There is only so much a person can cope with – a well person, with a voice articulate enough to stand up and be heard… and a platform to speak on.
THIS is now my only platform.
I have a rare medical condition, or several rare conditions. That means I need specialist care for many aspects of my life and health.
There is so much less LIFE available to the disabled person. Less energy to battle, yet being constantly measured, evaluated, planned for – ALL by people who do not walk in your shoes. People who rarely look you in the eye, as they deliver a “financially guarded” diagnosis on the “bit” of your life they have to.
i have been LUCKY in many of the specialists i have ended up with . GENUINELY!
but LUCKY does not tell the years of exhausting, pain-filled battling to get seen by the right specialist, through some arrogant and indifferent layers who clearly do NOT CARE then one who listens, and is willing to TALK- engage with YOU – as a partner.
but however LUCKY i am while juggling 6 different consultants it is virtually impossible NOT to become the JIGSAW you were back at GP level – back pain, neck pain, headaches…all individually “medicated” – my silent voice SCREAMING, “STOP SEEING ME AS A JIGSAW. I AM ONE PERSON… LOOK….PLEASE!….
i NEED to HAVE an overall outside the box thinker – yes- like i USED to be able to think, one of my SPECIALISTS to TAKE the OVERALL summation of all my ailments, and JOIN the dots . i KNOW it is POSSIBLE. i KNOW there are a few of my consultants well up to the job… i THINK that i even know the one who might jump in and take charge
but will he? will they all stay there? Keep charge? When other symptoms appear?
dignity? gone LONG in the begging you must regularly do to keep people on-board.
but i don’t mind begging.
Begging is what you do, when you translate your medical needs to the Emotional Side of medicine… The SOCIAL WORKER …a medical, but caring role. the face of medical care which deals with LIFE – that evaluates the effects of your conditions on you, your family of how life has changed.
more forms and questions than seems fair to a fatigued unwell patient.
and months and months and many different social workers. SEEING my life between the multiple appointments. as it is.
Invasive and some so completely irrelevant to me – the questions which make you wonder is this form FOR me? for people like me? Forms.
you open your entire life each time a new strand appears .Long after dignity was lost there was no time to recover it, you must be open, completely.
vulnerability is completely called for – and tears are not even optional, YOU are being valued…streaming tears as you “word” the life…
- you speak of the burden you are to ALL around you.
- the years of complete dependence
- all your health conditions and complications these mean.
- your children are interviewed
- your OH/Carer. Care-worn, and punch-drunk with the force all has been thrown to him to manage as he goes about daily life being both of us.
- The IRONY – if i were dead, he would be both parents, yet while i am ILL he is expected to be both mother&father & CARER 24/7….from wakening me i morning, to adjusting my ventilator at night…and ALL the hours in between…
our case is very COMPLICATED. told that from the outset, in fact WE reported that.
And now finally we have our measure, our help…
- the help that will rediscover ME
- me-with independence – for the first time in 3 years and 5 months
- i regain my HUSBAND, as my partner, not my nurse
- my family can relax and ENJOY each other
- enjoy a LIFE together.
but the forms translate into number punching, and I translate to a person who needs no HELP… nothing more than a normal healthy person would.
i am a ZERO.
but the input my family put into making my life as it is, manageable- that work which makes me humbled at every step….
MEDICINE – scrutiny – social care – they must have simply been ERASED!
as if my life was NOT the one examined!
WRONG at each layer.
WRONG after wrong.