Thursday, 29 October 2015

Malware: Analogy explaining M.E. (Myalgic encephalomyelitis)

Over the years, more people than I care to count have asked me to explain how my M.E. (Myalgic encephalomyelitis) affects me, what’s it like, what is it, this illness that has a poor press and bad reputation.

The thing is, they all expect me to have an easily relatable answer, when the medical community can’t even agree on it.

So here’s my analogy:

M.E. is like the next generation malware. It sneaks into your operating system through weaknesses in your firewall you don’t even know you have and it infects your hard drive.

Your firewall launches your anti spyware, your malware detectors, your anti-virus, tasks clogging up the RAM until the whole thing grinds to a halt and stops working like it should.

You run diagnostics, but this malware is sneaky, and you can’t remove what you can’t find.

So, you take your computer to be repaired, but this IT person says they can’t find anything wrong with your computer, tells you to run a scan and it’ll work again.

It doesn’t.

You go back to the repair shop, but this time the technician says the system is fine, you’re just not looking after your programs properly.

Eventually, you go to a different repair man, because whether or not it’s a user error and there’s nothing really wrong, you still can’t get your computer to function like everyone else’s computer.

This new technician might take a look at the computer and refer you to a specialist, because they think that there might be something wrong after all.

And when you get to this specialist, who might agree that yes, there is something wrong with your computer, and that no, you weren’t imagining it and no, it isn’t your fault.

But the specialist tells you, they don’t know how to fix it.

Written by CM @ChucktheGremlyn

Published here with her permission

Saturday, 17 October 2015

What does 'writing' allow you to do?

Writing allows me: to explore ideas mine & other peoples

Writing allows me: to explore my emotions

Writing allows me: to explore my reactions

Writing allows me: to revisit old loves

Writing allows me: to reclaim my past life

Writing allows me: to invent impossible new & yet plausible situations

Writing allows me: to study relationships & record events

Writing allows me: to do things on paper that I wouldn’t do in real life

Writing allows me: to be someone I am not

Writing allows me: to do something I wouldn’t easily do as me

Writing allows me: to take a different perspective

Writing allows me: to be honest

Writing allows me: to be less than truthful

Writing allows me: to be down right deceitful

Writing allows me: to escape

Writing allows me: to let my imagination run wild

Writing allows me: to share my ideas

Writing allows me: to express my thoughts

Writing allows me: to rewrite my past

Writing allows me: to reframe a bad situation

Writing allows me: to take a leap of faith


What does writing allow you to do?

Friday, 16 October 2015

Driving home yesterday along A280, Long Furlong Road, a red kite swooped in low across the path of my car, came to a halt, looped around and hoovered over head, eyeing its prey. Truly a heart stopping moment and looked just like this photo (borrowed)

Wednesday, 9 September 2015

Lucky Strike - Writing exercise

Writing exercise: pick up an everyday object & develop an idea for a short story in 500 words or less. I chose a scarf.

Lucky Strike

All her favourite colours; harsh dark hues, muddy greens and murky grey-blues, with a hint of yellow woven through the weft threads of a lightweight fabric. Neatly rolled to prevent any creases, stored in the middle drawer at the back of the hat stand in the vestibule. A feint hint of jasmine lingered, her much-loved perfume but too sweet for my sensitive nostrils.

I scrunched the fabric tight into a small ball as I tried to make it crumple. As the fabric unwound itself, the colours sprang back flat. I was disappointed, and as unsettled as she was the last time we had met.

She hadn’t expected my visit, ‘you’re an unwelcome presence.’

I hadn’t known how to reply, yet I patted her hand, attempting to mollify her mood and sat down beside her bed. I smiled but didn’t say anything.

Out of nowhere her instructions came thick and fast. ‘I want you to disinter him.’

I blinked. ‘Pardon?’

‘You know… dig him up.’

I pushed my back deeper into the unattractive vinyl armchair, breathed out slow as I folded my hands in my lap. A few age spots visible, I stroked my taut skin over the back of my hand. I looked at her closely, and made positive eye contact, I was unprepared. ‘I’m not sure that’s legal.’

Her spider like fingers batted away my reservations, ‘Oh I’m not bothered with legalities. I want you to gather our combined ashes and throw them into the sea, off Brighton Pier.’

‘Why Brighton Pier?’

‘It’s where we had our honeymoon. Two days and one glorious night, that was all the time he was allowed to take off from National service to marry. He hated National Service. We didn’t have a choice either, the last Saturday in December. No big bash. No money back then. We were hungry but we were happy. It was so cold. Inside the hotel it wasn't much warmer. We almost froze.’

I hadn’t known they were married. I thought John was her partner. She was candid. Lucid. Her blunt matter of fact manner left me perplexed. Her request was unequivocal. I was about to explain my reasoning, ‘I’m not sure that’s quite the right thing to do...’

‘Poppycock girl, you haven’t an ounce of romance in your soul.’

Her request marred my day, as unwanted as a thin grey scum clouding the surface of the washing up bowl filled with unwashed dirty dishes.

Strange isn’t it how the death of a loved one, a favourite aunt, is a problem rather than a solution?

Alongside the scarf I had found a packet of ‘Lucky Strike’ cigarettes. I didn’t know my aunt smoked and neither did her husband John, as far as I knew so why had she placed the packet with this scarf? Who did the cigarette packet belong too? There was one cigarette left and tucked inside a piece of card, in a stylized script a feint grey pencilled note. Unsigned. Forever Yours x.

Friday, 4 September 2015

Shoebox Letters

Exercise: Look outside your window, what do you see? In 100 words or less invent a life story.

This is what I came up with... "Shoebox Letters"

Spirited sisters, Lizzie and Mabel lived long lives at either ends of the globe. Buried in their ninetieth year, now lying side by side they’ll talk to each other for an eternity.

Mabel sheared sheep. Lillian baked bread. Both bore six sons, tall strapping lads who went to war. None came home.

Exchanging long-handwritten letters, comforting expressions in place of hugs and kisses, that breathed life and light into their never-ending devotion.

These treasured possessions. Tokens of love tied with purple ribbon. Badges of honour stored forever in shoeboxs under each metal bed frame, to be found by another.

September Reboot

As kids go back to school and college students move on up to university I’ve decided to declare this month as the start of my new year and I shall attempt to reboot my writing.

No foolish promises.

Just a bucket load of optimism that I can do this… now.

So here goes.

Tuesday, 12 May 2015

A good day in our house

Yesterday was a good day in our house. Actually on reflection it was a great day! C made it in to college, hair, make up & no one would suspect anything was wrong with her.

Not only did C make it in college but she sat one of her exams too, alone in a quiet spot. I can’t fault her college, in fact I shall be forever grateful to them (explain later) last week we submitted a doctors note for a missed exam, and have no idea how that will work out.

After her exam she caught up with a few friends, this is important because college will break up in a few days and friends she made last year will disappear into the university world.

C gets left behind as she battles her illness and works so damn hard to secure her A levels.

When I picked up from college she was happy, animated. We managed to stop at a small store, she got treats and then onwards to a GP appointment. And then she stopped.

Parked herself on the sofa and stayed. Fed and watered she watched catch up TV with me before retiring to bed. Like I said – yesterday was a good day.

Today however is a different matter...

C’s college took a huge gamble in Sept 2013.

I wrote explaining that she had little formal education due to illness. She had not attended school from 13-19! An interview was arranged, they met her, liked her and they accepted her application.

She started college in Sept 2013, three science A levels with no foundation in any of these subjects. She’s bright. She struggles. She loves every second. At first we both thought she was on the up, that she’d conquered her #ME but as the terms progressed it became painfully evident that assumption we had both made was wrong.

Each day is a battle.

Every day she makes an extreme effort.

Exams are based on being fit & able, these 'A' level exams are not easy for someone who has an invisible illness, nor a formal education. The exam timetable is as she puts it... 'is at the arse crack of dawn…’

If all her exams could be afternoon based she stand a better chance of making it into college to sit them.



#ME - Myalgic Encephalomyelitis

#CFS – Chronic fatigue syndrome

#SEID Systemic Exertion Intolerance Disorder – new diagnostic criteria

Sunday, 10 May 2015

Watching Carys #ME #CFS #EDS

I bring her this gold liquid, steaming hot with two sugars and sit at the edge of her bed. I talk to Carys in a soft, soothing tone. To wake her slumbering being with gentle affection is the best I can do but, however well-intentioned my conversation, there is often little or no response. Nothing visible. She does not speak. She remains inert, a slumbering heap unable to glide into this reality.

Watching Carys wake is fascinating, because she's sluggish, slow to come round. This is not her fault, sleep resists her body at night and then waking each morning, at the break of a new day, is virtually impossible. Her body fights her needs both ends of the day. She can’t win; her body sets her up to lose this fight. Melatonin aids her sleepfulness every evening but only tea will revive her.

I attempt to cajole a reaction. ‘Wakey wakey,’ keeping my tone moderate and calm because there’s little point being harsh with her. It wouldn't help. I know that resistance is not her game. Assistance from me is required. Otherwise she will sleep well past mid-day unaware that the morning has slipped through her consciousness.

Her head rolls into view, eyes closed. Her hair remarkably tidy for one who sleeps so poorly. Long lustrous locks of auburn hair tumble, casually framing her delicate face. Features symmetrical on pale white skin, its translucence gives her a ghostly appearance; she closely resembles a corpse of the living dead. A string of red contusions picked then squeezed, dotted along her cheek bone, spoil her porcelain complexion.

Unhurried, in a timorous voice, husky with sleep, she says, ‘I’m getting there.’ Her voice is depleted yet I wonder where ‘there’ is, here or somewhere nicer than this grey heavy morning with its low light level and gloomy greeting?

Mascara clings to her luscious thick lashes, it has not smudged. Fixed yesterday its precision is remarkable, each eyelash separate and defined. At the outer corner of each eye an exquisite flick of eyeliner, her signature kiss, a sweep of perfection. Then her long lashes flutter. She whispers, ‘They’re open.’

I laugh, ‘I’d love to see how they look closed.’ My fake sarcasm is lost to her, because if she was awake she would bite with a quick retort. If I listen I can hear a familiar nasal sound, a shallow soft whistle, she breathes the same way a slumbering cat does.

The shutters open, peering into the bright light to reveal dead tired eyes devoid of sentiment as her eyelids flicker with heaviness. Initial acknowledgement over her drawbridge slides shut. Nothing. Not a murmur.

A kind nudge rocks her body. I wait. Patient. She mumbles a disjointed sentence, almost inaudible. ‘What was that?’ I ask but she does not repeat her comment. We fail to communicate. The moment passes. ‘Tea.’ I offer.

Her eyeballs roll round in their sockets, drunk or dizzy until she pulls them into focus. She has the look of a lost soul, sad, and bereft of liveliness. It’s disconcerting to observe, but I can see she’s warm, snuggled under her duvet and I know she’s in no hurry to surface. I indulge her whim and give her a few more moments.
‘Hmmm.’ Her hand surfaces from beneath the cover. A long thin arm stretches out unseeing; it doubles back, bends and searches the bedside table until her hand locates the mug.

I watch, still and attentive. Ready to react if needed.

Fingers touch the prized object, unfurl and then curl round the overlarge cup. She holds it, lifts it, and brings the mug to rest on her chest. Her eyes are still shut. This practiced action has been repeated over many mornings until she has it down to a fine art as her additional ability of double-jointedness allows a reach of hand span that I could never match. Her lips pucker as her head rises from the pillow. She sips and tastes the first few drops of nectar. Eyes screw up tight and her nose wrinkles in disapproval, her relaxed expression is suddenly replaced, she wears the pain as an old lady might hug a shawl tight. ‘What’s that beeping noise?’

‘A lorry reversing.’

Her hand pushes loose strands of hair behind her ear; two tiny diamond studs sit close to each other, one pink star and one turquoise triangle. Pretty and sweet. They nestle in her ear lobe, undisturbed by the pale untanned fingers that secure the stray locks.

The lorry stops. The unpleasant jolt of noise that jarred her senses ceases allowing her facial muscles to relax again. Then she squints. Another reviving sip of tea is gulped.

Eyes open one at a time. Then one closes as the other opens, as if she’s testing the mechanism, checking it still operates. Black pools, deep and dark stare at me. Lips thin and devoid of colour murmur, ‘Morning.’ She smiles a tight-lipped smile. The dimple in her left cheek is the opposite of mine. But her eyelids fail to stay open.
‘Sleep well?’
‘Not sure.’ She huffs, ‘My dream was weird. It doesn't make sense. I’m not sure I want to remember it. Was a bit scary, I think.’

I don’t pry. I don’t encourage her to revisit this hazy memory in case it unsettles her, spoils her cheerful mood.

Carys cracks her knuckles. I shudder, ‘Please don’t do that… you know I can’t stand hearing you crack your bones.’ I want to retch. ‘That noise sickens me.’

Her eyelashes flicker in my direction, ‘Soz,’ her playful manner of apologizing pretending to be sheepish amuses me.

Long slender fingers flex and hyper extend before they walk up her face, each fingertip painted teal reminding me of Bella, her pet tarantula. Deliberate steps stroll until they reach the bridge of her nose then she softly picks the crusted sleep from the corner of each eye. The twisted leather bangle with its collection of tiny charms, jangles, as her arm settles back on the covers. Her bed layered with a heavy winter quilt covered with a home-made crocheted blanket. A hotch potch of bright jewel colours from a bygone era, her treasured possession, a bargain found at a local charity shop.

She peers, strains to see, adjusts to the light and then one eye opens less slowly, followed by the other until they stay open.

She’s back, not fully functioning but willing to communicate. Not yet able to leap out of bed but beyond the point of falling back to sleep on auto pilot. She tugs at the pillows, plumps them in to a shape that supports her neck. She nestles back, smiles a wide silly grin. Carys looks happy, relaxed, perhaps she’s ready to answer questions, but best of all she has woken in a good mood. She wrinkles her nose, ‘Can I smell porridge?’

She does her best to roll her body up and sit at the edge of the bed inelegantly as she tenses her muscles, sitting knock-kneed and pigeon toed so that her legs won’t fall open and splay apart. Her hands rest on her knees, the silver rings on her fingers she searches out on good days, at vintage fairs or flea markets, are striking modern designs which aren't too hard to find.
She rubs her knees, ‘They ache.’
‘Is there anything I can do?’
‘Nah. I’ll take some tablets.’
‘How’s your head this morning?’
‘Bit groggy. Nothing more than usual.’ She manipulates the pale flesh around her knee cap with gentle persuasion, an attempt to relieve this reoccurring pain. Walking into walls happens quite often, her body impacts the door jam and she bounces off in the same way a drunk meanders down the street, after a heavy session of drinking.

On rare occasions she points at an object, her finger stabbing the air in frustration, ‘what is that called,’ she asks the escalating annoyance isn't hard to miss, ‘I know what it is but I can’t bring forward ‘that’ word.’

I suggest, ‘think of an alternative word.’ But her speech slurs. I can’t make out what she says. ‘It’s a dressing table, Carys.’ I try to remain sensitive to her needs and be gracious; I’m grateful because living alongside Carys’ illness has been an ordeal of anguish over torment. I often become frustrated by my own lack of power and watch helpless as I can not repair the debilitating limitations this condition imposes and I can not undo what is done. Week by week. Month by month. Another small step forward, her health imperceptibly improves. Is she getting better?

I’m in awe of her resilient attitude. She rarely gets down or depressed: she does get confused, even dazed, especially back in the early days when she used to take a tumble and fall down the last few steps of the stairs to land in a tangled heap at the bottom, battered and a little bruised. Stumbling used to happen often when she couldn't put her feet down flat, but on the last occasion she made a feeble attempt to kick a book out of her way, she lost her footing. Fortunately she didn't require hospitalization. Clumsy doesn't come into it, she suffers from a lack of coordination that a professional clown would admire, as her ligaments develop fast, too long and loose in her rapidly growing body, so she collects an array of odd shaped dark bruises, badges of honour.

‘You need to get up,’ as I hand her the bowl of porridge, and hope the smell of warm familiarity will entice her to sit upright, ‘you have an appointment with your Craniologist.’

Carys beams at me, her eyes glisten with enthusiasm, ‘Goodie, I always feel better after she’s straightened me out, I’ll get dressed, promise.’

‘Do you need me to remind you?’ I know her memory can be poor; she has a frighteningly short attention span and often acts the same way I would expect an elderly woman with a touch of Alzheimer’s to behave.

‘No. I’m good. I won’t forget. I've set the alarm on my phone.’ She glances sideways to where her phone sits on the nightstand, she’s grinning from ear to ear, the smug smile of a happy soul. I leave the room to give her some privacy.

As I go downstairs I remember the dark days when I used to walk in front of her and she would place her hands on my shoulders. Each step was deliberate, slow and methodical. In a happy voice, I would sing, ‘me and my shadow walking down the avenue,’ and joke that if she fell… at least she would land on something soft. Me.

I for one am grateful that we no longer need to do the soft shoe shuffle, when she was too afraid to allow her feet to leave the floor, walking as an octogenarian might, in slippers, that scuff, then drag against the hard wooden surface of this polished floor. Afraid that if her foot raises itself above this slippery surface, it might not make positive contact ever again.

Sometime later she appears at the door of the kitchen, fully dressed. Her hair plaited in a loose elegant twist and her eye makeup exquisitely reapplied. She looks fresh and young wearing jeans and a silly monkey t-shirt, her favourite and I don’t comment about her odd mis-matched Converse boots, one blue and one black. Perhaps this choice is intentional. Her personal fashion statement. ‘I’m ready.’ Her dazzling smile, the harsh red lipstick heightens the brightness of her even white teeth.

Carys is animated, talking non-stop, covering a broad range of topics as I drive her to the surgery. She starts out chatting about dictators across the world and I listen, fascinated, hearing everything she has to say, her potted history about despots. I store this information away for another day. And then with a quick flick she changes direction. ‘I've decided…to be a surgeon. No really, I shall be a Doctor. I’m going to Edinburgh Medical College. I’m going to apply, see if they will accept me now that I’m doing my Open University course, it should act as leverage even though I've only one ‘O’ level.’

I smile, note a hint of melancholy in her tone, as her voice drops, but say little except to murmur a brief word of encouragement, ‘that’s great,’ I’m please for her. ‘It’s good to have ambition.’ I know she’s a clever girl but I wonder is this specific aspiration is possible? I've no desire to dampen her mood or be the one to crush her dreams. Still a teenager… just, I send out a silent prayer that this brilliant, vibrant woman will soon be free of pain.


To date my prayer is unanswered.

#ME - Myalgic Encephalomyelitis
#CFS - Chronic Fatigue Syndrome
#ME/CFS - as above
#SEID = Systemic Exertion Intolerance Disorder – new diagnostic criteria

#EDS - Ehlers Danlos Syndrome

Monday, 23 March 2015

Red Kites

On a day when
barely a branch moves on the
four Red Kites
circle overhead
wings outstretched
with grace and clarity
they glide, an
effortless ride in
never ending circles

Saturday, 21 March 2015

Holy Cows

This morning over a cup of coffee I saw cows, perhaps bullocks, charge down a narrow track into a wide open expanse of a lush green field. A full on stampede ensued across the breadth of the fresh meadow grass until herded into the furthest corner they turned en masse and charged back across the field to where the farmer stood and had let them loose.

The chase was on as groups of cows ran one way then another, it was definitely a special spring equinox day, hooves were flicked and kicked high, a few galloped almost as fast as thoroughbred race horses.

Others gambolled along the hedgerow, and a few turned into pogo cows boing-ing about the place on fully wound up springs.

As the skipping and jumping continued a few locked horns, well lowered heads and playfully butted each other before suddenly splintering off to charge in different directions. It wasn't a contest or a hostile act, more an acknowledgement or introduction- so this is what you do in a big green field after being locked up in a barn all winter.

Once the high jinx had run their course all heads lowered to the ground to munch the fresh greens on offer.

It's gone quiet in the field now, no more a crescendo of hooves on semi packed earth. There was a definite sense of new found freedom in the air this morning as these lovely creatures thundered down the track and I feel very privileged to have witnessed this small event.

Thursday, 29 January 2015

Unexpectedness…A strange notion

Nothing in life is certain and the older I get, the more I realize that within reason most ‘events’ in life are beyond my control and my life is about unexpectedness.

I have choices.

This morning I chose to sort out my airing cupboard. It’s an easy, simple task that centres me as I’ve always enjoy doing laundry …cool clean sheets do it for me! I’d seen some beautiful bed linen and I thought it might be wise to check whether I did need to buy it or need to splurge or more simply want new linen.

It turns out I’ve plenty of bed linen but on closer inspection it’s getting old and tired and in fact some of it definitely could do with being retired.

Almost all of my time I’m a full time support/carer of a young vibrant woman and most days my expectations are modified by external issues not directly related to me.

Each day now is about ‘unexpectedness.’ I may have an overall plan but that can change in an instance, and this new-revised-situation no longer knocks me off course.

I’ve adjusted to the uncertainty and the surprise of not being where I thought I might be… according to the overall plan. As a full time caregiver I’ve learned that I’ve absolutely no control over my 'caree’s' condition. However, I do adjust how I react to each new day’s events as my days often consist of some happenstance whereas other days might flow as usual.

I no longer have a ‘to-do list’- it got scratched a while back, it’s too frustrating to watch a list grow, with little hope of changing things.

Sleep is always a priority and exercise for me is moderated to avoid flare-ups. With enough sleep I’m human. Without sufficient sleep I’m not worth knowing as I function well below par. I dislike those grouchy-fug-filled-days most. last night for some reason my brain would not shut up talking to me so this morning I'm a more tired and functioning slightly below par.

So I’ve decided that throughout 2015 I’m going to dedicate more passion to everything I do, even to my chores. I’ve one life, one chance and I’m going to live ‘my life’ with passion.

Now I make Choices! This freshly drafted list of choices has a balance of happy events and some tasks. I rationalize which are more important and pick two.

Events have just taken another turn for the unexpected... I find I've more free time than originally planned.