"DON`T AMOUNT TO A HILL OF BEANS IN THIS CRAZY WORLD"

Is autism to blame for Beauty getting up so early in the morning?
Many might blame her sleeping patterns on autism , which have never been that brilliant but I think it is just to do with the light mornings.
Everyone has given me their suggestions , from other parents of children on the spectrum, to teachers,to speech therapists , to every `other` kind of specialist.
I however think it is not to do with her autism but her developmental delays in the sense that in many ways she is like a normally developing 9 year old and in other ways she is just like a toddler.
In this way I think she is just like a toddler.
It is light,she sees the light and then wants to get up.
She has been on every medication you can think of to try and stabilise her sleep patterns but nothing seems to work consistently so I stopped the medication.
Many might think that I should take the medication and be grateful but I really do not want Beauty on medication forever.
OK, they may say the medication is fine now and has no side effects but who really knows?
In 20 years time when she develops some illness linked to the medication, what will the Doctors say then, Oh Sorry, We were told it was OK.
I have been considering painting the glass in her bedroom windows black so she cannot see the dawn.
I know it sounds a bit drastic but she only sleeps in the room so she doesn`t need the light to play in there.
When I suggest this to people they say
`OH Why don`t you use blackout blinds ` ,
I say `You do not know Beauty. She has no sense of danger`.

Monday, 15 February 2010
Two Staffordshire children killed by blind cords

Harrison Joyce's father is campaigning for a ban on looped blind cords
Two children from Staffordshire have been killed in separate incidents by cords attached to blinds.
Sixteen-month-old Lillian Bagnall-Lambe, from Stafford, died on Tuesday after becoming entangled.
Her death follows that of Harrison Joyce, three, who died at his home in Lichfield on 4 February.
Staffordshire Police and the county coroner have issued advice following the deaths, warning parents to be aware of the dangers of dangling cords

So I think that my plan of action is to paint the window black before the summer holidays and see if that works!

And I am sure you are wondering, with all this talk of sleep, why I am not sleeping soundly in my bed!
Well, as usual it is a pain in the b.....ack thing and my back appears to have a voice of its own at the moment and it seems to be screaming in agony.

Definitely painkiller time!

Margo McCaffery is a registered nurse and pioneer of the field of pain management nursing. McCaffery's oft-quoted definition of pain as "whatever the experiencing person says it is, existing whenever and wherever the person say it does" has become the prevailing conceptualisation of pain for clinicians over the past few decades.
I love this quote!
Easy to remember and it can ALWAYS be used in any nursing essay.
I used it in 3 different essays in my nursing final exams.
YET.....if this is the case , why do I and others like me, who are in severe pain, feel as if we are not believed when we say we are in pain?
My opinion is because of the type of funding of the health care that is provided in the UK.
Other countries think that we have Free Health Care for all but that is not true.
When you work , you make contributions that pay for your health care and those who are unable to work have their health care paid for by the state.
Before Beauty was born, the condition of my spine deteriorated rapidly and I was unable to work.
Remember, I had worked as a nurse for the NHS and paid my health care contributions.
So I was entitled to Health Care even though I couldn`t work.
But it is also obvious that there is only a certain amount of money in the Health Care pot and in some circumstances(well most really), the patients suffering most, get treated first and I can see and appreciate this.
Yet, I have spent the last 3 days in bed in agony and today I received a letter from the NHS saying that I had been referred but I was on a waiting list and the patients with the most problems would be seen first.
OK but I am in agony now and I have `severe `(now how many NHS doctors do you know that commit to using the word severe,it must be bad!) arthritis in my spine and disc damage.
So if I could afford to pay, I would be seen now but because I can`t afford it, I must wait.
Plus, before I had the x rays done,I felt as if even with my GP, my level of pain wasn`t appreciated because it couldn`t be seen.
Yet the GP sees an x ray of crunchy,crumbly bones and they can appreciate that the situation is`severe`.
I personally feel sorry for the GP`s.
They have a patient in a lot of pain, they can say THIS IS THE PROBLEM, refer them and know that it is still going to be quite a while before the patient is seen by a consultant.

So,McCaffery's oft-quoted definition of pain as "whatever the experiencing person says it is, "
"don’t amount to a hill of beans in this crazy world”.

‘Ah, Mrs Plankhurst, come in and tell me, did the yoga I recommended help to ease your back pain?’