WRONG after wrong…

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.


completely WRONGED.




  1. This is heart wrenching and heart breaking. I know a little of what you speak, enough any way to sympathize and understand to some degree at least. Sadly the world, at least the medical communities, really just want people like you and I to go away. They don’t know how to solve the problems we face and they really don’t want to splend the time being bothered with or by them. They just want to move on to the ones easier to diagnose and manage because nobody wants to deal with the more complicated scenarios. So we are left to managa as best we can as we watch our health and wholeness slip farther and farther away as time moves on. I wish I had answers for you Helen, but I don’t. I pray and I witness miracles happen sometimes and it’s enough for me to keep moving on and not to give up or in because I know that Someone died a horrible death so that I might live and serve Him. And so I try to eek out what happiness and peace I can find in all the madness. We both have families who love us and want us to continue being a part of their lives, and that is a blessing as I know only too many who have no one. Neither you nor I may be living the life we would have chosen for ourselves, but over time the blessings and miracles add up and something good gurgles up to the surface from underneath all the suffering and we can find ways to be a blessing to others because everyone is fighting some kind of battle even if we know not what it is. So I pray you find that someone, that one dedicated doctor, who’s willing to take over and manage all of your health issues! Love and hugs, Natalie 🙂 ❤

  2. You actually make it appear so easy along with your presentation however I to find this topic to be actually something which I feel I might by no means understand. It sort of feels too complicated and extremely broad for me. I am looking forward in your subsequent publish, I will attempt to get the dangle of it!

    • Alex I simply write as I feel when I feel. I don’t plan or revise. So I suppose all I can say it I felt this. I felt it painfully when I put it on paper. That’s all I ever do.

  3. I’m no longer certain where you are getting your information, but good topic. I needs to spend some time studying much more or figuring out more. Thank you for wonderful info I used to be in search of this info for my mission.

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