ON THE BENCH

 

The chronically ill and their carers fondly recall the days when they could relax. They get to hear so much about how the lucky ones go out: a café stop on a long drive; relaxing with friends in a pub; being waited on in a restaurant; riding a train through magnificent landscape; on the beach, and oh, what a beautiful sunset; or a to show, to a museum, to an art gallery, whiling away the hours, uninterrupted!…and so on.

Well...Bollocks!

They don't seem to understand how miserable hearing of others having such good times makes us feel.  We just wish they could dial back a bit on the lurid detail.

Bitter, eh?

Yeah….I know I’ve run similar stories before, but far fewer that the countless reminders from OTHERS all over Facebook, for instance, who live the good life, all that shite.

They're not to know, of course. 

As it is, all we can talk about - reluctantly - is our miserable life. So we don't, generally.

Lovely corner of our patio - opposite the bench.

But now and again, like now, it bubbles over. Got to let it out.

The daily routine of the room bound patient confined to home… forever?

Well, we don’t know…certainly half a life so far.

For our very intelligent, clever girl. University degree with the World at her feet.

Instead, she has lain still in bed for years. Sensory issues rule out contact with anyone, even friends.

 No radio, no TV, no longer reads. Occasionally listens to quiet, meditative music. Will smile sometimes, if I can get away with daft antics.

 Why so ill? Well, there’s a faulty gene at work, yet to be identified. There are many terrible conditions and they are not all life-threatening. But nevertheless, you may as well be serving life. 

Take this lot, for instance.

Medical condition: EDS (Ehlers Danlos Syndrome) results in bendy limbs, weak connective tissue – movement causes pain.

POTS: Postural Orthostatic Tachycardia – (movement results in adrenalin rush, and corresponding drop in blood pressure – light headed, dizziness, risk of feinting.

Autistic –meaning you are neuro diverse which sets you at odds with the ways of the world, in particular the accepted norms of social behaviour which are absolute foreign to an autistic person.

To cope they will mask their feelings, they will act, copy others to fit in. But there are no Oscars for this performance which comes with a heavy price and leads to intense fatigue.

And there are the sensory issues effecting hearing - everything is too loud; sight- everything is too bright); and extreme anxiety is way beyond the norm and which effectively cannot be countenanced by “feeling the fear and doing it anyway,” as one doctor who knew nothing opined. Not surprising that this leads to mental health issues the so-called mental health professionals dispute.

What else?  PDA (Pathological Demand Avoidance) means avoiding doing anything at all;    

OCD (Obsessive Compulsion Disorder) compelled to have tasks done in a very particular way).

Hypo-glycaemia ..When body sugar levels drop alarmingly, resulting in hallucinations – corrected by immediate intake of food.

To the few doctors who have helped, thank you.

To the many more, some we have had the misfortune to engage with and the many more we have heard about, who deny EDS and POTS exist. I would risk a custodial sentence if you ever cross my path.

And so, instead of going out, of living, sufferers can expect to spend their life “on the bench” – with little chance of getting to play - while their carers remain confined to living in an open prison.

Try this sequence, running 24 hours a day 365 days a year, including public holidays. It should provide a taste.

Our cared for daughter spends her waking hours in bed, as do many thousands of others in similar horrible circumstances, unseen, in rooms in homes around the world.

Ignored by your local surgery despite everything being on record. Unless you have cause to request a consultation for a run of the mill infection in need of anti-biotics, for instance.

The day begins with text message requests for service of one essential thing or another,   which will run at intervals of between 10 minutes up to an hour, transmitted to carers on standby below.

Start can begin any time from between 9.30am through to 1pm thro to and run to 1 or 2am next morning.

Here we go……..

Carrot juice, vitamins; curtains drawn on larger of two windows.

Upstairs and downstairs…. (For the carers).

Buttered Toast

Upstairs and down

Complan, and tray.

*Bucket (empty commode), turn the radiator down.

Up and down the stairs

Boxes (small boxes wrapped in cling film), used to wrap around wrists – response to allergies when using the toile.

Up and down stairs

Top-up two humidifiers

Up and down stairs

More Evian bottled water

Curtains drawn on larger of two windows

Blind half-way up one window

Upstairs, downstairs.

Baked potato in (means put in oven)

Up and down stairs

Blind all the way up

Curtains drawn on other window

Up and down stairs

Baked potato and homemade chicken and vegetable soup served

Up and down stairs

Wedge – to raise legs to aid circulation while lying on bed

Up and down stairs

Wraps (wraps for neck, heated in microwave)

Up and down stairs

Tea with sugar

Blind up, all the way up on the other window

Up stairs and down stairs

Complan

Upstairs and downstairs

Next, it’s Berries

Ice, bag full of ice for face massage

Upstairs and down again

Chicken juice

Empty the Bucket – the commode.

Upstairs and down

Boxes

Upstairs and down

Porridge

Up and down

Bottled water

Muffins

Up and down stairs

Top up humidifiers

Up and down stairs

Blinds down

Curtains drawn

Up and down stairs

Final wraps.

1am. Goodnight.

I had hoped to finish this beast of a piece in 666 words, but have overrun that.