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