Adapt or Die

Entropy – Copyright Sam Russell 2013

I think change is a beautiful thing. I’d hate to be stuck in the same pattern and denied variation.

This Year…

I have completed reading thirty books and have thumbed through twenty or so more. I spent two months bed bound because of Fibromyalgia and ME. Those were pretty miserable times. At one point, I got carted off to A&E because I was having real problems breathing.

This year I have become more of a hermit than I've ever been and experienced some of the worst episodes of anxiety and panic than I have in my entire life.

I've spent days thinking about quitting my novel and hours writing crappy short stories. I've had an article published in InkSpill Magazine, something that I'm really proud of. I've had three rejections. I was hoping to have got myself out there a bit more but considering my circumstances…

After my time stuck in bed, which lasted from the end of July to the first two weeks of September, I found my mobility to be less than ideal. It was less to do with muscle deterioration and more to do with the Fibro relapses which have become more potent, resulting in me moving around less and when I do, having to use a stick to give myself some extra stability.

Since September, because of the relapse, I have been undergoing as many tests as possible to find out if there's nothing more to this Fibro / ME / CFS lark. Turns out there's something concrete going on after all and I still have further specialists to consult. Bases = covered.

This year I've gone mad twice and suffered from serious bouts of depression. I've put on weight due to not being able to move about as much and comfort eating because I feel terrible.

Speaking of food, I've adapted my diet. It conflicts with my ideas but I've taken to eating meat produce again to see if it helps with my conditions. It has and it hasn't. I've discovered a possible sensitivity or intolerance to wheat and gluten which comes with the job description when you have what I have. Yesterday I found that quickly cooking up diced mushrooms with cumin seeds and layering them in a whole capsicum pepper with brie and a bit of seasoning, then baking the lot for ten minutes, is an awesome dinner.

I turned 28 and enjoyed my birthday for the first time in over a decade. I've spent Christmas with my Dad. I've lost friends, realised acquaintances, made new connections and seen for myself who my true friends are.

I've given too much of myself to others and am yet to develop the ability to create stable boundaries.

I've seen complete crap on TV and read some utter tripe. But I've watched the Harry Potter films over a dozen times, and fallen asleep to the sound of Brian Cox talking about the universe more times than I can recall.

I survived the end of the world, along with the rest of the world.

A woman in a hospital waiting area made a comment about my being in a wheelchair on my way to the outpatients area, and 'clearly having nothing wrong' with me. I took that one to heart.

I've looked in the mirror and seen myself as what a heroine addict might look like in a film: pale, bloodshot eyes, black rings, miserable.

Two of my dogs have passed on.

My Dad and I have spent a lot more time together and had some real laughs. We switched rooms so that I have a warmer environment. Not that the room I was in was ever cold; it was me – the ME. Dad has gone above and beyond his mortality to be there for me.

I've found my way back into therapy and watched it fail because of conflicting requirements.

I busted a gut for one of my dearest friends and helped her reach the first stage of her dream. Because to me, that's what friends do.

I've met my great-niece and fallen for her even though I'm not a 'kid' person. She's just like her Mum.

Despite all of my efforts, the calls to the Samaritans, the drive and desire to learn, write, improve my lot and get my life back, I have never felt so isolated, frightened and dejected.

These are the things I can remember about 2012.

What do I want in 2013?

Treatment. Friends. A new home. A fresh start. A finished book. A published story. A pug. The ability to walk for more than ten minutes before feeling extreme pain and exhaustion. Decent nights asleep and pleasant dreams. Love. Recovery. Privacy. Books. Knowledge. Memory. Self-security and confidence.

That and probably some more. A handful are material.

I was in a local coffee house with my Dad the day before Christmas Eve. We overheard a conversation where an individual was describing exactly what they were getting for Christmas: very expensive, pointless items basically. I turned to my Dad over my cup of mint tea and said

All I want for Christmas is my health back.

I'm grateful for everything that I have and all the things that have happened this year, both incredible and difficult. Everything has helped me grow and decide my path for not just 2013 but the rest of my life. My life.

This year I lived to the best of my abilities and to my own standards and ideals.

Photo: Copyright by Moyan Brenn

Posted with Blogsy

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.

 

1 in 7 Billion

Hi.

I don’t know you, have no idea where you are, whether you’re living or dead, and you know just as little about me. But the thing is, I love you and I know you’re somewhere.

We’re made for one another so in the event that we finally meet, we’ll know.

The difficult part is trying not to sound rigid when I say this: one thing I know is that you’re female. You always are.

I’m female on the outside too at the moment, but I know you’ll look beyond my skin and see the man inside. And you’ll appreciate the woman in me too whilst I rest in the arms of your masculinity. Together, we’re no spectrum but a universe, a complement without the necessity of being complete.

Whatever we’ve both done in the past that has put us here were we are now, I don’t think it will keep us apart. If we don’t find one another in this life, we’ll try again in the next.

I’ll never give up because I have so much to give to you, and I need you more than anything.

I hope that we’ll cross paths in the next few decades (sooner rather than later) but until then, all you need to know is that I’m here and ready to settle and learn. I’m sorry in advance for how tough it’ll be, but i know you’ll understand and we’ll love each other all the more for it.

I’m here.

“Evangeline, hold me once more / and then never look back

Evangeline, kiss me like that / how will I ever forget?”

‘Into the Derelict Night’ from Explorer by Cerys Matthews

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.

Anger vs. Ah, I shouldn’t have said that…

I say some terrible things a lot of the time. I get irritable and snappy. Frustration; disbelief; confusion; fear.

I’m a cocktail of unrealised self-loathing at the best of times, and then I go and lose my temper, and losing your temper can be roughly translated into:

Becoming so overwhelmed by the awesomeness of your shock and sudden idiocy brought about by said shock, you instantly fail to recognise the people around you as people and thus treat them as objects to be abused in various ways that might include but are not exclusive to screaming, swearing, throwing crockery, punching/slapping, threatening divorce/break-up, guilt-tripping, silent treatment, and degradation of the spirit.

A lot of my unleashed fury is projection; not being in control of my emotional life is distressing and who better to take it out on than the one who happens to be in the wrong place at the perfect time?

It’s their fault that I’m frustrated, it’s their fault that I’m so pissed off and they’re the ones who always bring me down. They’re also the ones who can’t cope in the world, are avoiding their issues and are emotionally stunted in some way or another. They’re also the ones with a shoddy memory, and complicated framework of desire, and an insatiable but aimless thirst for knowledge, propped up by a shoddy memory that barely clings to its unhinged home.

The Blame Game is one of the most successful forms of self-annihilating entertainment of our age. Asides from Cluedo, this addictive battle of apathy hasn’t been exploited to its full potential. Perhaps it’s because the reality is too painful to admit: no one is to blame.

I’ve just finished reading Why Be Happy When You Could Be Normal? by Jeanette Winterson. She has gone through some very difficult times indeed and has dealt with more anger than I can shake a stick at, but she doesn’t really blame anyone; people have certainly been an influence in the outcome of her life thus far, but she doesn’t resent them for it.

She doesn’t blame her biological mother for giving her up

I don’t mind. I certainly don’t blame her. I think she did the only thing she could do. I was her message in a bottle thrown overboard.

Neither does she blame her adoptive mother, the overpowering Mrs Winterson, for the life that she has lead up to this day

And I do know, really know, that Mrs W gave me what she could too – it was a dark gift but not a useless one.

I try to make the conscious effort to stop myself from blaming others, for projecting my own insecurities onto those I love. It’s not an overnight event. This sort of patience, mindfulness and recognition takes years to achieve. Can I be bothered?

I can. I’ve had enough of fighting and hurt feelings. Those things make you sick.

Anger is nothing more than a pallet of difficult, different coloured emotions. The least I can do is paint a pretty picture with it, and bypass the guilt of opening my stupid, uncontrollable mouth at the same time.

Forget I said anything

I thought I was overdue for a winding, miserable post, so here it is.

I’ve probably said it before but there’s only so much smiling and ‘happy-happy’ I can do before I want to drop the facade and do something out-of-character. A lot of people will tout inner peace and personal responsibility, blah-blah, and so they should. Those things are good. My gripe, the cynic that I am, lies in the obvious problem with this type of thinking.

Inner peace is all fine and dandy but why neglect the world outside of that ‘inner-ness’? I think, no wait – I know – that real happiness comes from not just our attitudes but also from our surrounding circumstances. What good is a warm, cosy feeling in the bottom of your gut when you’re in an unhappy relationship? Does serenity alone really negate constant disappointment?

I suppose it could be said that being in a better state of mind when going through those things helps but how long can they hold for? The environment finds its way in eventually.

I try to adapt. I try to change my circumstances where I can. I put up with the things that I can’t do anything about (at the moment). How long do I have to wait for these things to bear me fruit?

And here’s the emo tag.

I’m without a voice, still, despite everything I’ve done to grow one. But you have a voice here, you say.

And who hears it?

Who listens to me when I express concern, anxiety, frustration, or my desire to do things my way?

Only the people who tell me to smile and do it their way.

But having the attitude I have, I’m optimistic that I’ll break free of all this tripe of my own accord.

I keep a secret

I’m curious about what it means to keep a secret. The one I have isn’t a revelation but it has great personal significance and risk for me. It’s not something that I’ve been told but rather something that I’ve come to realise myself. Are your own secrets the hardest ones to keep? I’m getting a head of myself.

I keep a secret which means I hold it, act as guardian to it and conceal it from others. I prevent it from becoming common knowledge. I watch over it, prevent it from ‘being’ anything other than a phrase or image in the corner of my mind, only resurfacing if it’s touched by events, people, or words.

I allow the secret complete residence of my mind, the sanctuary of my forgetting and the dangers of being revealed.

To keep a secret is to harbour a fugitive. What if I gave it up? Would it ever trust me again?

What would happen if the secret was heard? I see myself letting it slip to all the right people, namely those who aren’t supposed to know, and watching as the world around me changes. Secrets are transformative; perhaps this secret holds my unravelling, my destruction, or perhaps it holds a moment of recognition. Maybe if I told the right person it would alter my life for the good. Is that a risk I want to take?

Back to my first thought: are your own secrets the hardest to keep? If you bear a secret belonging to someone else, what are the chances that you’ll tell someone? I carry secrets from years ago and I doubt I would ever give them up, even for personal gain (Note: extremes of torture may well make me part with them but I’d do so reluctantly and only after a good thrashing. Depending on how I coped, I might take most of them to my grave in such an event).

Keeping my own secret is harder; I want to share it, I want it resolved, I want to be reassured that my secret could garner a positive outcome. More than anything, I want to indulge in the fantasy of my secret; I want to hope that this could be real. Maybe that’s why we all kiss and tell.

And when the secret is released? It loses its power. But for me, the significance remains. Just because I’ve shard it with someone, it doesn’t mean it’s any less important to me.

When the morning comes, we will have faith again…

The art of learning any lesson is to get down off your horse and suck ‘it’ up. Of course it isn’t as cruel as it sounds (although sometimes it’s a trial).

How many years have passed? I’m still learning. I’m still learning that I need to let go not only of past hurts but also things that haven’t even happened yet – the notorious Future Worries.

I’m still learning that with every episode of insanity (for want of more apt term, although I’m quite fond of reclaiming it seeing as people are so terrified of it now) an episode of reprieve will follow; the disconnection itself is not the problem, but the feelings of dread and sickness are.

I understand, now that I’ve let off a little emotional steam, that it’s been several weeks since my last bout of ‘not on this planet’ which lends reason to why I’ve struggled with it for the past five days. Regularity breeds familiarity, breeds ability to cope? I’d not like to suggest learned helplessness.

(But why does becoming familiar with difficulty mean learning helplessness? I’m not helpless, I’m off my rocker and quite happy about it! It still astounds me how even the most subtle and apparently caring language can disable anyone who acts or exists contrary to the status quo; enrich your minds and read Foucault.)

Having been so long since the last time, I’ve virtually forgotten the ecstatic euphoria, the hunger to read and learn, the fascination with the shapes and colours of the world around me; the pink rose that looked like a sodden wedding serviette, the fence that was missing new paint in a very haphazard place that took on the shape of a cat and the old telephone poles that intersected the brilliant skies with their thick wires and housed jars filled with ancient, glowing insects.

And then the sudden thrashing of the mind as it begins to become too aware of the immediacy of the world. Coming back to a dull, unnoticing reality when you have spent days in stunning places free from worry and despair is a grim shock.

I don’t blame myself for having such a difficult time.

To return is to make a mental note detailing how to land on your feet:

• Always have herbal tea at the ready
• Don’t fear cancellations
• Keep warm
• Eat foods which bring comfort
• Read a book which confirms your reality
• Sleep lightly through the day
• Avoid television at all costs
• Listen to music that feeds your soul
• Become aware of the world again through the radio (BBC Radio 4 is my choice)
• Don’t rush back to socializing
• Re-familiarise yourself with pets as they are much more understanding that humans
• Have a cry if you need to
• Speak truth
• Ask a true friend to confirm love
• Harbour no resentment for yourself, or any other being

These things happen and I have a choice to make now that my head is clearing: shall I fall into misery or shall I sit gently, allow myself to recover and come through this more prepared for the next wave?

Interestingly…

… in light of the debates thrown up by Stephen Hawking, if god does exist and created the universe, does it even matter?

I’m listening to BBC Radio 4′s Question Time and one caller has just spoken about people following science, following religion etc.

But – people don’t follow science; science tells us not to have unprotected sex with strangers, it tells us not to smoke because it can kill us and it tells us to stop disforesting the planet because it’s causing massive problems, but we don’t follow these morsels of scientific wisdom.

So if we don’t follow science, even though we know it to exist and contain truth, isn’t it a little arrogant to believe that if the existence of god were to be proven, we would be obliged to follow?

There are X billion people on this planet and each one of us is different. Science, god, mathematics, language, philosophy and even the arts are homogenizing forces (without getting into a nasty muddle here) that betray the simple truth that everyone is different.

I think, personally, that any facet of human thought and creativity that allows this to be known and respected is a step in the right direction; anything that starts preaching ‘obey’ needs to be looked at carefully.

Of course this creates a bit of a pickle when you get onto the subject of climate change and the associated noise circling the issues. I believe we should protect our planet because despite science and god, this is pretty much the only one we have for the foreseeable future, which isn’t looking so rosy at the moment.

I also believe that there’s a need to separate ‘climate change’ from ‘environmental destruction’; we may not be responsible for long-term climate change, or evolution, and it’s very difficult to say that we are responsible for it because we might not have the complete picture. Records began when? 1700-1800? Do we know the entire history of our planet?

This may sound like I’m on the bandwagon with all those who are trying to derail the climate change movement, but I’m not. I simply think the language needs to be changed.

What we can be certain of is that we are responsible for environmental destruction; we de-forest, we plunder natural resources, we pollute water sources, we allow the spread of chemicals and toxic waste, we exploit animals for food and materials, we exploit other people for goods and leave them in poverty; we waste and ignore, we destroy our own foundations for momentary gain and profit.

These things have nothing to do with climate change; they have everything to do with us. And if this behaviour continues?

I doubt very much that the few who survive in the future once the earth is a barren dust ball, devoid of the complex eco system we’re only just clinging to now, they’ll be sitting there with a smug look on their face saying: “ah, but the world didn’t end because of climate change.”

My thinking is probably full of holes but that doesn’t stop me believing that we should take responsibility and look after ourselves, each other, the planet and everything that exists on it.