5 Quid For Life: A Mental Health Safety Net

Just posting to point you in the direction of a charity in the making, “5 Quid for Life”.

I currently can’t contribute.  In less than a fortnight, when I move in with Robert, DLA will be all I have to support myself.  He has a job- one that doesn’t pay enough to support us both- but it means I will lose all other benefits. But I will contribute when I get a job.  It’s a wonderful idea that I’ll let Phil explain:

Welcome to 5 Quid for Life: A Mental Health Safety Net

by Phil Groom

WELCOME to 5 Quid for Life: A Mental Health Safety Net — and thank you!

5 Quid for Life started as an idea to save one life: Ali Quant. Ali has mental health problems caused largely by a lifetime of horrific abuse. As a result of those problems she is unable to work and depends upon state benefits, including Disability Living Allowance, to survive. Faced by the changes to the benefits system being imposed by the Coalition Government’s review of DLA, she found herself in a state of utter despair and posted on her blog about her contingency plan if forced to go through a reassessment of her entitlement: suicide.

So I came up with an alternative plan and launched an online campaign called ‘200 People to Save Ali Quant‘. My plan was simple: if I could find 200 people who would commit to giving £5 per month, that would provide a safety net for Ali worth £12,000 per year. She might be kicked out by the benefits system but, if my plan came together, she’d have somewhere to land.

Alongside my blog post, I set up a facebook group with the same name — and people responded, not least amongst them Ali herself: Overwhelmed.

A lesser person might have simply heaved a sigh of relief and jumped for the safety net. Not Ali: she responded with a challenge. “Think bigger,” she said, and pointed us towards the thousands of other people whose incomes, homes and lives are being threatened by the DLA review:

I’m just one person and there are many many more in my situation, so I asked Phil and everyone else involved at that point if they would mind opening it up to help others too. The ways in which this group could help people are enormous – from paying for an advocate to attend a medical assessment or tribunal to the initial idea of providing an income for someone whose benefits have been cut off, it really could make a real difference and ultimately save lives.

And so 5 Quid for Life was born. Our aim: to encourage people to give, ideally to commit to regular giving of £5 per month, to enable us to offer a life-saving safety net beneath the benefits system.

5 Quid for Life, because we think life is worth far more than five quid, but if enough of us stand together with our fivers ready, a network of friends standing in solidarity with those battling mental illness, then lives can and will be saved: A Mental Health Safety Net.

One suicide as a result of the changes being imposed upon the benefits system is one suicide too many. We say: let there be life, not death. We say: let’s support those who are mentally ill, not pull the rug from under their feet.

But who are we? Watch this space and over the next week or so I hope to introduce the core team who have been working with me behind the scenes to launch 5 Quid for Life.

There’s still a lot of work to do: drawing up a formal constitution that will satisfy the requirements of the Charities Commission and opening a bank account so that we can begin to receive donations, to name but two.

But that work is well underway, thanks entirely to those who have expressed their support for Ali’s bigger vision. People who were complete strangers just a few weeks ago have become friends and colleagues in pursuit of something none of us would have imagined possible that short while ago.

Friends and colleagues, I salute you: thank you.

Islington council’s letter boxes are safe from my urine for now

As some of you might be interested- I got the funding to finish my course!

This is an enormous weight off my mind.  It means I don’t have to either drop out or sell a kidney.  The next time I see my social worker, I’m going to give her a Toffee Crisp.  She and the person covering her went absolutely batshit at the payments team for screwing up and they backed down.  That image in itself amuses me greatly.  The whole thing had been so incompetently handled, which seems to be a habit with personal and direct payments.  Maybe they’ll review how they process these things.

Anyway- yay!

Slight Return: The Unexpected Consequences of Recovery

Hello!  Two posts in a day, whoops!

There’s something I really want to write about, so I’m sneaking in to do so.   Wearing a wig and a moustache, so, er, hello, I’m… Pawneen.

So.  I have declared my recovery.   What I didn’t declare was, “BUT WHAT THE HELL DOES THAT MEAN ANYWAY?”  Do you ever really recover from a mental illness?  I’ve been told since the beginning, the dawns of time, the stale air of the psychiatrist office that bipolar disorder (yes, it’s official, folks, again, apparently) is a lifelong illness that cannot be cured, only managed.  My general attitude, as a mad and at the time, undeniably emotionally unstable twenty year old was to howl and then resign myself forever.  Well, it was after the prerequisite six months of exhorting them all to go fuck themselves and that there was nothing wrong with me.

“But!”, psychiatry interjects, “many people with mental illness go on to live full, productive lives!”  My reaction to this was along the lines of, “Who-outside Wikipedia entries and the occasional BBC documentary- goes on to live full, productive lives?”  The models thrust forth to me were people with enough money and such a background that they could enjoy the luxury of bouts of illness without homelessness-causing, life-ruining consequences.  The people I met were people who, like me at the time, were on benefits.  And- Pawneen, you should have borne this in mind-under the care of the community mental health team.

I saw people moseying into the sunset on television, and tripping face first into the grave in my real life.  From my dad’s death from alcoholism, to my friend Vicky’s suicide, to my other friend Brendan’s accidental overdose after his brave (and yes, it was brave, he faced it with bravery, and wit, and charm and brilliance, for he was witty, charming and brilliant), “Fuck you” to alcoholism and depression.  They were the models in my life and I resented the implication that they had somehow failed because they died.

This notion of what it is to really be ill has leaked into my views of blogs as well- including this one.  Sometimes, I’ve thought, “If we’re really that ill, how come we’re writing blogs?”  That’s a bit of a shameful thought because it buys into the cliché that everybody ever with a mental illness is rocking back and forth and dribbling down their hairy chins.  It isn’t true.

People have written to me saying, “You don’t represent people with manic depression!  You do this, or that! You’re too well!”  For one, I never wanted to, nor did I ever try to.  I used this platform to talk about, and I used the fact that people responded well to this blog to speak out about mental health issues.  It always irritated me when people said that.  I would also never exaggerate, ruin my life or be more ill just to give people something more juicy to read about, or to justify my existence as a mental health blogger.  Image is not everything and hell, in this case, that’s an extremely dangerous way of thinking.

However, I do understand where they are coming from.  Because I feel that way every time I read an article on body dysmorphic disorder.  It’s always the same- stunningly beautiful woman, in the stunningly conventional sense of what beautiful is, hates her appearance and indulges in the glorious ritualistic anxiety-induced behaviour that BDD entails.  I read them and find myself thinking, “Oh, for god’s sake.  Another gorgeous woman with BDD.  What about the people like me, the ones who aren’t beautiful and who are fat and odd looking and genuinely Not All That?  I’m sick of these gorgeous woman being the face of this disorder!  I’m sick of them using people who look like models to illicit maximum sympathy!”  Then I end up in the bathroom staring at the one acceptable mirror in my flat wondering why I’m not beautiful too. (As an aside, despite the fact I’m very much better in my BDD-esque rituals- as in, I leave the house these days before six hours of make up and panic attacks have elapsed-I still only use certain types of mirrors that are either dirty or broken and none that show anything more than my face or parts of it at a a time.  Kind of like a jigsaw)  God, I can’t even do BDD right.  If I’m not gorgeous enough to have BDD, then maybe I am just that ugly, that it’s not delusional.

It’s a moot point, though, because at least it’s being written about.  It matters because at least now someone reading that article knows what body dysmorphic disorder is.

So, there is more than one face of mental illness.  It isn’t just suicide or complete, sunshining recovery.  There’s the middle ground.  That’s where I am now.

I am nowhere near as unwell or oblivious, moody and erratic as I used to be.  The last proper swings I had lasted a few months each, and from then I’ve mostly been “normal”. I’ve been depressed lately, but it’s not been that severe, and I think it’s because of the stress of my college stuff not being sorted, moving and money.  This has, in part, clarified my diagnosis.   My moods go from (hypo, because I don’t consider the months last year to be a full manic episode)manic to depressed, then usually a bit of normality, and there you go.  It happened last year, very sharply and very clearly.  After the depressive episode that followed my summer high, my mood levelled out to fairly alright.  And then I became stressed and depressed again, but having gotten the stress in hand, I feel better.

I manage, though.  I know what to do when my mood starts climbing and falling.  The falling is rather less easy to manage, because what I do to make myself feel better is deprive myself of sleep, which leads to the climb… You get the idea.  But in general, I manage.  My moods also aren’t as severe as they used to be, and this is in part because I tend to act quickly when they start to go awry.  Depression is harder because I still don’t think taking antidepressants for more than a month or so is a good idea for me.  They make me go a bit mad.

Over the years of growing up from a teenager to an adult, I have learned more about myself and more what works for me in managing my illness. I’m not so dogmatic.  I don’t think psychiatry has all the answers. I don’t think there’s a pill to fix my problems.  I don’t think manic depression was my only problem, either.  I’ve worked on those, and I’m doing fine.  At some point, I realised that there was a lot I could do for myself that had nothing to do with doctors or nurses or antipsychotics.  And I know now that moods happen and if I have a turn it’s not solely down to being ill- there’s other reasons and things I can do about them.  And there is a big difference between a depressive episode in me and being down because of something.

I stick to the mimumum of medication, using it only when I start to become high, to knock myself out and get sleep, which tends to help a lot.  If I took the whole shebang once more- depakote, Lithium, Seroquel, an antidepressant- I’d just be off and on them.  The side effects would be too difficult for me to cope with, and I’d stop taking them, and the merry go round would begin again.  This is just me- it’s not the case for everybody- but I’m a short woman who despises sleeping a lot and who absolutely cannot manage to wake herself up before twelve or thirteen hours have passed.  It doesn’t work for me. There’s a chance in the future I will be back on more medication than I’d like, but I’ll deal with that if it happens.  The general rule is that if I start shaking and I get racing thoughts and start becoming belligerent, it’s time to medically induce a coma for a few days.  I know stress messes me up and I try to keep a handle on it.

I think I expected too much from treatment.  I thought that, VOILA! a few pills later, I’d be fine, normal, stable and happy.  I thought that I’d never have a mood swing again and become someone who could forget they were ever ill at all.  I am happy, mostly, but the illness itself has left its mark.  Although I consider myself to be somebody who has recovered from the worst aspects of this, there are little things that recovery emcompasses that I’d never have considered.

I still can’t read.  My concentration seems to be permanantly shot.   I haven’t read a full book in some years.  My concentration is good for not much more than an article.  I was hoping that my ability to read was on holiday, but no, it’s sodded off and is making a wonderful home somewhere else other than my fractious self.

My memory is still faulty.  It’s still awful.  It was awful when I was very unwell.  It was merciful in that it meant I’d have forgotten some of my more shameful behaviour.  It was cheeky in that I remembered things wrongly.  But day to day, it’s bad.  I forget to do things constantly.  I am doing my physiology module right now and struggling quite badly because I find it very hard to remember facts.  I have a long time- hopefully- to learn how to become better at this.  It’s upsetting, though.

People no longer worry about me.  By the same token, they automatically don’t believe me when I say I’m okay.   I lied for such a long time about being okay that even when I’m telling the truth it sounds like a lie.

Every time I visit the GP, I still get treated a little differently because I have MENTAL ILLNESS under my active issues.  The appointment I have with the psychiatrist on the 1st is partly to address this.  I don’t want it there anymore.

Then there’s the one thing I was both afraid of and hoping for.  I’m quite a different person now than I used to be.  The biggest difference is that I am far, far less confident one.

Manic depression, or indeed, whatever it is, took care of my socialising for me.  In high moods, I felt social. I felt confident.  I sought people out and I was talkative, gregarious, flirtatious, amusing, the life and soul of the party.  The inevitable depressive episode rendered me a statue in bed whose phone gathered dust.

Now without the sustained excesses, I don’t know how to socialise.  It makes me anxious, and I’m not sure how to speak to people.  The hypomanic person whose company people enjoyed (and sometimes derided, laughed at and were irritated by) doesn’t make many appearances these days.  I’m not the person who will do every dare.

I’d been kind of hoping I was just a toned down version of my hypomanic self.  Alas, I’m not.  Not without a few night’s of missing sleep and a drink in my hand, anyway.  When I know I HAVE! to do this social thing, I sometimes sneakily induce a tiny bit of hypomania by staying up so that I can cope with it.  Don’t get me wrong- I’m not a dour, quiet person.  I am quite, er, bubbly? in real life.  But I’m still too shy to socialise.

So, I rarely go out and I almost never instigate anything social.  Before I do go out, I have a drink to quell my nerves.  I knew I was a socially nervous and anxious person, but without the high spikes, it’s become way more of an issue.  I do like people- I love people, in fact.  I like being around people, I am fascinated by people, I enjoy company and I’m the kind of person who doesn’t mind talking to the mad one on a bus (when it’s not me being the mad one on a bus).  I find it hard, though, and it means that for someone who enjoys people’s company, I’m rather lonely.

I also find it hard because- and I’m not sure if this is just me or some sort of brain-damaged by a baseball bat and a few thousand years of highs and lows- I do have little tics.  My speech has never quite recovered and I still have the habit of mixing up my words.  This gets worse when I have a little spike, but it’s also there, in general.  I feel quite paranoid about it sometimes.

I forgot that people had seen me act in a certain way, and, even being better these days, there’s no forgetting it.  I can’t rub the memories from their mind.  I can’t from mine, either.  And some of the things I do remember are exquisitely painful, and I am still haunted by guilt and fear.  It doesn’t go away, unfortunately. It diminishes, but doesn’t disappear. It’s always there- as Larkin would call it- a standing chill.

The confidence doesn’t just extend to my rusty social skills.  It’s everything.  I don’t have that total absence of self confidence that I do when I’m depressed, but in general, I don’t feel very confident about anything. I don’t really promote or push myself.  I miss that bravery that I sometimes had.  I have no idea where to get it from naturally.  Any ideas?

AND! there is also the huge, giant fear I will become really unwell again or go mad and ruin my life.  I am surprised at how afraid of it I am.  I worry over opening a fridge in case a spiky sea urchin hurls itself back into my brain.  I am absolutely petrified of getting really ill because I feel like there is everything to lose and the thought of being thrown back into that pit is so scary.

I’m way behind in life and I find that hard to cope with sometimes.  I’m not where most twenty five year olds should be.  Should is a terrible word anyway, but I do sometimes feel flattened by a sense of failure.  The last four years I’ve tried to make productive despite it all, (it, it, it), but they do sometimes feel like a vacuum.  Like I was asleep the whole time and have just woken up, groggy and confused.

I feel quite capable of doing more now (I STILL NEED A JOB AND WORK, THOUGH, HINT HINT IF ANYONE CAN HELP), and that I’ve finally regained control of my life and my mind.  It is no longer that important to me that people know I am manic depressive so that I can explain some of my behaviour, because there’s not much to explain anymore.  I pass for non-mad.  I never thought I’d get to the point where I could just, for the most part, Keep Calm and Carry On. But I didn’t get away scot-free.  This is a strange a land as any I’ve ever been.

So! An update in handy pocket format.

In the past week, I’ve had quite a few requests for a, “What is going on with you, woman?” update.  I had written a rather long, verbose post.  But instead, here’s the HANDY DIGEST!  Contains embarrassing information.

• Quite a lot has changed.  This is actually an introductory sentence, not a bullet point, but I feel it would be shivering and sad had I not awarded it the status of
• bullet points like this.
• And this.
• First of all, I wish I could retract my Guardian article about the transformative wonderfulness of Personal Budgets/Direct Payments.  After five months of waiting, after being told, “M’lady, it’s all in hand.  Educate thyself.  Just pay for all your books and such like”, it turns out that I actually owe everything. I have no funding- none- for my Certificate of Higher Education course.  I’m not sure what exactly happened, but they seem to count disability living allowance as income.  Thus, I pay £160 a month for the next twelve months, leaving me not only seven months in arrears, but broke.  I can’t afford it.
• My social worker is spitting, but alas, from the distance of her holiday right now so I’m not sure what’s happening.  She is furious.  She has sent a raging email, that uses- hark!- the words, “inhuman” and “illegal”.  She said that this was my route out of a life of benefits dependency.  My heart sank and cracked when I read the words, and shrivelled when I realised that they were true.  She’s also citing my mental-improvement, given that I have something to focus on and be careful and well for, and how I’ve been doing (I’m not being modest.  I’m proud of this.  My first module mark was 74%, and that’s the module one of a first year degree, and I know that’s good for someone with the Seven GCSE qualifications) I’ve been doing.  I have worked my considerably sized arse off for this.  It’s given me something to talk about and think about rather than my own tiny microbe life which consists of just trying to get through the day.  I don’t know what to do.  I’m on my second module and struggling because of
• depression, not just mine.  I’m rubbish on both counts.
• It’s also physiology.  The aforementioned depression-not the sedate, serene kind- is making it very difficult to concentrate and remember things.  I’m also just a bit of on the d-d-d-dense side of this topic.  It fascinates me, but I find the scratchy, unfriendly numbers and alien words hard to relate to.
• At this point, I don’t know if I can continue my course. It has knocked my motivation.  I often feel it’s pointless, and I’m waiting to be chucked off, to be called out of class and told I have to go home.  I feel like I don’t deserve to be there, because I’m scrappy and skint and I am ashamed of it.  I already felt like a pathetic charity case.  Now- what am I now?
• I can’t afford any of that money.  I couldn’t anyway, but I especially can’t now because
• From next month, DLA will comprise the entirety of my income.   I’ll no longer be claiming any out-of-work benefits.  The reasoning for this is simple- my tenancy ended at the same time as my boyfriend’s.  His ended favourably.  Mine ended on the terms of my delightfully crooked landlord, who said I could stay on, providing he raise the rent of my tiny flat that doesn’t have any door handles by almost £300 a month. In the immortal words of Michael Hilland: AYE YER MA.
• So, we decided to move in together.  We love each other, really, quite a bit.  We spend all our time together.  We are siamese.  There is also the fact that sometimes, I’d like to feel like a real human being, in a real home, and not the last-ditch-shit-better-let-this-out hovels I end up in because of my circumstances.  I want- very much- to just live with the person that I love, like, y’know, a couple.  It’s something I’ve never written about here.  But it is so incredibly important to me to have a home.  I need one stable vein running through my life.  I need to be able to sleep and retreat.  We want our lives to be together, and we’re happiest that way.
• I’ve f0und somewhere to live.  Robert has a job-not one that could support us, but it’s a job he works over 16 hours a week in. This means I wave goodbye to my benefits, aside from DLA.  I think- although I’m not sure- that I can claim enough housing benefit to cover most of my rent.  The rest, and my share of council tax, will be paid by my DLA.  And, after that, there’s my money to live on.  It’s not much, at all.
• I made this decision after a lot of ARGH FUCK.  It is worth it.  I’ll find some way to get money.  I feel assaulted by the government recently, like many others in worse positions than me.  I almost don’t care if I am too poor to eat, if I can’t finish my course because I can’t pay for it.  I don’t want to be at their mercy.  Whatever happens happens on my head- my neck, my own lovely guillotine.  I hate waiting for the chop. I am happier being the one with her hand on the lever.  I’m sick of looking over my shoulder.  I’m sick of feeling a lurch in my stomach whenever I check the post.  I know that even if I have a breakdown right now, the outcome will be the same. I’ll lose my benefits anyway.  Here it is.  It is in my hands. On my head.
• Students, slow handclap thanks.  You’ve had the biggest platform imaginable and for the most part peddled your own agenda.  We would have appreciated some solidarity at the protests against welfare reform that are resulting in suicides and will result in homelessness and mental disintegration across the country.  Please just show some support, eh?
• So, we’re in financial “fuck!” straits.  We’ll be able to pay our rent no matter what- it’s the priority, we love our flat.  We were incredibly lucky to get it.  It’s in South London and when the bedroom window’s closed, you don’t hear a thing, not a bird or car or a plane rumbling by.  It’s been years and years.
• We haven’t moved yet and don’t until the 7th, which in itself is going to turn my mane grey, because- well, lots of reasons.  It’s in South London.  I like it there.
• I am trying to view the lack of money as a motivator.  I’ll carry on in my course that I can’t pay for and will be kicked out of any minute.  I’ll wait for responses from universities.  Nothing yet, except from one I had to withdraw from due to realising the journey time would be about 5 hours a day, at best.  It’ll all be academic-AHAHA-withut finishing my course.  There is no funding- I have checked.  I will write, aggressively, almost petulantly, hoping someone thinks I’m good enough to pay.  I’ve applied for fifteen jobs.  I have received not one response.  I feel ready for work now.  I have had the predictable response to stress (becoming a bit ill), but I’ve handled it quite well.  If I don’t get into university this year I try again next year.  If I can’t finish my course this year- I have no idea what to do. Save up and finish my modules another year, and apply again.   I wish someone would cast an eye over my CV.  Three years as a professional mental is good for some, the some suspiciously quiet. The rest- it’s understandable I’m not hearing anything.  I feel tainted.  Like I wiped my arse on it all and fired it merrily through every window in Britain.  DO NOT TOUCH! Infected.
• As I can no longer claim benefits, and I’ll be out of my borough, this is also the end of any support that I have had.  It’s goodbye to the community mental health team and all the secret-hush-hush help.  Aside from them, I don’t really have any support.  I have Robert, but it’s not that fair to push all my fears onto him.  He can’t help that much either, except for reassuring.
• I also can’t afford my prescriptions and I’m not- or not going to be- on any benefits that entitle me to them.  I can’t afford reduced rates, either.  I’ve been back- fairly regularly- on Seroquel.  Sleep.  It is everything.  Ah well.
• I see a psychiatrist on the 1st.  That’ll be interesting!
• All in all, these turn of events have made me feel like a complete wastrel without much of a future.  But bollocks to such thoughts.
• I am likely to get into trouble for writing this post.

Despite all this, my mood is somewhat better.  It’s either due to lack of sleep or that I feel hopeful that I can sort this out.   Somehow!

So, there’s an update.  I tip my hat to you all.