doing okay!

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cosy in my cocoon

 

the intersection

22 Monday Jul 2019

Posted by in Activism, Blog, Disability, health, Mental Health, Uncategorized

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I’ve spent the last few years insisting that my worsening physical health isn’t impacting on my mental health; that maybe occasionally my brain will mistake not leaving the house for days at a time for depression and slump accordingly; that I don’t grieve for the abilities I’ve lost. I find denial a powerful coping mechanism, but one that only lasts so long.

It’s not that I never get a bit sad about losing my physical abilities. The other night I dreamt I had learned how to click my heels in midair (apparently it was to do with having the right – possibly magic – shoes), and woke up feeling rather wistful, despite not having been to a dance lesson in years . Social media constantly throws up reminders for me of what I used to be able to do – climb a mountain, walk a marathon, stay out all night, walk to the end of the road unaided… I tend to view these prior accomplishments without sorrow; I’m just pleased that I did them while I was still able to. Of course, if I’d known that everything would go so, so wrong before I hit 30, then I like to think I would have done a lot more. For five years in my adolescence I lived on a lake, and can count the number of times I took the canoe out on my fingers. As much as I wish I could go back in time and shake up my sulky 13 year old self into going outside on a bright spring day, instead of spending the day lounging on the sofa with a book, I know that it won’t change the now. At least I have done things, I think. At least I’ve been to places that I couldn’t manage now. I just wish I’d done a little bit more.

But it’s not the physical loss I struggle with. Whether as a result of fatigue, brain fog, lack of ADHD meds or a combination of the three, my ability to sit down and write something longer and more convoluted than a tweet has all but disappeared over the last year. I feel like I’ve hardly done anything in the realm of activism or awareness so far this year – which is slightly unfair as I did write one article and collaborate on another, but it’s hardly the height of productivity. Almost six months characterised by notebook pages and blog drafts with ideas, starts, first paragraphs – and no energy or drive to continue with them.

I have always put more value in my intellectual abilities than my physical ones. As a clumsy, easily-injured child it made sense. Not that I was particularly good at school either. My parents pushed me to work hard (I didn’t) and get good grades (ditto) and I’d throw myself into things that I liked and do the bare minimum with those I didn’t. This is what’s so distressing – I can’t throw myself into my passions as readily as I used to be able to. Thinking through fog I can get a few sentences down, then when I come back to it a few days later or when I’m next able to, the flow is gone. Writing my way through chronic illness and disability has been an invaluable outlet in the last 5 years, and has led to some amazing opportunities, and without it I feel utterly useless, my power centre taken away, my saving grace gone. My self worth is so tied up in my productivity, even my adjusted-for-illness productivity that without having something to be working on, no matter how small, I feel like I have no purpose.

The fog has lifted slightly today, so I’m taking the opportunity to get this down before I lose my train of thought or get too tired. I need to write more, I know this, and write more without worrying about form, readability, coherence. The important thing is that I do write my experiences down, not how well written they are. It’s another mental block to get past.

 

Further Adventures in Bureaucratic Incompetence.

10 Tuesday Apr 2018

Posted by in Blog, Disability, Housing, Mental Health

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Will I ever share good news to do with housing? Well, one day I hope to but today is not that day. When you’re dealing with a department as shambolic, uncommunicative and Kafkaesque as the council’s housing department, you have to cross your fingers and pray that all other agencies involved are on the ball. That appears not to have happened.

This afternoon I spent 40 minutes in an airless back office that smelt of feet, waiting for the results of the Great Bureaucratic Incompetence-Off. I knew that the council had sent a form (plus a freepost envelope!) to my GP back in October – I knew this because it had been put into the system shortly before I had an appointment in November, and the GP I saw had told me her colleague would be doing it soon. I also knew that it was now five and a half months later, and I had seen zero progress as far as housing went – but also that sometimes the council needed something akin to 20,000 volts up the arse to do anything with the information they themselves had requested. However, an afternoon at the housing office is only slightly more preferable to one spent having a filling without anaesthetic, and I assumed that finding anything out from the GP’s office would be somewhat easier than dealing with staff at the housing office (you know those characters in videogames who have important things to say to you but you can’t ever work out the right thing to make them say it?). I guess in retrospect 40 minutes in an eau-de-pied office surrounded by broken blood pressure machines was better than [time doesn’t actually exist in a housing office] the alternative.

“There’s a queue, dear”, said the receptionist, when I asked her to look up the letter on the system, and see if anyone had “actioned” it (arrgh, not a verb, I refuse to accept it).
I was aware there was a queue, I had waited in it for 10 minutes, and now I was at the front of it. “Can’t you come back another time?” Mindful of the ‘aggression will not be tolerated’ rules laid out on laminated pages on the counter, I aimed for ‘snippy but polite’ and pointed out that there was always a queue and by the standards of queues I’d been in there, this was quite a mild one. Five minutes later I found myself guided to the back office by the reception manager, and left for 20 minutes or so while she tried to find out some more information. She returned holding the sheaf of printouts that the first receptionist had handed to me 20 minutes ago. No, nothing had been done with the forms since they arrived in October. For over five months I sat at home like a lemon (again!) assuming someone was doing something with the information I had given them (again!) but instead the Thing That Needed Actioning (argh!) was sitting in a to-do pile in another dimension (again!)*. She left again for a while, and came back to offer me an appointment to fill the form out tomorrow morning with, awkwardly, the same GP who told me that her colleague would be doing the form five months ago.

(*) If this sounds depressingly familiar, it’s because it is. From January til June 2017 my housing application for impending homelessness sat in an unattended inbox until my friend (who is a housing support worker, but not for my council) badgered them into finding it and starting the process. So that makes a grand total of 11 and a half months of unnecessary delay out of the 15 months since I submitted my application to the council. Should I have sat around for both delays, waiting for them to get this far without chasing anyone up? Of course not! – and that’s where the paralysing anxiety comes in, and the depression that makes me too miserable to even think about housing, and the fatigue that prevents me from being in any way useful most of my waking hours. Basically, all the things that will go on that medical form tomorrow. It took until today for me to feel okay enough to ask about the letter; it’s nearing a miracle I still have the energy to write about it after.

THIS is why I need an advocate, a support worker, a someone who can do the chasing-up and checking-in. It’s not me trying to shirk responsibility for my own endeavours, but trying to ensure that I don’t fall between the cracks again. Because I have, due to the aforementioned assortment of brain kittens and body woes. When I do speak to people about it, their assumption is often that I’m trying to weasel out of doing my own work; I’m educated, well spoken, on paper I should have my shit together. In reality, I’m holding the cracks together with jam. However, I have a vague plan: tomorrow I see the GP to do the form and at the same time I will ask if she can refer me to somewhere. If I have no luck there, I see my therapist on Thursday. If no luck again, the CAB (so, somewhere around 2019 when I’ve built myself up to it….)

I’d just really love for every step in this torturous process not to come with its own obstacles. NOTHING about the housing process so far has been anything less than frustrating. At this point, “frustrating” would be a vast improvement.

The Resolution Solution

03 Wednesday Jan 2018

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I tend to make the same New Year’s Resolutions each year: read more, write more, do my physio, wear my bruxism mouthguard, be happy with my body shape and size as it is. This year I’ve also resolved to start swimming again (aim for once a month), and see my mum more (again, once a month would be a great increase). I try not to  see them as firm resolutions as much as goals it would be nice to achieve, but even this softening of the term doesn’t stop me sometimes being hard on myself when I don’t manage to keep them up, even though it’s ill health and not laziness or lack of willpower that causes this. Depression stops me enjoying books, which are, when being read, my greatest joy; writing is hard to focus on when fatigued or in pain, or when the brain kittens are playing; the mouthguard hardly got worn at all in the first 10 months of last year thanks to a rogue wisdom tooth.

So, this year I’ve decided that in addition to my standard well-intentioned resolutions, I will add another: I resolve to try my hardest not to be angry with myself when health, physical or mental, prevents me from keeping a New Year’s Resolution, or an appointment, or a social event. All being angry with myself does is encourage me to wallow in self-pity over my shonky collagen and propensity to sadness, and I’m not a fan of self-pity when it comes to things I cannot change, where I cannot turn that self-pity into dogged determination. If I only read 16 books again, as I did last year, so be it – at least I read some books. If I only wear my mouthguard every few nights, that’s better than not at all. One thing I am determined to stick to, though, is the writing. One of the reasons I set up my Patreon page was to give me an impetus to write, if not to a schedule, then at least with greater frequency. But, if  my health gets in the way of even that important goal, then I will try to remember the last and most important resolution for this year.

 

 

Reasons To Be Fearful I – People

07 Tuesday Nov 2017

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Some disability-related writing I was asked to do is going to be published in a national newspaper soon. I’m excited, proud, all of the correct emotions, but I’m also a bit scared. Scared because putting my head above the parapet can draw more attention than I wanted, and the wrong sort.

In 2015 something bad happened. Every socially anxious person’s worst nightmare, and I lived it, for months. Friends unfriending, blocking, ghosting, and worse – being talked about, lied about, with no way to see what was being said. Strands would reach me from time to time, each time more exaggerated or fictional than the last. At my darkest points, I pictured it like a virus infecting every aspect of my social life, every group I was affiliated with (after all, everyone is connected these days). I wrote blog posts in my head daily, of what I could say to try and control the narrative, but always resigned myself with the fact that trying to do so would make things worse. Which is why I’m not doing so now, in fact. I’m still too anxious. But this is where being in the public eye comes in. I started to notice a pattern back in 2015, small but defined. When a blog post was shared around, or lots of people retweeted one of my tweets, I would have a drop in followers. It seems exposure led to a backlash, as some people made it their civic duty to tell others to unfollow me because of what they’d heard . It was hard to swallow, but I would eventually, after months of self loathing, tell myself that people who believed rumours about me weren’t worth having as friends or acquaintances. Sometimes I even believed myself. Even though it’s boiled over, now I’m getting more exposure for activism and writing it’s making me anxious in case it starts up again. The fourth? fifth? whatever wave of it I’m up to now. In a way I feel I’m more able to cope. My friendship groups have comfortable, equitable dynamics, and I’m not going through social destruction at the same time as trying to fight for the benefits I need to survive (2015 was not a good year).  But, all the same, despite being a stronger, more self-assured person these days (at least to an extent), I hope fervently that actually getting a readership won’t lose me friends. I hope the friends I have now know me well enough to know my principles. 

(An alternative take is I Survived Every Socially Anxious Person’s Worst Nightmare and that in itself is amazing, but I won’t lie and say it doesn’t still affect me. I can’t talk about it without crying. I avoid certain venues and events in case of seeing specific people. I can’t make a new friend without trying to work out how if they’re socially connected to anyone involved, and if they could already have heard of me in a negative way. And I am incredibly, incredibly scared of having an argument with any friend, or being read the wrong way. I screen cap conversations that I worry could come back to haunt me, for fear of being gaslighted again. But mostly I’m just thankful that I didn’t give up entirely, or failed in my attempt to, because it did get better. After nearly a year it died down, and I sat in the ashes of my self esteem and rebuilt from the ground-up.)

Lost Days – A Post About Hypomania

08 Monday May 2017

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[For Mental Health Awareness Week here in the UK, I thought I’d write about something less obviously damaging to those who don’t have to deal with it.]

Like many people with mood disorders, I have marked periods of ups and downs. While it’s true that at the outset, the ups are fun and the downs are terrible, things aren’t so black and white in reality. My own extreme moods tend to last for days or weeks, but some people, such as my aunt who has bipolar disorder, can spend months in such a state – when she is “high” she needs to be hospitalised and have her medication adjusted,  not just to level her mood, but to cushion her as much as possible for when the inevitable rebound low comes. I’m lucky that my own periods of extreme mood are far shorter and with longer periods of relative stability in between,  but my hypomania (as opposed to the full-blown mania suffered by my aunt) still leaves a trail of destruction – money spent, hours thrown into projects I will never complete (or even understand) afterwards, and the inevitable mental fallout… let me give you a typical example, which happened last month:

One day in the middle of April, I received two pieces of good news about my disability activism. I quickly made a happy Facebook post, and enjoyed telling a few friends specific details. Hours later, I was still bouncing with excitement. My mind was making up endless scenarios that could come from this news, leaving me unable to concentrate on anything. I definitely didn’t feel like sleeping, so I didn’t. I stayed up and wrote more. I read Wikipedia before going to sleep for a few hours around 9am the next day. That afternoon I got up, and went on the internet, but I didn’t feel productive and excited any more, I felt uncomfortable and jittery, like I’d had too much coffee. I opened tab after tab “to read later”,  because I couldn’t concentrate. I talked a lot, to myself. The phone calls I was supposed to make were never done, because I felt too anxious to talk on the phone, too anxious even to read all the tabs I kept opening. After staying up all night because I was too scared to sleep when it was dark outside, I took some melatonin in the late morning. Later that 3rd day, I got up and dressed and went across London to see a friend. I felt much calmer due to the groggy after-effects of the melatonin, but when our conversation touched on certain things, I became overexcited and then angry at myself for being so.  Five days after it started, the hypomania fully tapered off and I was on a fairly even keel again, but left feeling disorientated as if I’d been away for weeks and was panicked about what I had left un-done in those few days. The heightened anxiety took a bit longer to abate.

Last month’s hypomanic episode only left me with extra calls on my to-do list, a week of emails in my inbox, and 24 open Wikipedia tabs to read, but there have been much worse repercussions – like a relationship I knew I shouldn’t have entered into. When I lived in France as part of my degree course a few years ago, I got a bit depressed in the last months as I was quite lonely. I started talking to a guy online in London, and the prospect of meeting him made me really excited to be home again. TOO excited. If I had not been so high, I might have considered it a very bad idea to get into a relationship with someone with a serious eating disorder (and in serious denial about it) as well as grandiose ideas about creativity to match my own at the time. But I was high, so at first we were MAGICAL! We made joint art projects, took photographs on London rooftops at 6am, made up songs and sang them in comedy clubs…I felt like together we could change the world (to be honest, that should have been a warning sign). It was a rough ride as I slowly tumbled back to earth, and the thread of anxiety running through our whole relationship started to entangle me, leading to self-harm, self-hatred and self-doubt. Even though that lengthy hypomanic phase introduced me to one thing I still enjoy (comedy performance), it also brought me to the end of my overdraft and left me with the fallout from having been encouraged to diet and to reduce my medications by someone I had idolised. The subsequent depressive episode was the worst I’ve ever experienced, although it was about 5 months until it appeared. Whether its severity related to the long high or not I don’t know, but it felt like I’d fallen miles into the ground after being high above the world for so long.

I often find it hard to tell whether my mood is changing to the extreme. Like last month, a hypomanic episode might start out as excitement, then before I know it it’s taken over and all I can do is ride it out. Hypomania isn’t just “being too happy”, other emotions are heightened – anxiety, annoyance, and impatience are the ones I find also get turned up. Although I’m still working out how to spot warning signs, I am aware of one definite trigger for my own highs, and that is music. I love music – doesn’t everyone? It’s been a huge part of my life ever since someone shoved a tiny violin into my hands when I was 4 years old. These days I tend to listen more than I play, but I’ve learnt to be careful what I listen to. Too much of a favourite band, or a particular album, might set me off and I’ll spend the whole night listening to music, maybe ranking different versions of songs, or analysing scores and lyrics for comparison, as if searching to prove a scientific theory. One night I made several friends listen to “Maria” from West Side Story then Tchaikovsky’s Romeo & Juliet Fantasy Overture to prove to them that Bernstein had used a motif from the earlier piece as inspiration for one cadence within the later song’s chorus. Even if you don’t know music terminology you’ll recognise that that is obsessive behaviour, and that’s something that I often fail to spot in myself until I am too high to come down again – usually I don’t realise I’m in a hypomanic phase until I’m tired and anxious and unable to calm myself (plus stopping to think “Wait, am I high?” before embarking on a project can be somewhat creatively stifling). However, with the help of my partner, who has learnt to spot the warning signs, and friends who have had to learn not to encourage my music-based ramblings, I am slowly becoming better both at managing hypomania, and at nurturing my creativity in a safer manner.

Six Wasted Weeks

01 Wednesday Mar 2017

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(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.

(Lack of) Housing progress.

20 Monday Feb 2017

Posted by in Disability, Housing, Mental Health

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Just over two weeks ago I posted a tweet asking for help finding accessible rental accommodation in London. It was retweeted over 240 times, and garnered no replies.
This isn’t a damning verdict of community spirit – it’s a damning indictment of the lack of actually accessible properties on the rental market, and subsequently why, 6 weeks after beginning my housing search due to impending eviction, I have made exactly zero progress.

In terms of looking for private market property, I have used every website I can find. First off, I tried the site which has ostensibly taken over for the Accessible Housing Register, which currently lists a grand total of ZERO accessible properties available to rent inn the UK. So, onto the non-specialist sites. Disappointingly, NONE of them have any filters for accessibility – even dssmove.co.uk, which lists only properties which accept housing benefit – which means I have to search for listings mentioning “wheelchair” and see what comes up (usually not much). (Searching  for “accessible” will bring up red herrings as it is often used in context of local transport.)  Another method is to look for buildings with lifts, or ground floor flats only, but again there is no guarantee that this means they are wheelchair accessible. I have sent a multitude of messages to property agents about places on the market – checking either DSS allowance for those which are accessible, or wheelchair access for those which do accept DSS, or both – and the few replies I have had so far have been negative. I have, however, been signed up to numerous unsolicited mailing lists.

On the non-private rental side of things, progress has stalled. The meeting with my key worker at the Personality Disorder service, in which she promised to put me in touch with the department’s social worker to help me navigate the council, was over a month ago and since then I’ve heard nothing either by phone or post. I went to the middle-of-nowhere hell that is Enfield Council’s housing department and gave them my doctor’s note, so hopefully they won’t discard my application in the meantime. My other option is a specialist Housing Association. The only one I’ve contacted and heard back from is Habinteg- I was accepted onto their waiting list last year, when my housing situation was simply “undesirable” and not “6 weeks away from eviction deadline”. It took me a while to build up the nerve to contact them, by phone, and I was told to email them instead. That took me over a week, the anxiety of response made worse by the disinterested person on the other end of the phone. Then I got this back:

habintegreply

[Good Morning,
Thank you for your email.
As stated in our Lettings Policy, we are unable to state accurately when we shall be able to help you, but I do assure you that your application will be given full consideration when suitable vacancies occur in the future.
Any information provided to support your application will help us to determine your priority of need in terms of housing, as we allocate properties on the basis of priority of  need, applicants do not move up the list,  and we are not able to guarantee to be able to offer properties to all applicants that have been added to our listings.
Regards,]

No contact name given, not even a mention of my name. I am pretty sure I was given a template response. I’m not even sure anyone read my original email stating I was facing an eviction deadline. After another few days of fretting, I’ve sent a copy of the eviction notice but I don’t expect more than another pithy email possibly telling me that it was insufficient evidence. I’m trying not to get utterly depressed at the probable loss of what was, at the start of this anxious period of my anxious life, my best hope at being suitably housed.

Update 21/02 – I have received an email from Habinteg informing me that my emails and evidence have now been forwarded to a Housing Officer. Whether or not this is so they can tell me the same thing, I’m not sure.

As the days count down to the provisional deadline of March 31st, my mental health is piping up again. Last night I had the first seizure I’ve suffered this year, and the first in at least a few months. I’ve begun dreading the evenings and nights again, in case of the Sudden Desperate Sads which lead easily to desperation, dissociation, or worse. I’m waking up anxious, staying anxious, until it turns to depression as the day wears on. I know this is when I should be calling the PD service key worker, but the lack of contact I’ve had from them since the Crisis Week means I’m incredibly anxious about doing so.

PIP – my recurring nightmare

17 Monday Oct 2016

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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.

Left Hanging – a letter of complaint

21 Saturday May 2016

Posted by in Blog, Mental Health

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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,

I would like to make a complaint regarding the mental health trust.
I had an assessment with [specialist] in early December 2015 about the best options for therapy, how to go forward etc. At the end of our appointment he gave me some resources for self-help while waiting for therapy to begin, including a card for the CRHT (Crisis Resolution and Home Treatment Team) to use in emergencies, with the [local area] number circled on the back. The front of the card clearly states “The team will see you 24/7 in the community”.

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 would appreciate it if you could reply to this message, as it is not an easy thing for me to make contact.
Yours faithfully,
Nina [Childish]
I feel rather silly complaining two months after the event, but also feel much better for having sent it. The kicker is, I have another really quite serious complaint to make about the same CMHT which I’m going to address in person at the start of next month. Two complaints already and therapy doesn’t even start until June…
[edit – sorry, no idea what’s happened with the formatting]