Monday, 24 September 2007

Fighting the good fight

At the end of my street - a typical, London, Victorian terraced street - lies a fairly main road, full of hustle and bustle at any given hour of any given morning. People coming and going, running with cardboard cups of overpriced coffee in one hand while the other wrestles simultaneously with an umbrella and an Oyster Card as the bus approaches.

Sometimes I sit in the cafe at the end of my road and watch, and wonder. Where are they going? What are they doing with their day? Why is it so important, and what could possibly be so pressing? And is it OK that life is different for me?

Modern medicine is all about the conventional. The success of a treatment for a mental health issue is judged not in terms of quality of life for the patient, but on how well a suited and bespectacled consultant, who only knows you by a series of medical notes passed to him by someone else who may have seen you for ten minutes in the past year, judges you to have 'returned to normal life'.

This usually means 'returning to work.'

"Oh yes, he made it back to work within five months - isn't that marvellous?!?!"

Well yes, of course, if that's what the patient wants. But why? Who is it that decides the benchmark by which a normal life should be measured?

Maybe I've been 'better' all along. Maybe it's OK that I live my life like this. Maybe I don't have to force myself to take part in something into which I do not feel I fit, as long as I do not hurt another human being, morally or financially, by not doing so.

Maybe I don't need to earn all that money to live, to be content. Maybe all I need to do is the bare minimum in order to get by.

How many people, I wonder, entertain fantasies of living on a desert island, away from civilisation and with reposibility for no-one and nothing other than oneself? "Hermit" and "recluse" take on an air of the glamourous, while "agoraphobe" does not have quite the same ring.

But really, where's the difference?

The difference is the giving of the diagnostic label and the medicalisation of the vast variety of the human condition, whereupon that idyllic lifestyle that we all seek becomes something to be treated, to be drugged, to be ridiculed.

Maybe, to the man on the street juggling the coffee and the umbrella and the Oyster card, it's not normal to want to spend every day cocooned in your flat, writing, conversing with people you care about, avoiding the gut-wrenching fear of day-to-day responsibility, but maybe it's normal for me. I am not sitting here every hour of every day, tearing my hair out in frustration at the restrictions my condition places upon me - until I have occasion to have to fight against them - and maybe that's because that's just who I am. And maybe fighting against them is what is feeding the anxiety.

And I wonder - what would happen if I just stopped fighting?

Sunday, 16 September 2007

On guilt

When I started this blog a couple of months ago, my main aim was to write a bit about anxiety disorders and agoraphobia. To inform, maybe to try and break down some of the stigma that still, even in this day and age, surrounds this sort of condition.

In essence, to tell it like it is, hopefully with a bit of dry humour thrown in for good measure.

It hasn't quite worked out like that, not least because what I wasn't expecting was the level of feedback I've had, or the insight I've gained into myself and the way my mind works.

It's better than therapy, and just as well, since I'm still on the waiting list for my CBT.

In her comment to my last post, bohémienne noted that I seem to carry an awful lot of guilt around with me about something I haven't chosen for myself.

That's not something I've thought very much about up until now.

When I first started having panic attacks around ten years ago, the medical professionals I saw shoved me out of the door with beta blockers and an affirmation that I should be thankful, because at least I could "still make it out of the house". I didn't want chemicals and I didn't want patronisation. What I wanted was to be pointed in the direction of someone who could help me to understand, to work through it, to get well. This wasn't forthcoming, so I carried on with the medication and carried on with my life. Or tried to. So I worked, and worked, and worked, the idea already planted in my head that I was a time-waster, an attention-seeker, a statistic they didn't want. Maybe that was when the guilt set in.

At the time, I was in a long term relationship with someone who didn't understand and didn't want to understand. And that's fair enough. Not everyone can cope, and although we never took our wedding vows, "in sickness and in health" does not mean the same thing to everyone.

Every attack was greeted with scolding, and shouting, and yelling, and protestations about ruined days and ruined evenings and ruined nights sleep.

More medication - valium - provided a little relief, until it was time to come off, time to go through six months' worth of withdrawal and several years of after-effects, and then the relief was gone, replaced with assertations that I was a 'mental bitch'.

Guilt, laden on me in bucketloads for seven years.


And then there's work. Guilt, that sometimes you have to phone in sick with something you can't, or don't want to explain. Guilt that you can't be reliable. Guilt that you're not pulling your weight, because that's the Great British Way - stiff upper lip and get on with things. Or, "Don't Panic, Mr Manwairing!" Guilt that at the age of 35 I haven't managed to hang onto a job for more than a two years - I was intelligent at school, did well, and should have made more of myself. And the inevitable guilt that when you finally have to leave, or get fired for taking too much time off, you're sponging off the state, living on handouts, not paying your bills, not making ends meet.


About eight months ago, I tried to make the drive to see my elderly parents. Driving is a big problem for me: what if I lose control at the wheel and hurt myself, or someone else, or worse? But still, I tried; the guilt of not seeing them, of staying away while as far as they're concerned I'm living it up in the big smoke, too busy to make the trip home, evidently too much.

I made it about 20 miles down the A303 before I called for help. A nice man from Green Flag came and collected me, and my lie that I was suffering with a migraine and couldn't see to drive, put my car on the back of a low-loader and transported me in silence from somewhere in Hampshire to the arse end of Devon.

It was a long journey. Much longer than it would have been had I managed to get a grip.

That evening, I sat in my parents lounge, fighting off yet another attack, with my mother fussing around me not knowing what to do and my father almost in tears, reciting the words "We've done this to her," like a sad mantra.

More guilt. Guilt that he's carrying that guilt for himself.

I managed a day and a half before I came home, and haven't been back since.


And finally, guilt thrown on me from the medical profession. Guilt about calling for help when I honestly, truthfully am convinced that I'm about to die. Guilt when they wheel you out of the back of the ambulance into A&E, guilt when you're greeted with hard stares from hard nurses who don't have time to waste on a mental case when there are heart attacks and strokes in the next room. Guilt when, lying on a trolley three hours later, you start to feel better and kick yourself in the head for doing it again.


That's the thing about this sort of thing, you see. Everywhere you go, you're greeted with guilt, with accusationary stares and implications of time-wasting and of being the person that 'nobody knows what to do with'. It says an awful lot about the state of the mental health services in this country that a good deal of this pressure comes from medical professionals - even the terminology given to the condition, Panic Disorder, conjures up images of overreaction, of making something out of nothing, of a chicken with its head cut off. But that's a subject for a post of its own.

I find myself wondering how much this guilt is driving my condition, and whether I will ever be able move past it without letting it go. But how, when it's all I've ever known?

For Migraineur - thank you for your concern. This weekend has been a little better and the black mood has lifted somewhat. The latest thing is meditation; I feel faintly ridiculous sitting there chanting in my head, but it does seem to be having an effect.

Yesterday, I opened my front door to put the rubbish out and was greeted with a huge box on my doorstep; beautiful flowers from a very dear online friend. I'm presuming she read my last post - I don't know because she hasn't said why she sent them, but that doesn't matter because it made my day. So I went out, to get a vase to put them in. I only managed ten minutes or so, but it's a start. And again today. Half an hour in Hammersmith, to get a few bits I needed; feeling unreal, heart banging out of my chest, tapping my fingers nervously against my thigh as the cashier took just that little bit too long to ring up my purchases, jumping back on the bus as soon as I could.

Was it fun? No. I hated every second of it. But I tried.

Thursday, 13 September 2007

A day in the life

At half past six my eyes creak open.

Where is it? Is it here?
Oh, yes. There it is. Waiting to greet me, waiting to welcome me to another day.

Six thirty-five: why? Why is it here? Did I not eat right yesterday? Did I not sleep properly? Did I stay on the computer too long last night? Did I do something to encourage it?

Is it my fault?

I thump the pillow in frustration, knowing I cannot sleep it away.


Seven o'clock. I need to shower. Wash my hair. Find my clothes, or I'm going to be late. Maybe just another ten minutes. Another ten minutes and I might be able to get into the shower without thinking I am about to die - or even get to the shower. Maybe something to eat first - it could be blood sugar - it drops in the night, you know. But that would involve going to the kitchen. Maybe a drink - it could be dehydration. There's water by my bed. Try that. Maybe some Rescue Remedy, maybe some milk, or maybe it's just me. Perch on the edge of my bed and rock without knowing why.


Half past seven: Fuck it. If I just stay here, I don't have to think about it. I don't have to battle through it to do all these feelings and sensations in order to do things that should come naturally. Breathe. Turn on the computer. Check emails. Check forums. Converse with people, because from behind the screen, I am strong, I am safe. Hold off for as long as possible, just in case it's gone soon.


Eight o'clock: Fuck, fuck fuck. It's eight o'clock. I'm not showered, I haven't eaten, and time is ticking by. I'm late. The thought of the responsibilities - simple things - get to work, earn a crust - set off a spark that jolts me into more panic, gnawing at my conscience like a rat nibbling an electrical wire. If I am lucky, a few tears might alleviate some of the tension, but most times, they won't come because I am numb to everything else except anxiety.


Eight thirty. I may have showered, or I may not have. I may have clean clothes on, or I may have picked up whatever is on the floor and made do, because it's easier than the trip to the wardrobe. I may have called in sick, but lets assume for a moment that I am walking to the bus stop, and that the ground is moving beneath me with every step and that inside, I am whimpering.


Nine o'clock. I am at my desk. I have camomile tea. The screen is moving in an alarming fashion and for a moment it hits me - what if it happens here? What if I have to run out, to go to the hospital, to call an ambulance in front of all these people? I could never go back. I try and concentrate on my tasks, and fail.


Twelve o'clock. Lunchtime. Walk to the canteen, or go hungry, because here feels more comfortable? I choose the walk. The floors move; I'm sure the patterned carpet doesn't help. What's on the menu today? Oh, this and that, that and this. This? No. That? No good. Don't know what's in it. Might be allergic to it, even though I'm not allergic to anything. Imagine it - throat swelling up in front of all these people, the panic, the blue lights. No. Let's not have that. Let's just have some toast instead.


Two o'clock. My face is numb down one side and while the left side of my brain knows it's an anxiety symptom the right is convinced of a stroke. Should I call someone? Call for help before it kills me? What? What do I do? Weigh it up against the potential embarrasment - that's what.


Three o'clock. Tired. Headachy. Tea will solve both. But no. The caffeine might trigger me. Then what would happen? I might die, in front of all these people.


Hometime. Get on the bus. The bus might be hot. I am afraid of being hot because hot makes me think of ill and ill makes me think of dying. Swarms of people make it ten times worse. Stand near the doors so I can get off as soon as it stops. Manage the lane back to the flat, keys and phone in hand. If I collapse in the lane that's it - nobody will find me. It's not a main road. This lane is where I might die one day.


Evening. Safe. Home. In my room. Behind my screen. Dinner? Nothing in. Takeaway? No. MSG might trigger. Got some crackers. Can't be allergic to them. They're safe, even if my legs shake from the lack of food. My head hurts. I should sleep, but stay on the computer, because here is where my mind can be distracted. Here I am near my phone, just in case. Dizzy. Sick. Need a pee, but the bathroom is too far away from the phone. Put it off until the last possible moment. Dignified.


Bedtime. Sleep? No. Afraid to shut my eyes, because what if they never open?


Fucking hell. This is fucking hell.

I have had this for close to ten years now and this is the longest sustained period that I have been unwell. It's almost a year now, every day waking like this, every day ending like that, and I am tired, I have had enough, I am beginning to understand what drives people to do it, why people listen to Wake Up In New York and nod, knowingly. I am sick of being the 'brave' person who must battle through every day to do the simple things that people take for granted. I don't want to be 'brave'; I want to be normal, to be me again. Whatever happened to me - where did I go to while all that stares back from the mirror is an empty shell, dead from the neck up? I am sick of being the person who is always too unwell to see her friends, to make it to the kitchen, to work a full week, to hold a meaningful conversation. I am sick of hiding, and of hiding this, but I don't know what to do to get well and I don't know what to do to make people understand.

So many people don't know, and generally the ones who do look on me with disdain. My flatmate knows nothing; I need to tell her, lest she think I'm the weird girl who sits in her room all the time. Which, of course, I am. I am afraid to tell her; afraid of trying to explain, afraid of the brief look of pity I will see flash across her features before she packs her bags and leaves.

And I met someone. Someone great. How do I explain it, when the time comes to meet? I don't want it to be ruined, even if I am.


Tonight even my room feels unsafe. My head has been hurting for four days. The agitation is unbelievable, like insects crawling through my intestines. I do not know what to do to make it stop, except cry, and that won't come, and what's going through my head right now is "My parents would be so disappointed" - but still I want my father to take me in his arms and stroke my hair and kiss my forehead and tell me it'll all be over soon. But my father, at nearly eighty, would be crushed by the weight of this.

I also want a magic pill. I want the equivalent of insulin to a diabetic, thyroxine for someone hypothyroid.

There isn't one, at least not one without a bitter aftertaste.

I don't know what to do.

Is this what desperation feels like?

Friday, 7 September 2007

Never Do Harm

The thing that frustrates me most is the up and downs, the peaks and troughs, because one always follows the other and not necessarily in any way that you can predict.

If I could have one wish - apart from for it to be gone - it would be to be able to nail it down, to give it some semblance of order. Say, Monday-Friday for the up period. Saturday and Sunday for the down. At least then, I'd know where I was on any given day.

I suppose it's complicated here by what you might call co-morbidity - which thankfully, has nothing to do with dying, rather to do with things that exist together and feed off each other. Co-existence would be a much more positive way of referring to it, but that would imply an inaccurate sense of peace.

In my case, there's the agora, and the anxiety, but there's also the migraine, the run up to which presents very similarly - it's always a struggle to tell one from the other but because a migraine is a more socially acceptable excuse, publicly it is usually the one that wins the day. And lumped on top of that is a nice healthy dose of protracted benzodiazepene withdrawal syndrome; a recognised phenomenon that despite overwhelming evidence to the contrary, the medical profession steadfastly refuse to believe in, perhaps to wash some of the guilt from their hands.

The day I was out and about and couldn't remember where I lived was the day I knew it was time to wean off the meds. It's my 4-year anniversary in a little under a month. Funny how you remember these milestones. So, with a little help from the wonderful people at, months and months of careful planning and cutting ended on the 7th October 2003, after just six months therapeutic use at what they told me was an 'insignifcant dose' and turned out to be anything but. While I was doing so, I had A Big Plan: cut the miniscule safe amount on a Tuesday, because Days 4-6 after a cut were always when your world turned upside down. That way, I could still make it to work until the end of the week, before it floored me on a Saturday. The following days - 14 or so - until the next cut were always rough, but I knew the worst was, in theory, over.

I wish it still worked like that, but it doesn't; now there is no Being In Control, no Knowing What Days You'll Be Able To Go To Work, no Big Plan. Just hanging on for the ride. Up and down, left and right, head over heels, trying to stay one step ahead of a screwed up central nervous system without falling off completely.

Sometimes, on the worst days, I think about suing. It's been done before, although the £40K settlement in Ray's case was a piss poor insult for the 14 years of medically-induced hell he endured. But because there was no help, and because nothing was documented apart from a repeat prescription and a sick note for the DWP once a month, there is probably no recourse for me. I suppose at the very least it might raise awareness that the hippocratic oath is failing the people it is meant to protect.

Does this sound bitter? I do hope not; bitterness is a pointless emotion. But I'm tired and frustrated, more than anything because not being able to be reliable makes me feel like a big fat failure.