Tag Archives: depression

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.

Where Are All The Accessible Properties?

31 Thursday Aug 2017

Posted by in Blog, Disability, Housing

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I came back from 10 days away to no emails from the council after our visit there a couple of weeks ago. The friend who is acting as my advocate sent them an email when I told him this, and got a quick reply that I should soon be able to look for private rented accommodation in the borough, then use their scheme to cover the deposit. Ignoring the fact that I should have been sent this information as soon as I had been approved (with J cc’d), the deposit is not what I am having problems with, as my dad has already offered to pay it (a small but arguably fair recompense for evicting me). The problem I am having is with finding suitable rented accommodation in the first place. Heck, it’s what I’ve been trying to do for the last several months! I was told first in June that I’d have to look for private rentals because the council itself did’t have any accessible properties on their books, but I only went through the council because I was having trouble finding any affordable accessible properties in the whole of London; limiting my search to one borough, even to properties that have agreed to house council tenants, seems doomed to fail. I’d optimistically hoped that if Enfield Council didn’t have any suitable properties then maybe they could refer me on to another council that did, or a housing association that the public can’t access independently.  Enfield do have a housing association that works with them, but I’m still waiting to see if I’ve been approved for referral. If I am, then I will have to see if they actually have any accessible properties either. If neither have any, then what?

So where are the wheelchair accessible properties? I’ve found some on general property rental sites during my 8-and-a- bit-month search. They’re generally accessible by coincidence rather than design, and in new blocks of flats that definitely don’t want people like me applying; the kind that have concierges, and pot plants in the hallways. It goes without saying that they are not affordable, even with housing benefit. I could cover the difference for one or two months, and then I’d be out of money and back to square one. It also goes without saying that most properties, accessible or not won’t accept housing benefit, or sometimes ANY:

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Disability Discrimination is alive and well in the UK in 2017.

I suspect the answer is that accessible properties are dying out. The local council used to own many, which got sold off along with much of their general housing stock. The new landlords take out the adaptations, and raise the rent. They can deny installations of equipment needed to help disabled people live independently, and they can evict tenants without good reason just to redecorate a bit then hike the rent up. I haven’t been able to find somewhere to live in almost nine months with a very flexible eviction date, so I don’t imagine I’d do very well with just a month’s notice.Of course, if you can afford to buy your own home and make the necessary adaptations to it, that’s another matter. However, like many disabled people in the UK, I live on disability benefits and am therefore not allowed to save up for a deposit, though I do enjoy imagining the look on a bank employee’s face should I present my financial profile and ask for a mortgage. It seems the wiser thing to do should have been to wait until I had a career, savings, and a mortgage before becoming disabled. Silly me.

Through all this, I am struggling to keep my mental health together. I’ve worked really hard since January’s housing related episode to keep a balance, but when I got the forwarded email yesterday evening, my mood plummeted and I’ve been treading a dangerous line ever since. I can’t seem to engage with the council or think about the process without sacrificing the progress I’ve made since January, and I’m not currently in therapy because the CMHT doesn’t have enough staff to run the group yet (it seems once they’ve decided on the best course of therapy for someone, this can’t be changed due to such trivial things as staff cuts). I’ve spoken to the social worker there before, but she said she didn’t deal with the council because they never picked up the phone, so that’s another line of support cut.

In trying to be proactive, I’m writing this. Angry blogging is my first line of defence. Delegating research to friends who offer help is another. Does the council have a duty of care to appropriately house me, or does their responsibility end at offering me the chance to bid on unadapted properties? How much difference can getting my (shiny new Labour) MP involved make? Or the media? That kind of research. What also helps is that, unusually, I have quite a lot on my plate right now at least writing-wise, but this does rely on keeping the clouds from gathering in my brain. Once I’m fogged with depression, productivity becomes impossible.

Onwards, somehow!

 

Lost Days – A Post About Hypomania

08 Monday May 2017

Posted by in Blog, Mental Health

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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.