An expensive life

The more I think about my circumstances, the more I am unnerved by how much they're costing me.

Two perspectives are obvious: the personal and the financial. How much is living with mental and physical illness really costing me? How much is it costing the services that support me?

On a personal level, the cost is enormous. Apart from missing out on all the things that a healthy individual my age would be engaging in today, like socialising and going to the gym, the deeper deficit comes in forms of things that are mostly undetected: my crippled self-esteem, the lack of motivation, bouts of confusion; the long-term effect of medication on my organs, the emotional damage that comes when another treatment / doctor / approach fails to deliver.

That's a mere handful which can be plucked from the pile. Other things too, things that we all take for granted, are missing. Smiling, for example. Feeling happy. Even when I do manage to muster a laugh or a grin from the depths, it's underpinned by the sensation that it's not the done thing – I feel like an outsider for expressing a positive emotion through muscular gestures in my face. Sometimes it's because I don't believe I should be smiling but mostly it's because there's more to be anxious, worried and depressed about.

My favourite 'positive thinking' fact that's been slung at me over the years is:

“You know, it takes more muscles to frown than it does to smile.”

Yes well, my face gets a better work-out than yours. And there's another few pennies thrown out: optimism, empathy and gratitude. And these pennies all add up in the end.

I recently did a quick psychology measurement scale to give a general idea of how much stress I experience in my life and thus how susceptible I am to potentially developing chronic illness. A bit of a no-brainer considering I already live with chronic health problems but I took it anyway, being geared toward bettering myself.

After tallying everything up, my score came out at a respectable 1,198 points. Then I read what that number meant and almost lost control of my bladder, partly from panic but mostly from amusement: scores over 300 are a general indication that the individual will probably develop some form of chronic illness in their lifetime.

Well blow me down. And the scale whilst you're at it.

It turns out that life experiences are stackable, which accounts for my high ( LOL, high) total. I'm pretty much up to my eyeballs in Stress Debt, which makes my overdraft look like a fluffy, goose down duvet. I'm not yet thirty – what is the interest on all of this? What is this going to continue to cost me and are the bailiffs going to come round any time soon?

I expected this revelation to cause me even more problems but it's done the opposite. Like my Mum who quit smoking immediately after her first major heart attack (she wasn't much older than me), I've taken hold of the situation and started rethinking how I live, breathe, eat, walk, talk and think.

Change comes with a price but if it means I can settle some of these massive personal debts, I'm willing to spend a bit to save a lot. A lot being my life.

Stress and all of its associated diseases, kill.

On a strictly financial front, the cost of my being in such a mess is just as impressive. I'm not about to present a firm, sociological dissection of my care, treatment and support but instead, state a few realities and ask some questions about them. I'll start with something basic.

Drugs

In an unfortunate twist, I take minimal medication because I can't tolerate many of the options available on the NHS. My most recent foray into chemical rejection has left me heart-broken; an anti-inflammatory finally helps me to feel a bit more human but causes undesirable complications, meaning I have to stop taking them and go back to being in constant pain.

Bummer.

I hardly made a dent in the prescription meaning that at least three weeks of pills are now to be returned to the pharmacist and destroyed. What a waste. Although my other meds are basic, they still cost a bundle to have them prescribed and I take them every day. I renew my prescription every three to four weeks out of necessity.

I wonder how much money it takes to fund such a basic set of pills and then how much more is thrown away when left-overs have to be destroyed because they're not suitable for me. How much money could be saved if:

• My doctors made a conscious effort to make sure drugs they prescribe me won't destroy my innards or send me off on a psychotic trip. Okay so they'd have to spend more time getting to know me and reading my notes (doing their job?) but those are short-term chips compared to the long-term mess of dicking around;
• More research was done see which chemical-based treatments actually work.
  

Appointments

Every time I go to my GP or to see consultants, they get paid. I don't need to mention the scandals surrounding pay, do I? No? Fabulous.

When I do pay a visit to these people, and it's a regular thing, not a lot happens. There are no real developments, just the same old questions and techniques born from a lack of medical understanding and, I sense, a certain degree of unwillingness to take on board the criteria of another impossible disease.

Cancer used to be impossible. Now it's getting its arse kicked.

Hospital appointments get me thinking about how much time, money and resources would be saved if the doctors I saw went just that little bit further in trying to get to the bottom of my conditions. Late last year, one doctor did just that and I got some results which was fantastic until another doctor shrugged the new findings off as 'marginal' and sent me home in a bubbling pot of misery and pain.

Since then, I've requested a second opinion because I don't believe that dismissive consultant was right to leave me 'as is' and wait for things to develop beyond their criteria of what they clinically believe to be significant. I'm talking about a number here. What they're missing out in their opinions is my quality of life, the test results that all support one another and my roaring family medical history.

If I were a doctor presented with a case identical to the one I, as a patient, am facing now, I would throw the 'criteria book' out of the window and tend to the patient. Not every patient needs the same level of care and that's my point. Averages have turned specialist consultants into glorified GPs who do little more than order blood tests, recommend more drugs and then send you home.

Tests and Treatment

I lost count of how many blood tests I had last year. So far in 2013, I've had a routine check of the standard stuff: cholesterol, vitamin levels, liver function, and a specialised request to check my rheumatoid factor and for any rogue anti-bodies. I have these things checked every four to six months because things need to be observed. I have an illness of some description, after all.

After giving what I imagine to be nearly a pint of blood for such tests in 2012, I started pushing for more proficient investigations and got them. That's how I found out my thyroid gland is doing fine – an excellent thing to eliminate in the game of 'Guess the Mystery Illness'. At the same time, I discovered something that would have remained buried had it not been for my insistence that they check.

When you have a condition that can't be directly diagnosed, you do things in reverse. You make sure all other systems are functioning before sliding into acceptance. It'd be stupid not to but that's what my doctors have so far done with me.

It's only down to meeting an excellent GP who listens, and pushing consultants to their patient etiquette limit, that I've been able to get specific areas of enquiry addressed. How much have these hospitals wasted on pointless tests when they should have been honing in on trace abnormalities?

Yes, it must have cost a fortune to have an isotope scan on my thyroid but it doesn't matter; I have a prolific history of it in my family and to have found no hint of disease in that area is a blessing. A potential candidate for my trashed health has been eliminated and psychologically, I have been lifted from the folds of worry. Debt = settled.

That's only one example of the numerous avenues I'm exploring in order to find out what is going on with me. It could be that I have all of these other tests done and they still find nothing, but I'd rather just do it and know that my heart has no defects or blockages (again, this sort of problem is a good friend of my family. A lover, in fact) and be certain that I'm not walking around with a treatable condition that could be prevented from doing even more harm the older I become.

As for treatment, it's hard to see where to turn when you don't know what's wrong with you, which is why proper investigation is so important and why doctors shouldn't be so dismissive of approaches that fall outside of a fringe department, the ones specifically designed to send people like me to when a doctor's face hits a brick wall e.g. pain management clinics.

I had a physiotherapist declare outright that no amount of massage therapy or acupuncture will help with my lower back problem, or any of my other conditions. I didn't get a say in that announcement which was a shame because had they let me, I would have explained that:

• Previous acupuncture therapy had not only helped my bad back, it had also eased the pain I was experiencing throughout my body and induced positive outcomes with my mental health. My nerves had been soothed, my muscles relaxed and my depression alleviated. It wasn't a cure and it didn't happen overnight (it took around four session until I noticed how well it was working) but it was the best two months of treatment that I had ever experienced. It still is.
  
• Deep-tissue and muscle massage has been shown to help reduce pain, inflammation and and stress in a variety of illness. It's particularly promising in my own conditions.
  

I state again that alternatives to drugs and clinics are not cures. What they are however, are a different attitude toward chronic illness. They manage conditions instead if dumping them in the corner until the next appointment comes round. I think that, despite being sniffed at still, these forms of treatment, at the very least, freeze the interest on the growing debt of failed medical care.

I realise that I've given less attention to the personal costs of living with chronic mental and physical health problems. There are some things that I don't want to bring into the light just yet, perhaps because I'm ashamed or because I'm frightened of what they entail. I'm not ready to explore the price tags that are tied to all aspects of my life.

Though I'm inclined to dismiss my inner Drama Llama, I have to acknowledge the creeping dread that this kind of oblivious secrecy produces: not knowing who you are and what little buttons that, when pushed, set you off, is a state of being that all of us should be weary of: ignorance is bliss. So is sleep until carbon monoxide comes into the equation.

If I've decided anything after thinking about all of this, and more, it's that I'm going to make sure that I'm not side-lined any more. Speculation aside, I am living with chronic illnesses and they are preventing from living a fulfilled, purposeful and productive life. They are degrading me both mentally and physically. I may not be dying but I'm not exactly living and life is about living, or so I believe.

I'm going to invest in my future. I'm going to refuse compromise and 'come back in six months' in favour of commitment and 'do your job right'. Professional will baulk at me, some will probably tell me I'm being paranoid, but they're not the ones who have to pay for all of this in the end.

I am.

 

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Meanwhile in other corners of my mind…

I'm a scatty writer. I have around 150 words on a sheet of paper at the moment, a piece of flash fiction under construction for a competition. My bid to fulfil a promise to myself this year: get some fiction published. Anywhere.

I'm not lacking in opportunities.

What gets at me is that when it comes to sitting down to write, I dedicate myself wholeheartedly to doing so. But then I end up doing this – distracting myself with some other medium – instead of focussing on the goal.

Why?

It's no mystery and nothing to worry about. What I'm doing is simultaneously discovering and destroying the self-imposed myth that writers sit down and write, like a river cuts a path and flows, unrelenting. Now when I get into a groove, the words come quick, but most of the time I start off doing something I imagine to be the staple of most writers: staring into space.

It's my bread-and-butter, watching everything and nothing in my peripherals whilst fragments of what I'm writing float about and join up, decide they're not right for each other and break up. Between those thoughts are other things: this post; which vinyl album I'd next like to invest in; whether I've messed up a quest on Skyrim; how can I connect two elements of a story to make them symbiotic; I'll email about that short course to give me a leg up; what should I write for this bit now that I can't identify anymore rogue thoughts.

And whilst all of that is drifting and colliding, the story I'm working on is fermenting. I don't believe that procrastinating (as I am now) is detrimental to my writing. I think, without it, I'd write a lot more crap than usual.

It's a trick though, to find the balance between procrastinating and doing nothing.

I blame a lot of my inactivity on my health. It's true: some days are just nasty and those are the days where I need to pea-bug in order recover and prevent myself from getting worse. That sort of behaviour becomes tattooed onto me and results in days where I 100% believe that I can't lift a pencil, that doing so will be pointless because whatever I put down on the page will be empty and worthless.

'Pea-bugs', by the way, are what I used to call wood lice when I was a kid because they curl up and look like peas when threatened.

No writing is worthless. All writing, whether it grows and is sent out into the adult world of scary, discerning readers or is screwed up and tossed away after five minutes, has value. It has value because of the effort it contains, the thoughts that have happened around it and the decisions that have been made about its future. These are all essential processes with which, at least for me, writing would be dead without.

I welcome distraction but am vigilant against despair. One stops me from being too serious whilst the other makes me so serious, it disables me.

If there is one thing I can do, it's find a pencil and a sheet of paper, and commit acts of words. That ability is open to the elements of life, like everything else, which is why I always take the time to follow a stray thought, avoid the issue at hand and spend some time exploring so that the creative brain in me can bubble unconsciously.

Watching a kettle boil doesn't make it boil any quicker or better.

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Solitary

I've been in two minds about writing this post. It's something I want to say but not in order to moan and berate. I'm going to say it because it means a lot to me, because I want to reverse it.

I'm socially isolated.

I rarely get to physically see my friends or my family because they live a long way from me and have pretty busy lives. I don't get to go out and build a social life because I have medical conditions which prevent me from living a full life, safely.

I have no control over those things. I can try to bridge the gaps where possible but I can't click my fingers and bring everyone I love into the same space, free up a few hours a week so I can see them, and then magically cure my conditions so that I can lead a socially active life.

Sorry if you're reading this and happen to be a great optimist, but the above scenario, where I alone make everything perfect, is unrealistic. I'm not a defeatist by any means. I'm just in touch with what's possible given my circumstances.

So I'm unable to make regular physical contact with those I love. The solution is social media, right? Kind of yes, kind of no.

Twitter, Facebook, Tumblr, WordPress and any other social platform you can think of, are all brilliant tools. I use the first four regularly, connecting with people not just in my close social circle but also with other people across the world that I have never met. You're probably one of those very people, reading this now. Hi! How are you? Thanks for reading.

But social media, for me, falls short. Why?

It goes back to the people I'm closest to having busy lives. I wouldn't deny them that, though I would appreciate being spared a thought. Sometimes I go off radar and whilst I'm absent, I rarely get a message asking where I am and how I'm doing. It may not be the case but it often feels like nobody has noticed I'm not there.

That is isolating.

I try my utmost to keep in touch with friends each week when I'm able to. It's at least once a week, even if it's a quick comment on a Facebook update. It shows that I'm keeping track of my friend's movements and paying attention to their thoughts. When I'm not having a rough time with my health, I go all out and write an email or even better, I go Old Skool and write a letter. I'll also pick up the phone and call my sister, or arrange a Skype/phone call with a friend.

This is how I connect with people 90% of the time because I'm unable to do it physically. Even with my alternatives, I'm limited by my conditions. Talking for an hour on the phone is knackering, for example.

So what am I asking? For people to connect with me more often. I don't want to be socially isolated, even though social situations make me anxious, and I think this is pretty obvious in how I communicate with my family and friends, and how I blog openly and honestly. I reach out.

Please reach back.

And it's not just me. We're on the crux of the loneliest time of the year: Christmas.

The 2012 festive season will be an empty and miserable time for many people – those with no home, children with no parents, the elderly, the estranged, individuals who have lost their families. Last year, I made a donation to The Salvation Army so that someone would have the company, care and attention that they deserve. And even though my finances are tight, I will be doing it again.

It doesn't take a great deal to keep in touch with someone. A few minutes out of the day to send a message. Arrange a phone call. Write back. Doing one of those things for me will make the difference between a week where I start to believe that I'm the most insignificant person on earth, making my depression worse, and a week where I think

I am not forgotten. My friends still think of me even though I can't do the normal thing and go out for socials with them. My friends acknowledge and respect that I live with a complex tapestry of illnesses.

Props to those of you who who do tweet and message me. Extra credit for reading my thoughts! You help me feel so much better and a lot less isolated.

Photo courtesy of takethea

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Tilt

I got up and lit the fire. I'm still in my pj's and I don't intend to get out of them. Outside the sky is all gloom and grey swirled with milk and the wind is flicking the plants that have spent months hoping for the summer that never came. It never came last year either, not properly.

I like how everything winds down as the earth tilts away from the sun. The pressure is off and it's more acceptable for me to be a hermit, swaddled in ugly (but oh so cool) jumpers and hand-knitted socks.

Every year I spend March to the end of September waiting for now. Now is when I'm happy. Now is the familiar smell of wet and earth. Now is the feeling of warmth. Now is the ebbing sun and the coming of long nights. Now is home for me.

I made a decision last night to stop pushing myself to be all these things that silent societal rule dictate. I'm not healthy; I'm not social; I'm not sane. And despite appearances, I'm not a woman.

I probably write something similar each year but I need a kick in the toosh to follow my instincts. In previous years, I've lacked the stimulus but this year? I've been as unwell as I've ever been and nothing I've done, things that I have been told to do because it's how things are done, has made a difference. I could be a pessimist. Should I be?

I think I'd rather slow down. I think I'd rather forget what I should be doing and do what I want.

Photo courtesy of Dan Zen

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What has value?

I ignore the outside world. We don't get on.

Things slip through though, things about calling other people horrible names, people invading the privacy of others, people lying for gain. People thinking that they're what matters.

This afternoon I took my chihuahua, Misty, to the vets to be euthanised. Her mobility had rapidly declined, she wasn't enjoying her food and she looked downright miserable. I think she was in pain with her back because she wouldn't settle. She'd also taken to isolating herself from the others.

I spent some time with her in the morning and then let her be with Ruby and Crumble, our other two chihuahuas. Crumble is her son.

The vet said they could probably treat her for heart disease and any other afflictions, but I don't have the money to do that. Previous experience has also taught me that once a dog declines, the best thing to be done is to let them go peacefully, not to draw out their suffering.

I did the right thing for my loved one today. I didn't do it out of selfishness, laziness or malice. I did it because I loved Misty with all my heart as I loved her mothher Tilly, and as I loved Phoebe too.

I have no regrets.

I've been bed-bound since the end of July. Things have started to pick up a little in the past two weeks, though I still need extensive periods of rest. I'll get up and eat, perhaps do a small chore and read for a spell, but then I must rest.

If I have appointments, I must spend the day prior and the time directly after taking complete rest. I'm having to walk with a stick because I feel unsteady on my feet and am physically weak.

I've had an infection in my chest that lasted all of August and was left untreated by my doctors because they felt that an infection was only an infection if it produced gurgling in the lungs. Never mind that it was painful to breathe and impossible to use my full lung capacity. Never mind the obvious symptoms of a viral inflection.

It was so awful at one point, I called an ambulance. Five hours later, though reassured I wasn't suffering a cardiac episode, I remained untreated and exhausted.

Despite feeling so unwell and going down the pan, I'm still thinking ahead to better things. I'm still hoping that consultants will discover something treatable in me and that I'll start to recover from what has been a year of rapid deterioration in my health, part of a four year pattern of general decline from a healthy twenty four year old to a bed-bound twenty eight year old.

I still try to write a bit each day and I get out of bed, no matter how unwell I feel, to attend my appointments. I got out of bed to put my dearest pet to rest the way she deserved.

It makes me think of all the things from the outside world, all of those people being cruel, greedy and fickle. I don't feel above them. I feel sad. I feel horrified that those things are considered more important than living a good and just life, and doing the right thing no matter how hard it is.

I was in the process of giving up with this whole 'trying to continue with life' thing but I've changed my mind. I don't know why. Maybe it's another thing for me to work out once I get to see a therapist, which is this week as it happens.

It's autumn and I'm ready to knit again. Small blessings.

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The thing is…

Danuta Kean, Mslexia's Guest Editor, has no need for a hammer. Her recent article on how women cope with working, parenting, earning enough to get by and then finding the time to write should be read by anyone who thinks writing is easy but most of all, by those who profit from writers, especially women writers who weild their pens. But something bothers me.

A significant demographic of writers female, male, gender neutral, transient – the lot – are missing. And as a disabled writer, I'm missing too.

Most of my readers know I was diagnosed with Fibromylgia / M.E. / CFS a couple of years back but have lived with it for over four. I'm lucky to have not been confined to a wheelchair like some people who live with the condition, but I have my regular share of days confined to bed because it's too painful to move and exhausting to breathe.

I read Danuta's article, thrust my fist in the air … and then slowly drew it back down as pain ricocheted from my elbow, down my arm to my fingers, and back up to my shoulder and into the blades of my back. The pain touched every bit of my arm on its journey: nerve, muscle, ligament, joint, bone.

If women feel guilty for not coping as well as they should, then I, along with every other writer out there who lives with ill health, feel twice as guilt-ridden. Not all of us can break through and earn our way.

Kudos to those who do storm the path by the way. You're an inspiration.

I haven't written for days because I'm riddled by my condition. How do I cope with that? I don't. I shut everything off and forget about writing and finishing my novel. I would trade a hectic lifestyle and all-nighters for the briefest of feature articles if it meant I could slip in an hour or so of writing, free from pain and sickness. It feels as much of a dream as my novel does.

So I want to know, if you're like me, how do you cope? How do you get through the day with your illness? How do you react to being told not to let it beat you when you feel like a thousand leagues of shit has been beaten from you?

Women writers are pulling it off one way or another and I reckon they deserve proper recognition and space for that, but so do all of the writers out there, published or unpublished – famous or not – who live with long-term physical and mental illness.

At least recognise us.

I want to continue typing after I'm done here but the pain and the tiredness and the effort is too much for me today. Maybe tomorrow it will be better, for all of us.

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Wake up

My last two posts have been gloomy. Life is hard to live sometimes and I often question why that is and whether I'd have better luck in a different life.

I had a terrible time during my yoga class today. I couldn't focus and I ended up crying through most of it because I was convinced I needed to get out, escape. Run away and not come back. But it wasn't the yoga I was running from. It was me.

So I come home and eat junk instead of taking care of myself and intermittently weep when I get that urge to run again. And then I find that a post I wrote for Tiny Buddha a few weeks back, when it was sunny and I was getting burnt, has been published on the site, and people have responded really well to it. There's a lot of gratitude going on.

I cry again but with sobs this time. Feeling so crushed and then being propped up by complete strangers is the ultimate in vulnerability and has helped restore some of my emotional strength.

If you're one of the kind folk who commented and are reading this now, you made a real difference to my day. I'm so grateful.

I don't know how long I'll be in this state for. It could end tomorrow or next week. It could end when Autumn hits because I'm generally happier when the nights are longer. I don't think it matters in the end. I'll carry on living and feeling whatever I feel.

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The right thing

By the time you read this, it will be close to 5.30 a.m. On June 9, 2012, as I write it.

I’ve slept badly. I fell into dreams without realising and awoke at 2.30 with a sadness in me, so black and terrified.

I didn’t want to wake my sleeping family so I called the Samaritans. I wasn’t sure if they’d pick up. It rang for a bit but then a man with a voice as gentle and soothing as gravel popping under the slowing of car tyres, came through the phone.

“Hello, Samaritans.”

I’m never sure of what to say. I shudder out the first words all the time, usually something like “Do you mind talking for a bit?” or “I need to get something off my chest”, if I’m feeling desperate.

I decided to say “Good Morning”this time. It seemed apt.

They always listen.

Always kind. Always patient.

I talk for an hour, sometimes less, sometimes a lot more depending on the state I’m in. I went 8 minutes over the ‘talk free for an hour’ allowance, meaning I’ll be charged for the whole call, plus those 8 special minutes. And I don’t care.

Without the Samaritans, I’d be nowhere. I’d be nothing. I’d be in tears, hysterical and too frightened to tell the truth about what’s going on inside of me. I’d be waiting for ever, like I am now, to talk to someone about it.

Waiting for a therapy referral to come through is waiting for a cure.

Not a cure for my mental health problems but a cure for my loneliness, my sadness.

The Samaritans are my cure.

And so I’ve done what is right. I never have a lot of money spare because I have debts and bills to pay and a manic person inside of me who is obsessed with books, vinyl, iPad apps, and mysterious objects.

But I have made space for £3 a month to support a charity who gets at least one phone call from me every week.

That £3 will join the £3 that goes to the WDCS which helps protect whales and dolphins across the world, and £3 to the RSPB which helps protect our country’s bird life and environment.

The £3 to the Samaritans is to thank them for everything they do and, I realise, it’s there to help them continue to protect me. And when I say ‘me’ I don’t just mean myself; I mean all of the people who call up in the wee hours, any hour, needing a kind stranger to help them through a rough patch.

The volunteers don’t get paid.

My Samaritan in these early hours was called Paddy and he was just what I needed. I said he should be paid for his good work. He said knowing that he helps people like me to continue living life is payment enough.

If you see a Samaritan fundraiser, don’t run from them because you run from me and you run from yourself. Give spare change, make a Gift donation, set up a regular donation even if it’s small like mine. It keeps the call centres open.

Become a volunteer.

I’m not usually this honest on my blog, even though I’m honest about my mental health; without the Samaritans, I’m not sure I’d be writing this. I think I’d be in hospital.

I’m going back to sleep. I still feel unsettled but because of Paddy, I feel less alone.

 

Creativity for the Agoraphobiac Part One

Agoraphobia is the fear of crowds, being in public spaces, being around strangers, people in general, being in unfamiliar places or away from home. It commonly arises alongside Panic Disorder, a debilitating mental condition where the smallest thing can make you freak out and feel as if you’re about to die.

Anxiety / panic attacks are horrific. Anyone who has ever become suddenly aware of the weirdness of a situation and started to sweat because of realising that weirdness, knows what it means to experience anxiety and panic. Long-term sufferers live with that feeling every day, sometimes in that mild form, other times in such an extreme way, medication is required to sedate them.

I am one of the X million people in the UK who live with Panic Disorder and have developed agoraphobia as a result. I’m going to make a list now, one of my favourite things to do. This list outlines my experiences as an agoraphobiac.

Crowds

The thought of three or more people in one place at one time, near me, makes my stomach shrivel. I rarely venture out at the moment, due to a serious relapse, but if I do, I have to plan my outings and set myself time limits for how long I can stay out for. I do not go beyond my village, a mere half-mile up the road. If people start pouring in, I have to leave. Symptoms include:

•  Sweating
• Dry mouth
• Headache
• Nausea
• Dizziness, light-headedness, feeling faint
• Shortness of breath, sometimes a lack of breathing altogether
• Hyperventilation
• Difficulty swallowing
• Palpitations
• Chest pains
• Sudden bowel movements (hilarious fun…)

There are probably more but I can’t recall them and herein resides another element of my mental health that must be explained before I move on to the next experience.

I dissociate. What that means is that under stressful and / or frightening situations, I disconnect from the experience. It’s not an uncommon thing. Dissociation is a psychological device which enables us to survive traumatic experiences. If you’ve ever been in a nasty accident, experienced a bereavement or even seen a film that’s scared the buckets out of you, you might have a hard time remembering the event and feeling any emotions that would naturally be connected to it. This is our brain’s way of protecting us.

My own life experiences have been traumatic in a consistent enough way to make dissociation a regular defence mechanism so that now it happens naturally. I can’t control it and I don’t know or understand all of my triggers yet. What I do know is that when I have a panic attack, I disconnect. I can’t remember everything that goes on.

Public Spaces

They don’t have to be packed full of people to terrify me. For reasons I don’t understand, I experience spatial and visual glitches. I call it ‘Alice in Wonderland Syndrome’ because either I’ve become really small or everything around me has become monolithic. Even the sense of my own physical body becomes warped. The same list of symptoms applies and more often than not, I leg it and try to find somewhere safe to hide. Mostly I don’t go out at all.

Stranger Danger

Meeting strangers is a nightmare. I remember my first day back on the second year of my MA. Not only was I in a small, public space surrounded by a crowd of people, I didn’t know a single one of them. But I was determined to finish my studies and I set myself a target: make a friend.

Having the willies about strangers doesn’t lend itself to making friends, I can tell you that. What if I make a complete tit of myself? I’m a weirdo anyway; I have a habit of staring, I say inappropriate jokes and statements when nervous, and when I get really wound-up, I start ticking.

Ticks are physical twitches, involuntary movements. Mine are mostly facial but at my worst, I roll my shoulders out-of-place and continuously wipe my thumb and index finger over my brow and nose, one after the other. I fidget, jig my legs, twist my fingers and experience sudden spasms that make me turn my head quickly. I try to calm down but it’s not easy. I make odd noises too. All this in front of people I don’t know, who don’t know me, can become too much to handle.

Public Transport

I hate buses. Trains I can just about cope with. Cars are bearable only in cases where I trust the driver. Recently, all have been off the menu. Simply put, I don’t want to be in a confined space with other people and I certainly dot want to be transported to places where there are other people. I refuse to learn to drive too because I’m terrified I’ll end up getting lost or cause an accident because I dissociate and freak out.

Home Alone

I think I can be left to my own devices at home for around fifty minutes before I start to panic. What if my Dad has had an accident? What if he’s unwell? What if I hurt myself? What if I become sick? There’s no one here to help me.

There are days where I experience nothing. What I mean is, I’m so out of my mind and confused, I can’t work out what the kettle is for. I know I want to make a cup of tea but then I realise that I don’t know what tea is, let alone how to make it.

I can’t account for what happened in any precise way, but I remember wanting to cook some scrambled eggs. I’d not been eating properly and for once, I was hungry. With making a cup of tea being hard enough, I think I must have become disenchanted with the eggs and distracted by something else. I remember the TV, which was turned off at the time, being fascinating.

I returned to the kitchen some time later (I’ve no idea how much time had passed) and noticed that it didn’t smell right. It smelt thick and sort of sweet. There was a hushing sound. I’d turned the large gas ring on, intending to cook those eggs, and walked away without realising what I’d done. I could have blown my home to pieces, myself along with it.

Sweet Dreams

All of the above does not make it easy to relax. I have terrible trouble getting to sleep at night and maintaining that sleep, which is why I’m awake at almost 1:30 am writing this.

Exposure

Newspapers are off the agenda, along with news broadcasts. I have to carefully select any TV material (all apocalyptic material is to be avoided, no exceptions), and when viewing a film or episode of something, I have to make sure that I’m physically aware of my safety. Obviously I don’t go to the cinema or the theatre. A rarely watch TV. The films and shows I do watch can’t contain anything too heavy.

I got into Sherlock recently. The second episode scared me so much, I sat in bed crying for an hour. It wasn’t the hound; it was the setting. The open spaces of the moors juxtaposed with the claustrophobic trap of the research facility. And the tourists. God, the tourists…

Reading fiction also requires vigilance. Certain topics can make me throw the book across the room in terror, and I love books. I’m a bibliophile and proud. But I get so involved with the characters, I forget me and begin to experience them, their world and all the people and spaces, their fears and feelings. It spirals and I have to take a break, ground myself.

It helps to have someone who ‘gets me’ close to hand, when engaging in any TV or reading, for reassurance. To stop me from going off the deep end.

A Deeper Understanding 

It’s not just physical effects that panic and agoraphobia inflict. The mental side of living with these things is hellish.

• Wave goodbye to your self-esteem and confidence
• Say hello to increased periods of depression
• Reality becomes implausible
• Embarrassment makes it hard to seek comfort and advice
• Isolation breeds paranoia
• Mistrust strains relationships
• Fear paralyses efforts to break free
• Confusion erases time and memories

You’re probably feeling as miserable about this as I do now, after reading that. I’ve found however, that even if all of the above is going on and blocking my path to a happy, fulfilled life, I can always find a way around it. And if you’re in the same boat as me, so can you.

My next post, Creativity for the Agoraphobiac, Part Two, will be focused on the creative activities I enjoy but because of my mental health, are restricted. It sounds daunting I know, but I’m going to be finding ways to rediscover the pleasure of these activities without aggravating my fears and making myself sick.

Until then, I’m off to get some much-needed sleep.

Unfortunate events

I used to be the type that freaked out whenever anything bad happened. I’d put myself through hell over the smallest things because I couldn’t get over the idea that I am not in control of my life. Fast forward a few years and I’m pleased to say that I’m much more chilled.

Crappy things still happen, the past week being no exception, but instead of jumping in and essentially drowning myself in things I have no say over, I step back and deal with those events as they come. I make them form a line. If they’re important, I attend to them; if they’re irrelevant, I release my grip.

There are times however, such as today, where I’m ultra-stressed because I can’t control the situation. In my defense, this is a situation that needs control.

I had a tattoo done last week and it’s unfortunately developed a mild (I hope) infection. I’ve recognised that this has come about due to a number of circumstances (I felt the tattooing to have been a bit harsher that usual; I’m run down at the moment, so healing is harder; I made the mistake of using a cream instead of an ointment); and now that I’ve accepted my predicament, I’ve done everything I should do to ensure that I stop this infection before it gets nasty.

My problem?

I can’t see a doctor until much later today. Generally I thought that things like this are considered important, especially when you take my symptoms into account: inflammation, pain, mild numbness, a slight rash, swollen lymph nodes.

I’d quite like to get this seen to before it goes septic.

I’m more annoyed than usual because I’ve got several tattoos, and piercings, and this has never happened before. I had two done on the same day in fact, and have treated them in the same manner; the other tattoo is healing well.

What tops it for me however, is that nobody will see me ‘out of hours’ (12pm-4pm if you’re at my surgery). I have to go to the A&E or wait to make an appointment for later on this evening. I don’t want to visit the A&E though because I’ll be sitting there for hours when all I need is a prescription for antibiotics. I’m better off waiting to get to my GP later today.

Everything is ‘later’.

Although I’m feeling ghastly about the whole thing, I’m reminding myself to be patient and positive about this. I’m shocked that I can’t get immediate access for something that has the potential to kill me, but I’m okay about it.

That didn’t sound right, did it?

 

UPDATE:

I finally got to see a doctor. I have a course of antibiotics and all shall be fine. The consultation took less than five minutes.